My MS Life Update – June 2024

Time – finally! – for another post. My recent silence when it comes to blog writing gives you a big clue that things have felt crazy-busy for me over the past few months.  I have managed to fall into a routine with work, which is great, but this coincides with struggling to keep on top of my MS symptoms. Busyness at work means that the strategies that I have been using over the years to keep on top of my MS symptoms have been put on the backburner somewhat.  It doesn’t help that I have lots of things to blog about and that I keep telling myself just to get writing and then, when I don’t, I end up feeling guilty.

To that end, my plan in this post is to briefly let you know about everything that’s going on with me and to talk in more detail about the individual subjects in future posts. So, without further ado…

My MS Life – Work

Since just before Christmas, I’ve been able to continue my work as a private speech and language therapist through the use of Zoom teletherapy. This has been great, as it means that I can still use my skills but, as everything is online, I don’t have to worry about trying to get around my house to get prepped for the session – everything is already here on my computer. I’m only working for a few hours a week, some of which is dedicated admin time and I am free to do this as and when it suits me. So, if I need to stop and have a nap, I can. And I can do my work wearing joggers and just put a smarter top on to look respectable.

However, even a few hours a week seems to greatly impact my fatigue levels. I struggle to do the therapy and the admin in one day, so the few hours of work a week stretches over several days. This, then, impacts my ability to carry out stretches and exercises that are vital for my MS health. I love the extra bit of money and how working helps my mental health, but finding that balance is tricky. It’s the same difficulty balancing work and my MS that I had back in 2018 when I was struggling with my work in the NHS and ultimately applied for ill-health retirement.

My MS Life – Mobility and Brain Fog

Although I have a plethora of symptoms, the two biggest ones that I deal with are difficulties with my mobility and brain fog.

Mobility-wise, I used to use a walker outside to hang out the washing, go to our outside freezer or water the flowers. I now have to use my wheelchair any time I’m outside the house and, to be honest, I need to use it inside too.  (The house is an ongoing saga about making it more accessible, so I’m sure that I will write more about that when I have something definite to tell you!) Deterioration and decline can be subtle: I am not sure if others notice but, when I am on my feet, I just generally feel less stable than I did this time last year and my balance is pretty rubbish.

I’ve also noticed that my memory – or lack of it – is worsening.  I keep having this situation where I’ve been told something and then I forget about it just a few hours later. For example, a friend told me to watch a particular movie and what it was about and I couldn’t remember anything about it – the title, the actors, the rough storyline – later that afternoon.  My word-finding difficulties and my ability to concentrate in busy and noisy environments are also becoming more noticeable.

My MS Life – Medicine and Mobility Aids

I have started on a new medicine called  Siponimod (also known as Mayzent). It is a disease-modifying treatment for active secondary progressive MS that slows down disease progression in some people. I haven’t had a recent MRI to check that I have active disease but they were keen for me to try something that could potentially help my worsening disease (you may remember that I had stem cell treatment back in 2019, which appeared to stop my active disease for a few years). I haven’t had obvious relapses but I know from my previous history that damage can be happening even if it’s not obvious. I am waiting for my consultant to refer me for an MRI in the near future.

Along with medicines to help my symptoms (e.g. baclofen for muscle relaxation, solifenacin for bladder urgency and duloxetine for chronic pain), I also have botox injections in my legs and use FES (Functional Electrical Stimulation) to help with my foot drop. It is difficult, however, to coordinate the appointments together so I have the best outcome. The botox helps to relax my spastic muscles and the FES uses electrical stimulation to help lift my foot, but the FES doesn’t work so well if the botox has worn off. I am sure many have the same issue: services just don’t coordinate, so patients’ treatments and appointments rarely happen when you need them. On a more positive note, I did have a very good FES appointment the other day; the specialist physio was so helpful. And we spoke about how use of the FES may, in some people, aid with strengthening neural pathways so that muscles work better, even when the FES is not worn.Services just don't coordinate, so patients' treatments and appointments rarely happen when you need them #MS #PostcodeLottery Share on X

My MS Life – Family

I looked at previous posts the other day; my first one was written in March 2016. My kids were only 5 and 8 then! Fast forward to 2024 and they are 14 and 16 and life looks different to how it was in 2016. Since then, the kids have grown into caring and compassionate teenagers and I no longer have to write posts about entertaining them when I am shattered with fatigue! They are still going through the experiences of being teenagers though, so I do have to deal with all the normal parenting trials and tribulations!

My husband and I had a period of separation as we both came to terms with how MS and its symptoms were affecting our lives. I’m pleased to say that we are together again with our relationship being stronger than ever. The reality is that nobody knows how they’re going to react to chronic illness until it happens to you. Life is pretty uneventful now, but that’s as I like it – a good book or a Netflix show sounds perfect to me.

My MS Life – Fun

I tend to prefer spending time at home to being out and about, simply because it is so much easier for me to rest and save the spoons I would need to get ready to leave the house! I love reading and have set myself the challenge of reading at least 30 books this year and I am using my Goodreads account to keep focussed. Some books I have enjoyed recently: The Household by Stacey Halls, The Women by Kirstin Hannah  and The Binding by Bridget Collins.

Telly-wise, I have really enjoyed ‘Better Call Saul’, the prequel to ‘Breaking Bad’, which took me a while to get into but I loved it by the end. Definitely watch ‘Breaking Bad’ first though, otherwise it might be a bit confusing. The Breaking Bad franchise is not loved by everyone though, you have been warned!

We have a holiday booked in Wales for the summer, so the whole family are looking forward to (hopefully) nice weather and time at the beach. I would like to go in a cable car up Snowdonia and also to complete the fastest zipline in the world (and the longest in Europe!).  I reckon that’s a good opportunity to raise some money for MS research too.

I still manage to get to friends’ houses or the pub if I am not too fatigued and it’s great how my friends understand that I can’t do everything I used to do. At the moment, I can get to their houses using my wheelchair and then transfer to my crutches to go into their home; I do wonder when this is going to be too difficult though. Being disabled makes you realise just how inaccessible most homes and shops are!

My MS Life – 30 Years Diagnosed

I’ve had my 30-year MS diagnosis anniversary! That means that I have lived with MS and its symptoms for at least 32 years as I had my first relapse (optic neuritis) two years before my diagnosis. I was 15 when I was diagnosed. In some ways, I think my diagnosis at such a young age had its blessings; I didn’t really understand what MS was, and there was no support back in the early 90s in terms of websites or forums to learn about it and share information, so I was pretty much in the dark. I feel like an anomaly because I’ve had it for so long yet I’ve had minimal DMTs.  I love that there are so many new medicines for newly diagnosed people and that the support is there (for example through Shift.ms and MS Together). In some ways, I feel very envious because so much more is available now. I wish that I had had the opportunity to start medication right away; that’s what I would say to someone who was diagnosed with MS now.

I wish that I had had the opportunity to start medication right away; that's what I would say to someone who was diagnosed with MS now. Share on X

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So that is my little update about my MS life as it is right now. I hope that it offers comfort to others living with long-term MS, like I am. At least to make you feel less alone and that somebody understands what it’s like: life can be difficult, but also fulfilling. Surround yourself with positive people, put your need for rest at the forefront of your health goals and look for alternate ways to keep yourself happy, even if it means changing how you do it.

Until next time,