It is strangely therapeutic to keep a blog. Sometimes it is just nice. Scribbling about cycling, about painting, about reading. There are also things that are not that nice to write about. Still it is important to do it. I don’t like false positivity or toxic positivity or whatever you call it when being positive for the sake of appearances. Important to stay truthful. At the same time, a blog with only the less positive elements is going to be tiring.
But it is difficult dealing with Multiple Sclerosis. Tiring. I cannot hide that. I also choose not to hide it in this blog. It would be a lie. It is also good to set what I have into context. What I deal with. It hurts a little to set the truth down.
Being Truthful
When I was diagnosed it took awhile to mention it on this blog. About five months. Up until that point I was mostly writing about my wine course. All of those posts are gone. The distraction of cycling and my big challenge rides took over. Acts of resistance as I saw them. Lots of fun as well. That changed with time. There is just more MS and consequently less of other things. I absolutely do not have a bad life. A comfortable home, the support of a great medical system and a lot of nice people.
It is just progressively worse, more difficult to do things. I can still do them but they take longer if the mind is involved. If it is physical exercise, I cannot do it for so long.
The Dull Side of Truth
There is one big problem in writing about the problems with MS. They are actually pretty dull! What is there to write about when you’re laid around, doing nothing. Or having a cognitive issue such as indecisiveness. Cycling up a mountain is a bit more interesting. More interesting to do and more interesting to write about. Hopefully more interesting to read about as well, unless you have a pathological hatred of cyclists…
That may sound like it is trivialising chronic illnesses. It is not trivial. I just find it difficult to actually say anything interesting about the symptoms. I have tried. Not the most magnetic read, though. What is exciting to say about laying around, drifting off to sleep with Netflix on in the background?
I suppose I could write a review of whatever I am watching on Netflix but… not sure it would be that interesting.
All Encompassing
The problem is that MS gets its trivial, miserly hands in everything. Grabs it, holds it. Any little tick or pain. You ask yourself ‘is that MS?’ Of course I cannot assume it is. This means trips to the doctor. The last was about my MS Hug which felt worse. As usual, nothing else was wrong. You still need those checks, though. The fear is allayed. Just MS.
The limp is now noticeable, the fatigue and cognitive issues. They are increasing. And always on my mind. Although one of the cognitive problems is that my mind is all over the place. So perhaps not always on my mind. Because my mind is not always where it should be! Then there are the contradictions of the condition, like being able to ride a bike but barely able to hold a pen. There will be another post on this so will leave the subject of contradictions for now.
The Truth Hurts
Setting all of this down, I realise it is not inconsiderable. I am not remorselessly positive about living with MS. I know it can also be so much worse. Yet it can also be better. I find it important to be honest on this. I am not resilient. Stubborn is a better word and stubbornness is not always a positive thing. Stubbornness leads to mistakes. It leads to doing too much. And the price of that is… not that interesting. Not to read about or do. Or not do.
Still, that honesty thing is important. That can hurt as you realise life is becoming a little less. But false positivity also hurts. Like everything, a balance is needed. It actually feels better to set it down. I don’t demand that it be read. It is just there, a small set of words among billions on this worldwide web. They’re mine, though. And they are true, no matter how much it hurts. And it does hurt. But feels a little better to say it. Strangely therapeutic.