Adaptability and flexibility is the key to maximizing life meaning for me. I know that piece by piece this illness will take everything from me, and then will take me away from the world.
I cannot change that. And, after doing much reading and learning, I also understand that I have very limited control over the process, severity, and order of those losses. ( I will always try to stay on top of whatever I believe the best course of action is, diet, right doctors, etc, but those things may or may not matter)
But I have two choices: one is to give into it now and be perpetually miserable about what is coming, or, I can battle it by taking the opportunity to do all of the things that I can, while I can. I realize that this is a tug of war where I will be ultimately backing off a little with every step, but I need to focus on maximizing living life within my circumstances. I don’t want to give up and just hand over my life right now to negativity, misery and depression. The challenge is to make the most out of every segment of life, do as much “life” as I am able to, while I am able, and find a different way to define my successes and victories.
Example: right now I am on prednisone and its making my muscles weaker, so I can’t do my normal routine. I have a couple of ways to deal with that:
1) Attempt the routine, see lost capability, feel negative, do half-hearted work out. – this will be lost to negativity life time
2) Know that it will be emotionally unsatisfying to attempt the work out, so skip it and do something else good. – this could be ok once in a while, if there is an alternate productive, positive and fulfilling activity. Should probably be reserved for those days when energy does not allow to proceed.
3) Re-invent the routine, do high reps targeting same muscle groups. Make peace with the fact that today is the day exactly for this and nothing else.
Right now just short of those temporary prednisone side effects I should be able to be “normal” until the next flair. Let’s use this normal time for normal life.
Once I have a limitation, the challenge will be to adjust, and do as much normal as I will be able to, while subtracting whatever I can’t and making peace and harmony with those subtractions.
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