This week, someone who didn’t know me pre-adrenal insufficiency diagnosis asked me what I used to be like. I said ‘more fun’ as my immediate response, but then we talked about the things I miss about my ‘old’ life. Most of them I’ll probably never be able to do again, and while there are positive things about my current life, it’s not through my own choosing that I’ve had to give up these things- it’s 2 years this week since I was diagnosed. Very few people actually talk about everything I’ve lost with me, most people find it an uncomfortable subject for them. Here are some things I miss from ‘before’:
- playing music This is the massive one for me. I used to sing, play clarinet, try to learn other instruments, play piano… It was literally my life. I can’t do anything which requires controlled breathing and I can’t concentrate enough to play piano. Plus playing piano raises my pain.
- teaching I was gutted to have to stop work. I’d always wanted to be a teacher my whole life.
- independence my husband and my friends help me with everything. I can’t leave the house by myself.
- walking I used to walk everywhere. I have a blue badge now and keep walking to an absolute minimum.
- hiking I loved climbing mountains. The higher the better, I love the views at the top.
- running I used to run 10k a week. In fact, I miss most sports.
- alcohol I didn’t drink a lot of alcohol, but I did like a glass of wine with dinner when we went out. I can’t tolerate any alcohol now.
- being a size 8/10 I’m not my current size through choice or laziness.
- choosing what to eat I’m super conscious about carb and sugar content in what I eat. Some foods I can’t eat. I don’t really see eating as a ‘fun’ thing at the moment, more as another medication.
- spontaneity everything is in a routine because it has to be. I have to get up at a set time, take tablets at a set time, eat my meals at a set time. I can’t just drop everything and go ‘I’m going out to do this instead’.
- sleeping properly I haven’t slept through the night in years. An average night’s sleep is about 4 hours, usually in broken bits.
- I feel like I have to be permanently paying attention to my condition, and it’s a lot of pressure. It’s not a case of ‘take your tablets and it’ll be fine 90% of the time’, it requires a lot of work. A friend and my husband help make though.
- travelling takes some preparation. The last flight I took resulted in a hospital trip. Even UK trips still require a lot of forward planning.
- shopping I liked browsing shops, especially for christmas presents. I can’t really do it v easily now.
- showering every day I really hate not doing this every day, but I physically can’t manage it.
- cooking/baking I can’t cope with the heat and following a recipe. It doesn’t end well. Last time I used the oven by myself, I had to call an ambulance.
- sunshine heat causes me massive problems. I miss having a bath too for the same reason.
- my sense of humour bits of it are still there, but it takes way too much energy being the person I used to be most days.
- being pain and fatigue free. I also feel dizzy all of the time.
There are likely other things, but that’s what I was talking about this week when I was asked. I don’t like the idea of an entirely negative blog post, so here are some things I’ve ‘discovered’ or like doing since diagnosis:
- writing a blog If I can’t play music, I can be creative this way.
- crafts I’m currently making christmas cards with sequins. It might take me a long time, but it’s easy to put down and pick up again.
- knitting I didn’t do this before I was ill. I love doing it now
- great friends I really enjoy spending time with my close friends. I enjoyed it before too, but I appreciate the time with them a lot more now.
- eating dessert I don’t eat sweet things v often anymore, but when I do they taste so much better than before!
- listening to music or watching performances
There are definitely positives for my current life. But I do miss some things from before.