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! 😇