Living Fully With Chronic Pain Or Illness

L

Lou

June 5, 2026

Having lived with a chronic progressive muscle disorder probably since childhood, I had already worked all of this out for myself gradually, over the years, but it was really interesting to hear that our journeys were so similar - Julie just took a lot less time getting there as I did. The hardest time for me was my early forties, before menopause. All my life I yearned to be a mum, but I was 27 with a good career when I met my husband-to-be. At thirty I had to give up work, my body was no longer able to cope with it. (I was a qualified nurse and worked as a General Manager in nursing homes when I was no longer able to work in a ward environment.). In my thirties I had seen an obstretician who I suppose hoped would tell me I physically couldn’t have children. I’d always wanted a family but my conscience was telling me not to. I have a very happy life, despite my difficulties, but I felt it was unfair to risk passing on my health problems to another generation. Abnormal muscle biopsies and electrical studies point towards an underlying muscle disorder but are not diagnostic per se in telling which specific muscle disorder, therefore no genetic testing was possible. It was however a huge decision and one that I suppose hoped would be taken out of our hands. Unfortunately the obstetrician said that while it might be difficult for me to have children it may well be possible but I would have to spend most of any pregnancy in hospital. She then asked if we could afford an au-pair and asked how I would manage to look after a baby or young children. This was not the “not-advisable” outcome that I was looking for - it had to be our decision. We could not afford and au-pair, and I didn’t want a future where my children were looking after me so we decided a family, although now our decision, was not possible. I just wouldn’t have been fit enough to be able to look after them - everything works but only for a wee while. (My husband already had 2 children from his previous marriage and is 15 years older than me, so he was happy enough to go along with this decision.) If doctors had told me it would be physically impossible it would have been easier to accept but accept it I did until I was in my early forties and my body started telling me I hadn’t done what I was put here for. It was an awful time and I really struggled. I wished I had something like cancer instead where I would either die or get better, instead of this interminable half-life with its limitations, pain and weakness. My glass previously always half-full was almost empty. I was lucky enough to have a wonderful GP who I talked it all through with, and she eventually managed to get me an appointment with a hypno-therapist who helped me a lot with the not having children but of it. I’d taken up a huge variety of crafting hobbies after I’d had to give up work but decided they went challenging me enough, so I enrolled with the Open University and over 5 years got a BA (Hons) in Literature in 2013. I joined a local choir and through it I teamed up with another 5 ladies and we went out entertaining, not charging a fee but anything we were given we happily accepted and passed on to charity. I did the music accompaniment and arranged a lot of our songs and I wrote a song as a tribute to Alzheimer’s Scotland, which was recorded and made more than £3500 which went to the charity. Covid and advancing age brought that group to a natural end but I have a new group now and we continue to go out and entertain now and again. It’s certainly not the life I planned, and it’s not easy, but I like to think I make the most of it. And at the end of the day, if we can’t change our health we just have to find the best way to make the most of what we’ve got and try to concentrate on the things we can still do rather than what we had to leave behind. Your course will help many people to help to do that, and I wish you and anyone reading this all the very best. Thank you.