My Incredible Shrinking Life – Living with Progressive MS

I remember the exact moment when I realised that my MS must be starting to progress: it was when I was going for my first run after having my daughter and my legs felt strangely heavy and kept tripping me up.

I knew that a common side-effect of increased body heat that many people with multiple sclerosis face is a temporary ‘flare’ or ‘pseudo-relapse’.  This correlation between heat and worsening of MS symptoms is known as Uhtoff’s phenomenon.  The effects are short-lived and do not constitute a relapse.  Relapses, on the other hand, are defined as:

“the appearance of new, or worsening symptoms, which last for a period of 24 hours or more in the absence of an infection or change in your core body temperature. Also, it must be 30 days since your last relapse.”

MS Trust

In my case, I had never experienced Uhtoff’s phenomenon in the first 17 years that I had had MS – I had relapses, yes, but very few other symptoms when I wasn’t relapsing.  I loved hot weather and exercise and I never noticed either of them having an impact on my MS. I understand now how lucky I was, as I definitely can’t say the same now! So, when the exercise back then resulted in leaden limbs, I knew my MS had progressed in some way.

Little did I know that I would never again be able to run or exercise as I used to; the heavy legs continued, showing up quickly, no matter what exercise I was doing – aerobics, walking quickly with the pram, even when playing ‘tickle monster’ with my then-toddler as I was crawling after him.  The progression continued, with sensitivity to heat and cold (making it difficult to swim in my local pool) and a heavy, dragging left leg that was there, well, all the time.  Not just when I was trying to get some exercise in.

By the time my youngest was at school – about three years after my stumbles when running – I was using a mobility scooter for the 7-minute walk to school.

Read More: I am THAT Mum

The confirmation that I had secondary progressive MS didn’t occur until five years after my first progressive symptoms; just like an initial diagnosis of MS can take a long time to come, so can the confirmation that your MS has changed category.  Even if you know something has changed, as I frequently said to my MS team.

Of course, MS progression isn’t always all physical.  As time has gone on, I have noticed subtle but real changes in the way that my brain works too, such as word-finding difficulties and an inability to handle conflicting noises (e.g. having a conversation at the same time as music is playing). Mental and physical fatigue meant that I could no longer hold down my work as a speech and language therapist for the NHS whilst caring for my family in the way that I wanted to.  What little energy I had was being spent at work rather than with my family and keeping ‘on the ball’ at work was getting more and more difficult.  Medical retirement came to me in 2018.

Read More: Almost 40, Grey and Jobless! Life Update

The thing with progression is that it, well, progresses.  And over the past couple of years, that is exactly what has been happening.  I had hoped that my opportunity to have a Haemopoietic Stem Cell Transplant (HCST) in early 2019 would stop my MS progression, but it hasn’t.  Well, not fully.  MRIs I have had since the treatment have shown that lesions have stopped forming (which is great, as they could have perhaps led to even more progression and disability than I already have).  But I was told that any old damage that had already occurred before the HSCT might still progress.  And it has.

Read More: The HSCT Chronicles

So that’s where I am: dealing with an illness that continues to progress and, as a result, my life feels like it is shrinking.  Just getting smaller month by month and year to year as MS progression grows and my abilities diminish.

My Shrinking Life

Past times that I have loved are getting trickier for me to access:

• Crochet is difficult when your fingers don’t want to work
• Gardening is tricky when you can’t lean down to the flower beds or sweep the path
• Reading a book is hard when your hands and fingers aren’t strong enough to hold open the pages
• Going to concerts with a group of friends is off the table when you are only allowed one companion ticket to sit in the accessible area
• The exercise that you can access as a physically disabled person gets less and less the more disabled you become

Everyday living that used to be easy for me now isn’t:

• Buttons and jewellery are too fiddly to wear every day without some help
• Doing the family’s washing is hard when you can’t carry wash baskets downstairs
• Standing under a hot shower is difficult with no balance and heat intolerance
• Enjoying a bubble bath is impossible when you can’t get out of the tub easily or safely
• Cooking for your children is hard when you can’t easily stand up next to the cooker or carry bowls and hot pans
• Keeping home – tidying and cultivating an environment that I want to live in is impossible when you can’t be on your feet for long
• Having joint experiences with friends or family can be difficult if they want to go somewhere or do something that you can’t access
• Going to see the newest release at the local cinema is out of the question when they put popular new films on the screen at the top of two flights of stairs and there is no lift

These are just the examples that come to mind right away.  I should emphasise the fact that I have friends and family that are only too happy to help me and I am so grateful to my children (age 14 and 12) who help me so much around the house and when out shopping. But it is just so frustrating that I can’t do things in the way that I used to now. I feel like not being able to stay on top of my house takes an element of me away – I like living in a clean and tidy home so when I don’t it feels like a bit of me is gone, but not willingly. Progressive MS has taken away:

• the kinds of clothes and shoes that I can wear
• the places that I can go to
• the amount of money that I can make
• being the kind of parent that I want to be for my kids
• my ability to be the friend that is always up for new activities or adventures

And I know that there is likely to be more to come.

Thoughts on Writing with Progressive Illness

I am conscious that I am blogging more infrequently now compared to a few years ago.  I am not one who wants to hear herself moan, but it is definitely something that I have been doing a lot of (internally) recently. I guess that I don’t want my moans and complaints to be constantly put ‘out there’ all of the time. I am so conscious that I don’t want to frighten others with MS but I am also aware that the progressive nature that MS can have is something that isn’t talked about often – and there are many of us out there! Sometimes, I wish that the support was there for progressive MSers like me and people with long-term and worsening illnesses.  I think that we need a new government for that (get voting!)

I like to think that people diagnosed with MS now will not have the same experience as I have had: diagnosed at a young age, not given Disease Modifying Drugs from the point of diagnosis, being told that they have ‘benign’ MS due to lack of clinical symptoms…. I truly think that if I had been given DMDs at age 15, when I was diagnosed, my life as a now 44-year-old would be very different. But there is no point in thinking that way as it doesn’t change anything.

Any Positives at All?

Sometimes, I try to think of the good things that I have in my life at the moment instead of thinking about the difficulties:

• I can be so grateful for the help that I do receive and for the fact that I am still managing to get out and about if I can; that friends will check if a venue is accessible before booking a visit
• I can be thankful that my ‘slower pace of life’ means that I can be at home with the kids more than I would have been if I still had my NHS job (even if they spend most of the time with friends or on their phones!)
• I can still enjoy some of my hobbies through the use of technology, such as audiobooks and YouTube (chair yoga)
• I have the time to try new hobbies (Zoom singing sessions for fun, an online water colours course that I bought ages ago but haven’t used yet)
• I can still do some private work for a few hours a week – this means that I can do the work that I love but in a way that works for me
• I can be grateful that spending time at home and with less work means that I get to spend more time with my parents
• My kids tell me that I am ‘very calm and chilled out’ (I don’t always feel it!).  I think that this comes from me not sweating the small stuff – I often think, ‘will it matter in a few years? No?  Then let it lie.’
• I can enjoy the little things and take time to notice them: the peacefulness of coffee in the garden, enjoying cat cuddles, truly lovely conversations with the kids at the dinner table when they are both getting on and enjoying the food I have made
• I can be proud of my strong will to stand up for what I, and others, need. I often wonder whether I would have that had MS not been in my life

It can be challenging to think about the positives of something that seems hell-bent on turning your life upside down and round and round.  Something that seems to shrink your opportunities and experiences, making you wonder, ‘if it is like this now, what the hell is my life going to look like in 1/3/5/10/20 years?!’  I am aware that having money would help me to live more comfortably (buying a bungalow, having a walk-in shower and lowered units in the kitchen… I can but dream!)  Unless I win the lottery that’s not happening though.

Am I as happy a person as I used to be? No.  But who knows what other challenges I may have faced had MS not been part of my life? I was debating on not posting this blog post but then I remembered that there are so many other people who have a progressive illness – MS or not – who will hopefully get some comfort in knowing that they are not alone.

I’m going to leave you with a couple of quotes that I like to remember when I am feeling defeated and rubbish.

Till next time,