Birthday's and Spirited Away

So it was my birthday a couple of weeks ago and I did one of my favourite activities, eating ice cream! 🍨🍦🍨

We have a wonderful ice cream parlour, quite close to where we live called The Orange Elephant! When you drive along the dual carriageway, near to the turn off, there is an orange elephant statue with an ice cream in its trunk! Martin, my husband, and I have often commented on it in the past, never realising the significance of it 🤔 We only found out last year and it has become a place we like to visit on special occasions. 

What better place to go to on your birthday then?! 🍦🍨🍦

I have to admit I was a little worried about how I would be feeling over my birthday period because we had been to London just a couple of days before. We had been up to the London Colosseum to see the live action show Spirited Away. 

For anyone who doesn't know, Spirited Away is a Japanese animated film that was released in 2001. It was created by Hayao Miyazaki and Studio Ghibli and it is a most wonderful film. There have been many films released by Studio Ghibli and they are all beautiful but Spirited Away has always felt special to us. 

The Soot sprites! 

When Martin found out that they were bringing the live action show over to London from Japan, we were very excited and decided that we would try and get tickets, if we could. We found out that there was a dedicated phone number for disabled customers and we were ready to phone the minute the tickets went on sale! We thought we might have trouble getting through to someone but we were very lucky and got through quite quickly. 

We had bought our tickets, they were in a box as I knew I would need to go in my wheelchair but, I decided that I would transfer to my seat as I thought it might be more comfortable and convenient. 

We had booked tickets for a Wednesday matinee as we live such a long way from London. First of all we had thought that we would go up and back on that day but after thinking about it, it is about a four hour drive from where we are, we decided to book a Travelodge outside London so that it would break up the journey for Martin, who has to do all the driving. I haven't renewed my driving licence as I have to have a medical licence that only lasts for three years and as Martin loves driving, it's not a problem. 

We are both so happy that we got tickets for the show as it was amazing. It was beautifully done, using puppetry to bring some characters to life. That was so clever and I didn't look at the people operating the puppets, they were just so convincingly performed! 

Martin and I are both theatre nerds, as that is how we met, we were both performing, having trained in London! We also both worked in theatres in London before we moved down to where we are now, and it was only four years later that I had my diagnosis of MS. I'm so glad that we are living here and not in London because even though it is better, London is not disabled friendly 😔 But we were very lucky when we drove up because we managed, quite by accident, to get a disabled parking space just a couple of streets over from the theatre! We were right in the centre of London, so someone was watching over us that day! 

We had a wonderful time and thoroughly enjoyed ourselves. It was a great treat for us both and, as our birthdays are only eleven days apart, we bought it for ourselves as our birthday treat and what a treat it was ☺️ 

XxXxX 

As always, I will leave you with some special Rosie love! 😻

A special birthday gift! 😹

"Can I play with the wrapping please?!" 😹

Menieres disease and MS 😱

More than ten years ago now I was diagnosed with a rare ear condition called Menieres Disease - don't worry, I'd never heard of it either! 

It is a condition that can cause sudden attacks of vertigo and can affect your hearing. 

I would have these awful attacks of vertigo. It wasn't suddenly being afraid of heights but the feeling that the room was spinning, my balance wouldn't be good and I would feel, and sometimes be, horribly sick. For me, the only thing I could do would be to go to bed, close my eyes and try to sleep. Fingers crossed, when I woke up the attack would be gone. 

The trouble was, I had no warning of these attacks, it would happen completely randomly and out of the blue. It was one of the reasons that I stopped driving, I couldn't guarantee that it wouldn't happen while I was at the wheel and that was just too scary. 

It also caused real problems with the hearing in my left ear. I have been left with very little hearing and I have constant tinnitus but all just in my left ear. 

Tinnitus is the name for noises that don't come from any outside sources. You can hear noises such as whooshing, ringing, buzzing etc. and it can come and go or be permanent. My tinnitus is like hearing a waterfall in the background and was very off-putting to start with but I got used to it fairly quickly. 

I was given a hearing aid back then but eventually I stopped using it. I found it just made things harder to hear if I was in a crowded space and so I just adapted to my reduced hearing. 

Luckily after a few years, the vertigo attacks burnt out and that was such a relief. I haven't felt anything as awful as those attacks. The dizziness and feeling as though everything was whirling around me was just so unnerving and made me feel so poorly.

I have recently had a problem with my right ear, which took me straight back to those days and made me incredibly concerned that the Menieres was back but affecting my right ear now. Apparently, it's unusual, but it can affect both ears and the way my body challenges me, I wouldn't have been surprised if that was the outcome. 

I had experienced a very short vertigo attack several weeks before but it wasn't very dramatic and only lasted about ten seconds. That was quite unnerving too as I thought I was done with that. It didn't continue though so I didn't think much of it. 

Then last week I woke up with the same reduced hearing and tinnitus in my right ear. I really did start to panic as, to me, this was typical Menieres. 

Martin, my wonderful hubby, firmly encouraged me to contact the doctors and after getting in to see a nurse, she ensured me that it was almost certainly an issue with inflammation in my ears inner tubes and she prescribed an anti inflammatory spray. She told me it could take up to six to eight weeks to clear but it would probably be sooner, I had my fingers crossed that it would be. 

I am now about two weeks on from waking up with muffled hearing in my right ear and I'm pleased to say that it has almost cleared and the hearing has vastly improved. I am so relieved because it really did challenge me. The tinnitus and lack of hearing is still there in my left ear but after so many years having that, I am so used to it now and I can manage on a daily basis, but having the right ear affected too was really unpleasant so I'm glad that it has returned to almost normality, well normal for my body anyway! 😂

May is birthday month in our household with all three of us having been born in May, so we are sending out much love to all those who are also celebrating a May birthday! 🎂🥳🎉

XxXxX 💕

As always here is some special Rosie love for you all 😻

MRI SCAN NUMBER???

I had another MRI scan yesterday, I can't tell you what number it was though as I've had so many over the years.

I had my first scan back in 2002 when I had my first symptoms. I had no idea what it was or what it would involve and I'd be lying if I said I wasn't a bit nervous. I remember a friend saying to me to keep my eyes shut, so that you can't see how enclosed the space is, it was the best piece of advice as I know it is incredibly tight and I still do that to this day.

Unfortunately as I am not very active and am not able to move very well, I have put on weight over the years. It has always been something that I am quite sensitive about as I was a trained dancer and I know all about body conditioning but it has all gone out the window as I am unable to do any of it anymore. I wasn't sure how I would feel about going in to a tube to be scanned when I had my first one, but I have actually found that as long as I keep my eyes shut and I take my mind off to somewhere else, I am able to get through it okay.

As with everything, things have changed over the years too. Where I have had my scans they have provided headphones and will play a radio station for you to listen to but I was in a different scanner yesterday so there wasn't any music. You are given ear plugs anyway as the scanner is very loud and they still put headphones on you so that they can communicate with you while you're having your scans. When I had my first scans, over twenty years ago, I used to sing lots of songs in my head. I had been involved in lots of musicals over the years and so I would just sing the lyrics to myself and that would help make the time go by. It's what I did yesterday too 🎶

It goes without saying that I think I am quite strange. I have a body that never wants to work with me and always does strange things and falling asleep while I'm having an MRI scan is definitely a weird one. The scanner is very loud and it's not somewhere you would automatically think of to catch forty winks but I guess I am so used to it now and I imagine myself being somewhere else, I have my eyes closed anyway and I just find myself drifting off, it really does help the time go by quite quickly. True to form, I drifted off yesterday! 😴

The timings of the scans can vary as it depends how many parts of your body they want scans of. I had my brain and spine done yesterday, which is fairly standard and took about forty minutes. They have to move you up and down the tube depending on which body part they are doing. Sometimes they want to inject a contrast dye into your veins. I believe that it is just so that things will show up on the scan more clearly, which is fine, as long as they can access your veins successfully. This is another area where my body and I don't see eye to eye. My veins are not easy to access and because of the painful sensations in my skin, it is why I have a TIVAD (Totally Implantable Venous Access Device) in my chest, but not every hospital have nurses who are able to access it, but that's another story!

You don't get the results of the scans straight away as they have to be looked at by a radiologist. The results will go to my consultant and he will then let me know if there have been any changes since my scan last year. 

I've learnt not to expect anything anymore as, when I had scans taken over the first few years, I would feel that there had been changes to my symptoms but the scans wouldn't show anything. It was incredibly frustrating because it made me feel as though I was making it up. Now though the scans have been showing changes and I'm frustrated about that because it confirms my deterioration - I can never win 😳

So that's my MRI done for another year, now I can think about the next appointment which will be my next dose of MS treatment, Ocrevus, which is next week.......where did that time go?!?! 

XxXxX 💕

As always, Rosie is sending her love to anyone who needs it xxx 😻

In her own little MRI "tube"! 

Chronic pain Vs Acute pain

What is the difference between Chronic pain and Acute pain? 

Acute pain is normally a short timescale. It is the pain you feel after an accident, an injury or operation and generally will resolve itself once the body has healed.

Chronic pain is pain that continues after the body has healed or it is pain caused by nerve damage. This tends to be long lasting and doesn't necessarily resolve itself.

The pain I have is chronic pain, caused by nerve damage and I have had this pain since my symptoms first started back in July 2002. I can genuinely say that I have not had a day without this pain since it started all those years ago. 

Altered sensations and pain were among the first symptoms I experienced. I woke up one day with, what felt like, pins and needles in my left leg and the bottom of my feet. I thought I had slept awkwardly and assumed it would resolve itself but after a few days it was still there with the feeling more intense. 

I went to my GP surgery and, over a couple of weeks, I'd seen most of the doctors there. I had been given various suggestions about what it could be but each time I would go away and hope it would resolve but it didn't. 

I then saw a doctor who did several checks and eventually said that he wanted to refer me to a consultant neurologist. It was like he was speaking in a foreign language, I had no idea what he was talking about.

A consultant neurologist is someone who specialises in conditions that are caused by nerve problems or damage.

I got an appointment at our local hospital with a neurologist and was told he suspected Multiple Sclerosis. He hoped it would be a one off episode and that the altered sensations and pain would go away but it would need time for us to see what would happen. 

I ended up in the hospital in Plymouth, about thirty five miles away 

He organised the standard tests to diagnose MS, an MRI, Lumbar puncture, Evoked Potentials and various blood tests. You also have to give it time, to see what happens, whether the relapse resolves and leaves you with no lasting issues or if you do have symptoms, you need to see how those affect you. 

I know it sounds strange but I think I was actually really lucky with my diagnosis. I know of people who have struggled for years with various symptoms, that have come and gone over the years but have not had a definitive diagnosis. My symptoms started and within about six months I had a definite diagnosis. 

Finally, what I thought was all in my head and I was going mad, had a name and was a reason for what was happening to me. It was still very scary and I knew we needed time to see how my symptoms would develop, or not, as the hope was. 

Unfortunately a few months after my first symptoms started, I had another relapse, which was quite debilitating and left me in hospital. I have been on crutches ever since that relapse. 

It was about this time that I learnt about chronic illnesses and the difference between acute and chronic symptoms. My head was in a total spin but I had been referred to a wonderful consultant neurologist, who I still have today and is now a Professor. I'm so grateful for all the patience and support he has shown Martin and myself over the last twenty years. It is the support from the people with all the medical knowledge over the years, that has been so valuable to us both. My consultant, my wonderful GP and physio and all of the various services that I've used over the years, I am so grateful to them all. I knew that these people and services existed, but I'd never needed to use any of them until I was diagnosed with MS and suddenly a whole new world opened up for us. A huge thank you goes out to our wonderful NHS 🧑‍⚕️

It's amazing what an impact being in chronic pain can have on your quality of life. I wish I hadn't taken for granted all the things I used to be able to do, but I'm trying to look forward now and appreciate all the positive things I have in my life, of which there are many! 😄

XxXxX 💕

As I always like to share, here is some Rosie love for everyone 😻

At last!

At last........I have finally had my lidocaine infusion! 

It was about two weeks ago, and I am feeling about as good as it gets for me 🤩

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.

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! 

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 😊 

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. 

I keep reminding myself though, that any improvement is only going to come from me so I want to keep at it 💪😂

XxXxX 💕

As always I'm sending out some Rosie love to you all, so enjoy😻

Pain Consultant Appointment, at last!

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. 

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.

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. 

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. 

So what was I to do? 

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 effect🤞

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. 

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. 

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. 

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 😞 

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 😀

Amelia

XxXxX 💕

As always, I like to share a bit of Rosie love, she is such a sweetheart! 

She actually sat on my lap for the first time in ages! 😻

18 days.......but who's counting?

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. 

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. 

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. 

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! 😞

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. 

I know it will shock those of you who know me but I've always been quite headstrong and determined 😂 that does come in handy though because it is helping me to keep going with my physio exercises. 

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? 👍

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. 

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.

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. 

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! 

Have a good week everyone!

XxXxX 💕

As always I will share some Rosie love with everyone 😻

IT'S THAT TIME AGAIN!

It's time for my lidocaine infusion again and I'm feeling like I really need it 😢

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.

This is a big problem for me as between weeks eight and twelve I feel my pain increase quite severely. 

Guess what, right on cue, I am starting to struggle quite a bit. 

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 😣 It's hard to describe but it's really not pleasant and that's me being polite! 

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 💖

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.

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. 

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. 

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.

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! 

XxXxX 💕

As always, here is some Rosie love for you all, she has been quite amusing recently but then when isn't she?! 😹😻

"I will fit in this box!" 😹

Do I just accept this?

Having a chronic illness is SO frustrating!

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?

It's so difficult because, thankfully, my mind is still working - nobody comment on that one please 😂 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. 

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. 

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! 

I need to find other ways to move forward.

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. 

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 😳 We've still got boxes that haven't been unpacked which just fills me with horror 😱 But Martin did take some things to the tip yesterday which was brilliant! 

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! 

I used to collect Me To You bears, you know, the ones with the blue nose! 

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! 

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! 

I found a unique way to get rid of some....by knocking over one of the display units! 😳

I know I could sell them but we've decided to give them out to different charity shops 💖

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 👍

It's a lot easier said than done though! 

As always I'm going to share a bit of Rosie love with you all! 

Happy Tuesday everyone!

XxXxX 💕

Some more updates!

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. 

It is about a device called Peristeen. This is the link to the post I wrote back in 2016. 

https://talesoflifewithmultiplesclerosis.blogspot.co.uk/2010/08/peristeen-hard-story-to-tell.html?m=1

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! 
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! 

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.

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! 😂

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! 

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. 

I have found it quite a pleasant change to actually have my bowels working in a "normal" way for once!

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! 

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. 

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! 

I was emptying my bladder perfectly normally and that was a relief but it didn't explain why I was having "accidents". 

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. 

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. 

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! 👍

XxXxX 💕

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! 

The weather

The recent weather has been driving me crazy! 

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. 

But the contrast to that is when the temperatures go the other way I really struggle then too. 

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 🥶 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. 

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 £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 👍

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. 

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! 😜

I like to always share a bit of Rosie love, so here you are! 😻

I got a new perching stool delivered last week, so guess who thinks it's for her?!! 😹

Stay strong everyone

XxXxX 💕

Physio sessions

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. 

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. 

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! 😂 

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. 

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. 

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! 

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. 

It makes total sense to me now, I've always been a bit slow to catch on! 😂 

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. 

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! 

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.

I am working really well with Zoe and I am trying to keep my body as strong as it can be. 

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. 

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. 🤔

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?! 

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!

Please keep your fingers crossed that I can put these thoughts into practice and keep your positive thoughts coming too, thank you! 🥰

Love & hugs 

XxXxX 💕

Oh and some much needed Rosie love! 😻

My rock! 💕

It 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. 

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. 

I genuinely don't know what I would do without him. 

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. 

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!

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.

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 ☹️ 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. 

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. 

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. 

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. 

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". 

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. 

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. 

Me in Sweet Charity circa 2001

I haven't sung for quite a few years now though and my confidence has gone so I just sit back and watch!

I live my passion through Martin now, who is a wonderful actor and singer, so I love seeing him perform on stage. 

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! 😂

Martin in The 39 Steps

Martin in The Producers

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. 

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 😍

Rosie loved the Christmas tree! 😹

Stay safe out there everyone!

XxXxX 💕

COVID over Christmas 😷

Well that was a Christmas & New year that I know we'll never forget but for all the wrong reasons 😢

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. 

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. 

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. 

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. 

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?

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! 

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. 

I'm sure some rest would make me feel better wouldn't it?! 🤔

  

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!

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. 

It was all very unexpected and totally threw our Christmas plans out of the window.

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. 

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. 

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 🤧 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.

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'! 

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! 😇