Finding the “Why”

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.

  1. 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.
  2. 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.

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