How is this happening?
Literally though. How is this happening?
For 5 long years my life was a series of stacking debuffs. I’d relapse every 18 months, I could pretty much count on it. Each relapse was new damage to my cervical spine, optic nerves, and to a lesser extent my brain. We tried a bunch of different therapies and none of them worked.
The neurologist used the phrase ‘this is our last chance’ when describing the most aggressive MS drug therapy available.
When starting this therapy I think I’d made an uneasy peace with the idea that this thing wasn’t going to get better and that I was facing a decline over time. My efforts, the drugs I was taking, my exercise, even my physiotherapy, were all in the aim of slowing down the progression, and even that was a Hail Mary. This perspective was only exacerbated by the ‘last chance’ descriptor. Last chances don’t have a good odds of success, almost by definition.
But then something strange started to happen. Usually my bladder can’t empty all the way and I use intermittent catheterisation, basically I insert a tube to empty the remaining liquid. Like syphoning a gas tank, you suck out the start to get it going and then poke the other several feet of tubing into the car of your least favourite neighbour. When I started and for sure in the warmth of the summer I’d often have 200-300 ml of liquid remaining and sometimes as much as 500-600ml. I’d catheterise 4 times a day on a good day, 6 on a bad, and that would feel too sparse. I’d catheterise at 9am and then by 12 I’d need to pee, be unable to get enough out, and then play a game trying to create enough capacity that I could last a full meeting before overflowing all over the floor. I lost that game pretty regularly.
Then gradually the amount of liquid left in the bladder started to reduce. There’s a pretty arbitrary rule that you only really need to catheterise if there is more than 100ml remaining in the bladder. Now during the day I’m down to roughly 70ml pretty consistently, sometimes inching to around 120ml. So I’m finding that I don’t really need to catheterise during the day; I still do at the start and end of the day to prevent infection (liquid in the bladder that never empties is a good place for bacteria to proliferate) but for sure the symptoms of my neurogenic bladder are improving.
Similarly my mobility is improving, with my physio impressed with my rapidly steadying balance and bolstering strength and with no small amount of confidence in our ability to develop my stamina. The physio was even starting to look at my wheelchair with a sense that it might yet become unnecessary. There’s a poetic irony in the idea that I spent £2000 on a wheelchair that is yet to arrive, and it is due to get here around the time we might find that I no longer need it. I still am a bit disbelieving but he’s confident, and for sure I’ll follow his every instruction on faith that he knows better than I.
This indeed follows a really exciting pattern that has only become apparent with experience. I had nystagmus for 3 months but it retreated, I was in chronic nerve pain for a full year but eventually it disappeared, I had severe insomnia for 6 months but it got better and now I’m sleeping really well, I had word finding difficulties for a year and gradually my abilities returned.
MS relapses involve demyelination and inflammation, the latter being short term while the attack is active and the former being long term and in many cases permanent. So improving over weeks or a month or two might be due to the attack remitting and the inflammation improving. Recovery over 6 months or years is something else. The brain and spinal cord can, in certain circumstances, and while the disease is earlier in its course, recover from damage by oligodendrocytes remyelinating the damaged nerves.
Remyelination is what I think is happening, the damage that was long term is, little by little, repairing. Ocrevus, my mighty shield, my sleep and exercise, the piles of supplements and medications, all together are working. What this means is that the damage I am facing, my limitations, the improvements I’m seeing, there is suddenly an unknown limit to what my efforts will yield, totally unexplored terrain of my life, possibility, adventure.
So here we are with the potential for recovery and a shield that might, maybe, just prevent further damage. I don’t want to hope, to let myself dream of a day that I might regain these last skills I have lost for the last two years that have had such a severe influence on my life.
So I’ll stay in the moment and enjoy the small persistent steps of progress, a privilege that not all of my kin get to experience. And I will earn it.
When the last relapse showed the first precious signs of ending I wrote in my symptom journal ‘if this is remission I’mma yoke the fuck out’ and I did. I’m strong in my wheelchair now, I work out regularly. And now I’m going to start walking, following the careful directions of my physio, and I’m going to build up gradually the distance I can comfortably cover. From the mental challenges to the physical impairments and now with the possibility of a treasured recovery I’m going to do what MS always demands…