Choughdancer
What drains and exhausts me most (I can almost feel the life being sucked out of me and a veil of exhaustion descending!) are phone calls, stressful dealings with other people/businesses/organisations and other mental exertion. Physical exertion is never a problem provided I have enough mental energy to actually get out to do it!
I enable my activities with caffeine (not usually recommended, but it makes me feel 'normal' ). I struggle now with going anywhere in the evening, although I can with caffeine; if I do this though, I do have major problems sleeping and then bad effects for days afterwards.
I think many people don't believe I have it as when they see me I seem full of energy (caffeine!) and have no problem walking and dancing!
This is the first time I’ve heard someone say they feel the way my husband feels. Because he can manage physically, probably doing more sport than most men his age, he appears not to have a problem. But mentally he really struggles. Anything requiring concentration makes him feel ill, sometimes for days afterwards. It’s what makes this so hard to understand from an outsiders perspective. Is it still CF when it’s just mental incapacity? I should say he was previously able to cope with concentration. This has only been evident since he developed CF. His symptoms can extend to dizziness when walking down anything that resembles a tunnel, like a path lined with high hedges on both sides. We’ve even thought the fluorescent lights in supermarkets can trigger an ‘episode’, as he can go shopping feeling fit, but come back looking grey and fit for nothing!