Today is #WorldFSHDay …. I am one of the 2,000+ that has this condition. It dictates everything everyday and every night. There is no treatment, no management and no cure. Also there is little support, understanding or assistance from the people and organisations designed to do otherwise. It’s not photogenic, it’s not compassionate, it’s not escapable.
I pull no punches. There is nothing remotely comfortable about the constant struggle to just exist.
Since it’s noticeable onset when I was 4 FSH has slowly robbed me of all my achievements, my purpose, my abilities and my pleasures. I can no longer work, drive, or play piano; be spontaneous, be independent, be principal in choices. Things I can do have a strict time limit otherwise there are consequences of energy and strength. I can only go anywhere, do anything I want, if and when someone else is available.
What are you wearing today? Did you choose it? All my clothes are dictated by FSH, right the way down to my panties and bra. I never choose something because I like it. Let’s move on to food, what made you decide on your lunch today? Something tasty? Did your decision depend on whether you can lift it to your mouth, or whether you can easily swallow it after chewing, mine did.
Spend a moment considering this, try making a cuppa without bending your knees, hips, back, standing on tip toes, without reaching higher than your shoulders, using only your thumb and first finger to hold anything. That is the level of concentration and unsteadiness I live everyday, doing everything, anything.
A bad day is when it takes 3-4 attempts to get stood up from the three only places in the world I can (my bed, my toilet and my sofa spot), a struggle is when it takes 5-8 attempts, if it takes more than 8 don’t ask. My reward for the effort? To do it all over again and again and again, after all how many times a day do you stand from sitting?
It is a one way street, once a muscle set degenerates, there is no recovering it, it’s set to get worse. Tomorrow could be the day my muscles no longer support me, the next day could be the day I experience breathing difficulties, the day after that could be the day that……..you don’t want to know. Then again it could be next week, month, year, just one day.
Right now I am having to figure a solution about my desk. I cannot get up from the chair, but I do not know whether I can use a chair that rises. I have to find a local company that has such a chair that they can bring to my abode for me to try insitu. Then I have to decide whether it is worth the £3,500 ($4,500) expenditure, (plus service and maintenance costs). Did you notice that paragraph said ‘I’? That’s because my needs cannot be met by the standard, limited catalogue of equipment available via my Occupational Health team.
Hey ho, must go, I need a pee and to make the journey productive I’ll put my mug and plate on the chair I use as a frame and hopefully get them as far as the kitchen.
Ain’t life fun!
Just Me, Nobody Special 
Bushka
June 20, 2017 at 4:34 pm
AnneMarie……as always I send you what I can BIG HUG…..and Much Love! You are a Star for me, Anne. 🤗🤗🤗💕💕💕
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AnneMarie
June 20, 2017 at 4:37 pm
Thank you Bushka xx
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Bushka
June 20, 2017 at 4:44 pm
Hugs! ❤ ❤ ❤
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menhir1
June 20, 2017 at 8:42 pm
Thank you AnneMarie for giving me/us an awareness and understanding of FSH. I was, obviously, mistaken in my belief that Muscular Dystrophy was a male dominated degenerative condition. If you wouldn’t mind, and if you feel you can, more understanding of FSH from your point of view would be enormously valuable.
What type of chair have you been looking at? The only rising ones I know of are the ones that aid frail and elderly people to stand. They look like very well padded and comfortable electronic rocker seats with pilot button controls on an arm, or, a handset control. I was taken for ‘a tour’ of one last year.
Your frustrations are palpable. You have fantastic resilience. xxx
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AnneMarie
June 20, 2017 at 9:04 pm
Hi Menhir. Historically much attention was given to DMD Duchenne MD because it affected young boys who, back in my youth, rarely made it out of their teens, today’s medicines keeps them going another 10 to 20 years. There are over 64 different MD’s each affecting the individual uniquely.
As to the chair, I’ve read about a few office chairs that rise, Velux 300 or 500 series I think. Until I can ‘have a go’ on one I’m kind of stuck to know what tweaks might be needed.
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deacongill
June 21, 2017 at 2:19 pm
What a heart-wrenching, no-holds-barred post that gives us a glimpse into the unending mental and physical frustrations of a sufferer. It doesn’t help you to be told you’re an inspiration, even though you are. Hugs xx
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AnneMarie
June 21, 2017 at 3:53 pm
Thank you Gill. I don’t feel inspirational, lol, I tend to feel closed in and unproductive along with exhausted.
Often I am at odds with how disability is portrayed because it isn’t pretty or photogenic, it can be damn hard work and so frustrating with some organisations because often it is forgotten that there is no rest or escape. If a piece of equipment goes faulty, the person becomes practically a bed-ridden quadriplegic, yet the professional organisation looks at you as if you are talking utter dross. It’s that classic, we are wheelchair accessible after you’ve climbed the four flights of stairs. Lol
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rosiewrites2
June 28, 2017 at 12:02 pm
Gosh. Sending huge hugs xxxx
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