My Version of Acceptance

I recently wrote about my neurology appointment and how I’d felt pressured into taking anti depressants. The subsequent attention was somewhat humbling. I also felt guilty in a way, as if I’d been shouting for attention. I hadn’t, but I 4 8 that it perhaps did come across as a little darker than my usual posts. I am happy to report that I am starting to feel a little better about the future.

When I was first diagnosed I would wonder what the future held for me. Eight years in, I am beginning to gain an understanding of what lies ahead. When my medication wears off now (and it wears off more than I would like) I feel a little tremor in my hands. Mostly my left, but now also my right. Sometimes, I find it difficult to walk. I can walk around the house sure, but a long distance in my ‘off’ moments is incredibly difficult and slow. with much stopping to gather myself before the next few yards. My neck feels as though my head is too heavy and I just want to rest.

Yet resting is my enemy. Exercise, no matter how difficult and hard to arrange, is absolutely vital to my overall wellbeing. I’ve gone back to stretches and yoga, occasionally a little Pilates. I am keen to maintain and improve my overall flexibility.

I notice too that as my medication has increased (by .25 milligrams) ‘playing’ with timing is interesting. One of my tablets appears to give me more dyskinesia. I pushed the time out by over an hour later than was prescribed. The dyskinesia was not as bad. Still, these odd involuntary movements are preferable to the tremors of Parkinson’s.

I had two very active days due to my daughter’s birthday. I took on a ropes course and the ropes course won, but I still had lots of fun. I noticed that it was way later than normal before I needed my medication. Physical activity is very good for me indeed. It is both fabulous and exhausting. Fabulous because you’re keeping fit and healthy, exhausting because, well, who wouldn’t rather be drinking wine on the sofa in front of the telly?

a boy in a climber's harness with his back to the screen watches Kitty Fitton also in a climbing harness climb onto a platform around a tree trunk. behind is a forest with a rope course between the trees.
Terror in the treetops, though in reality I couldn’t make it to level two…

I guess I’m trying to find my ‘new normal’. I read one time shortly after diagnosis that having Parkinson’s was a constant assessment of symptoms.  I think I am understanding that more now. It changes, it’s never better, but that’s what happens with a degenerative disease I guess. You can stick your head in the sand as much as you like (and believe me I do) but it’s always there, always in the background, always trying to take more from you. How you deal with that is what’s important.

There has been some backlash in some quarters against this desire to stay positive, and that if one doesn’t one might in some way feel like a failure. I can only speak for myself in that if I don’t try to always stay positive I tip myself into a dark space. It’s not a failure for me, it’s a need to see the light. For me personally, staying positive is a way of coping with what is otherwise a pretty shitty diagnosis. Who wants to face that? It’s not denial, it’s my version of acceptance, and if it works for me, what does that matter to anyone else?

I will continue to try to be active, try to do all that I can physically, mentally and otherwise. I will continue to believe that I can still work and play hard, laugh, and have fun. If I don’t try, I will never know. I cannot, must not, stop striving to be happy. Anything else just would not be me.

Until next time.


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