Posted in Archive, covid-19, february 2021

The Positive To Lockdown With Chronic Illness

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Chronic Illness in Lockdown memes

Whilst the multiple national lockdowns have come with there fair share of complications, for example cancelled treatments, the stay at home message has been a blessing in disguise for me. My body has been going through a decline/more frequent dislocations lately, which is less than an ideal. Now prepandemic I would have ignored my bodies pain signals, and ploughed through the day. A bad cycle, and habit that I had formed. Only collapsing in the evening, spoonless, in pain and annoyed at myself. Lockdown has relieved the social pressure to attended multiple groups a week, and be on the go all the time. For my particular lot of chronic illnesses it’s meant I have rested when I have needed to. I’ve had the opportunity to relearn my bodies distress signals.

Now don’t get me wrong, I’m not literally doing the above meme, though it has its appeals. But it has removed the guilt I felt on slow mornings when we watched a Disney film and had a slow start to the day, rather than rushing about. I still finish the day with no spoons. That is just life with chronic illnesses. However I rarely exhaust myself to the point that I have impacted the next day, which prelockdown was a frequent occurance.

Post-lockdown this is something I need to remember; that it is perfectly fine to acknowledge if my body is saying no not today. We can watch films, craft and bake in the house instead and have a lovely day. Just being kind to my body more often will allow more days out and in the long run that’s what works.

Posted in Archive, October

The little Achievements

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Yesterday I decided I would attempt to play my flute. I knew it would be a long shot considering I cannot pull a face without my face going to spasm, and I cannot hold things in my right hand without it going into a spasm. However I had read an article about music helping some people with dystonia and I figured there would be no harm in trying. After carefully practising holding the flute so that I was not supporting it at all with my right hand I gave it ago.

I started off by trying to play my scales. I soon realised that as long as I avoided playing notes in the higher register then my face took longer to spasm. I presume I must alter slightly my lip positions when I played the higher notes and this must be what caused the spasm. I carried on playing and my hand only went into spasm when I played two of the lower notes. I figure that I must have put some pressure on my right hand with these two notes, so I made a mental note to avoid playing those two. I then moved onto playing some basic pieces, avoiding the notes that I knew would set a spasm off immediately. In the end I was managing to play about a page before my face went into a spasm.

I am so happy! I never thought I would be able to play my flute again! It does not matter that I can only play certain notes, it is better than not being able to play at all.  I am going to try and practise my flute every day in the hope that I may eventually be able to play more and more before I spasm. I do not know if it will work but it is worth a try!!!

🙂

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