The endless catch 22 of long term illness

1)If I am cheerful I must be well.
If I am cheerful I am coping with my illness. It doesn't mean that I am suddenly cured, or that I am experiencing no symptoms. I am a cheerful person by choice because I believe fully that my circumstances are not what shapes me. My reaction to my circumstances is what I control at all times.

2)If I am able to do things for myself I must be well.
If I am able to do things for myself it is because I have worked out how to get around my challenges to keep going as best I can. If I am seen doing something on a better day, that doesn't mean I can suddenly do it all the time.

3)If I look miserable I must be depressed.
on a worse day I get monosylabic, I find it difficult to smile from muscle pain. My face freezes in a half frown from muscle twitches, so I must be depressed. CBT is the only answer to that, and it will 'cure' me. We all know that this is not true. I'm still well able to crack a deadpan joke, or laugh even if I can't smile, I'm still not depressed because I won't allow myself to become depressed.

4) If I'm loosing/gaining weight I must be over/undereating.
I get severe nausea sometimes as a result of the dizziness and feeling like I'm on a rollercoaster and the whirlitzer and a ship in high seas all at the same time. Sometimes I can manage to eat, other times I can't. Sometimes I can cook, other times I can't. Sometimes there is 'grab food' available to me, left by kind souls who understand. At other times I don't even have the ability to microwave something for myself. Today I might be able to grip a foil tear back to open a packet, tomorrow I might not. Today I may forget to eat, tomorrow a friend may come by and make us both something.

5) If I can sit at a computer I must be well.
Sometimes all I can do is sit at a computer, wrapped in a blanket in my reclining chair. I actually lost part of my care package over this one. If I had been sat in front of a telly wrapped in a blanket the carer wouldn't have reported that I was able to do things and refused, but because I was sat in front of a computer I must be fit. I couldn't have focused on the tv screen to save my life. The computer and simple games helped me focus out of the spinnny dizzy nauseous hell and let me recover enough to be functional.

6) If I can write a blog I must be well enough to work.
Oh this is a big one, a real slap. I have been fit enough to write for the last two or three days, but I've not been fit enough to make myself something to eat for, what, eight days now. I'm recovering from a sinus infection so my levels of dizziness, percieved motion, nausea, ability to place self in space and general pain and tiredness is off the scale. Coupled with the fact that I've rarely been able to eat this last week so I've not been able to take the 'after food' pain killers. pain levels are at level ouch. Tramadol is a life saver for the pain, but I wouldn't have been able to drive or operate machinery. If I went out anywhere just now exhaustion elephants would land on me from a great height.

7)If I look better I must be fit to go do stuff.
Lets go out somewhere, you look ok Mad, you must be feeling up to it. Sorry no, having a 3 elephants day, no spoons for anything else. What do you mean, '3 elephants?' Imagine that whatever you're doing you have from one to ten large pink elephants standing on a platform on your back, giggle about this; it is supposed to be funny. These are 'exhaustion elephants' and they make everything tougher to manage. If you do too much, more of them will jump on, if you do too little the ones you have sitting won't go away so you have to balance how much you do. If I say I can't manage, seriously, I can't manage.