For me, MS started as an annoyance. A collection of odd, non-specific symptoms like numbness in my foot, a slight tremor in my hand and occasional pins and needles. Annoying but they didn’t really stop me from doing anything. Then the fatigue kicked in, but I was busy. I’d moved, started a new job and was planning a wedding so I had every reason to be shattered, didn’t I? A few months later one eye became painful and the vision went blurry, but I thought it was caused by my contact lenses. However, a trip to the optician and then the hospital diagnosed optic neuritis and I started to join the dots. I had trained as a health professional so I’d studied MS and treated people with it so I was familiar with the symptoms. It wasn’t a surprise when the diagnosis finally came. I was given steroids to help with the eye and the vision improved but not 100%. And so it continued. Relapses with new symptoms or reoccurrences of old ones are followed by periods of remission. The relapses would pass eventually and things would improve, but each time never quite getting back to how it was before.
I and my family and friends got used to it. Relapse for a time and then better for a while. I had day-to-day symptoms and learnt that if I did too much or had an infection things would flare up. My residual disability became more each time and I eventually had to stop work. I started using a walking stick for getting around outside and eventually got a mobility scooter for longer distances.
But then there was a subtle shift a few years later. The relapses weren’t so frequent or so severe, but the residual disability became more of a problem. Then I began to notice a gradual decline. Again it was subtle. I realised that I couldn’t walk as far, my manual dexterity wasn’t so good and my vision was deteriorating even though I’d had no obvious bouts of optic neuritis.
My neurologist confirmed it quite bluntly at a review appointment when he mentioned in passing that I now had secondary progressive MS and had in fact told my GP in a letter the year before! It was still quite gradual until early 2020 when I couldn’t lift my right leg properly (up until then it was mainly my left side that was affected most). So as Covid reared its head in March of that year and everyone was stocking up on pasta and toilet rolls I panicked and bought an electric wheelchair! I didn’t want to be stuck at home unable to move around independently and with both legs affected significantly for the first time I was really scared that could become a reality.
So when lockdown was announced I was identified as extremely clinical vulnerable and told to stay at home for 4 months. I hardly left the house and my mobility really deteriorated and has continued to do so.
I and the people around me are used to my periods of illness, but I usually improve. This is different. This is decline. This is needing a scooter or wheelchair for even short distances. This is becoming visually impaired and having to stop driving. This is looking at my home and thinking about if a stairlift would fit and considering if I should choose carpet or wooden floor in case I need to start using a wheelchair indoors. Even though I’ve had MS for 25 years, this is taking some getting used to, because whilst I have lived with the unpredictability of a chronic illness that fluctuates this is coming to terms with deteriorating and not knowing how that will end. It is also helping those around me adjust to the new situation. I’m probably not going to improve and the likelihood is I’m going to get worse. I feel that I need to manage other people's expectations (as well as my own) and although I can still do lots of things I increasingly need to do them differently. Going out now takes even more planning than before! Unless we can park really close to wherever we’re going, I’ll need to take wheels or at least the arm of someone along with a walking stick. I’ll need someone to read the menu board for me in a café or describe what’s going on at the football match we’re watching or help me to cross the road safely because I can’t properly see the cars coming. I have always found it difficult to ask for help, but increasingly I have no choice. I don’t want to worry my friends and family and I try to keep positive, but it is so hard to see the anguish and concern on the faces of people watching me lurch and stumble as I struggle to walk. However, I am fiercely independent and will endeavour to do as much as I can on my own, even if I look slightly strange and wobbly doing it!
I am fortunate to have some really great family and friends who support me and we are negotiating this new chapter together.
I can’t think too far ahead about how bad things might get as there are too many unknowns that I have no control over. I try to keep a positive mindset and focus on the present and what I can do now. I find keeping busy (within my limits) and helping others helps me not to focus too much on myself. I am also making practical changes at home to make daily life easier. I have had a major declutter because if there’s less stuff, it’s easier to look after. I’m streamlining my storage so that everything has its place and is, therefore, easier to find. And the biggest game changer? A Robovac! I can set it on its way and the floor is cleaned without me having to lift a finger. Genius!
And the positives of needing the help of others more? If I need a lift to an appointment, a shopping trip or a companion for a concert, I get to spend more time with the friends and family who care about me and that can only be a good thing.
I’ve had MS for over half my lifetime. In fact, sometimes it’s difficult to remember what life was like before. This new direction it has taken is an unwelcome one, but I will negotiate the challenges as they come and continue to focus on the things I can control rather than those I can’t.
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I’m Jo, a Londoner now living in the north of England. I’ve lived with MS for over 25 years. First RRMS and now SPMS. I love music, watching sport (especially football), listening to audiobooks, meeting up with friends and I do like a good quiz. I try to keep a positive outlook, but acknowledge that this can be a tough journey to negotiate.
Instagram handle @jojolondoner
Twitter handle @jojolondoner