Wednesday 28 February 2024

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 😀

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! 😻

Monday 19 February 2024

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 I will, for as long as I can! 

Have a good week everyone!
XxXxX 💕

As always I will share some Rosie love with everyone 😻

Monday 12 February 2024


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!" 😹

Tuesday 6 February 2024

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 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 💕

Tuesday 30 January 2024

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.

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! 

Monday 22 January 2024

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 💕

Monday 15 January 2024

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! 😻