The stuff they don’t see, or ‘get’!

Soooooo, 2nd medical assessment in as many months….ATOS this time, deep joy!

I was a bit tight in the chest when they called me in, as I had walked up 2 hills to get there, and then a lady with strong perfume came and sat in the waiting area….but I wasn’t what I would call ‘struggling’ as I have learned how to concentrate on, and regulate my breathing, to a degree, and I had been sitting still for 10 mins.

Answered all the questions as honestly as I could, which mostly meant I was saying that it depended on the weather, what I was trying to do, how I was when I woke, whether I’d slept well, day to day struggles are sometimes yes and sometimes no. Sometimes the arthritis is worse than the breathing, sometimes vice versa….no rhyme or reason for how I am, when I am, just sometimes it’s rough!

I have really good days when I can go and wander round the shops, piddle about in the garden, tidying and weeding, hoover the whole flat in one go, and still feel fairly ok…bit out of puff and achey, but ok.

Some days are a bit of both, like today. My appointment was at 9am in the centre of Brighton, which meant getting up at 5.45 to have a good hour to get ready i.e time to sit down if dressing set me off, or I was stiff and achey. As it happens I felt ok, until I hit those hills in Brighton, but even then not too bad. When I got back I felt completely washed out for some reason…the driving, the worry, the humiliation? who knows, but ended up going to bed for couple of hours and sleeping soundly. Have pootled since then, and caught up with some nature docs I’d recorded, played a game for a while on the laptop….and then WHAM! out of bloody nowhere!

Had put a load of washing in earlier, and decided to hang it out even though it was late afternoon, will be fine overnight……..2 towels and a large cushion cover, that’s all it was! Put it in the wash basket, walked out the front door and round to line in the back garden….felt a bit puffy, so slowed a bit (not that I was running or anything lol), walked back in, remembered there was some stuff in the tumble drier from yesterday, so got that out and went to bedroom to put it away….struggling a bit more by then (bending and lifting/carrying seem to be my main enemies), but determined to finish the task as was frustrated that it was affecting me, and I’m a stubborn bugger!

I was moving about, doing normal household tasks for all of 10/15 mins……….I have had to use my inhaler with the spacer, and sit hunched in the chair for the last half hour, struggling to get my lungs back in order. Bloody ridiculous, and something you cannot possibly get a ‘healthcare professional’ to understand unless they are here to see it!

And some days, just swinging my legs out of bed sets off the breathing struggle, which is much worse by the time I’ve wandered to the loo, and means most of the day is spent sitting and puffing like a steam train, trying to get it under control enough to go and make a cuppa. Or it might be my hip, meaning I can’t even get out of bed, or my lower back, making walking and bending difficult. Sometimes it’s both and I end up silently, tearlessly crying with the sheer frustration of it all, because my brain can’t/won’t accept that this is happening to me ‘cos I don’t feel old enough for this shit yet….don’t think I ever will 😦

Don’t get me wrong, I appreciate there are many people out there FAR worse off than me, but if I can’t make them understand how this is affecting me just to have government sick pay of £73 a week until I can get back to work….which I am determined to do in some form or other……then what chance have the poor souls who are affected every minute of every day of their lives by whatever ails them, and can’t work, or, if they want to, find someone willing to employ them?

I have started the new meds the hospital chap wanted me to try for 4 weeks, so I am hopeful that they will get me back to a point where I can at least sit in an office for a few hours a day or something, and then I can stick 2 fingers up to these bods that make you feel so small and guilty for daring to have a body that won’t do what you want it to do at present.

How I am having to ‘exist’ at the moment goes against the grain in so many ways. I was brought up to work hard for what I want, and have done so for the last 40 years….I have 36 years full NI contributions to prove it! And I did it whilst raising 3 lads single -handed with no input from their father in any way, financial or otherwise, after he left us in 1990. In that time I have not only worked whatever job fitted around them best, sometimes 2 or 3 little jobs instead of one big one, but I also fostered, child-minded, cared for my youngest when he was so poorly with ‘drop attacks’ that they took nearly 17 years to find a reason for,  (heart arrythmia coupled with bi-polar, they happened when he was on the down phases), spending many hours pacing hospital corridors while they dealt with him….dealt with losing both my parents in the space of 3 months, 1 expected, 1 sudden…..etc.etc.

I resent what my body is doing to me at the moment, it is annoying and frustrating…but I can’t help it, am trying to deal with it, and, as soon as I can, I will get back to doing what I want to do….pay my way in life as best I can…not be a burden to anyone. It’s what I’ve always done in the past, it’s the example I was set by my parents….why would I want to change that?

Hey Ho!

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