I do a physical job, I am a gardener, I love the physical work, or I did. It was like a dance, each task had it's own rhythm it's own place in the scheme and when it came together it was beautiful. I manage 6 gardeners it is a big garden with layers of complexity.
I recognise pretty much all the comments above, that I could continue to cope was down to an almost unique set of circumstances.
No HR department so I could finesse my schedule, very little paperwork and no computers. I had done this work for years, the body remembers even when the head is lost. A small staff, so less social stuff and an attitude some might term bloody-minded.
After the first two to three weeks of flu-ish stuff, sweats, hallucination and weakness I could do a few hours each day just to keep it on track thinking I'd build it up as I always had if I'd been ill.
BUT.. you all know, it didn't get much better and then got worse and weird. Muscle aches were one thing but temporary paralysis of arms and legs! Each symptom prompted an accommodation, so weak muscles were spared by changing how I moved, spreading the load over different muscle groups; changing the dance. When a limb stopped working massaging with the other hand gradually unfroze it. I could no longer climb ladders so I worked from the ground and delegated.
Doctors were useless, I thought I was going mad, I was getting weaker, could walk less and ended up having to crawl up stairs. To get to work was; 5 steps to the car, rest; 25 steps to the glasshouse, sit, rest; that was my life. Work, sleep, repeat till the weekend then sleep, repeat.
I'm not a great fan of Tony Blair but the Disability Discrimination act saved my bacon, unable to get rid of me easily I struggled on. With work taking all that I had I went down for 3yrs, there wasn't so much pain in the beginning just everything else, then the Pain.....came.
Doctors shouted me out of the office or ignored me so I did it myself; PR and supplements saved me. What had I got to lose, so I tried everything and it was high doses of DHEA that stopped the slide, then the usual suspects CoQ10, carnatine, and B12 helped alot, It has taken another 7 yrs to claw back most of my mind again with no help from the NHS and what little I could afford for therapy.
I try to work out how I got from there to here; try everything but be very sceptical of those who would profit from your misery. Never give up but don't force it, pacing is everything. I have had to shed everything that is not vital to my life, which has degraded what I thought of as Life to a point of abstraction.
When you are this mentally and physically ill you are vulnerable, you become a target for the opportunist, a mark. I am a big guy but there were times when I was nervous, there's a reason we don't feel like going out when we are sick.
Perhaps controversially I cultivated anger, there's a power in the dark side...yeah yeah, but it worked as a way to stop people treating me like shit. When I say anger I mean a deep burn, I am always polite, why waste it.
To rehabilitate, I started small, little flash games and sudoku and crosswords; got to be the right crossword, I used the Guardian, wouldn't want to end up thinking like a Mail reader....Ugh. Then I re-learned how to cook, following a 3-line recipe was tough to start. Then re-learning botanical latin.......
There are still big gaps and I have bad weeks and I can't walk continuously for long but I am working and in some ways better than I used to be. I don't waste time or energy on anything that is not necessary, I read people better and handle them more directly. I am beginning to be able to remember again and it is like googling for the first time. I am seeing the relationships between plants, the colours in the garden, the textures with a vivid clarity that I don't recall from before.
I have skirted a precipice and I am fortunate but as I pick my way across the face of the cliff my focus is on keeping my footing as much as on the way forward.
