Part 3:
GP left, new one joined, I spoke to him about it and he agreed to refer me. Long story short, I had to lay on a table with camera in my throat while swallowing a marshmallow, then had to carry a computer with a thing up my nose and into my stomach for 24 hours.
Can’t remember exactly, but if I scored over about 15, I would benefit from an operation and I scored something like 50.
Was referred to a surgeon, he was visibly angry that I had been left to suffer for so many years and couldn’t understand why I wasn't operated on years ago.
I had the operation, called a "Nissen fundoplication" that effectively turns my diaphragm into a one way valve. It is now physically impossible for me to vomit, I can’t drink any fizzy drinks, and crusty bread and chicken for some reason gets stuck when I swallow, so I have to have Turkey instead (they warned me about this, apparently it's something to do with chickens consistency)
However, since the operation, I was no longer waking up puffy faced, I felt on top of the world, was no longer totally exhausted, I thought "yes, I’m cured, can go get a job".
I had my yearly appointment with my occupational therapist about two months later, I told them the op cured me and they said "it sometimes happens" and signed me off.
Turns out I wasn't cured, but thought I was, as I was so well compared with how I had been (if that makes sense)
I started going out, walking dogs, and my knees disintegrated.
Was referred to hospital for xrays and to see a specialist. When I went into the specialist for the first time, he remarked "oh , they did get your age right, I thought they had made a mistake, you have the knees of an 80 year old" (said it very friendly)
End result is in 2016 I had two total knee replacements, one in Feb, other in Nov
Meanwhile before the knee ops, I had started noticing backache when I was washing up, but it went away when seated.
I had the knee ops and thought yes, get fit, get a job. However, my few close friends here who know me very well, all without exception told me that there's no way on this planet I am well enough to consider working, and I am mad to rush back on.
I was so pleased with the physical side, I was forgetting about the mental side.
After my first knee op, my back started hurting very badly when walking. After my 2nd op it got 100 times worse. I thought it was me walking differently, but its horrendous. Sometimes I have to sit down for a min every 50 - 100 yards as the pain is so crippling.
Had MRI on entire spine, was told it's abnormal, but not too abnormal for someone my age. Also showed up bad arthritis. GP said she doesn't think it will ever get better (in fact she said it will probably only get worse). Then last April, I went with my son for a short walk to see how far I could go, one minute was standing, the next, flat on the floor and had broken my elbow as my knee had given way.
Happened to see my knee surgeon about my arm, when I told him my new knee gave way, he said "what you describe is physically impossible, do you suffer from any back problems", he said my GP needs to get my back sorted else it will keep happening and I will ruin my knees.
GP referred me to neurologist who did MRI of my head, but could find nothing wrong, GP then referred me to a physiotherapist and a dietician (I weigh 19 stone).
Physio in October last year said, due to my inactivity caused by my CFS/ME, my body is so out of condition, my spine so stiff etc that it's going to take a good year before I can even consider working (this is from a physical point of view).
Meanwhile, I'm not sleeping well at night due to numerous things. Pain in back (and sometimes pains in new knees when lying on my side), pain in my elbow etc constantly wake me up. End result I’m waking up shattered and sleeping almost as much as when my CFS/ME was really bad.
My short term memory is a LOT better than it used to be, but still about once a week I completely forget, I'm not talking about going upstairs and wondering what I went up for, best example I have is it being 7pm and me asking my wife if she minds getting my tablets as my back hurts, and her replying "you asked me 5 mins ago, you've only just taken them " and me having zero recollection to this day.
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