tag:blogger.com,1999:blog-23993298977981133382024-03-28T07:10:04.261+00:00Tales of Life with Multiple SclerosisIn 2002 I got the earth shattering news that I could possibly have Multiple Sclerosis. In 2003 that news was confirmed. I was 29 years old. I wanted to start this blog to go over the last few years of dealing with this illness and look forward to the future as it happens. If I can give hope to just one person, that life isn't over when you get life changing news, then this will have been worthwhile!Ameliahttp://www.blogger.com/profile/15005720150574964538noreply@blogger.comBlogger203125tag:blogger.com,1999:blog-2399329897798113338.post-59647938301714091762024-03-21T11:47:00.000+00:002024-03-21T11:47:39.687+00:00At last!<div><br></div>At last........I have finally had my lidocaine infusion! <div><br></div><div>It was about two weeks ago, and I am feeling about as good as it gets for me π€©<div>It always takes a few days for the infusion to kick in, so the first two or three days I am pretty wiped out, because of my body's reaction to having such a hit of medication. I really do notice a difference when the lidocaine gets into my system though. The constant buzzing, the burning sensation in my back and the painful altered sensations all die down. None of it goes away but it gets a little less intense and allows me to function a little better.</div><div><div><br></div><div>While I was waiting for my lidocaine infusion, I took one of the drugs my pain consultant prescribed, in a bid to help with the pain. The drug is called Nefopam and I, hesitantly, will say that it did help. It didn't miraculously make the pain disappear, unfortunately, but it did help and the proof of this was last Tuesday, four days after my infusion. I had a physio appointment and after I had caught her up with what my pain consultant had suggested, I started going through some of my physio exercises. I have only had a couple of cycles of going through waiting twelve weeks for the lidocaine, and not eight, and those extra four weeks have felt like I have taken one step forward and two back, as far as my physiotherapy was concerned. So after my infusion it would take me a week or so to get back to doing a good set of exercises, where I would feel I was fairly strong, or as strong as it gets for me. Well much to all our amazement, I had a really good session last week. I was able to do two sets of balances for thirty seconds and my physio was thinking back to when I started doing it and I could barely do it for five seconds! </div><div>I also managed a few other exercises and it all felt really positive. She pointed out that taking the new drug, even for just a few days, was well worth it, so we will see what happens when I take it before my next lidocaine infusion and whether it makes a difference again. I really hope so because I felt so positive after that session. Don't get me wrong, although it was really positive, I wasn't walking out of there without needing crutches or a wheelchair........I wish, but I wasn't in as much pain and I felt stronger both physically and mentally so that has to be a good thing π </div><div><br></div><div>I have been doing physio, this time, for over a year now and, although quite small, the improvement has been noticeable to my physiotherapist. She has been a wonderful support and has given, and is giving, me lots of exercises to try and build up the strength in my legs. I have been working hard and I'm doing all I can to stay on my feet for as long as possible. Although it's never as good as I want it to be, I know that I wouldn't be doing as well as I am without her support so that has been really valuable to me and I appreciate it very much. </div><div>I keep reminding myself though, that any improvement is only going to come from me so I want to keep at it πͺπ</div><div><br></div><div>XxXxX π</div><div><br></div><div>As always I'm sending out some Rosie love to you all, so enjoyπ»</div><div><br></div><div><div>
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</div><br></div><div><div><br></div></div></div></div>Ameliahttp://www.blogger.com/profile/15005720150574964538noreply@blogger.com0tag:blogger.com,1999:blog-2399329897798113338.post-84889891949834430102024-02-28T09:58:00.000+00:002024-02-28T09:58:34.736+00:00Pain Consultant Appointment, at last! <div><br></div><div>So I've finally had my appointment with my pain consultant. We, Martin, the consultant and I, worked out that it's been over eight years since I've had a face to face appointment with him. </div><div><br></div><div>He is a lovely man and I'm acquainted with his wife so firstly we had a good catch up, then I went in to the subject of the lidocaine infusions and that I can't manage with the time schedule being moved from every eight weeks to every twelve weeks.</div><div>For anyone who is reading my blog for the first time, I have been having lidocaine infusions for several years and they have always been every eight weeks, except when there is a pandemic, but about a year ago we were informed that the schedule was changing to every twelve weeks. The trouble is that my pain is more manageable for about six weeks after the infusion but by eight weeks I am definitely ready for the next one, so pushing it to every twelve weeks filled me with dread. </div><div>My wonderful GP has been pushing for a face to face appointment with my pain consultant for a while and I was relieved when I got the date through to see him. I explained to him how everything was affecting me and that I really needed to stick to eight weeks but he explained that if he did that for me he'd have to do it for everyone and they just don't have the staff or the space/beds to accommodate it. </div><div>So what was I to do? </div><div><br></div><div>My consultant has given me a prescription for two different medications to try. They are medications that I can use for the four weeks and then stop until the next time I need them, they don't need to be built up over time. It's the perfect time right now because I am right in the middle of weeks eight to twelve, so I am going to see whether either of these have any effectπ€</div><div><br></div><div>I have a bit of a history with different pain medication, including opiates. I have tried a lot of different medications, over the years, to try and lessen the nerve pain I have, but I struggled to find anything that would help. </div><div>I had a situation back in 2012 where, unbeknown to me, I had become addicted to an opiate called Oxycodone, this was before all the uproar in America. I had to go into hospital to withdraw from it, so I'm very hesitant to use opiates again. But I trust my consultant and whatever I use, it is only going to be for weeks eight to twelve and then I can stop taking it until the next time. </div><div>He has prescribed Clonidine and Nefopam. I am to try one for a couple of days and see if it helps, then I can try the other one. I am having my lidocaine infusion on 8th March and I can report back to the nurses whether either of these have helped. The other thing that he has told me is that one of the other pain meds that I am already taking, called Duloxetine, I can increase that up to double the amount and see if that helps. It is another one that I am able to increase and then I can decrease it once I've had the lidocaine. </div><div>It will be a bit of a trial for the first couple of times, to find the right combination of meds that give me relief, but I'm used to that and have learnt to have a bit of patience until I get the relief I need but I'd be lying if I said it was easy π </div><div>Actually the relief I need would be to stop all the buzzing, the pins and needles and burning sensations that I have but as I know that the MS has caused the damage and that isn't going to happen, I need to make the best of a horrible situation, so it's onwards and upwards π</div><div><br></div><div>Amelia</div><div>XxXxX π<br></div><div><br></div><div>As always, I like to share a bit of Rosie love, she is such a sweetheart! </div><div><br></div><div><div>
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</div><br></div><div>She actually sat on my lap for the first time in ages! π»</div>Ameliahttp://www.blogger.com/profile/15005720150574964538noreply@blogger.com0tag:blogger.com,1999:blog-2399329897798113338.post-53264319702535857202024-02-19T13:29:00.000+00:002024-02-19T13:29:41.040+00:0018 days.......but who's counting?<div><br></div><div>So, I have 18 days to go before my lidocaine infusion and a week before I see my pain consultant. I am trying to keep myself distracted and not counting every minute but it's proving quite difficult. </div><div><br></div><div>I have had, a few times this week, a feeling like the nerves in my body have felt as though I've been plugged into the electricity. It feels like they are pulsing and as well as being painful it can be distracting too. </div><div>I also find myself holding so much tension in my body. I try to catch myself doing it and release the tension but it's not easy. </div><div><br></div><div>I've been trying to keep myself as active as I can be, which is pretty difficult when you can only mobilise with crutches. There have been many times over the years where I just want to throw them away but what good would that do, apart from leave me stranded. It's so frustrating, I just want to get up and walk across the room but I can't without the palaver of getting myself set up with the crutches, getting steady on my feet and only then can I move forward. Don't expect to need me in a hurry! π</div><div><br></div><div>I've been having regular physio sessions and I'm lucky to have a great physio. She is helping me to keep as active as I can be and to keep as much strength in my legs and arms as possible. </div><div>I know it will shock those of you who know me but I've always been quite headstrong and determined π that does come in handy though because it is helping me to keep going with my physio exercises. </div><div>Every morning, and I have done this over the past few years, I do some of my exercises and I do lengths of our living room. I basically walk back and forth across the living room/kitchen. I used to be able to do this ten to fifteen times a couple of times a day but now I'm lucky if I can do it five to eight times, once a day, but I guess anything is better than nothing right? π</div><div><br></div><div>I remember why I started doing this, I got a watch that would remind me that I hadn't stood up and moved for a while. It also counted my steps and I became obsessed! I worked my way up to walking across the kitchen and living room and bear in mind I am always using my crutches, so it's never very pretty. </div><div>But I became obsessed with how many steps I was able to do and I would try and do that many each day. I'd be delighted if I did more. Obviously if I went out that would boost my tally and I remember when I was able to do a thousand steps or more, now though I'm only managing about four hundred a day but it's always better than nothing.</div><div><br></div><div>I always try and do some physio exercises when I get up in the morning, which is now between 6am and 7am and I try and do some lengths of the living room/kitchen. It would be easy to not do anything but as I said, I'm headstrong and determined and I want to be able to do as much for myself for as long as I can, so I keep going with everything. </div><div>It's also a great distraction from my nerve pain because it gives me something else to focus on and that really helps me and when I'm able to achieve something that I couldn't manage on my own before, it gives me the encouragement to keep going.......so I will, for as long as I can! </div><div><br></div><div>Have a good week everyone!</div><div>XxXxX π</div><div><br></div><div>As always I will share some Rosie love with everyone π»</div><div><br></div><div><br></div><div><div>
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</div><br></div><br></div><div><br></div><div><br></div>Ameliahttp://www.blogger.com/profile/15005720150574964538noreply@blogger.com0tag:blogger.com,1999:blog-2399329897798113338.post-62601778621612906022024-02-12T09:21:00.000+00:002024-02-12T09:21:22.890+00:00IT'S THAT TIME AGAIN!<div><br></div><div>It's time for my lidocaine infusion again and I'm feeling like I really need it π’</div><div><br></div><div>It's nine weeks since I had my last one and, as anyone who has read my posts in the past will know, I used to have my infusion about every eight weeks. Now though, because of the lack of space/staff, they have changed the scheduling and it's every twelve weeks.</div><div>This is a big problem for me as between weeks eight and twelve I feel my pain increase quite severely. </div><div>Guess what, right on cue, I am starting to struggle quite a bit. </div><div>My legs and feet have been pulsing, as though someone has plugged me into the electricity. It is so distracting, not to mention painful and my lower back, legs and feet start to get a burning sensation over them π£ It's hard to describe but it's really not pleasant and that's me being polite! </div><div><br></div><div>I know that it is the nerves, that ordinarily you shouldn't be able to feel but I can feel my nerve damage all over my body. I get really weird and awful altered sensations which I have had to learn to live with, if I didn't it would drive me crazy and there are days when it does. Poor Martin gets the brunt of that and I do feel for him, he just wants to be able to help me, but there is nothing he can do, other than be there for me, which thankfully he is, always π</div><div><br></div><div><br></div><div>I have been having the lidocaine infusions for several years now and, although they don't get rid of the pain, they help make my life more manageable. I am able to do more and my mood lifts, as anyone's would, when you're not in so much pain.</div><div><br></div><div>I have always had the infusions around every eight to ten weeks, apart from the pandemic which was more than a little trying for all of us. But a few months ago we were told that it was being moved to a twelve week schedule. It filled me with horror and I spoke to my wonderful GP who persisted with pushing for an appointment with my pain consultant. Finally, after several years of not seeing him, I have an appointment to see my pain consultant! It's only in a couple of weeks, which will be before I have my infusion, so I am going to talk to him about the whole situation and if it has to be a twelve week time period, can he help me with something to ease the pain during those last four weeks. </div><div><br></div><div>In the past, and in desperate emergencies, I have been prescribed Oramorph, which is liquid morphine. The trouble is that about twelve years ago, I had to stop taking some medication I was on, it was called Oxycontin and I didn't realise but it was very addictive. This was before all the furore over opiates and I ended up being admitted to hospital to have a controlled withdrawal. It was a complete nightmare and something I don't want to experience ever again. I will never go back on anything like that medication again and I only use the Oramorph when I really need to. </div><div><br></div><div>I am making myself a list of the things I want to talk to my pain consultant about. I find that, when I'm talking to any of my consultants or medical staff, I write down what I need to ask because otherwise I will always forget something. It's a bit of advice I will always say to anyone because when you're in that situation and you're speaking to someone about your health, it is easy to get distracted and forget what you want to say. My phone is always with me with the bullet points of what I need to tell them or the things I need to ask.</div><div><br></div><div>I'm pleased to say that I have been given a provisional date for my lidocaine infusion, which is 8th March. Fingers crossed that it is confirmed and I'll get my relief in three and a half weeks or twenty five days, not that I'm counting! </div><div><br></div><div>XxXxX π</div><div><br></div><div>As always, here is some Rosie love for you all, she has been quite amusing recently but then when isn't she?! πΉπ»</div><div><br></div><div><div>
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</div>"I will fit in this box!" πΉ</div>Ameliahttp://www.blogger.com/profile/15005720150574964538noreply@blogger.com0tag:blogger.com,1999:blog-2399329897798113338.post-82231040610127654792024-02-06T13:01:00.001+00:002024-02-06T13:01:36.368+00:00Do I just accept this?<div><br></div><div>Having a chronic illness is SO frustrating!</div><div><br></div><div>As I've become more disabled my frustration levels just keep on rising and I'm struggling to find ways to not let it get to me. It's the fact that there are so many things I want to do but can't so do I just accept that?</div><div><br></div><div><br></div><div>It's so difficult because, thankfully, my mind is still working - nobody comment on that one please π But because of that, I find myself thinking of all the things I'd like to do, just simple things like housework, but I can't just get up and do it. </div><div><br></div><div>Martin, my incredible husband, is my full time carer, which means he does so much for me anyway but on top of that he has to do everything else too. Things like the cooking and cleaning, sorting out the cat and all the other things that in the past I did, or at least helped with, and now wish I hadn't taken it for granted that I could do them. </div><div><br></div><div>I am finding ways to do some bits but I have to make sure I've got nothing else on that day. I did some cleaning in the bathroom once but then had physio in the afternoon, not a good idea! </div><div><br></div><div><br></div><div>I need to find other ways to move forward.</div><div><br></div><div>We've been struggling a bit since we both had COVID at Christmas and it really is very frustrating but we've been out to the cinema a few times, which we really enjoy, and that has occupied me for a while. </div><div><br></div><div>The trouble is that I spend a lot of time in our flat, which still needs to be sorted out even though we moved here nine years ago in June π³ We've still got boxes that haven't been unpacked which just fills me with horror π± But Martin did take some things to the tip yesterday which was brilliant! <br></div><div><br></div><div>I think part of the issue is that between us we have collected a lot of "stuff" and we have a relatively small flat so it's packed with everything! </div><div><br></div><div>I used to collect Me To You bears, you know, the ones with the blue nose! </div><div><br></div><div><div>
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</div><br></div><div><br></div><div>It started off when Martin and I first got together. We'd been working together for about four months and then moved back to our families, so we spent about two weeks apart. In those two weeks we sent those cards to each other and then they expanded and bought out the soft bears. After that they introduced ceramic figurines and I went through a phase of collecting them. I would be given them for birthdays and Christmas so my collection got quite large! </div><div><br></div><div>Now though, I have decided that we don't need them to be everywhere so I am trying to lessen my collection. I'm just trying to keep the special ones or the ones that mean something to me/us. They are mainly the Christmas ones or the winter ones, which are my favourite! </div><div>I found a unique way to get rid of some....by knocking over one of the display units! π³</div><div><br></div><div>I know I could sell them but we've decided to give them out to different charity shops π</div><div><br></div><div>Anyway, this is another way of trying to help myself with not getting so frustrated at the things I can't do and try and focus on what I can do π</div><div><br></div><div>It's a lot easier said than done though! </div><div><br></div><div><br></div><div>As always I'm going to share a bit of Rosie love with you all! </div><div><br></div><div><div>
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</div><br></div><div><br></div><div>Happy Tuesday everyone!</div><div>XxXxX π</div><div><br></div><div><br></div>Ameliahttp://www.blogger.com/profile/15005720150574964538noreply@blogger.com0tag:blogger.com,1999:blog-2399329897798113338.post-90638930645164765602024-01-30T09:55:00.000+00:002024-01-30T09:55:53.757+00:00Some more updates!<div><span>I have decided that it would be good for me to update you on something that I wrote about back in 2016. It was a post about my bowels and it was something that I was very open and honest about. That particular post had quite an impact and ended up being published in one of the MS Trust magazines, so I was very proud of it. </span></div><span><div><br></div><div><br></div></span><span>It is about a device called Peristeen. This is the link to the post I wrote back in 2016. </span><div><font color="#660000" face="Verdana, sans-serif" size="4">https://talesoflifewithmultiplesclerosis.blogspot.co.uk/2010/08/peristeen-hard-story-to-tell.html?m=1</font><div><div><span><br></span></div><div><span>Back in 2010 I was introduced to this device which is used by people who are severely constipated or have problems with their bowels. That was and still is definitely me! </span><br><span>I was severely constipated.......and I mean severely constipated, it wasn't unheard of for me to go days between having bowel movements and as you can imagine, this was not good for me in any way! </span><br>
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<span>It was at this time I was prescribed a piece of equipment called Peristeen and it's no joke to say that this piece of equipment changed the way I approached looking after my bowels.</span></div><div><br></div><div><br></div><div>Well, a couple of years ago I saw someone at the Bladder and Bowel clinic and I was prescribed something that has changed things again for me. It is a suppository called Lecicarbon A and l can't tell you how it works on a technical basis but it provides some sort of gas which then encourages your bowels to move whatever is there, down and out, I told you I wasn't technical! π</div><div><br></div><div>These suppositories really work and have definitely helped to get my bowels working. They are working in an almost "normal" way. I'm not sure that anything about my body is normal anymore but my bowels are definitely better than they have been for a long time! </div><div>You need to give yourself time when using one of these as it can take anything from 15 to 60 minutes, from when it's inserted for it to work but it is worth the time. </div><div>I have found it quite a pleasant change to actually have my bowels working in a "normal" way for once!<br></div><div><br></div><div>I would definitely encourage anyone who is having difficulties with anything that we, as a society, struggle to talk about, to go and see your GP. They have generally heard it all before and won't be embarrassed but they may surprise you and have a suggestion that may make your life a whole lot easier, it's always worth asking! </div><div><br></div><div><br></div><div>Now on to my bladder, about seven months ago I started having issues with my bladder. I wouldn't make it in time to the toilet and this was another situation that I really struggled with. </div><div>I was referred to see someone at the Bladder and Bowel clinic again and I hoped that they would have some answers for me. As it turned out, they did! </div><div>I was emptying my bladder perfectly normally and that was a relief but it didn't explain why I was having "accidents". <br></div><div><br></div><div>Well it turns out that what I needed was a bit more thought about going to the toilet. As I use crutches and struggle to get anywhere quickly, it was suggested that I need to try and plan my visits. Try and go when I'm in that direction anyway, even if I don't feel like I need to. </div><div>I have started doing this and so far, so good. It has made a big difference to me and because of the hassle of using the crutches and needing to put them down before getting on the toilet, I was panicking about it all. </div><div>So now, by going in a more planned way, it has taken the stress and panic out of it. That's a thumbs up from me! π</div><div>XxXxX π</div><div><br></div><div><br></div><div>As always, I like to send out a bit of Rosie love to you all, so I am sharing a look that we get so often from her, it's the "What are you looking at?" face! </div><div><br><div>
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</div><br></div><div><br></div><div><font color="#660000" face="Verdana, sans-serif" size="4"><br></font><div><br></div><div><br></div><div><br></div></div></div></div>Ameliahttp://www.blogger.com/profile/15005720150574964538noreply@blogger.com0tag:blogger.com,1999:blog-2399329897798113338.post-7980599198748326842024-01-22T09:18:00.000+00:002024-01-22T09:18:38.143+00:00The weather The recent weather has been driving me crazy! <div><br></div><div>I really struggle with both extremes of the weather so when it gets high temperatures and people are revelling in the heat, I am always staying indoors with my air conditioner on. </div><div>But the contrast to that is when the temperatures go the other way I really struggle then too. </div><div><br></div><div>The last week or so has been a total nightmare. I have been having horrible symptoms, my hands are permanently freezing and I mean ice cold π₯Ά It makes doing anything, especially things that need fine motor skills, incredibly difficult. Everything gets stiff, so my legs haven't been happy at all. Just getting up out of the sofa has been quite challenging and my pain levels have been awful. My body has been buzzing all over but then when that settles I get horrible burning sensations in my lower back, down my legs and all over the bottom of my feet. When I concentrate on that pain, it makes me feel quite sick so I try and find things to help keep me distracted. It's not easy but having Martin by my side makes things a lot easier, he has kept me busy with lots of television programmes, we like documentaries, drama's, comedy shows, comedians and films. </div><div>We've actually got a membership at our local Picturehouse cinema and going there is a great delight. I use my wheelchair when we visit as they have proper wheelchair spaces and Martin comes in for free as he is my carer. A lot of cinemas and theatres offer this so it's always worth asking when you are booking something. We are going up to London in May to see a show and you know how bad London theatre prices can be. Well, in total, for both of us to see a show at The Coliseum it's is just over Β£50 and it is something we are really looking forward to! That is another thing that is very important, having things to look forward to, it makes a huge difference π</div><div><br></div><div>I know that this cold spell has broken now and things are warming up but it's been such a trying time and I know everyone has been feeling the cold but when you have a chronic condition, that leaves you vulnerable and causes pain, it really does make life much more difficult. </div><div>We've still got February and March to come yet and they can always surprise us, so stay warm, use hot water bottles, blankets, arm warmers, anything that helps to make life more comfortable, it doesn't matter what you look like! π</div><div><br></div><div>I like to always share a bit of Rosie love, so here you are! π»</div><div><br></div><div>I got a new perching stool delivered last week, so guess who thinks it's for her?!! πΉ</div><div><div class="separator" style="clear: both; text-align: center;">
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</div><br></div><div>Stay strong everyone</div><div>XxXxX π</div><div><br></div>Ameliahttp://www.blogger.com/profile/15005720150574964538noreply@blogger.com0tag:blogger.com,1999:blog-2399329897798113338.post-89032140006562425832024-01-15T11:26:00.000+00:002024-01-15T11:26:56.373+00:00Physio sessions<div><br></div><div>Over the years, as I have become more disabled and the strength in my legs and arms has become less, it has been really important to go back to our physio service to ask for their help and advice. We have a self referral system, so we can just call the service and ask to be seen. </div><div><br></div><div>This is what I did over a year ago now and I'm so glad that I did. I was booked in with an Physiotherapist, called Zoe. She is a neuro physio which means she specialises in neurological conditions. </div><div>I am very lucky because I have actually had various sessions with Zoe, on and off, over several years and I was delighted when I was paired up with her again this time. She is very understanding, practical and totally understands my way of thinking......which can be odd at the best of times! π </div><div>I remember several years ago, she came to our friends swimming pool to help me with exercises to guide me with the best way to build up the strength in my legs. That was so valuable to me because, not only did we have the use of a private pool, but I had a physio come and show me what was the best way to help myself. </div><div><br></div><div><br></div><div>The sessions I have been having this time, have been to help keep me as independent as I can be and to keep me using my legs, rather than a wheelchair, for as long as possible. </div><div>I have always seen using a wheelchair as a negative thing. My view was always that "I'm giving in" or "I'm being lazy". I guess it is what has kept me using my crutches for all these years. I actually couldn't have been more wrong though because using a wheelchair is just another aid, like the crutches are, but I just couldn't see it that way. Now though I have been shown that using a wheelchair is a way of helping my body to save it's energy, which is so important as there isn't a lot to be used in the first place! </div><div>Using my wheelchair occasionally through the day means that I am able to manage things later in the day. I always struggled to get into bed because my legs were so tired but if I use the wheelchair sometimes then I find that getting into bed is easier because my legs have more energy in them. </div><div>It makes total sense to me now, I've always been a bit slow to catch on! π </div><div><br></div><div><br></div><div>Zoe, the physio, has given me several exercises to work on and over the past year, where I feel I haven't made any progress but she has been able to point out how far I have come. </div><div>One of the first exercises was just to stand up and balance with only one hand holding on. I couldn't keep myself upright, my stomach muscles would collapse and I would just bend forward. Over the year I have built myself up to be able to stand, with only one hand holding on, for thirty seconds. This really helps my posture and it takes me back to all the years I was a dancer, I know what and how I am supposed to do it, it's muscle memory that just needs to be woken up! </div><div><br></div><div><br></div><div>I like to think I am a positive person and I try really hard to do all I can to help myself but I am also very good at putting myself down. I don't know why I do it, I guess I want to get in there first before anyone else does it! But I am also very determined to help myself and I've never wanted to let the MS take over. It's a double edged sword because I need to stay positive and pro active in staying on my feet and doing all I can, but because of the the symptoms you get with MS, they need to be managed. You have to find a balance between keeping active and busy but doing it within your own limitations. This is where I have always struggled, my head tells me there are things that need to be done but then I stand up and my body says "not a chance!" It's incredibly frustrating.</div><div><br></div><div>I am working really well with Zoe and I am trying to keep my body as strong as it can be. </div><div>It's been really difficult over the past few weeks because of getting COVID and the negative impact that has had on both Martin and I, but we are slowly recovering and even though I want to throw myself back into doing as much physio as I can, Zoe pointed out that it's going to take time so don't push myself too much. </div><div>Unfortunately this is another thing I am very bad at. I want to be able to do everything now so why won't my body let me? For me, having a chronic condition, like MS, is as much a mental battle as it is a physical one and that is another area that I struggle with. I am constantly beating myself up about what I can't do or I'm getting frustrated because I want to do things that I just can't manage. Why do I do this, I know I have MS and I know that I have plenty of limitations but I still convince myself that I can do everything, when I know I can't. π€</div><div><br></div><div>Talking things through with Zoe has helped me realise that I need to be kinder to myself. I need to give myself a break and not be so hard on myself but I find all this incredibly difficult. The way I have always thought is that I need to push myself to keep me going. If I'm kind to me and don't push myself surely I am giving up and I will end up in a wheelchair more quickly? But by pushing myself so much, to do things that I know I will struggle with, not only am I in danger of causing injuries, which would be the last thing that either Martin or I need, but it exacerbates the fatigue I feel and if I can't do something maybe I need to accept that rather than pushing myself into trying and not succeeding?! </div><div><br></div><div><br></div><div>All this thinking is starting to hurt my poor little brain but it has been a good thing because I am slowly realising that being kind to myself isn't "giving up" it's just another way of being practical. Using my wheelchair isn't "being lazy" it is helping to conserve my, already low, energy reserves. I need to stop beating myself up and give myself a break but it's easier writing it down than it is doing it, so thank you Zoe for helping to keep me on my feet but also for helping me to see things more clearly!</div><div><br></div><div>Please keep your fingers crossed that I can put these thoughts into practice and keep your positive thoughts coming too, thank you! π₯°</div><div><br></div><div>Love & hugs </div><div>XxXxX π</div><div><br></div><div>Oh and some much needed Rosie love! π»</div><div><br></div><div><div class="separator" style="clear: both; text-align: center;">
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</div><br></div><div><br></div>Ameliahttp://www.blogger.com/profile/15005720150574964538noreply@blogger.com0tag:blogger.com,1999:blog-2399329897798113338.post-55455279628379454812024-01-08T18:46:00.000+00:002024-01-08T18:46:44.807+00:00My rock! πIt will come as no surprise to anyone who knows us or has read my blog posts, that Martin, my extraordinary husband, is my absolute rock. <div><br></div><div><div>He is my full time carer and has been since 2010 but that role has become bigger and so much more involved over the years, as I have become more disabled. </div><div>I genuinely don't know what I would do without him. </div><div><div>I think he knows, or he should know, just how grateful I am for him to have taken on this role and I want to shout it from the rooftops just how much he does for me and for us as a couple. </div><div><br></div><div>When we moved to our flat in 2015, we did have a carer who came in for a couple of hours, three times a week. She would shower me and help with some of the cleaning and tidying. It gave Martin a break for those few hours, he would be able to go out and do things just for him and I loved having someone else to talk to!</div><div>Unfortunately the council, in their wisdom, stopped the funding and there was no way we could fund it ourselves, so everything was put back onto Martin. The term "full-time carer" basically means that he is the cook, the cleaner and the bottle washer, he literally does everything and carers in this country are badly undervalued. I was working out that his weekly payment, divided by seven days and twenty four hours, means he gets forty five pence an hour. He doesn't get a day off and he is on call for twenty four hours a day. Family carers really do save the government massive amounts of money.</div><div><br></div><div><br></div><div>We had COVID over Christmas, which was horrendous as we absolutely love it but Christmas 2023 was one to be forgotten. I think we'll remember it for all the wrong reasons though βΉοΈ Unfortunately Martin was in bed for about three days and it made clear to both of us just how much he does. The only thing that he really needed to do was feed Rosie and sort her litter out, yet another thing that I just can't do safely, but it absolutely had to be done. </div><div><br></div><div><br></div><div>My MS - and it is "my MS" because no-one who has a diagnosis of MS will experience the same set of symptoms. I have always said that you could have a room full of people who have had that diagnosis and we will all have different sets of symptoms and different experiences of treatment etc. It is something that is very hard to explain to anyone who hasn't got MS or hasn't had any association with the illness and it makes navigating the world of having a chronic illness a difficult one. </div></div><div><br></div><div>I always had the mindset, right from my diagnosis, that I wasn't going to just sit back and feel sorry for myself, I wanted to keep doing as much as I could. I was 'lucky' to start with because my symptoms weren't physically disabling. I had neuropathic pain, which I have had from day one and I haven't had a pain free day since July 2002. But I didn't have trouble with my legs until the following year when I needed to use crutches when I was outside. I was able to move around the house without using crutches, I would be able to furniture walk or use the walls to balance myself but now I am unable to move about at all without my crutches. I also use a wheelchair, I have an electric one for around the flat but if we're going somewhere by car, I have a manual one we can take with us. </div><div><br></div><div>I couldn't do any of it without Martin's help though. He makes sure my wheelchair is where I need it to be. If I'm going somewhere that, when we get there, will be too far for me to walk, he makes sure the wheelchair has been put in the car, so he is constantly thinking about what needs to be done for me. </div><div><br></div><div><br></div><div>It is very humbling, when I think about it and I am constantly asking him whether there is anything that I can do to help him. The answer always comes back as "no". </div><div><br></div><div><br></div><div>It is so difficult for me because I have always been someone who actively wants to help people, so being physically unable to do that is incredibly frustrating. I want to be able to stand up and just walk across a room, something I wish I had never taken for granted. </div><div>When I think back to the years I spent as a dancer and all the theatre shows I did, something I loved and was passionate about but am no longer able to do, it is soul destroying BUT I was determined not to let it get me down and I was able to do three charity concerts, raising money for MS and I loved being a part of that. </div><div><br></div><div>Me in Sweet Charity circa 2001<br></div><div><div class="separator" style="clear: both; text-align: center;">
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</a></div><br></div><div>I haven't sung for quite a few years now though and my confidence has gone so I just sit back and watch!</div><div>I live my passion through Martin now, who is a wonderful actor and singer, so I love seeing him perform on stage. <br></div><div>I am vocal about him doing shows as he needs to have an outlet too, somewhere he can go and socialise with other people and concentrate on something completely different. It's important for him as it gives him a change of scenery and I hope it stops him getting cabin fever! π</div><div><br></div><div>Martin in The 39 Steps</div><div><div class="separator" style="clear: both; text-align: center;">
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</div><br></div><div><br></div><div>He will hate that I have written this post but I needed to write it. I need people to know how important it is that family members take on the role and responsibilities of looking after someone they love. They haven't trained for it and weren't expecting to be called upon in this way but they do it none the less. </div><div><br></div><div>I'm so blessed to be able to call Martin my husband, he is my soulmate and my best friend but he is also my carer and for that I am, and always will be, eternally grateful π</div><div><br></div><div>Rosie loved the Christmas tree! πΉ</div><div><div class="separator" style="clear: both; text-align: center;">
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</div><br></div><div><br></div><div>Stay safe out there everyone!</div><div>XxXxX π</div><div><br></div><div><br></div><div><br></div></div>Ameliahttp://www.blogger.com/profile/15005720150574964538noreply@blogger.com0tag:blogger.com,1999:blog-2399329897798113338.post-36894656649870838382024-01-01T12:59:00.000+00:002024-01-01T12:59:24.063+00:00COVID over Christmas π·<p>
Well that was a Christmas & New year that I know we'll never forget but for all the wrong reasons π’</p><p>I am always trying to make sure that I plan for every eventuality but I certainly didn't plan for what happened to us just before Christmas. We went to visit family in Bournemouth and we had a really lovely day. Martin was able to visit his Mum, who sadly has Alzheimer's. While he went to see her, I stayed with one of Martin's sisters and a few other family members and it was lovely to spend a couple of hours catching up with them all. <br></p><p>What I hadn't planned for, or thought about, was how long I would be sitting down and not moving. I was sat on a sofa that I'm not used to but I managed to get up out of it okay, with a little help! I struggled to walk to the front door, my legs were feeling really weak and I had no energy or power in them. Suddenly, I fell to the floor, my legs gave out and I couldn't get up, I literally couldn't use my legs or arms to push me up. I crawled to the doorstep and Martin was able to move the car to right outside the door but I still couldn't find any strength within me to get up. </p><p>We had no idea how I was going to move from there. A friend of his sister's arrived, who was a Healthcare assistant, and she was trying to encourage me but it wasn't that I didn't want to get up, it was that I physically couldn't do it. They called an ambulance for me but we knew that would take time, so in the end about four people managed to pick me up and carry me to the car so that we could get home. </p><p>Martin drove us home, which took a little over two hours, and when we got there he brought my electric wheelchair out to the car. Unfortunately I still had no strength or power in my body, which was so frustrating for me and for Martin. He was desperate to help me but there really wasn't much he could do. I couldn't have coped without his love, patience and support though. To be in a situation where you are asking your body to do something simple and it just can't do it was incredibly scary for me. But I'm stubborn and determined and eventually, with Martin's support and help, I got into the house and to bed. In the past if I have struggled with my legs, I know that having a sleep and giving my legs rest on the bed, usually restores some strength back in them and it happened this time too. I was still struggling when I woke up but not like the day before. </p><p>I didn't realise how much I was struggling though or how scared I was, I know I panic and go straight to thinking the worst. What if this doesn't get any better?</p><p>I put it all down to having a cold and I also remembered that I had done a physio session the day before, so I thought that the lack of strength in my legs was all because of the work I had done the day before. I chastised myself for trying to do too much. I wouldn't normally have tried to do as much in such a short space of time, but it was Christmas so of course we were going to be busy! </p><p>The trouble is, my body and the MS doesn't care what time of year it is. If you overdo it you will pay the price......and I did. </p><p>I'm sure some rest would make me feel better wouldn't it?! π€</p><p> </p><p>The next day I did rest although I was aware there were still lots of things I needed to do for Christmas. I was struggling with a cold and feeling quite worn out so I needed to take it easy and be kind to myself, something that I'm not very good at and find very hard to do!</p><p>I struggled through the next day, I still wasn't doing very much and went to bed quite early, but later that evening Martin woke me up with a surprise for me, unfortunately he had tested positive for COVID so he tested me and unsurprisingly I was positive too. This was the Friday night before Christmas day! We had both been feeling unwell for a couple of days but just thought that we had come down with a bad cold. My nose wouldn't stop running, I kept on sneezing and we both developed a hacking cough. </p><p></p><div class="separator" style="clear: both; text-align: center;">
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</div><br><p></p><p>It was all very unexpected and totally threw our Christmas plans out of the window.</p><p>Of course, having MS put me in the vulnerable category and Martin was very quick to get me on the phone to 111. I have to say that, as always, the NHS were fantastic and got a prescription organised for a course of anti viral medication. I haven't been able to have my flu or covid vaccinations yet because of the MS treatment, Ocrevus, I had in October. This means that I can't have my vaccines until the middle of January, so I needed to have something to try and prevent me getting very poorly as I have no protection and my immune system is very vulnerable. </p><p>Unfortunately Martin couldn't have the anti virals and, as my carer, I believe that he should have been eligible for it. He really struggled and was in bed for about three or four days, right over Christmas, he had zero energy and just had to sleep, it hit us both quite hard. </p><p>My symptoms included a hacking cough and my head felt totally congested. My nose wouldn't stop running for a few days and I was sneezing so much π€§ We both had a bad cough that wouldn't clear and just felt totally wiped out. Martin had a severe sore throat, a cough and he kept getting chills too.</p><p><br></p><p>It has now been about ten days since we tested positive and we have now both tested negative! I have to say that we both still feel pretty rubbish, I'm still sneezing and my nose goes through stages of feeling congested, then it won't stop running! It's definitely more than just a normal winter cold and has wiped us both out quite severely. We're hoping that it doesn't hang around for too much longer but we're aware that it's going to take a few weeks for us both to get back to any sense of 'normality'! </p><p>We haven't managed to have a Christmas dinner yet but that will come at some point but we have to thank our friend, Katy, who picked up the medication from the hospital for me. She was definitely our Christmas angel! π</p>Ameliahttp://www.blogger.com/profile/15005720150574964538noreply@blogger.com0tag:blogger.com,1999:blog-2399329897798113338.post-59761050165032054882023-12-18T10:25:00.000+00:002023-12-18T10:25:30.399+00:00IT'S CHRISTMAS! πππππ<div>IT'S CHRISTMAS! π</div><div><br></div>Martin and I absolutely love Christmas! We always have and I suspect we always will! π<div><br><div>It's the beginning of Christmas week and we are well into enjoying the festive season but having a chronic illness means that planning is essential! </div><div>We put our tree up early. I knew I was struggling to stand and that decorating it would take a lot of energy so it was actually undecorated for a couple of days.</div><div>I needed a lot of Martin's help with it all, I was basically directing him where to put things! But between us we got it done and I was pleased that we'd taken the stress out of it. </div><div><br><div class="separator" style="clear: both; text-align: center;">
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</div></div><div><div><br></div></div><div>We finished off putting up the rest of the decorations, including the outside lights around our front door and I was so pleased that it was all done, even if it was a week or so before we have done it in the past! </div><div><br></div><div><br></div><div>We had a lovely trip out last week, we went with my Dad to Paignton zoo as they had an event called Glow Wild. It was a trail, around one part of the zoo, that was a light show. There were various light displays and it was really well done. </div><div>We had been to one at Killerton, a couple of years ago, but it wasn't quite so well thought out. It was up and down some fairly steep inclines, which wasn't helpful when pushing a manual wheelchair so the zoo had definitely improved on that. </div><div>I was able to hire a scooter at the zoo, which gave me more independence and meant Martin could concentrate on taking photos rather than pushing me! </div><div><br></div><div><div class="separator" style="clear: both; text-align: center;">
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</div><br></div><div><br></div><div>Our next Christmas outing was to go up to the RSC at Stratford. </div><div>One of Martin's favourite things to watch at Christmas is a six part children's drama called The Box of Delights. He has got the box set on DVD and a cd of the soundtrack, so when he found out that the RSC - Royal Shakespeare Company - were doing a stage production this year, we looked straight into booking tickets. I was able to book a wheelchair space and a companion seat and we went up to the matinee performance on Sunday with a good friend, it was a lovely Christmassy day out! π</div><div><br></div><div><div class="separator" style="clear: both; text-align: center;">
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</div><br></div><div>We have to congratulate the RSC on a wonderful production, it was incredibly well done and included music, singing and puppetry, as well as being very well acted. It was a magical show that seemed to be enjoyed by the whole audience and it was well worth travelling to Stratford to see it!</div><div><br></div><div><br></div><div>So we're a week away from Christmas day and I'm trying to be organised! π </div><div>I have a couple of medical appointments this week, I still have gift wrapping to do, although I have to admit that I don't really wrap anything anymore. We have lots of gift bags and I just use those, which is a lot easier on my hands for both wrapping gifts and also when I'm unwrapping them! π </div><div>We were able to book ourselves a shopping delivery slot for the morning of Christmas Eve, which has taken the stress out of our food shop. It really is a case of thinking ahead, something that I used to be quite good at! </div><div><br></div><div><br></div><div>Anyway, Martin, Rosie and I would like to wish you all the very best wishes of the season, wherever you are, whoever you are with, may you feel safe, warm and loved.</div><div><br></div><div>With very best wishes</div><div>A,M&R</div><div>XxXxX</div><div>π₯°πΆπΎ ππππΎπΆπ₯°</div><div><br></div><div><div class="separator" style="clear: both; text-align: center;">
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</div><br></div><div><br></div></div>Ameliahttp://www.blogger.com/profile/15005720150574964538noreply@blogger.com0tag:blogger.com,1999:blog-2399329897798113338.post-21659462830815227392023-12-12T11:36:00.000+00:002023-12-12T11:36:16.990+00:00Infusion time! After what feels like an incredibly long time, I have finally had my lidocaine infusion. It's been a difficult few weeks but Martin, as always, has been an absolute star π<div><br></div><div>So let me take you through my infusion day. </div><div>I get up at 6am as my appointment at the hospital is 8am and bare in mind that the hospital is about thirty minutes away. </div><div>Once I get there and have booked in, I have to get my portacath accessed. </div><div><br></div><div>Let me explain! </div><div><br></div><div>My veins are not very cooperative and are difficult to find but not just that, when I need to be cannulated I find it incredibly painful having a needle put into my skin because of all the altered sensations I have. </div><div>I am not afraid of needles, when you've had as many experiences with them as I have, you learn to deal with them. It's the pain I experience that has always made things a lot harder. </div><div>My pain consultant, who recommended the lidocaine infusions, suggested that I have a portacath, also known as a TIVAD (Totally Implantable Venous Access Device), put in my chest. I can feel the port, in fact this one is only just under my skin so it's easy to feel. It doesn't hurt, actually when I'm not having it accessed I forget it is there, but by being so easy to find makes it easier for the person putting the needle in!</div><div><br></div><div><div class="separator" style="clear: both; text-align: center;">
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SZpG0qUSkvpA7jm2Nzs1HUs4J76Cmm8XbNfNTWFdOXKldHrJ2r0CkyF55odH58+ev8e1ohK8QAsfni4cx21016d2GUJIjZse61xOzJapErcnTI9/+Foenx2toXU0FRD6OpIc3OI4ej9B9C8U/Da+6Oj6enx8blZczZY3Ch24/VRmGNuDrwwc4jsn8TmX7RCCVXKxhImdtH/X0SEZNZaD9F+hg0wZLGIfk9IWVpCNxLTX1uax8+gD1tSFL0EMijKKBaL5j1S62Zn6x4pHMxZ/C6MKpUUZSk9/3Hm5szMGLhxdmq05QDLAOPjY7B07ABUiDOF339PptF5iLibsfbEEK77xNjMzNdpuQQHU5bx/EfQAyRJlUriXexI5EnT+l/ZHTd+9GGetr7bDVCHc+NzzT0BImCVsEjw7tiH+d3ynbslQCe7gTNRliVZZD1kalG8C7qDddeUiF5HHmDZzj+7D45EHkCf58D8WApXwnZrXr5Ej+MosonIHLwfG4cVWnsHoaPQunlz5iMKAysO5ue//vDh48fDGXgD3IocC5qbQ/aZNeP6SiM4TeEIn5seMye78REmknX0q1yIp/uXEGRRn5+ZRTu2XUQYGtHJeOFp8vAmZCXgtiJrdNS+z1AuGDW3jCsnjFrOtGePK+0jRq1AhTVMT8PupMETIjIm6/g2BqwOJr9zh/4wDWHuogXeW2bmwHl/eBIOBdB/HhwcHB2NTU+j/T09jhLbtCmw1tHRAewKpOQubIyM2bLH7TLb9wwWGgiZAk+D00RjvcgD2JPYZTdu3LyJPYc2JFptJ9YWbyvjoTwChx+kSadsFazRpJ9U9vBZxDYXVBpUZg7fH4wdIfyp0ePUGRXrf00PlXnNzku3AAAAAElFTkSuQmCC" alt=""></div><div><br></div><div><br></div><div>I had previously had one several years ago, when I was having a Disease Modifying Drug called Tysabri, but it had been taken out when I stopped that treatment. </div><div>My consultant put one back in my chest which means I have permanent access to my veins - as long as I have a nurse or doctor who knows how to access it, which hasn't always been the case.</div><div><br></div><div>The port definitely makes my life easier but it also helps the nurses who are trying to treat me because it's not as painful, or as hit & miss, as being cannulated. </div><div>The port in my chest is connected to the vein in my neck so that the medication can travel through my body. </div><div><br></div><div>So a needle is put into the port and firstly, they try to draw back blood to check they are in the correct place......unfortunately, I have had plenty of times when it hasn't drawn back and yesterday was one of those times π It doesn't stop me having my infusion though.</div><div><br></div><div>Once accessed, the port is always flushed with saline solution and the treatment is then connected to the port. </div><div>The infusion itself takes about ninety minutes to go through, but that always goes really quickly. There are generally one or two other people having lidocaine that I can talk to or I can write posts for my blog on my phone! π </div><div>You are hooked up to a machine that monitors your blood pressure and heart rate every twenty to thirty minutes. When the infusion has finished the port is flushed again, just to keep it all safe. The needle is taken out and it can bleed a little bit so I always get a dressing or plaster put over it. </div><div>I'm then free to go!</div><div><br></div><div>The infusion itself can make me feel quite tired and generally a bit yuck, so I always give myself a couple of days just to lay low. After a few days I can usually start to feel the lidocaine kicking in and after about a week the pain is a little more manageable. The pain and altered sensations are always there but everything is easier to deal with. Personally I find that the benefits last for around six weeks, after which the pain starts increasing again and by eight weeks I am definitely ready for the infusion again. Unfortunately, at the moment, I am having the infusion every twelve weeks, which can be challenging but, luckily, I've got a good support system around me! </div><div><br></div><div>It is such a useful treatment, in my opinion. It helps me to live my life in a more comfortable and positive way and long may it continue! π</div><div>XxXxX π<br><div><br></div></div><div>PS Some Rosie love for you all! π»</div><div><br></div><div><div class="separator" style="clear: both; text-align: center;">
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</div><br></div>Ameliahttp://www.blogger.com/profile/15005720150574964538noreply@blogger.com0tag:blogger.com,1999:blog-2399329897798113338.post-1014201826797965382023-12-09T17:33:00.000+00:002023-12-09T17:33:09.280+00:00Pain, pain go away.......Pain, pain go away........and don't come back another day π’ <div><div>I don't like writing a grumpy post but I needed to vent and just get it off my chest.</div><div><br></div><div>I'm really struggling with my pain at the moment as I am waiting for my lidocaine infusion. It is driving me crazy because I know it will help. I am having it on Monday, which I know is only a day and a half away but it feels like forever! My legs and feet are buzzing and tingling all over and my back is really burning. </div><div><br></div><div>I am trying to find anything to distract myself but at the moment my body is taking over π</div><div>We have recently put up our Christmas decorations, which normally I love doing but I needed Martin's help to do most of it and that is very annoying, not because he doesn't want to do it but because it's another affirmation that I am becoming more disabled. </div><div>BUT it's nearly Christmas and I'm about a week away from feeling the benefits of pain relief so I'm trying to stay positive and looking on the bright side of things! </div><div><br></div><div>Plus, who can feel down when you've got this face looking at you?! π»</div><div><br></div><div><div class="separator" style="clear: both; text-align: center;">
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</div>Yes, she's sat in the wash basin! πΉ</div><div><br></div><div>XxXxX π</div><div><br></div><div><br></div><div><br></div></div>Ameliahttp://www.blogger.com/profile/15005720150574964538noreply@blogger.com0tag:blogger.com,1999:blog-2399329897798113338.post-3964846108460209022023-12-03T18:17:00.004+00:002023-12-03T18:28:34.364+00:00NEUROPATHIC PAIN, ALTERED SENSATIONS AND THE WEATHER!Neuropathic pain and altered sensations were the first symptoms of MS that I experienced back in June/July 2002. I wasn't really one for going to the GP about anything and my initial reaction was that I just thought I had slept in a strange position but it continued for days.<br /><div>It turned out they were the start of my MS journey and I can honestly say that those altered sensations and the neuropathic pain have been with me every day since. I haven't had a single day without feeling strange sensations/pain in my feet, legs, lower back, arms and hands. But you learn to find a way to live with them. You have to. Don't get me wrong, I have my days where the pain gets really bad or the sensations feel so strange that they affect what you can do, but you learn to take each day as it comes. </div><div><br /></div><div>I have Relapsing Remitting MS (RRMS) and for some people this means that they will have a relapse and when it is over they go back to "normal" and are able to function without any, or very few, issues. Unfortunately, in my case, my pain and altered sensations have never left me. There will be days and times that are worse than others but it is always there.</div><div> </div><div>Over the years I have tried many different medications, some that are better than others but I've always given things a try, because what have I got to lose? </div><div>One of the things that was suggested to me by my pain consultant was a Lidocaine infusion. Now lidocaine is a local anaesthetic and so therefore can be used as a nerve block - do I sound like I know what I'm talking about.....it's all an act really! </div><div><br /></div><div>I am currently waiting for my lidocaine infusion, which helps me with the painful sensations I feel all over my skin. I have been having these infusions for a few years and I find them very helpful. It's not a miracle cure and it doesn't get rid of the pain but it just helps make things a little more manageable.</div><div><br /></div><div>The problem that I'm experiencing at the moment is that the hospital has changed the routine. They were giving the infusions around every eight weeks. I would find that after about six weeks, the pain would start to increase and by the time the eight weeks was up, I would be more than ready for the infusion.</div><div>Now though they have moved us all to every twelve weeks, which means between weeks eight and twelve, my pain can get much worse. I believe the reason it has been changed is because there is not enough space or nurses to cope with the demand. This is incredibly frustrating because when you're given something that gives you even just a little relief, it is so important to keep it going. </div><div><br /></div><div>So my problem at the moment is that it has been ten and a half weeks since my last infusion and I am struggling. I have had my appointment for my lidocaine infusion, 11th December, and it will be exactly twelve weeks since my last one. My GP has written to my pain consultant to see if I can go back to eight weeks and I am currently waiting for an appointment to see him. </div><div><br /></div><div><br /></div><div>Things haven't been helped by the weather turning so cold, my body cannot tolerate either being very hot or very cold, it's incredibly frustrating! In the summer, when there's beautiful weather, my body goes haywire and I need to keep myself cool, unfortunately there are only so many clothes you can take off! But in the colder months, especially when we get the bitter temperatures, my body can't handle that either. My pain increases and I get incredibly uncomfortable.</div><div><br /></div><div>So of course now the weather has changed, the temperature has dropped significantly, so my pain has gone up another notch. I am desperately counting down the days until I have my lidocaine infusion.</div><div> </div><div>On top of that my left leg is doing a dance of its own while it spasms every few seconds. I take a medication called Baclofen which has always helped with my spasms and in general I'm not really affected by them but, at the moment, I am finding that the spasms are happening in the afternoon, especially as it gets colder, and that is really annoying. My leg will suddenly try to kick out, involuntarily, and I have no control over it. I am taking extra Baclofen when this happens as it is the only thing that calms it down. </div><div>When this leg spasm happens, I am finding it more exhausting too, because it is quite physical, even though I am just sat down. It's quite disconcerting! </div><div><br /></div><div>I have got a week before I have my lidocaine infusion and it's going to be a long week! I have plenty of distractions though, a certain fluffy girl keeps us very entertained! πΉ </div><div><br /></div><div>Please keep warm out there. </div><div>Sending love and Rosie cuddles </div><div>XxXxX π</div><div><br /></div><div><div class="separator" style="clear: both; text-align: center;">
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</div><br /></div><div><br /></div>Ameliahttp://www.blogger.com/profile/15005720150574964538noreply@blogger.com0tag:blogger.com,1999:blog-2399329897798113338.post-90914383140533053502023-11-28T14:21:00.000+00:002023-11-28T14:21:09.407+00:00How important pets can be!People can be quite divided on the benefits of having a pet. But in my opinion having a pet gives you something else to focus on and the love, and entertainment in Rosie's case, is priceless! <div><div><br></div><div>When we bought our house, back in 2001, one of the first things we wanted to do was get a cat. I had grown up surrounded by dogs, as my parents bred Newfoundlands and my Mum, with the dogs, were registered as PAT (Pets As Therapy) dogs. So when Martin said he wanted a cat, I was a little nervous as I had no experience with cats, at all, but that was when we got our first one, Pudney. </div><div> <div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgucO_XygGvxPKYoOsxxipTkPJvaDSFRsJrPpML3PTvGEEFEwxYA1tYk8HG_qWg6zWRciDa8wsflD6-RTG4XPts60vFy9XqoIfMiiA6v780QK9cBPabQRZl0F_xiiWB_EpERJaeR5IoOiU6ASNRjZ9RTgvleY1HkZgbks0NXZcs_xxEch5z9b9hwQw7lpeh/s1280/image_share3000005809699011.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="1280" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgucO_XygGvxPKYoOsxxipTkPJvaDSFRsJrPpML3PTvGEEFEwxYA1tYk8HG_qWg6zWRciDa8wsflD6-RTG4XPts60vFy9XqoIfMiiA6v780QK9cBPabQRZl0F_xiiWB_EpERJaeR5IoOiU6ASNRjZ9RTgvleY1HkZgbks0NXZcs_xxEch5z9b9hwQw7lpeh/s320/image_share3000005809699011.jpg" width="320"></a></div><br></div><div>We adopted her from a local rescue centre but sadly she passed away, unexpectedly, after we'd only had her for three and a half years. </div><div><br></div><div>Soon after we bought home Barnaby, he was approximately 6 years old, again from a rescue centre.</div><div> <div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjh2whlVgTAVIcBA4Fo7tPaCbq8d-k2pxjr5_R6BSlDWJoyuzGD8ZpkzoW88ixMXAn-0lpv0ARHC91EmnDVoMPaQ5dIDQhoVelO6Mb-XkyoIziuLeWRnMJOZM2JdjWTuPD0IZ5zTF4IUc7_L1EF4zRQIATmOyxJQT5QtavxztEvsrkfmFIlMVSbCAfIDekR/s1450/image_share3000005809697011.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="1450" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjh2whlVgTAVIcBA4Fo7tPaCbq8d-k2pxjr5_R6BSlDWJoyuzGD8ZpkzoW88ixMXAn-0lpv0ARHC91EmnDVoMPaQ5dIDQhoVelO6Mb-XkyoIziuLeWRnMJOZM2JdjWTuPD0IZ5zTF4IUc7_L1EF4zRQIATmOyxJQT5QtavxztEvsrkfmFIlMVSbCAfIDekR/s320/image_share3000005809697011.jpg" width="320"></a></div><br></div><div>After we'd had him for a while, I had the bright idea of getting a second one so we bought home a 6 month old called Kit Kat!</div><div><br></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJa1qOziQwc-bqH0WhgozKkyMHZdiXKgyjyOxpalNl32ly-A-0S7ijM70wyqmuNmR000xW4BwoeXTnr5Wl1aQldyuCONe3snyZYRg3v4zvfbpklTbxIuTrerebXokZfg6U3hOnDPbi_TG49vrDCtbXU1SjwRLhH1rmaXycAtKznSWRrHPrODcjpnXYObsf/s1444/image_share3000005797074011.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="1444" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJa1qOziQwc-bqH0WhgozKkyMHZdiXKgyjyOxpalNl32ly-A-0S7ijM70wyqmuNmR000xW4BwoeXTnr5Wl1aQldyuCONe3snyZYRg3v4zvfbpklTbxIuTrerebXokZfg6U3hOnDPbi_TG49vrDCtbXU1SjwRLhH1rmaXycAtKznSWRrHPrODcjpnXYObsf/s320/image_share3000005797074011.jpg" width="320"></a></div><br><div>All I could see was both of them cuddled in with each other.........unfortunately that never ever happened!</div><div><br></div><div><br></div><div>We moved to our wheelchair accessible flat in 2015 and were able to bring both cats with us. </div><div>We lost Barnaby in 2016 and Kit Kat in 2021 and decided we needed a break. Kit Kat had really bonded with Martin......actually they all do but we think that is because he feeds them, and even though we were both heartbroken when we lost her, it was sudden and she was only 14, Martin struggled with her loss so we didn't contemplate getting another one. </div><div> </div><div><br></div><div>I am on Facebook and on this particular day it was international pet day and there were photos of pets and people celebrating the day. I decided to put a post up wishing everyone a happy day, saying that we would get another cat one day! I was then contacted by a relative of Martin's, in Bournemouth, who explained she had a friend who runs a rescue centre in Poole and there was a cat that they wanted to get out of the area. She then sent a photo of the cat and she was a Persian! </div><div><br></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfBJ1-tssHosn_80ENldM1tUrUh0p1HWK-5ZQkNY6mXn1pQW91a6gG7WaWENoQmWFQvBOcbKXMyaiiN9H5eCjexbm_dr7qsCFdVFOxXQo8qziJ_dSUHbmQBW5_SR5Y0nkUM9L1fpU5N_DYSY6yJwWbs8X-pAIon05N5K2mAPA3oWdlqIYOdN_jFR5_qa3S/s960/received_490515838970650.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfBJ1-tssHosn_80ENldM1tUrUh0p1HWK-5ZQkNY6mXn1pQW91a6gG7WaWENoQmWFQvBOcbKXMyaiiN9H5eCjexbm_dr7qsCFdVFOxXQo8qziJ_dSUHbmQBW5_SR5Y0nkUM9L1fpU5N_DYSY6yJwWbs8X-pAIon05N5K2mAPA3oWdlqIYOdN_jFR5_qa3S/s320/received_490515838970650.jpeg" width="240"></a></div><br><div><br></div><div><br></div><div>Now a little back story! A few years ago Martin had seen a Persian cat and fallen in love with the breed, this was before grumpy cat! We had accepted that we would never get one though as we only ever adopt ours from rescue centres and a Persian cat would never end up in a rescue centre, would they?! </div><div><br></div><div><br></div><div>Apparently Rosie had been owned by an older couple, who didn't know how to deal with her, and subsequently she ended up at a wonderful rescue centre in Poole. </div><div>After a serious discussion we decided that it was too good an opportunity and we have a lot of love to give a pet who just needs a bit of attention........Little did we know then what we were taking on or just how much attention she'd want/need! πΉ</div><div>Having only ever rescued moggies, we approached this with the same attitude, the cat would guide us with what they wanted........she certainly does that! We knew that Persian cats were known to sleep a lot but we didn't know how fussy she'd be with her food or that she would come with SO much fur! We've only had domestic short haired cats before, never a long haired one and yes, she looks beautiful but that coat takes a lot of maintenance! So does the floor, Martin has never done so much hoovering! πΉ</div><div><br></div><div>It is something that, although we joke about her maintenance, we genuinely had no idea what would be involved. I groom her every morning but that wasn't enough to stop her getting huge knots and matted fur all over when her new coat grew. We ended up needing to get a professional groomer to deal with it all as she was in quite a mess πΏ </div><div>She had previously been allergic to the spot on flea treatment that we'd got from our vet. She had horrible patches over her and her coat didn't look good so her flea treatment was changed to a tablet, don't get me started about the production it takes to give her that......she is so intelligent, on one occasion she kept the tablet in her mouth until we put her on the floor and then spat it out! </div><div>We are lucky because we are at home all day so we are able to give her the attention she needs but we really had no idea what it would involve. She definitely tells us when she wants attention and if she's not getting what she wants she will sit on the table and stare at us until one or other of us gives in! πΉ </div><div>So our advice is to do your research! </div><div><br></div><div><br></div><div>Another thing that has really surprised us is just how entertaining she is and she really can be an absolute nutter. She uses the area going from the hallway into our lounge, through the kitchen, as a speedway track and it is hilarious to watch! πΉ </div><div>Even now, two and a half years down the road, she still entertains us on a daily basis and I know this helps me be able to concentrate on something other than my pain. She also finds new positions to sit or lie in and my phone is full of photos of her in a huge variety of different positions. She doesn't use the same space for too long either, she definitely appreciates different views! </div><div><br></div><div>Last year we bought her a tower because she was sleeping on one of our tall speakers. The trouble was she goes into such a deep sleep and the speaker surface wasn't very big so she would fall off! </div><div><br></div><div><div class="separator" style="clear: both; text-align: center;">
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</div><br></div><div><br></div><div>They really are a huge commitment but, in my opinion, absolutely worth it. It is not only the love and entertainment that a pet gives you, it is the knowledge that you are giving an animal a second chance and in our case, as we have no children, our cats are our babies. </div><div>We have a lot of love to give and how can you not love this face?! πΉ</div></div><div><br></div><div>XxXxX π</div><div><br></div><div><br></div><div><div class="separator" style="clear: both; text-align: center;">
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</div><br></div><div><br></div><div><br></div>Ameliahttp://www.blogger.com/profile/15005720150574964538noreply@blogger.com0tag:blogger.com,1999:blog-2399329897798113338.post-91377003239157459602023-11-19T20:16:00.001+00:002023-11-19T20:16:59.168+00:00Support and how important it is!Everyone talks about needing support and they are right! <div><div><br /></div><div>Over the years of having problems with my health, I have come to really appreciate having support and feeling cared about. It sounds like such an obvious statement to say but it's true!</div><div><br /></div><div>I was always such an independent person. I knew what I wanted and I went for it. But being diagnosed with a chronic illness meant I had to change my way of thinking and it is something that I am still working on......it has never come easy. I never expected to need so much help by the time I'm fifty but I'm incredibly lucky to have my husband, Martin, by my side and helping me with everything. I honestly have no idea what I would do without him. He is my full time carer and he does so much for me/us/Rosie but he will always be my husband first and carer second. </div><div><br /></div><div><br /></div><div>Support comes in many different forms, there is the support you get from the medical side. Mine started with my GP and then my MS consultant, who has been such a valuable person for me to go to when my symptoms change or I just have questions about the condition. I am so lucky with him as he is one of the best and has been involved with a lot of research over the years. It gives me the confidence to go to him when I do have questions. </div><div><br /></div><div>Then there is support from family and friends. </div><div><br /></div><div>I am blessed to have some wonderful friends who are really there for me. </div><div><br /></div><div>There is also the support you get from friends you make along your MS journey and these can be so important as they really do understand what you are going through. You can lean on each other when you're going through difficult times. </div><div>Of course social media has made it a lot easier to connect with people, whether they are from your past or when you are finding new support along the way. </div><div><br /></div><div><div>On the negative side I have also had people who have stopped contacting me because they haven't known how to deal with my situation but I've tried not to take that to heart. It is a difficult situation because if you don't have experience with illness or disability then it's difficult to know how to react to someone. I have found that honesty is the best policy and I am open and honest about my symptoms.....all of them. </div><div>It is quite obvious that I am disabled, especially when I'm using my wheelchair but just because I struggle physically my brain still works and I would much prefer that people talk to me and ask me questions directly. </div><div><br /></div><div>When you are given a life changing diagnosis it can be very easy to dig a hole and stay there, but try and remember that there are people around who are possibly experiencing similar things and who are happy to help you through. I know it's not true for everyone but reach out and there will be someone who will guide you. π₯° </div><div><br /></div><div>Sending love and Rosie cuddles</div><div>XxXxX π</div><div><br /></div><div><div class="separator" style="clear: both; text-align: center;">
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</div>Rosie giving her Daddy a massage!</div><div><br /></div><div><div class="separator" style="clear: both; text-align: center;">
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</div><div class="separator" style="clear: both; text-align: center;">Peekaboo! πΉ</div><br /></div></div><div><br /></div><div><br /></div></div>Ameliahttp://www.blogger.com/profile/15005720150574964538noreply@blogger.com0tag:blogger.com,1999:blog-2399329897798113338.post-7871800476479189982023-11-15T08:08:00.001+00:002023-11-15T08:08:57.704+00:00When you have MS.....When you have MS.....<div><br /></div><div>When you have MS......and then you get something like a cold, flu, sickness or diahorrea it can effect you a lot worse than someone who doesn't have MS. I never really appreciated that until recently when I suffered with a poorly stomach and horrible diahorrea. <br /></div><div><br /></div><div>I have, since early on in my diagnosis, struggled with constipation. It wasn't easy to deal with or to talk about to start with, but then I realised it was nothing to be embarrassed about. We all have to deal with our bladder and bowel and we really should talk about it more. If we were all more open about it then it wouldn't be embarrassing to talk about! </div><div><br /></div><div>Anyway, last week, for about four or five days I had something that I'm really not used to.......I had diahorrea! It started off as constipation that was difficult to get rid of but after trying a few techniques that I've learnt over the years, I was able to break the dam. This all happened in the early hours of Tuesday morning.</div><div>What followed was diahorrea but I expected that because that happens when you have been constipated for a while so I wasn't too worried at that point. The trouble was it carried on for about four or five days and for me to have that problem for that long was most unusual! </div><div>We are fairly sure it was just a bug and for anyone without MS this can be exhausting but I found myself very weak and totally shattered. I even spent one night sleeping in my wheelchair because I was disturbing Martin so much by constantly getting up.</div><div>It is the struggle I have just getting out of bed and it's driving me crazy. As my left leg gets weaker, just moving it in and out of bed takes so much effort and when you're weak from being poorly it makes things even harder. Plus you have the anxiety of desperately needing to get to the toilet so using my wheelchair was the easiest thing to do. It was another example to me that the wheelchair is a positive thing and not the negative that I have always seen it. To me, using the chair means that I'm giving in or that I'm just being lazy but I've finally realised that it's not any of those things at all. By using the chair I am helping myself, I am saving energy and am not in so much pain by the effort it takes to use the crutches, especially when you're tired anyway. </div><div>I can't believe it has taken me twenty years to stop being stubborn and to accept this! <br /></div><div><br /></div><div>It was a difficult week but as always I couldn't have got through it without Martin, and of course, cuddles & entertainment from Rosie!</div><div> </div><div>It really brought home to me how vulnerable I am to everyday illnesses and why getting all the vaccinations I can is quite important. Unfortunately I haven't been able to get my flu or covid jabs yet because of having my six monthly infusion of Ocrevus. When you have Ocrevus you can't have vaccinations until a certain amount of time has passed, because your immune system is stripped back. I will be able to have mine in the middle of January so until then I will need to keep away from any coughs and colds! </div><div> </div><div>Please keep yourselves snuggled up, safe and warm this winter.</div><div> </div><div>With love and Rosie cuddles</div><div>XxXxX π</div><div><br /></div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzaNGVfGZMA3psO_PyGMvAJSrNtJs9n0ZExqBlUnjI_naXSoB-oLkEYE9gZ5NOHUedYoQ1KZhdZ-IMija5wg34HHNftL2XmgTx5n5hHjxVwqzVZs-UNKNntd2gslKLVTjTH2vAbJ4tKuHu085SFrzzgaeX-r6J481EHocL2p34dUiQcFnBhfxj2pjLMqQc/s2577/IMG_20210530_125814.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1691" data-original-width="2577" height="210" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzaNGVfGZMA3psO_PyGMvAJSrNtJs9n0ZExqBlUnjI_naXSoB-oLkEYE9gZ5NOHUedYoQ1KZhdZ-IMija5wg34HHNftL2XmgTx5n5hHjxVwqzVZs-UNKNntd2gslKLVTjTH2vAbJ4tKuHu085SFrzzgaeX-r6J481EHocL2p34dUiQcFnBhfxj2pjLMqQc/s320/IMG_20210530_125814.jpg" width="320" /></a></div><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXiXt64raUHdimbguUsfCc_lREq2uyDntIn1gMWNILqTLRMBFxErhS19N8CF9-5Q2nkzkQYgWnbybe8LqCVkQBvRiPJLEbfLoyySau2OOkjNzI_hn_0kK2HaUJCcu7dlo4MWzekMLtAHnG78_zGL5I2Ui0Ok1EuoDjjYlkVrw0ObbHRw1exZfAyoys6pFe/s3387/IMG_20231102_181716.jpg" style="margin-left: 1em; margin-right: 1em;"><br /></a></div><br /><div><br /></div>Ameliahttp://www.blogger.com/profile/15005720150574964538noreply@blogger.com0tag:blogger.com,1999:blog-2399329897798113338.post-7824068768382765012023-11-07T15:47:00.001+00:002023-11-07T15:47:26.000+00:00COMING OFF PAIN MEDICATION Coming off pain medication.<div><br></div><div><div>A while ago, when I was in a good place & really positive about being proactive, I decided I wanted to look at all the pain medication I was taking and to see if I could come off any of them. I was looking at how many tablets I take every day & decided things needed to change......if they could. Unfortunately since I had this thought I have had to start taking medication for my bladder so I'm taking two more tablets, but they do make a difference so I guess that's worth it! </div><div> </div><div>Some of the things I take, like Levothyroxin for my under active thyroid, I know I can't ever stop taking but if there are things I could then I at least needed to try! </div><div> </div><div>I spoke to my GP, as I would never try anything like this without their input. She contacted my pain consultant & a plan was drawn up. We started off with Pre Gabalin also known as Lyrica & I was taking 300mgs twice a day.<br></div><div>At one stage I did manage to get down to 75mgs twice a day and I was tolerating that quite well but then I had a fall & ended up with sciatica in my arm.....who knew that was a thing?! I get a fizzing pain that goes from under my arm, down to my hand but only in my left arm! <br></div><div>So now I am back up to 150mgs twice a day but at least that is still half of what I used to be on! One of my reasons for trying to come off these drugs was to see if they were doing anything for me & it turns out some of them were! π</div><div><br></div><div><br></div><div>The next one I wanted to try was called Tapentadol or Palexia. I was on 300mgs twice a day. Again, I started the withdrawal slowly & with the guidance of my consultant/GP. </div><div>I am absolutely delighted to say that I have completely come off that medication and I can't tell you how much it has changed my life and I mean completely! It has really woken me up, literally, but also to the impact that medication has on us & not always in a positive way. I thought that a lot of my issues were symptoms of my MS but instead, it turns out that some things were actually side effects of the medication. </div><div><br></div><div>I really struggled with fatigue, which is a symptom of MS, but what I hadn't realised was the impact the Tapentadol was having. I generally wouldn't be able to get up before about 9am, on a good day, and I would be in bed by about 5 or 6pm. I came off the medication and now I am up anywhere between 5.30 & 6.30am, EVERY morning, and I stay awake until about 9 or 10pm and this is a daily occurrence! </div><div>It has blown my mind & I feel like a different person! </div><div><br></div><div>It's a bizarre turnaround but one that I have really welcomed. It's as though I have literally been woken up, I feel more alert and it's given me the realisation that I can't just blame everything on the MS. It's so easy to do that because it is a condition that has such a big range of symptoms and affects everyone SO differently. I've always said that you could have a room full of people that all have MS and we would all be different. Different symptoms, affecting us in different ways with totally different experiences. It's what makes diagnosing MS so difficult, it has to be given time to see what happens which can be incredibly frustrating for both patients and doctors alike. <br></div><div><br></div><div>In a way I was lucky with my diagnosis. I was referred to a consultant, who turned out to be one of the best, and I was officially diagnosed about 6 months after my symptoms started. I know that some people can go many years before they get a diagnosis and I can't imagine how frustrating that must be. I remember wondering if I was going mad and it was all in my head? My issue was that a lot of my initial problems were altered sensations on my skin and that wasn't something you could show people.....it still isn't! It's why, from the beginning, I have always found ways of trying to describe what the pain feels like so that I can try and give people some sort of reference.</div><div> </div><div>With medication, it is a really important point though, you only want to be on things that are actually doing something for you. I have been on so many different medications over the years, many of them were trying to target my neuropathic pain and I always just assumed that they would be doing what they were prescribed for. That was when I hadn't had any experience with taking meds and didn't realise that not all medications work for everyone. <br></div></div><div>With a condition like MS, things change over time and that is something that I didn't factor in with my medications. I would have come off or reduced my pain meds over the years if I had realised. Things that were prescribed for me ten or fifteen years ago haven't been or aren't working in the same way now because my symptoms/body has changed, so it is always worth reviewing them every now and then. It has taken me twenty years to work that one out! π</div><div><br></div><div>Sending much love & Rosie cuddles to you all</div><div>Amelia</div><div>XxXxX π</div><div><br></div><div><br></div>Ameliahttp://www.blogger.com/profile/15005720150574964538noreply@blogger.com0tag:blogger.com,1999:blog-2399329897798113338.post-54072754848548432092023-10-31T08:07:00.005+00:002023-10-31T08:59:33.561+00:00It's been a while - continued! It's Been A While - continued!<div><br></div><div> </div><div>Hi everyone!</div><div><br></div><div>I hope you are all well? </div><div><br></div><div>So continuing my update here are some more of the things that I've been dealing with! </div><div><br></div><div>My left arm and hand are noticeably weaker, I sometimes have difficulty cutting up some of my food. I have a very weird sensation in my left thumb which feels as though it's numb but a strange painful numbness. It's hard to describe, it's not an acute pain but a really odd altered sensation that I find quite bizarre.....but that's my body for you! π</div><div><br></div><div><br></div><div>I started having trouble with my bowels quite soon after I was diagnosed with MS & for many years now but that was helped greatly by the Bladder & Bowel team. I felt I was lucky that my bladder seemed ok, well unfortunately that has changed now. π</div><div>I spoke to the GP back in May & a referral was sent so when I hadn't heard anything after a few weeks I phoned them, only to be told it was a 6 to 9 month wait for an appointment! What was I supposed to do in the meantime? </div><div>We had to change our GP as our original one, who had been our Doctor for about 15 years and had seen us through my diagnosis of MS & then Meniere's disease and had helped save Martin's life in 2012 by getting him diagnosed with Whipple's disease (not to be confused with Whipple's procedure!) retired.</div><div>Fortunately, now we have a lovely GP, who prescribed me some water tablets, one for water retention & one for bladder weakness, which have been very useful and I'm thankfully able to manage it a little better! In the meantime she also got on to the Bladder & Bowel service and I have had an appointment through for the end of November! π Fingers crossed that they can advise me on the best way of managing the issues I'm having with my bladder.</div><div><br></div><div><br></div><div>I have always experienced neuropathic pain, in fact that was one of my first symptoms and I can genuinely say that I haven't had a day without pain since it started back in 2002. </div><div>It's a very bizarre sensation and one that you have to learn to live with or it will drive you crazy. </div><div>I have pain all over my skin but it started along the bottom of my feet, my legs and my lower back. I have always said that the pain along the bottom of my feet is like when you are walking along a beach that has that gritty kind of sand.</div><div>My lower back is a sensation as though someone is stabbing you with a handful of pins. It is a type of burning sensation. </div><div>I also now have a buzzing sensation, all over my body, as though someone has plugged me into the electricity. </div><div>As I sit here and concentrate on it, to describe it to you, it makes me feel quite sick, so I try not to think about it too much! </div><div><br></div><div>I have realised that I am now needing to use more equipment to help me with everyday things. I found this really frustrating and I would get really annoyed about needing to use things but I am slowly realising that these things are there to help me and I shouldn't look at it as a negative. It is allowing me to continue doing things myself or it is conserving my energy so that I am able to carry on doing things throughout the day. </div><div>My one big example of this is that I am still getting around by using my crutches although over the past few months I have been finding that a lot harder. I have an amazing electric wheelchair at home, that I have been very reluctant to use because in my mind I feel that once I start using it I won't stop! My thought has always been to keep staying on my feet for as long as possible and that the reality is that I'll be in a chair soon enough so I've never wanted to "give in". I'm now realising that by pushing myself to keep using my crutches hasn't been as useful to me as I thought it would be. By staying on my feet I've been pushing through pain, which is exhausting, and I've been using up energy that I haven't got. So I'm now using my electric wheelchair a lot more and have accepted that it is helpful and I'm not giving in at all! </div><div><br></div><div>I am trying to learn that not everything is a negative too. I have always been getting frustrated at what I can't do but, with help, I am learning to turn things around and look at what I can do instead. </div><div>I am needing to ask so much more of Martin, which I have found difficult. Not because I can't ask for his help, far from it, he is the one I always turn to. But I was always taught to be as independent as I can and to stand on my own two feet! So being in a position where I can't stand on my own two feet, sometimes literally, and that I have to ask for help has been quite challenging for me. I've never been one to sit there and let someone else do something that I could do but I'm now having to do that and that is a hard thing to get my head around! My head is my own worst enemy a lot of the time because I can see things that need to be done but I can't actually do them myself and have to ask someone else, which most of the time is Martin, to do things for me. I'm realising that trying to do something that I can't do is putting me at risk of having an accident and causing more problems which really isn't much help at all! </div><div><br></div><div>It really can be easier said than done and it's a hard and frustrating lesson to learn but I'm getting there........slowly! π</div><div><br></div><div>Sending love and Rosie cuddles!</div><div>XxXxX π</div><div><br></div><div><div class="separator" style="clear: both; text-align: center;">
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</div><br></div>Ameliahttp://www.blogger.com/profile/15005720150574964538noreply@blogger.com0tag:blogger.com,1999:blog-2399329897798113338.post-41956707361275995402023-10-22T18:31:00.000+01:002023-10-22T18:32:00.334+01:00Ocrevus - Ocrelizumab<div>OCRELIZUMAB INFUSION </div><div><br></div><p dir="ltr">OCRELIZUMAB or OCREVUS for short is a Disease Modifying Drug (DMD) which basically means that it is used to try and reduce the amount of relapses a person might have. <br>
This therapy is given when a person has 'active' relapsing MS, this means when someone is shown to be having relapses or that there are new lesions on their MRI scans. In my case my yearly MRI scans had shown new lesions on both my brain and my spine in <a href="tel:2022">2022</a> & <a href="tel:2023">2023</a> and I had experienced relapses twice over a thirteen month period, which was incredibly frustrating! <br>
Ocrevus is given every six months as an infusion, although the first amount is given as two doses to allow your body to tolerate it. You are also given a Corticosteroid and Antihistamine, which are given as a combined infusion, one before Ocrevus and the other after it. This is done to help combat any side effects you may experience as a result of the Ocrevus infusion. I am monitored very closely throughout the whole process and where I have mine done, a special unit has been set up. They use it for various different treatments and it means there are fully qualified nurses who are experienced with a variety of treatments. I have found this valuable as I am not the easiest patient! Fortunately, as my veins are not easy to find, I had a portacath (sometimes called a TIVAD) put in my chest a few years ago, when I started having Lidocaine infusions to help with my pain. The nurses always had difficulty finding a vein but then, when they did, I would find it excruciating when they put a needle in. It feels as though a red hot poker is being stabbed in my arm because of the neuropathic pain I have all over my skin. This was why the portacath was suggested & subsequently put in my chest as it helps both me and the nurses! </p>
<p dir="ltr">I have tried a lot of the different DMD's, that are available, over the years and there are many more available now than when I was first diagnosed! The list of treatments that I have tried over the years are as follows, some were more successful than others! <br>
I started on Rebif, then went on to Avonex, both of these were subcutaneous injections which I was taught to give myself. After those I went on to Tysabri, which was a 4 weekly infusion. This was when I was given my first portacath which made life a lot easier! I was on Tysabri for quite a while but it didn't feel like it was actually doing anything for me so, after talking to my consultant, I stopped it and the portacath was removed.<br>
I wasn't on anything for a while after Tysabri but when it was suggested that I try another DMD the next one suggested was Tecfidera. This was a good one because it was a daily capsule taken at home and they were sent directly to me, so I didn't have to go anywhere for my treatment! <br>
I stopped Tecfidera in March <a href="tel:2020">2020</a> and I wasn't on anything until I started Ocrevus in October <a href="tel:2022">2022</a>!<br>
It is an incredibly difficult decision when deciding whether to start or stop a treatment, it comes down to your decision, which is good but I never make that decision without the input of my consultant and Martin. I'm lucky with the support of both these people, my consultant, a professor, is very experienced and with Martin, he is the one who lives with the consequences of any of our decisions. I say 'our' decisions because any of my decisions are made with the full input and support of Martin. I couldn't do any of it without that support. </p>
<p dir="ltr">Back to Ocrevus! I am about to have my next infusion, it will be my third dose. I have to have a blood test a week or so beforehand so that they can check that I haven't got any infections.<br>
I block out the whole day for my treatment as it is three infusions with breaks needed to check for reactions etc. We make sure we have food and drink with us and I always take things to read or my phone to play games but I usually end up just talking to the nurses or other patients! <br>
The day starts off with a urine sample and then as long as everything is good I have the first corticosteroid & antihistamine infusion. This can make me feel a bit flushed but it is better than the possible side effects of the Ocrevus! After a 30 minute break I'll then start the Ocrevus infusion which takes about two and a half hours, depending whether they have to slow it down for any reason. After another 30 minute break I'll then have the next corticosteroid and antihistamine infusion. Once this is done and provided I'm not feeling any side effects, we can go home! <br>
This is given every six months which is a big improvement on an infusion every four weeks or a daily capsule! It's all still pretty new to me and my body so I can't say for sure whether it is successful for me yet. Time will tell and I'm ever hopeful so we're just keeping our fingers crossed for now!</p><p dir="ltr">XxXxX </p>Ameliahttp://www.blogger.com/profile/15005720150574964538noreply@blogger.com0tag:blogger.com,1999:blog-2399329897798113338.post-3062659566291765482023-10-13T15:37:00.008+01:002023-10-16T18:52:18.137+01:00IT'S BEEN A WHILE!!!<p><span style="font-family: verdana;"><span face=""Trebuchet MS", sans-serif">It's Been A While!</span></span></p><p><span style="font-family: verdana;"><span face=""Trebuchet MS", sans-serif"> </span></span></p><p><span style="font-family: verdana;">Hi everyone!</span></p><p><span style="font-family: verdana;">I hope you are all well? </span></p><p><span style="font-family: verdana;">It's been about 6 or 7 years since I last wrote a post on here, quite a lot has changed and I needed somewhere to process it all.......so I've come back here!<br></span></p><p><span style="font-family: verdana;">We, Martin, my amazing husband and I, moved to a wheelchair accessible flat in 2015 & I can't believe we have been here over 8 years! We lost our two precious cats, Barnaby & Kit Kat but now we have a complete nutter called Rosie, a Persian cat who entertains us daily! π»<br><br>It turns out that, as of 2023, I have been diagnosed with MS for twenty years, how did that happen? I also turned 50 this year and my wonderful husband, Martin and I celebrated our 25th wedding anniversary and after everything we have been through over those years - 28 from when we got together, it's been quite a year of reflection. <br><br>When I think back to my first symptoms of altered sensations over my lower back, down my legs and over the bottom of my feet, to today where I'm struggling to use my crutches, my left leg is very weak, it gets occasional spasms, I can't walk too far and I'm using a wheelchair a lot more of the time, to name but a few, it is quite a difference and not necessarily a positive one π<br></span></p><p><span style="font-family: verdana;"><br>My left arm and hand are noticeably weaker, I sometimes have difficulty cutting up some of my food.<br>I've had trouble with my bowels for many years now but that was helped greatly by the Bladder & Bowel team. I felt I was lucky that my bladder seemed ok. Well that has changed now and I'm waiting on a referral back to the Bladder & Bowel service. I spoke to the GP back in May & a referral was sent so when I hadn't heard anything after a few weeks I phoned them, only to be told it was a 6 to 9 month wait for an appointment! What was I supposed to do in the meantime? <br>Unfortunately we had to change our GP as our original one, who had been our Doctor for about 15 years and had seen us through my diagnosis of MS & then Menieres disease and had helped saved Martin's life by getting him diagnosed with Whipple's disease, retired. <br>Fortunately, now, we have a lovely GP, who prescribed me some water tablets so I'm able to manage it a little better until the long awaited referral! <br></span></p><p><span style="font-family: verdana;">I've had a couple of relapses in the past couple of years, one in March 2022 & another in April 2023. I've got a fantastic consultant who got me straight onto steroids, which I hate but they did help! I'd been having yearly MRI scans and after this latest one in April my consultant informed me that my MS has changed. I have new lesions on my brain & spine. It's very disappointing but at least it explains the new symptoms and deterioration. My legs have got worse, I've got issues, as always, with my pain, I'm struggling with my bladder & my mood has taken a dip. <br></span></p><p><span style="font-family: verdana;">I came off the DMD (Disease Modifying Drug) that I was on, Tecfidera & am now on something completely different called Ocrevus. It is another DMD and is an infusion but this one is given every six months. I am at the hospital for about 6 hours because they give you 3 infusions. There's one before & after the actual Ocrevus which are an antihistamine/steroid mix, this is to help you tolerate the drug & help with the side effects. I have mine done at a special unit in Plymouth and they are fantastic! I started in October last year - 2022 and so far I have tolerated it ok! π€ <br></span></p><p><span style="font-family: verdana;">I am still having my Lidocaine infusion which I have been having every eight weeks over the past few years (unless the hospital can't get me in!) I find it really helps me for about six weeks & then generally wears off. It doesn't get rid of the pain but it makes things a lot more manageable! Unfortunately this treatment has become very successful & popular and the hospital isn't set up for the demand. I have been told that they are having to go to a twelve week plan now, which I am not happy about π I definitely notice a difference once I'm over eight weeks & things can become unbearable. I am in discussions though & my GP is helping me to find a solution as the Lidocaine really helps me to manage my pain.<br></span></p><p><span style="font-family: verdana;">A while ago, when I was in a good place & really positive about being proactive, I decided I wanted to look at all the pain medication I was taking and to see if I could come off any of them. I was looking at how many tablets I take every day & decided things needed to change......if they could! Some of the things I take, like Levothyroxin, I know I can't stop taking but if there are things I could then I at least needed to try! I spoke to my GP as I would never try anything like this without their input. She contacted my pain consultant & a plan was drawn up. We started off with PreGabalin also known as Lyrica & I was taking 300mgs twice a day. I managed to reduce this one by half. I tried to go lower but my body couldn't handle it so I am now on 150mgs twice a day although in the future I might go back & see if I can revisit lowering that one further. I did manage to get down to 75mgs twice a day but then I had a fall & ended up with sciatica in my arm.....who knew that was a thing?! So now I am back up to 150mgs twice a day but one of my reasons for trying to come off these drugs was to see if they were doing anything for me & it turns out some of them were! <br></span></p><p><span style="font-family: verdana;">The next one I wanted to try was called Tapentadol or Palexia. I was on 300mgs twice a day. Again, I started the withdrawal slowly & with the guidance of my consultant/GP. I am delighted to say that I have completely come off that medication and I can't tell you how much it has changed my life........Genuinely! It really has woken me up, literally, but also to the impact that medication has on us & not always in a positive way. I thought that a lot of my issues were symptoms of my MS but instead, it turns out that some things were actually side effects of the medication. </span></p><p><span style="font-family: verdana;">I really struggled with fatigue, which is a symptom of MS but what I hadn't realised was the impact the Tapentadol was having. I generally wouldn't be able to get up before about 9am, on a good day, and I would be in bed by about 5 or 6pm. I came off the medication and now I am up by anywhere between 5 & 6.30am every morning and stay awake until about 9 or 10pm......and this is a daily occurrence! It has blown my mind & I feel like a different person!</span></p><p><span style="font-family: verdana;">As always, throughout all of this, is my amazing husband, Martin. I wouldn't be managing at all if I didn't have him & I don't know how I got so lucky! <br></span></p><p><span style="font-family: verdana;">Having celebrated 25 years of marriage I realised that we'd only been married for about four years when I got my diagnosis and rather than bolting for the door, Martin has been by my side every day. As I become more disabled he is having to do more and more for me. I wish people could see just how much as carers are really the unsung heroes of our society. <br></span></p><p><span style="font-family: verdana;"> </span></p><p><span style="font-family: verdana;">Well, that's my update for now but I hope to be writing more regularly again now so it would be great to hear from you all and see how you are all doing!</span></p><p><span style="font-family: verdana;"> </span></p><p><span style="font-family: verdana;">Sending out love & very much needed Rosie cuddles! π»</span></p><p><span style="font-family: verdana;">Big hugs XxXxX π</span><br></p><p><span style="font-family: verdana;"><br></span></p><p></p><div class="separator" style="clear: both; text-align: center;">
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</div><br></div><p><br></p><p><span style="font-family: verdana;"><br> <br><br><br></span><br></p>Ameliahttp://www.blogger.com/profile/15005720150574964538noreply@blogger.com0tag:blogger.com,1999:blog-2399329897798113338.post-56907621977436511822016-10-30T14:49:00.000+00:002016-10-30T14:49:37.029+00:00What impact losing weight can have! <span style="color: #660000; font-family: Verdana, sans-serif; font-size: large;">So, it's October which means Martin and I have been on our changed lifestyle for almost ten months now and we love it!! </span><br />
<span style="color: #660000; font-family: Verdana, sans-serif; font-size: large;"><br /></span>
<span style="color: #660000; font-family: Verdana, sans-serif; font-size: large;">But, let's start at the beginning!</span><br />
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<span style="color: #660000; font-family: Verdana, sans-serif; font-size: large;">At Christmas, Martin and I were having a discussion about weight and we both said that we would like to lose some if we could so we were talking about how we'd like to do it and all I knew was that I absolutely did not want to be on a diet! Now I know that sounds ridiculous.......how can you lose weight without being on a diet, what I meant was I didn't want to be following a diet, I have tried so many of them in the past and I, notoriously, don't stick to them and then I will end up putting even more weight on and be bigger than before I first started! I decided that if we were going to do this, our lifestyle would have to change. Martin decided that he wanted to follow Weight Watchers, which was perfectly fine but he was on his own with that one! </span><br />
<span style="color: #660000; font-family: Verdana, sans-serif; font-size: large;">We have a bit of a history with Weight Watchers as back in 2001 we both joined it and between us we lost in excess of 7 stone/44.45kgs in around eight months. We did that by joining weight watchers and getting all the books etc but then following it at home. We have gone back to that diet several times over the years but this time we needed to make a lifestyle change and look at it in a different way. This needed to be a permanent change, we didn't want to lose lots of weight, stop whatever we were doing and gradually put the weight back on which, again, historically, is exactly what we have done over the years, so this time it needed to be different. </span><br />
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<span style="color: #660000; font-family: Verdana, sans-serif; font-size: large;">It's funny isn't it, the memories I have of my childhood, I have myself as having a weight problem and yet when I look back at photos of me through my earlier years, I don't look "overweight" at all! The trouble was that I was always dancing or rehearsing for a show and I had decided that I wanted to go to a theatre college in London so image was everything. </span><br />
<span style="color: #660000; font-family: Verdana, sans-serif; font-size: large;">I started dancing at the age of three and I loved it but it meant hours of looking at yourself in a mirror! I don't have very cooperative genes either so I was never going to be stick thin! </span><br />
<span style="color: #660000; font-family: Verdana, sans-serif; font-size: large;">Then I was diagnosed with MS and I had a big relapse where my legs stopped working properly and I've been on crutches or in a wheelchair ever since. So when you are prone to being a bit larger and then you lose your ability to move around as you are used to, it's a recipe for disaster........no pun intended! Plus my head was all over the place and food is my "go to" comfort so it was inevitable that I was going to put on weight. What I hadn't realised was, as I explained earlier, I would start a diet but give up and whatever weight I lose goes back on plus loads more. </span><br />
<span style="color: #660000; font-family: Verdana, sans-serif; font-size: large;">And, ultimately, Martin and I love food.......just all the wrong types of food! </span><br />
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<span style="color: #660000; font-family: Verdana, sans-serif; font-size: large;">So, back to Christmas! πβπβπ</span><br />
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<span style="color: #660000; font-family: Verdana, sans-serif; font-size: large;">We wanted to lose weight but we needed it to be a long term change.......for the better. </span><br />
<span style="color: #660000; font-family: Verdana, sans-serif; font-size: large;">Martin signed up to Weight Watchers, he wanted the structure of having a specific routine, whereas I needed it to be freer......if we popped in to see my Dad, I wanted to be able to have a biscuit.....or three, when he made us a cup of tea! I didn't want to be restricted on what I could and couldn't eat, now don't get me wrong, I think Weight Watchers is fab but I had that light bulb moment a little while ago that I can't follow a diet because, in my head, there has to be an end point and we then go back to how we were eating before the diet.........I know, that sounds ludicrous but that's how my brain worked lol! </span><br />
<span style="color: #660000; font-family: Verdana, sans-serif; font-size: large;">But not any more!</span><br />
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<span style="color: #660000; font-family: Verdana, sans-serif; font-size: large;">This change needed to be a permanent change which meant a fundamental change in our lifestyle. We needed what we were doing to become our norm and not just something we were doing to lose weight. </span><br />
<span style="color: #660000; font-family: Verdana, sans-serif; font-size: large;">Having a couple of chronic illnesses and wanting to lose weight, I knew it wasn't going to be easy but that is where Martin has been invaluable with his help and support. With him doing WW I have probably done better than I might have done because I've used him as a guide! </span><br />
<span style="color: #660000; font-family: Verdana, sans-serif; font-size: large;">Whenever we have dieted in the past we would weigh on a Monday and then Monday night would be our "treat night". This would give us the chance, if we were craving something, to have it on that evening. This was fine except as we got further down the line we would be using it as an excuse to eat what you want and then "start again tomorrow!" But that just led to the beginning of the end of losing weight and we were both really adamant that this was not going to happen this time so we made a decision at the start that we would not be having a "treat night".....at all.......Monday would be our weigh day but then it would be like any other day.......this is what I mean about it being our norm, everything is how we want it to be permanently and not just while we are losing weight!</span><br />
<span style="color: #660000; font-family: Verdana, sans-serif; font-size: large;">This doesn't mean that we can't have a treat but every now and then instead of every week! This again was where I wanted and needed things to be different......my biggest downfall is ice cream, I can eat it any time, any where, any how......I love the stuff! I needed to be able to have it so every Monday I will have some ice cream.....the funny thing is that it doesn't really affect my weight loss......I am still losing weight so I don't see it being a problem! If I hit a plateau and am struggling to lose then I will cut back on it, or maybe not have it every week, but while I'm still losing, it's not a problem. Plus, I have so many rough times that I need something to help get me through them, now, whether that is just an excuse or not I don't care, while I'm still losing etc etc! π</span><br />
<span style="color: #660000; font-family: Verdana, sans-serif; font-size: large;">So, no takeaway was step one of our new lifestyle, step two was going to be a big step. As part of my MS I struggle a lot with fatigue, especially in the afternoon but when I wake up I'm not in the frame of mind to have a main meal so we decided to try having our main meal of the day at lunchtime and then some fruit and a snack at teatime. That, along with no treat day, was going to be a good base to start with! </span><br />
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<span style="color: #660000; font-family: Verdana, sans-serif; font-size: large;">And you know what? It's working! πππππ</span><br />
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<span style="color: #660000; font-family: Verdana, sans-serif; font-size: large;">As of today 22/10/2016 Martin has lost 70lbs or 5 stone or kgs........he has nearly reached his goal, and I'm so proud of him! I have lost 56lbs or 4 stone or kgs and when I think about all the things I have against me, with all my medications etc, I think I've done a pretty good job too! </span><br />
<span style="color: #660000; font-family: Verdana, sans-serif; font-size: large;">BUT I haven't finished yet, I've still got a lot to lose, but that's ok........I know we can do it, I know Martin will be by my side supporting me and this is the change we so desperately wanted and needed!</span><br />
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<span style="color: #660000; font-family: Verdana, sans-serif; font-size: large;">Just remember........Anything is possible.......especially if you have the will to make it happen and support around you! βΊοΈπβΊοΈ</span><br />
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<span style="color: #660000; font-family: Verdana, sans-serif; font-size: large;">Love and hugs </span><br />
<span style="color: #660000; font-family: Verdana, sans-serif; font-size: large;">XxXxX </span><br />
<br />Ameliahttp://www.blogger.com/profile/15005720150574964538noreply@blogger.com0tag:blogger.com,1999:blog-2399329897798113338.post-27932612293217467762016-08-20T14:08:00.001+01:002016-08-20T14:08:38.060+01:00Lidocaine Infusion to help neuropathic pain!<div>
<span style="color: #660000; font-family: Trebuchet MS, sans-serif; font-size: large;">One of the hardest symptoms I have and the most difficult for me to manage is pain.......specifically neuropathic pain. I have had neuropathic pain since I first started to get my MS symptoms back in 2002.....14 years ago, wow that's scary!</span></div>
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<span style="color: #660000; font-family: Trebuchet MS, sans-serif; font-size: large;">Like all MS symptoms, not everyone has every symptom. I know a lot of people who don't experience any pain as a result of their MS......It all depends which areas the lesions are on your brain and spine. </span></div>
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<span style="color: #660000; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">Before I had my first MS symptoms and consequently got my diagnosis, I never really went to the doctor about anything. I'm not embarrassed to say that I was always a bit scared of doctors, especially GP's! I don't really know why but I know I didn't like going to see them if I could possibly help it and it's probably why, when my symptoms first started, I left it a few days before even going to my GP, I was sure that, if I ignored it it would just go away.....wouldn't it? Ummm no! ;-) </span></div>
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<span style="color: #660000; font-family: Trebuchet MS, sans-serif; font-size: large;"><span style="font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif;">I am certainly not afraid of GP's, consultants, nurses, none of the medical profession now, in fact, I have been and continue to be looked after amazingly well! When you are dealing with a chronic illness or illnesses, you become the best expert of whatever condition or conditions you are dealing with. Martin and I have a wonderful relationship with our GP and my consultants across all my illnesses and my GP has said to me more than once that I probably know more a</span><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">bout MS </span><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">than she does now! </span></span></div>
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<span style="color: #660000; font-family: Trebuchet MS, sans-serif; font-size: large;">We have actually stayed with them all even though we've moved a little further away. They are all such an integral part of my support system and I couldn't bare leaving any of them at the moment! They have all been with me across all my diagnosis' and they all know me.....really well! </span></div>
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<span style="color: #660000; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">We are able to stay with our surgery, even though we now live out of the area, because they do allow it but each surgery is different. You must ask them first if it is ok....our surgery allows out of the area patients but you can't ask for a home visit. I haven't actually ever needed a home visit.....so far.....but if I did have any type of emergency I would just go to the nearest A&E! </span></div>
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<span style="color: #660000; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">Now, on to the Lidocaine infusion!</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0); color: #660000; font-family: Trebuchet MS, sans-serif; font-size: large;">I have a great pain consultant who last year suggested to me to try something called a Lidocaine infusion. Now, my understanding of it is that it is what is used for giving anaesthetic and because of that it helps to deaden the pain......it doesn't get rid of it completely but I get about four to six weeks where the pain is taken down a couple of notches and I'll take that! He told me that he'd been getting good results with it and he thought it was worth a try.</span></div>
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<span style="color: #660000; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">Pain is a very difficult symptom to deal with, I remember when my symptoms first started and I had no idea what was going on, I used to think it was all in my head! It is a symptom that drives me crazy and over the years I have thought, a lot, about how best to describe it to help people understand what it is that I'm feeling. It is one of those symptoms that no one can see and so it all goes on what I am saying and I hate that......what I feel may be very different to how someone else feels it.....what if I'm making more of it than I should be? </span></div>
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<span style="color: #660000; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">Of course that is ridiculous though because whatever I am feeling, if it is affecting me then it matters. It's taken me many years to be able to think like this though and many hours of discussions with a Neuropsychologist.......he would be very proud of me now though!! π </span></div>
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<span style="color: #660000; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">Just to give you some idea of what my painful sensations are like, here are some examples of what they feel like to me.</span></div>
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<span style="color: #660000; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">I get a sensation in my toes that feels like when you've been out in the freezing cold and you go back inside and your toes start to warm up but as they do they get a burning sensation through them. Unfortunately I can get this sensation without even going outside! π</span></div>
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<span style="color: #660000; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">I get a sensation in my lower back which feels like someone is stabbing me with lots of tiny pins or like someone has taken a small razor blade and is making lots of tiny cuts in my skin.........I also get this sensation in my feet and hands.</span></div>
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<span style="color: #660000; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">I also, very often, get a horrible sensation in my fingertips and they feel painfully numb. This always confuses me, how can something be painful if it is numb, surely if it's numb you can't feel it, but with neuropathic pain that's how it works.</span></div>
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<span style="color: #660000; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">So my pain consultant arranged for me to have my first infusion and I had it last year. </span></div>
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<span style="color: #660000; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">I was given a pain diary to keep a record of my symptoms to show how and if they varied over a three month period. I then sent it back to the pain management department and my consultant decides if it's been any benefit and whether it's worth having it again. I was blown away by the fact that according to my results, I had experienced about four to six weeks of a lesser amount of pain. It doesn't get rid of it and I still have bad days but on the whole, the infusion had definitely been worth it so I was booked in to have it again! </span></div>
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<span style="color: #660000; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">The second infusion was booked in for just before Christmas last year......I was actually delighted because it meant I would possibly have a bit of relief over Christmas.....and I did! Unfortunately as I was coming to the end of that infusion I came out in a bright red rash.....I was given a big dose of antihistamine and it went away so I was able to go home but my consultant was concerned that it had been an allergic reaction to the lidocaine. He was then unwilling to let me have any more infusions until I had been tested to see if I was allergic or not. Obviously all this took time but I had a challenge test done, which is where I was injected four times, once with just saline solution, the second was a Lidocaine mixture of 1 in 100, the third was 1 in 10 and the fourth was purely Lidocaine.......happily I am not allergic to Lidocaine! </span></div>
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<span style="color: #660000; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">I was actually fairly sure I wouldn't be because, after speaking to my MS nurse, I had found out that a rash, can be, a side effect of the new disease modifying drug I had started last year - Tecfidera! It is a strange rash, it's almost like a heat rash and it comes up on my left forearm, the upper part of my right arm and all across the top of my shoulders. It is prickly like a heat rash and can come up bright red too......but at least I know I am definitely not allergic to lidocaine! </span></div>
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<span style="color: #660000; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">Unfortunately, because of all that, I had missed my slot of having my third infusion because they wouldn't let me have it until they knew for definite that I wasn't allergic to it.......I totally understood why they had to do it and even though I had a proper explanation for the rash, they would not allow me to have another infusion until they knew for sure. But in the meantime my pain was escalating quite severely. </span></div>
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<span style="color: #660000; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">I had an appointment to go to the hospital, to the Day surgery unit, which is where they do the infusion so I put two and two together but came up with five because when I got there I was told I was having a pre assessment for having my collar button fitted in my ear......this is to help the vertigo I get from having Ménière's Disease! But that wasn't so much the problem, what really upset me was the fact that I was being told it would be September, at the earliest, before I would get this treatment....I was devastated!! </span></div>
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<span style="color: #660000; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">Now, as I have said, I generally do not go to my GP unless I really need some help.....or I'm really desperate.....at this stage.......I was really desperate! The idea of having to wait about four more months before having treatment that I knew was likely to help, I couldn't imagine how I was going to get through that wait so I went to my GP who was brilliant and she phoned the hospital straight away to try and speak to my pain consultant.......to my amazement she got right through to him! She explained that I was in a lot of distress and asked if there was any chance of getting the infusion done quicker but he explained to her that as this is a relatively new treatment he is only allocated two 2 hour slots a week, by the hospital, to administer the treatment, which means only two patients a week get it but because the treatment is becoming fairly successful, the more patients that have it, the longer the list gets for repeat treatments and that is why I am having to wait so long for my slot. He did say that he would try and look into it and see if he could get me in any sooner but in the meantime I just had to wait! My doctor did increase one of my pain meds, PreGabalin. I was on 150mg twice a day but the maximum dose is actually 300mg twice a day so I was able to increase that and I got to the dose that I am now on which is 250mg twice a day. It helped a small amount but ultimately what I needed was the infusion! </span></div>
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<span style="color: #660000; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">That phone call must have helped because a couple of weeks later I got an appointment through......I was going to have the infusion on 8th August. It was still about three weeks away but it was better than September! </span></div>
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<span style="color: #660000; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">It is so frustrating though because I knew there was a treatment that would lessen the pain I was in, so naturally, I just wanted to have that treatment as soon as possible but I was having to wait and it is so hard to explain how unbearable that waiting is. You have to live your life and get through each day because what other alternative is there but the pain just eats away at you. I am one of the lucky ones because I have Martin and he helps me through every day, every hour, every minute and without him I'm not sure that I could cope with it. It sounds like I am being a bit over dramatic.......I'm not, I'm just being honest. </span></div>
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<span style="color: #660000; font-family: Trebuchet MS, sans-serif; font-size: large;"><span style="font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif;">Anyway, the 8th August finally came round and I have had the infusion and finally my pain has started to lessen slightly. It's not a miracle cure and it will only last for four to six weeks but I will take that over nothing at all! When I had my infusion, it was given to me by some nurses though rather than my consultant because they are setting up the nurses as an extra service to enable the treatment to get to the patients slightly quicker........It effectively means that the waiting will be down to eight weeks in between treatments rather than twelve weeks.......</span><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">that was music to my ears.......I'll take that! π</span></span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0); color: #660000; font-family: Trebuchet MS, sans-serif; font-size: large;">Hugs to all</span></div>
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Ameliahttp://www.blogger.com/profile/15005720150574964538noreply@blogger.com2tag:blogger.com,1999:blog-2399329897798113338.post-17879578764024359882016-08-01T17:14:00.003+01:002016-08-01T17:14:56.278+01:00Stopping Tysabri and what happened next?! ;-)<span style="color: #783f04; font-family: Trebuchet MS, sans-serif; font-size: large;">I started on the DMD-Disease Modyfying Drug, Tysabri in 2010. It was a huge decision because having Tysabri infusions is not without its risks. But at that point in my life I wasn't actually on any of the other of the available DMD's. I had tried both Rebif and then Avonex, (both are known as part of the group of Beta Interferons) over a period of about 2 & 1/2 years but it got to the point, with both of them, that I didn't feel I was getting any benefit from being on them and having to inject myself and the side effects from that were just becoming too much of a problem. So I had a chat with my consultant and he agreed that I could stop them but then I wasn't on any type of DMD at all. </span><br />
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<span style="color: #783f04; font-family: Trebuchet MS, sans-serif; font-size: large;">I had started to hear a bit about a new treatment called Tysabri but that it came with some pretty scary risks.......people had died while being on this treatment........this needed serious consideration. I knew people who were starting on it so I asked them how they made their decision to go on it. Of course everyone is different and everyone's reasoning is also very different. If I wanted to consider this Martin and I needed to talk to my consultant and get the real facts about it so that we could make a proper informed decision. </span></div>
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<span style="color: #783f04; font-family: Trebuchet MS, sans-serif; font-size: large;">We took a couple of weeks to discuss it before coming to a decision......we went backwards and forwards on it but w<span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">e decided that I would go on it and just keep a close eye on things! I had my first infusion on 30th June 2010. It is a four weekly infusion and I had to go to the hospital in Plymouth to have the treatment because that was the only hospital, locally, that was set up to administer it. At that point there were less than ten of us having this drug so it was in the early stages of sorting out how to and where it could be administered. </span></span></div>
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<span style="color: #783f04; font-family: Trebuchet MS, sans-serif; font-size: large;">Not only was I nervous about starting the treatment but it was an infusion which meant I needed to be cannulated and because of the way my skin is and the altered sensations I get, it is incredibly painful for me to have any needle put in me! It's strange because I am not afraid of needles as such, I don't get worried about the needle itself, it is the pain that I feel when the needle goes in, it's like a red hot poker being stabbed into my skin and it hurts......a lot! </span></div>
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<span style="color: #783f04; font-family: Trebuchet MS, sans-serif; font-size: large;">So I had the first couple of infusions and the infusion itself went ok but the poor nurses that had to put the cannula in always had an absolute nightmare. There was one nurse who was particularly good at finding veins and so whenever there was anyone who presented quite a challenge, if she was on duty then she would be asked to help. I was already friends with this nurse going way back to when I had my first investigations done in 2002 (she held my hand and helped me through my first ever Lumbar Puncture!) and so if she was on duty she would have a go but I was always a challenge and not in a good way! I wasn't happy because my veins were getting harder to deal with and I would spend the four weeks in between each treatment worrying about the next time and would I be cannulated ok? I was seriously beginning to fear that if we couldn't find another solution I would have to give up the treatment.</span></div>
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<span style="color: #783f04; font-family: Trebuchet MS, sans-serif; font-size: large;">I went down to the hospital the next time and I was talking to a nurse I hadn't seen before. I was explaining everything to her and her first reaction was "why haven't you got a portacath in?"</span></div>
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<span style="color: #783f04; font-family: Trebuchet MS, sans-serif; font-size: large;">"Excuse me.......a what?"</span></div>
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<span style="color: #783f04; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">"A portacath!" </span></div>
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<span style="color: #783f04; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">She went on to explain that it is a small port that is put in your chest and attached to a vein in your neck. When you go for an infusion, the nurse feels for the port, the needle goes straight into that port and the infusion is hooked up. We had never heard of it but it sounded ideal! I emailed my consultant and asked him about it, he told me some more information and said he could get it organised if that's what I wanted. We decided that it couldn't be any worse than what we were doing anyway so it was arranged and I had the portacath also known as a Tivad, put in my chest. It was put in just above my right breast and it was attached to the vein in my neck.......it was so clever and meant that my treatment on Tysabri could continue! </span></div>
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<span style="color: #783f04; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">I actually stayed on Tysabri for just over four years. I had my final infusion on 28th August 2014. I tolerated it fairly well, I would have the infusion generally on a Thursday and I knew that the weekend was out, I wouldn't plan anything because I would always be incredibly tired and generally feel pretty rough but those three or four days were my only downside. </span></div>
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<span style="color: #783f04; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">My biggest problem was that I didn't feel any benefit by being on it. I knew people who knew they were coming to the end of their four weeks because they could feel a deterioration in their MS. They also felt the pick up after they had had the infusion but I never felt either of those things and that started to really bother me. </span></div>
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<span style="color: #783f04; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">It's true to say that I didn't have any major relapses (flare ups), I did have minor ones........they didn't feel minor at the time but there would never be anything show up on an MRI etc.......it's one area I always feel is a bit tricky. I know how I feel on a day to day basis so, in turn, I also know when things feel different. But those differences don't necessarily show up on scans which makes it difficult to say what is a relapse and what isn't? I always understood the definition of a relapse was an increase in symptoms or new symptoms that last for or longer than 24 hours. The trouble that I have is that I have several horrible symptoms on a daily basis so I then have to weigh up what is a new symptom or have the symptoms that I live with on a daily basis got any worse? </span></div>
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<span style="color: #783f04; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">It's never straight forward with MS. I will never forget in the first few years of having MS I met a doctor who said to me that the only predictable thing about MS is it's unpredictability and I've never heard a truer word spoken!! </span></div>
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<span style="color: #783f04; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">So I had my last Tysabri infusion on 28th August 2014. We took the decision for me to stop it because I just didn't feel like it was helping me. I had one weekend in four where I had to stay home because I felt quite rough, I wasn't feeling the benefits or downsides that I knew other people were and I know you can't compare, but you do use the information to assess where you are, so I just wasn't convinced it was the right treatment for me. We had a chat to my consultant about it and it was decided that I would stop for six months and we would reassess things then......unless anything happened before that of course!</span></div>
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<span style="color: #783f04; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">It felt a little bit strange not being on any kind of DMD because I have been on something for so long but it was ok! </span></div>
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<span style="color: #783f04; font-family: Trebuchet MS, sans-serif; font-size: large;"><span style="font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif;">I was fine for the first seven months but in March last year (03/2015) I lost a lot of the power in my left leg, my whole left side was very weak and my left hand wasn't working properly either. It didn't happen overnight, it came on over a couple of weeks which messed with my head a little bit. When something happens dramatically you know that there's been a change but when it slowly deteriorates over days and weeks that's when I start thinking "is it all in my head?!" My altered sensations were worse too, I had horrible stabbing pains in my lower back, which I get very regularly anyway but these were somehow worse! There was definitely a big problem with m</span><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">y left leg, it wouldn't move on it's own at all, I had to pick it up and move it. I couldn't walk without feeling really unsafe so I had to use my wheelchair whenever we went out and our house became a very unsafe place for me to live in. Our bedroom and bathroom were both upstairs but I didn't want to just stay up there, I wanted to be downstairs, so Martin barely left my side because when he did, I'd fall over.......with monotonous regularity! π </span></span></div>
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<span style="color: #783f04; font-family: Trebuchet MS, sans-serif; font-size: large;">It turned out that I was having a relapse as there were new lesions that had shown up on my MRI scan. </span></div>
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<span style="color: #783f04; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">I was given a course of steroids, oral ones, which are awful to take! They taste awful and leave a really horrid after taste........but then we are given a massive dose of steroids whether it's given by IV or orally. And, for me, historically, they have never really worked but in the lack of anything else, steroids was the only thing left for me to take and I haven't had them for years so we thought it was worth a try! I think they might have helped a bit this time but it's difficult to say because I also started a new treatment around that time too.</span></div>
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<span style="color: #783f04; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">My consultant wasn't happy that I wasn't on any type of DMD, he thought that being on something, even if it wasn't as powerful as Tysabri, was worth trying to keep any MS deterioration at bay. So I was introduced to a new drug called Tecfidera, also known as BG-12. Not been around long and to give us some idea of how strong it is we were told that it's stronger than the original Beta Interferons like Rebif and Avonex but it's not as strong as Tysabri! We decided that it was worth a try and to my absolute delight, it was explained that it's a capsule taken twice a day and it's delivered directly to me, so I don't even have to leave the house, at all, to have my treatment.........this I could cope with! π </span></div>
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<span style="color: #783f04; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">It's also worth remembering that all this was happening at the same time that we were offered the wheelchair accessible flat that we accepted and moved in to! It was amazing, I couldn't use a wheelchair in the house we lived in, there just wasn't the room........hence the reason I kept having several nasty falls. So to move in to a flat that's been build so that someone in a wheelchair can live comfortably, with everything totally accessible for them, was a dream come true........and having lived here for just over twelve months, it was the best decision we ever made.........being able to go to the bathroom, on my own, makes a huge difference to me and it's given me back a small amount of independence again. </span></div>
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<span style="color: #783f04; font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: large;">It's the little things that makes the biggest differences, it really is! </span></div>
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<span style="color: #783f04; font-family: Trebuchet MS, sans-serif; font-size: large;">Stay hydrated in this heat over the summer.......I'm looking forward to the cool of winter already lol!!</span></div>
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Ameliahttp://www.blogger.com/profile/15005720150574964538noreply@blogger.com0tag:blogger.com,1999:blog-2399329897798113338.post-84710323794805395692016-07-12T00:07:00.000+01:002016-07-12T15:08:29.285+01:00Lemtrada - can anyone help?<span style="color: #cc0000; font-family: Trebuchet MS, sans-serif; font-size: large;">I am writing this post on behalf of a friend. It has been suggested to her about going on to Lemtrada infusions but she doesn't know much about it. She reached out to me to see if I knew anyone who was on this treatment so that she could find out about the reality of being on it rather than just reading about it. Unfortunately I don't know anyone who has started this treatment but I told her that I would do a quick blog post to see if I could get any information for her. We all know what it's like to face the daunting task of deciding whether a treatment is right for you or not, I remember when it was suggested to me about starting Tysabri infusions, and these aren't your every day drugs without any risks, we took our time and tried to find out all we could about it.....so it's over to you, can anyone help a fellow MSer?! </span><br />
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<span style="color: #cc0000; font-family: Trebuchet MS, sans-serif; font-size: large;">Thanks, in advance! </span></div>
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Ameliahttp://www.blogger.com/profile/15005720150574964538noreply@blogger.com3