Recently I’ve been called upon to make a big decision, to go to India for two weeks with my husband and not yet two year old baby.
I’ve been asked to explain myself. Told my reasons against going are invalid.
But I don’t want to feel like that.
I don’t want to be in so much pain that I wonder why I haven’t collapsed, why I’m not in hospital, why no one realises how bad it is.
I don’t want to be so very alone and have no control and feel like that.
I have just pulled myself back from that after pregnancy and the birth of my son. I crawled my way through, existing, waiting for it to get better. For sleep to come, for pain to reduce. And it has just recently become more like a life, not a struggle.
After several awfully unwell years in my early to mid twenties, slogging my way through progressing symptoms, feeling worse and worse, I pulled myself out. But it took two years of working 3/4 time, doing little else, working my way up to tolerating 30 minutes of walking and being able to reduce physio appointments from weekly to three weekly. I can’t go back to feeling like that.
I know in my soul that going on a long plane journey, to a hot, dirty, noisy place where there will be many social expectations and food that will upset my sensitive stomach – right after having people staying in my house for a few weeks and going to the social obligations of a wedding at home – won’t work. Going to a place like that with people who ignore or don’t understand Fibromyalgia is not a good idea.
I don’t want to feel like that, vulnerable, alone, sick, scared and unable to look after my baby.
My baby is my first priority. He doesn’t sit still for more than one word per page books, he needs to run and climb and wriggle. He doesn’t yet understand. When his routine gets upset and he goes to sleep late, he wakes early and has a miserable day after.
I’ve said when he’s 3 we could go, it would still be hard, but by then he’ll have less of a baby routine, he’ll understand and hopefully he’ll sit through a movie!
Just because I have Fibromyalgia, doesn’t mean I should have to feel so miserable, I don’t have to feel so bad that I wish I were not alive, I don’t have to feel like that. That’s what all my experiments have been about.
It’s not acceptable to have to feel like that. And I shouldn’t be forced to be. People in my life should be happy I don’t have to feel like that. And that I know how to avoid it.