World MS Day. Not a day for celebration, but one to raise awareness. Awareness of what MS is, and what it does. Also a day to remind that people with MS are very capable. Just with some caveats. I have mine and others with MS have theirs. It doesn’t mean no value, just there is small print. It is all a question of balance between positives and negatives. After thirteen years, I am still looking for that balance.
Self-Image
This reflection all started because, one day, I was drifting through Instagram. There were a couple of videos that, honestly, made me feel a little uncomfortable. People who were almost celebrating their illness. I then looked at my own feed and became annoyed with myself. Pictures cycling my bike and pictures of me in hospital, ready for my half yearly Ocrevus infusion. ‘Before’ is the key here as I look ok. I did take one afterwards and, it has to be said, I looked like shit. But I don’t share that one! So I am perhaps just as guilty of painting an unreal image?
I mean, I am still active, social, working a three day week. Am I actually chronically ill?
Being Ill
Well. Of course I am, unfortunately. I looked at a letter from my neurologist to my GP after the last meeting. It is all there. Initial diagnosis, second opinions from another hospital, a history of MRI’s with lots of history. It is a little scary. But also life goes on. I still work, albeit reduced hours. Still do nice things. Still ride my bike.
To do the nice things, though, I need a walking stick or walking support. Plenty of rest before. To cycle my bike means putting my foot on the pedal. Which is much harder than it used to be. This is where learning to balance comes in.
The Balance Between Positive and Negative
Like everything in life there are good and bad elements of MS. The good elements are not part of the illness but, rather, successfully working around it. That can be fun to centre on, writing about cycling or going to a good concert. Against this, MS always seems to have a way of making itself heard. That may also be me, of course. Mentioning that, during a cycle ride, it can be hard to get my foot on the pedal. Or the need to remember my stick if I go anywhere. I did forget it once, it was a pain.
The problem is that I could make this blog all positive or all negative. Both would be tiring to read. And unreal. Life is full of good and bad days. Light and dark. I could make this all seem very positive. That would be a lie. It isn’t always positive, no way. So where does the balance lay.
Celebrating the Good Days, Acknowledging the Bad
In the end, the good needs to be celebrated and without apology. However, the issues also need to be acknowledged. It is all part of this life. I cannot enjoy the good without factoring in the potential consequences of the bad. The trick is to make it nothing more than that. A consideration. It is very difficult to be completely carefree, though. I told my physio about some near falls just from turning around or standing up. Her response was simple. ‘Pay attention to the small things’. Outright celebration is difficult when you know that, in reality, there will always be an extra amount of care needed through every day life. Slowing everything down.
The ‘In the Way’ Factor
Of course, others see this. They increasingly hear it as well. Writing is easier than talking and I know that I can come across as slow, a bit dim. I am pretty easily overpowered by… whatever is going on. Sometimes the wrong words come out. I can remember times where I have felt relaxed, opened my mouth and absolute cr*p comes out. I carry on talking even though my lizard brain is saying ‘stop, stop’. Then a bird flies over and that’s it! Attention gone.
It is rare to get a bad remark from anyone. People who don’t know me have done so. Never anyone I know although they do say when they notice. Happy with that, it gives more information when working with Neurologists and Rehabilitation Specialists. Signs of MS Progression that rehab specialists can work with. Still, I always need to apologise and say ‘It’s my MS’. Robert Douglas-Fairhurst wrote about this in ‘Metamorphosis: A Life in Pieces’. A perpetual state of apology for what MS causes, physically and cognitively that also acts to ease the discomfort of able-bodied friends. You can’t help but feel a bit in the way because you slow everyone down or need longer to explain what is in your fragmented mind.
I was always being told to say sorry less. That is really screwed now.
Loss of Identity
The worst aspect of all this thinking about balance and perception is loss of identity. In my own mind I am becoming ‘Steve with MS’ as opposed to just ‘Steve’. All this factoring in and consideration means plain enjoyment is always less. Take the bike. I truly want to make the top of Mont Ventoux, it will be ten years since Climb Against MS ride, a huge personal highpoint. I want one more picture alongside that sign.
But ‘Steve with MS’ is already starting to doubt it. Never mind my legs, what if my hands are too weak to change gear? In a sense, what I am capable of is being eroded and, with that, a sense of self-worth. My identity is slowly being consumed by MS, my self-belief. It is hard to fight against.
Balance on World MS Day
Fight I must. Not in the way of the past where I would take off and do an insanely fast long-distance rider to mark World MS Day or just cycle up Mont Ventoux, as was the case in 2017. I will hopefully manage that this year with a little help. More than I used to need. I may not make it. But that is not the fight now. Fight is perhaps the wrong word. Now it is keeping a sense of balance. Realising that MS changes me, how I behave. Psychologically, cognitively, physically. I have to live with that and the people around me do too. A simple start, for me, is that balance. Enjoy and remember the good. Try to accept the bad. Live with it, even if I do not like it. And reflect that in how I communicate what I do. Sometimes a picture on a bike on Instagram, perhaps sometimes laid out on the sofa post-infusion, feeling like sh*t and looking it too.