BOOKS ON MYOSITIS: Polymyositis, Dermatomyositis, Inclusion Body Myositis
Monday
Do not put things off when it comes to your health
I had put off a muscle biopsy for a year because I was scared and because I needed to have a transfusion before I had it. It was fear of the unknown, never having had either procedure before. This was the muscle biopsy that diagnosed my Myositis after all these years. This is how I felt when I was finally diagnosed from a muscle biopsy.
Sunday
A bit of bad luck or the ripple effect
Yesterday I took my wallet out of my bag to pay for something over the internet.
I was asked to take my son to the train station and forgot my wallet.
There was no petrol in the car so I went to the petrol station.
I could not get petrol as I had no wallet.
I drove home to get it but ran out of petrol.
My phone I had misplaced the day before and even when I rang it could not be found.
As I had no phone I had to walk home which was about 1 and a half kilometres.
Today I can hardly walk at all!
I was asked to take my son to the train station and forgot my wallet.
There was no petrol in the car so I went to the petrol station.
I could not get petrol as I had no wallet.
I drove home to get it but ran out of petrol.
My phone I had misplaced the day before and even when I rang it could not be found.
As I had no phone I had to walk home which was about 1 and a half kilometres.
Today I can hardly walk at all!
Thursday
Memory is a good thing
Almost every part of me is aching - jaw, wrist, shoulders, upper back, ankles, hips - and it has been like this for a long time but when I look back it is not the pain I recall. I have very fond memories of holidays and events, occassions when all the family were together. I remember all the happy times and the sad times and not one of these memories involves pain.
I am with James Barrie the author of Peter Pan when he said " God gave us memory so that we might have roses in December". Not that this is my December.
I am with James Barrie the author of Peter Pan when he said " God gave us memory so that we might have roses in December". Not that this is my December.
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James Matthew Barrie (1860 – 1937 ) |
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Bronze statue of Peter Pan in London's Kensington Gardens created in 1912 |
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Peter Pan and Wendy cover published in 1915 |
Sunday
Once a dancer
This weekend I pottered around, mostly inside, tidying and sorting, sitting and standing.
When I went outside on the uneven ground I watched my steps very carefully.
I wondered about a cane and whether it would be more of a hindrance than a help at this stage and thought about youthfulness and the use and movement of the body and how the way we move has a big say in how we appear in relation to getting old.
I quietly and momentarily grieved for the movement freedom of my youth and realised it was ironic that I should get this disease as I was, for many years, a dancer.
When I went outside on the uneven ground I watched my steps very carefully.
I wondered about a cane and whether it would be more of a hindrance than a help at this stage and thought about youthfulness and the use and movement of the body and how the way we move has a big say in how we appear in relation to getting old.
I quietly and momentarily grieved for the movement freedom of my youth and realised it was ironic that I should get this disease as I was, for many years, a dancer.
Tuesday
exhausted again
I feel so bad and so weak I can hardly type.
I overdid it on the weekend at my grandson's christening.
3 days later and I feel so bad - aching almost all over, headaches and very weak - hard to sit upright without support and hard to stay on computer.
Live and learn.
I thought I had learnt this lesson!
I overdid it on the weekend at my grandson's christening.
3 days later and I feel so bad - aching almost all over, headaches and very weak - hard to sit upright without support and hard to stay on computer.
Live and learn.
I thought I had learnt this lesson!
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