I saw something recently about the mental attitude needed to embark on a long-haul battle – whether that be the long old journey that is Lemtrada, or another long old journey like re-learning to walk after a killer relapse.
Focus on the why.
- What is the goal?
- What do you want to achieve?
- How will that feel?
I’ve been thinking a lot about this, and I have a two-part post to cover it.
I’m starting with my hopes and goals for this treatment. What I’m hoping to get out of it. Why I’m doing it.
- Stop (or at least slow) disability progression by halting (or at least minimising) future relapses. This is my number one hope and expectation, the one I consider realistic and plausible at this point. I will consider alemtuzumab to have been a success if I am still walking and working in ten years time, at my fiftieth birthday – and every day from there on in I will consider a bonus.
- As a secret hope, I would also love it if in the shorter term I see some improvement in my existing symptoms. Existing symptoms I will describe another day… But in the main I want to get over (a) this new foot drop so I can walk fluently, maybe run again, and remain active; and (b) the peripheral cog fog that troubles me off and on so that I can’t quite find the words I want, or can’t quite spit them out my mouth right… Gosh, I want to be my old, articulate, capable, fluent self again! I don’t expect total recovery from everything; but it would be lovely (and is perhaps not too much to hope for) if those two symptoms could improve. That would have a big positive impact on my quality of life, and enable me to keep doing the things that make me feel like myself. It is a hope, rather than an expectation, it is a fluttery desire of the sort that likes to keep its head down in case anyone thinks its being presumptuous. But still. It would be nice.
So that’s Part 1 – why am I undertaking this slightly scary treatment path. This is the best treatment with the strongest prospect of keeping me up and going. Eyes on the prize.