I wrote this yesterday, in hospital for a day for a routine infusion, on my iPhone. It is actually getting easier to type with my thumbs only, sometimes. Still alert then, went downhill after that as Ocrevus (or Ocrelizumab) took effect. Alert and home today so reread. I like it. The honesty of a fragmented mind.
It is Ocrevus day. I was going to write something about that but, bloody hell, already did! And what more can be written? The process is just the same, the build-up is just the same. Nice days and then blood test and waiting. Nervously waiting. Culmination is the day when the big needle goes in. A stream of consciousness around that? No, this is no room for a James Joyce-esque masterwork.
But this is the fifth infusion. Entering the 14th year of this MS Journey. There must be something to say?
The Hate
Before this gets too poetic and meaningful in a pretentious way, it is important to say this. Just for once.
I hate Multiple Sclerosis. I hate what it has done to me and what it will do to me. I hate the small things that no-one notices but which I do. Concentration level zero, memory that is… forgettable. The difficulty in just holding a pen or getting words out of my mouth. I hate the visible stuff. The scraping, shuffling walk/limp. It will only get worse.
There, that feels better.
The Other Side of Hate
Sometimes it is important to say how you really feel. Then when it is positive it is also genuine. After so long with this ridiculous, unpredictable illness and still be able to do so much that I love means the good can be as overwhelming as the bad. I can still feel lucky. Diagnosed at the right time, the right people around me. Life has been different but it still goes on.
It doesn’t always feel that way but… no point in more ranting.
Combining the Parts
In two paragraphs, written laid out on a bed in Hilversum hospital, the mood swings of the last few years have been laid bare. Sometimes in the space of one day. Sometimes a week apart. Sometimes sustained, sometimes just a blinding flash of sunlight.
Or the burst of darkness of a short eclipse. Different fragments of the same whole.
Reflecting on the journey (Christ, how LinkedIn was that) is difficult. Hard work. How do you put all those emotions in words. The wins, the losses, the battles to come.
Well, you just don’t. It is impossible.
Fragmented Mind
It is better to take the moment. I would rather not be here whilst Ocrevus quietly lays waste to my immune system. But I am. I could say something wonderfully positive about the moment but it would be a big, big lie.
Frankly, right now, it’s not good. I just spoke to the MS nurses and they are lovely. But the message is now more about dealing with progression than fighting it. It is happening. That means not only bathing in the good days but dealing with the bad days. They will all come.
Sometimes in just one week.
Earlier this week there were good days. Galleries, meals out, (for me) fast bike rides. Completion of new kitchen installation. How brilliant life can be!
Then sleepless nights, painful cramps, difficulty holding my pen. Now this, laid out on a bed and wondering if this will be life to come. Laid on a bed, looking at the sun shining outside and surrounded by lovely people. But laid on a bed, not doing much. Worrying.
Alone with my fragmented mind. Travelling in fifteen different directions at once and none of them with a clear direction. I will try to figure it out. Help will be coming.