A lot seems to have happened without much actually happening. The results of the neuropsychological tests I previously described were not shocking. I am actually quite bright (no laughing at the back) and my memory is good, which is a surprise. These are compromised by poor concentration and, more fundamentally, mental processing speed, the latter being the base of all things cognitive. I will remember something or make an inspired decision. It will just be two days late. Part of it is the personal erosion that comes with living with Primary Progressive Multiple Sclerosis.
I knew progression was happening, didn’t I? That was part of the equation from day one. So what is so different now? Quite simply, there is now clear evidence, on paper, of the impact the lesions in my brain are having. This hit me a little harder than I expected it to. It has also made me consider many elements of how I live my life. One of those was this blog and what I capture in it.
The Feelings Behind the Results
Before considering this blog I will try to put the results in context, explain how they feel. To me, this is the embodiment of the slow erosion of my capabilities and, through this, who I am. Cognitive fog, walking issues, difficulty in making decisions, all the symptoms. Behind these is a person. Me. And each element of that list impacts me, takes something away from me. Along with the capabilities go confidence, self-esteem. It also just feels shit. I know it can be worse but it can be difficult to find comfort in that when living with the consequences. Sitting there in the middle of a conversation and just being so mentally frozen that you don’t know what to say or afraid the wrong words will come out. Doing anything is just more work. No-one notices which is a victory but, underneath the bonnet, it is a lot of work. Tiring work.
Exaggerating the Positive
Progression means many day-to-day activities need more effort and can be hard to face, difficult to explain. It is also easy to hide behind a positive facade. This is where the blog comes in. Looking back on some of my posts, positives have been exaggerated. I would not go so far as to say toxic positivity. I was just trying too hard to find good things among those challenges. There are definitely good things, that is true. I started this post on holiday. In two weeks, I have read two novels (believe me, that’s good!) and have enjoyed cycle rides with a fair bit of climbing, the latter being made possible with a new e-road bike. I cannot do these things unaided anymore but, my God, they are still fun! But there were challenges. And unpleasant moments. Some people saw me walking but with my leg support and walking stick and made comments to the effect of “he probably has Parkinson’s.” Drunk or stupid or both. And so what if it was Parkinson’s? Want to stare?
Living With Highs and Lows
The difficult bit, relevant to this blog, is reconciling all of this. Life with a condition like PPMS is just not linear. Yes, I am getting worse. But does that mean I should have nothing to look forward to? Should I not have fun? I went on and on about Mont Ventoux earlier this year and it was a very special achievement. Why should I hide that? Dammit, I am proud. Let me revel in it.
I refuse to allow the disease to have it all its own way. But. Before this becomes inspirational bullshit, there are times when I can walk a maximum of one kilometre unaided or think ‘I am really not looking forward to going to this place I love because I know there are stairs’ and I can get down. Very down. And that ‘no-one understands feeling’. The depression that is part of MS. Reconciling this with myself is so difficult. I hate to feel negative, to communicate negative feelings. But I need to confront them. Part of that, for me, comes from communicating about them. To write about them. Moments like the Parkinson’s moment. They hurt. When a dopy tourist just stares at my leg support, that hurts. It feels better to relate them but I also do not want this to be a litany of despair. I liked climbing the mountain and I liked writing about it.
Success
I am waffling. Something I am prone to do. In the end. This is an element where this blog does help me. Clear communication, setting things straight. A little bit of personal therapy as well? Yes, certainly, as my brother pointed out. It is also nice to write. It is also easier for me to write than to talk, sometimes. If someone else sees something in all these words and likes the positive or is struck by the negative, then it is a success!
Moving Forward With Erosion
There have been many tests besides the neuropsychological exam, and there will be more. None of them are going to stop the erosion which has become more noticeable, especially in the last five years. Even with Disease-Modifying Therapy and medication, I am still quite scared and the damage the lesions have already done means I am not getting better. Part of dealing with that fear, that confusion is… vocalising it. Or writing about it.
So I will keep going with the blog as I try to keep going in life. Less padding, perhaps fewer posts. I want to enjoy this and, if it is forced, it is not fun to write. It would also be depressing to write of nothing but the issues and challenges that come with MS. The erosion of the self will continue and I will write about it here. Also the fun stuff. A little less often. But less means more here. Or is it more means less?
I’ll stop before I confuse myself. Perhaps the next post will be less serious. Let’s see what comes.