You feel disappointed in yourself for not being able to do enough, disappointed in your body for constantly making you feel awful and disappointed in the time you spend doing nothing because it's all you can muster right now. It's of course completely fair enough to feel this way, because it's HARD to be ill constantly. Harder than you can ever truly communicate to others. It's even harder when people look at us and have no earthly idea about the pain or the tiredness or the sickness or how hard it is to even show up to life in the morning, let alone a job.
The one thing that I have found useful of late (it's been a HARD few months) is to make sure I refer to myself as normal, despite the fact I am far from. I have been going out, balanced with spending 6 days across Easter not moving, I am going on holiday, I keep booking holidays and I try hard to attend all birthday and social events. I don't then put an immense amount of pressure on myself to go, because I know my limits. I'm having a hiatus from alcohol, which makes me even more different to my friends, but by going out and joining in, I feel normal. By going on holidays, even if I just lay down in the sun for a week while everyone else does watersports and goes snorkelling, I feel normal.
Feeling normal keeps me sane. It's when I constantly dwell on how set aside I can feel when symptoms are bad, I start to feel like I'm going mad. My normal might not be everyone else's normal, but it gets me out of bed in the morning.
