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It is relatively clear to everyone that the last few days and weeks have taken their toll. People have pointed it out to me in well-intentioned comments on social media. I have been urged to relax and metaphorically take a chill pill.
I am retired and relatively financially secure (having worked very very hard to achieve that basic level of security). Technically, I should have very little to do apart from physio appointments. Yet every day still feels full, although I will admit there are daytime naps scattered throughout.
The problem is that I simply cannot stop, for multiple reasons.
I need purpose and meaning. I need a raison d’être. I need something worthwhile to do, otherwise I will slowly fade away. Now that I am so deep into telling my story, the process has become genuinely cathartic. It keeps my cognitive skills moving. It gives shape to the days.
I certainly do not have the life balance issues I once had. In truth, they would now be impossible to manage in my condition. But everything is harder, and my charge level is much lower than it once was.
I receive advice from both sides, and I give myself the same conflicting advice. Push on. Slow down. Keep fighting. Rest more.
The truth probably lies somewhere in the middle.
It would be very easy to give up and stay in bed. Instead, I have chosen to continue documenting this journey, partly because it helps me therapeutically, and partly because I feel too far into it now to suddenly change direction. I also genuinely believe there is value in the process. People tell me that all the time.
PSP moves with such speed that, ultimately, it will make many of the decisions for me, and I will have to comply. Until then, I am trying to reduce unnecessary stress. I have already taken huge steps: retiring, stopping driving, moving downstairs, and accepting the help of a full-time carer. So it is not all one way.
What you are really witnessing is a debate raging inside my own head.
It is the same debate I have over the acute pain in my leg. Do I continue exercising, or do I allow it to become an excuse to retreat and rest? For now, I am trying to push myself while still taking care of myself.
A balance.
I genuinely do not yet have a better answer than that.
