I’m learning that fatigue can be debilitating, in a way I never thought possible. Indeed, I confess that prior to experiencing Parkinson’s related fatigue, I was definitely in the ‘pull your socks up, stop moaning and just get on with it’ school of thought. I say this a little flippantly and I am more sympathetic than this makes me sound but a part of me failed to appreciate the significant impact that fatigue can have on day to day life.
That was until I experienced a fatigue that literally stops me in my tracks. One I fail to control and with the best will in the world, I would not be able to ‘pull my socks up, stop moaning and just get on with it’ if my life depended on it. It is not related to activity nor is it eased by rest. It is unpredictable and unstoppable. It is not just a feeling. Others can see it washing over me. My family refer to it as ‘when my shutters come down’. It can happen at any time.
It is not like a lying in bed on a Sunday morning cocooned in a cosy duvet, enjoying the experience and not wanting to get up. It is not even like having cycled 100 miles and feeling so exhausted that as soon you arrive back home you wrap yourself up in that same duvet and sleep. Parkinson’s fatigue is like the duvet has turned to lead, it is heavy, cold and uncomfortable, painful almost. It weighs down on every part of your body and you can’t escape from it. Sleep is not an option as you are trapped and uncomfortable. There is no relief from it. I’d give anything to ‘pull my socks up, stop moaning and just get on with it’.
I’m not alone though. Fatigue is a major problem for about 50% of people with Parkinson’s and a third of people with Parkinson’s say it is their most disabling symptom. As with many things, it becomes the new normal, a part of you, a part of life and you find a way to live with it. It does mean however, that after much practice, I have perfected the ‘power nap’!
2 thoughts on “Shutters Down”
Thanks so much for your blog today. I am to have telephone consultation with a new specialist today and have been trying to think how to describe my problems sleeping. You hit the nail on the head. Only someone going through it can understand. Thanks again and keep up the great work – its so reassuring. Les
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Thanks Les, it’s great to get your feedback. It is very difficult to try to explain to someone else and it can be very difficult for someone else to understand. I hope your consultation went well.