An MS Update – November 2023

Time for another blog post and MS Update!

I haven’t blogged for a while, but my excuse for that is that I’m still managing to do a bit of work, despite my ongoing MS troubles and I’m trying my hardest to keep up with strategies that I know help me to manage my mental and physical health. Incorporating healthy food, rest and meditation into my day is a must. I am also still trying hard to exercise within my ability – mainly exercises given to me by the physiotherapist and doing some stretches.

Taking this time out to meditate, along with the other “self-care strategies” really seems to help me keep my largely positive “glass half-full” mentality. Don’t get me wrong though, I have found things challenging over the past year or so. I thought, therefore, that it would be helpful for me to chat about what my life is looking like at the moment, as someone with secondary progressive MS. For context, I think I became secondary progressive about 11 years ago, but I have had MS for almost 30 years now. I did have stem cell treatment back in 2019, which appears to have stopped the active lesions that I was still getting, despite being secondary progressive.

I feel like the past year has suddenly hit me with a sledgehammer, for want of a better simile! I would say that it’s a mixture of increasing symptoms and disability which impact my life. It becomes a massive issue when your home doesn’t feel safe anymore (I’m sure that I will talk about this more in a future post) and you feel like your care is so disjointed that you don’t know who to turn to.

Over the past few weeks, I have been inundated with appointments – some in Sheffield, which is 2 hours away from my home, some 45 minutes away, and then others that are more local.  All appointments are for my MS and its symptoms, but, unfortunately, it really seems that none of the services ‘talk’ to each other or even agree on the best way forward.

Increasing Symptoms

Bladder Problems

As well as my long-term mobility difficulties, fatigue and cog fog, a new symptom that I have been dealing with over the past few months is recurrent urinary tract infections (UTIs). In the end, I had to ask for a referral to a specialist in order to find out why these were happening, even though I kept being extra careful and followed all recommendations to try and avoid UTIs. It frustrates me that the GP never seemed to make any kind of link between my recurrent UTIs and my MS. In fact, even if I didn’t have MS, I had so many infections over a five-month period that I should’ve been referred to see a Urologist anyway.  Long story short, I saw him last week and he has put me forward for further testing (including having a camera ‘up there’) and mentioned that I may have to start self-catheterising as I appear to be retaining urine which could be causing the UTIs.  I did this before for a short period of time after my diagnosis, when I had an MS relapse that affected my bladder; it’s not the nicest thing I have experienced. Other MSers, when I mentioned it on Instagram, did say how much it has helped them though, so that is really positive to hear.

My Spasticity

Not a new symptom, but definitely a worsening one. In fact, I would say that it is the number one symptom that affects my life. Basically, my legs, especially my left, are getting more and more stiff so that they are ramrod straight.  If I am walking with my crutches, they stay straight so my gait is rubbish. They help me stand at the sink to be able to brush my teeth, but not long enough to do the washing up before I need to use my perching stool.  I use a mobility scooter or wheelchair out of the house but it takes me an age to sit down in them and to get my legs to the position they need to be in.

I feel frustrated, because one doctor, a rehab doctor, discussed the use of a baclofen pump with me, but my neurologist was against the idea. He explained that if I were to have a baclofen pump, I wouldn’t be able to have further MRIs (as the pump is placed inside you). If I’m honest? I couldn’t give a flying you-know-what about having another MRI – what is it going to do, tell me that I haven’t got MS anymore? Obviously not. The skeptic in me feels like my neurologist just wants to keep me having MRIs as a way to monitor my outcomes following the stem cell transplant I had back in 2019.

The baclofen pump sounds ideal; it focuses the baclofen exactly where you need it (in my case, my legs), whereas the tablets that I take seem to affect every aspect of my body – making my hands weaker, for example. I just want to feel physically better.

The Postcode Lottery

The sad truth is that there is a postcode lottery when it comes to the medical care you can receive in England. I’m not up on all the care in other countries such as Scotland and Wales, but I do know that by living in a small town rather than in a big city in England, I am disadvantaged. The rehab doctor that I mentioned earlier had recently come from Sheffield, and he explained that there, all the clinicians work together to support a patient. The patient has a ‘one-stop shop’ for the care that they need. The different departments know what the others are doing and they work together to try and achieve the best outcome. They try and see the patient on the same day so that they are easier to access.  The nearest big hospital to me is two hours away and, as a result, I seem to have this piece-meal care, seeing some services locally and others at the ‘big’ hospital. And no one talks to each other, I end up being a go-between, chasing up my own appointments.

Despite these Stresses, there ARE Good Things Going on!

My Work

As mentioned before, I am managing to continue working as a speech and language therapist; luckily, this is a job that can be carried out online. I’m still managing to see a couple of children in my home-based clinic, but, as much as I absolutely love seeing the children face-to-face, I am struggling to get around when sitting on the floor with them, “playing”.

I’ve had the recent opportunity to take up some teletherapy for a Speech Therapy business, which allows me to choose how many hours I do, the days I do them and, best of all, I can wear comfy leggings and a lap blanket! Because of my MS and its all-day symptoms, there is only so much work I can do, but I’m pleased to be able to work even a small amount.

Meditation

I’m proud to say that I have been meditating for 20 minutes a day for the past month or so after a period of inconsistency. I have remembered just how much of a difference it makes to my mental health!  I first started meditating a good few years ago, but I had become a bit hit-and-miss with my practice. Regular practice really is the key for me, I think – I can’t explain why, but just taking that 20 minutes out to concentrate on my breath whilst listening to ocean sounds seems to set me up for the day. I’ve noticed that I am generally calmer as a result and I let things “wash over me” much more easily when I practice consistently.

Recently Caught up with my Sis!

This is a massive one to me because we are so close, but she unfortunately (for me) lives in Australia. She recently came back to the UK for a university reunion, so we had the pleasure of seeing her for a few days. When we’re together, it feels like we’re both kids again – but this time we are both allowed to drink alcohol! We had a few lovely meals and it was nice just to catch up face-to-face. Regular readers might know that I took the two children to visit my sister and her family in Sydney last year – both of my children absolutely loved it, so I’m determined to try and save up for another trip out there. It might be wishful thinking on my tiny ill-health pension and salary – I can but try!

Dark, Cosy weather is Here

I know that many people hate the winter months – there are lots of things that I don’t like about the cold and the lack of accessibility if there is snow, but I absolutely love the excuse to stay in.  I sit under a blanket, watch telly and drink hot chocolate! I’ve recently finished reading a book called “The Year of Living Danishly” by  Helen Russell and the way the author describes the time between Christmas and New Year – full of hygge and family time with no need to go out, sounds perfect to me.  I often wonder if I would be like this if I didn’t have a chronic illness? I suspect so! I remember when I was a child living in Canada, being all warm and cosy inside whilst looking at the snowfall and snow climbing up against our glass doors.  I think that set me up for a lifetime being a bit of a homebody.

One of My Favourite Books is on Telly

When I was in the hospital a few years ago, I passed the time by reading “All the Light We Cannot See” by Anthony Doerr. I’m yet to watch all of the TV programme, but the little bit that I’ve seen from the first episode looks good and I look forward to watching the rest.  It is the story of Marie-Laure, a blind French teenager, and Werner, a German soldier, whose paths collide in occupied France as both try to survive the devastation of World War II.  It is an emotional read that I loved.

Talking of books, I have also been consistent with reading – I have challenged myself to read 27 books this year and I have four to go.  Follow me and what I am reading on my Goodreads account if you fancy.  Any recommendations are welcome 🙂

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So that’s a quick catch-up about me. My day-to-day life is pretty basic as I struggle to get out and about a lot, but I am happy, especially as the weather turns colder. Hope that you are all well too.

Till next time,