The second infusion of Ocrevus has come and gone and it went well. It was completed at a good pace so I could go home fairly early. When I got home I wobbled upstairs and laid down and slept. Then I woke up, wobbled downstairs, ate, and wobbled back upstairs. Slept. The next day I woke up, wobbled downstairs, binge-watched ‘What We Do in the Shadows’ and read until I fell asleep. Then I ate with my wife and a welcome visitor until I got too tired or dopey and went to lay on the sofa before going to bed. Where I slept.
The next day was better. I rode my bike indoors as I felt too unstable to ride outdoors. Short rides and one of them I averaged over 150 Watts! Which I thought was good until Strava (bless it) reminded me that last year I did the same course at an average of 220 Watts. I then laid down and, guess what, went to bed after dinner and fell asleep binge-watching ‘What We Do in the Shadows’.
Today I am alert, back up ninety percent of normal. My immune system has just been through a reset, that is always going to be tiring so. Today I want to do more. I am also scared. The medication is worth it. But the after-effects. Is this what is to come?
Progression
It is clear that my MS is progressing and things are getting more challenging. Walking, foot drop, mentioned that a lot. Concentration is getting more difficult. I am hopeful. No, make that optimisitic. Optimistic that Ocrevus is going to slow the lesions down. It will not reverse symptoms but it will hopefully give me some stability to build on.
It’s simply unnerving that the Progressive part of Primary Progressive MS is actually happening. I knew it was always coming and that progression is slow. My lifestyle, staying fit and mentally and physically active, has played an important role in that. Ocrevus will also help. The after-effects of this infusion, though, have made me a little reflective.
Things to Come
So now my mind is clear. No cog fog…. at least that I am aware of. I am going to go to the supermarket, cook, maybe do a little more of the indoor cycling and get my strength back.
Still, I am honestly reflective. A little scared, as I said. It is always on my mind that the world is getting smaller. Ocrevus will do me good and my new walking aids are also reopening things. Still, those days laying around doing f*ckall. Call me human but, suddenly, I am thinking. Is this how it will be? Things to come? Isolation? Binge-watching television series? Laying in bed?
Of course it is not. Not overnight and today I am up and stumbling about, doing things. Amidst all the optimism, though, a moment of darkness is inevitable. A bit of fear. Unending optimism is just unrealistic. All part of the rollercoaster of life. Human.