The Laying Around and Waiting Game

I would really, really love to write something incredibly exciting about the last couple of weeks. I really would! The scaling of another mountain by bike or an amazing visit to a fantastic city. It is difficult to write in such ways about Ocrevus. It can be a game changer for me! That’s exciting! But what can be written about the actual processes around it? What can actually be said about laying around and waiting?

The Laying Around Game

The Ocrevus infusions are the key to everything, of course, and are actually quite exciting for around twenty seconds when that f*cking great needle gets shoved in the arm of choice. That arm then starts to feel cold as a cocktail of anti-inflammatories, painkillers, steroids and whatever gets pumped in. Then comes Ocrevus itself. Every thirty minutes an alarm goes and the nurses come and check my blood pressure, temperature and pulse. The infusion is checked. I eat. Read a book, listen to music. Start watching Netflix. Drink a lot of water. Sleep.

Sleep.

Even though I am doing very little it is tiring. Ocrevus doing its thing and resetting my immune system. I don’t expect my body to just take it. Despite doing nothing my pulse rate has rocketed.

It’s all done by three in the afternoon. Out comes that f*cking great needle and, dopily, I can leave. That was it. A two day battle in the war again MS. A bit of a dramatic description for what was effectively two days of laying around followed by lot’s of sleep. Now it is waiting time.

The Coming Weeks

It is actually difficult to figure out how long that waiting period will be. I have been searching various sites on the web to get some sort of idea and it looks like stabilisation of lesion growth will start between four and twelve weeks though I cannot cite a source as gospel truth. Perhaps if I dredged medical texts more. But no cast iron ‘it will take this long’ type of comment. Sources on various, terrifying side effects are, on the other hand, worryingly easy to find. Well, I am still here! At the moment….

No matter what though there will be a wait. And then how de we tell if the lesions are not growing? Guess it is back in the tunnel of fun that is an MRI. When though?

Too many questions. What can you do but carry on as normal? I have to continue recovery from the hernia operation anyway. Having MS on top of this is not a help but I do have the feeling I am starting to strengthen. Late last week I walked to the station without getting my stick out and rode my bike forty-five minutes without taking my foot off the pedal. Result! OK, I was limping afterwards but that’s progress, right? The engine is still there! It’s the wiring that needs attention.

The Waiting Game

What wiring though? In this case, it’s my nervous system. Myelin surrounds the nerves. If that is stable, all is fine. The nerves are insulated and motor, cognitive and sensory functions are all normal. Multiple Sclerosis means my immune system is attacking the myelin. The insulation is damaged and so those functions are not optimal. If Ocrevus works then the specific elements of my immune system attacking the myelin will be suppressed. The big reset. The result will hopefully be a period of stability. Less growth of lesions meaning less progression of symptoms.

So it is waiting to see if there is indeed stability. The expectation is not that one morning I will suddenly spring out of bed and shout ‘Good Heavens, my myelin is all intact!’ and go for a three mile run to celebrate. This is not so much a cure as relief and hopefully things will just carry on as they are for a while. Stability. Please! A chance to strengthen a little and try some techniques to improve my balance and coordination. Keep cycling. Improve my walking. Maybe work on the the cognitive elements. Memory, thought, speech….

Perhaps build up confidence for activities where small question-marks have started to appear. Visit this gallery or go to that concert. Cycle up that mountain. Go for this walk.

The stability to build on to keep my world from shrinking too much more.

That’s worth waiting for. It is also pretty exciting.