Money, work and symptoms
Okay apologies for the dump but I just need to yell into the void for a sec… I first experienced symptoms in 2017 and was eventually diagnosed in 2022. My symptoms have got much worse in the last year or so, the fatigue and pain is unbearable most days. I don’t receive any support from my consultant except for annual check ups and my GP is useless. My last MRI scan showed my legions were much better but that doesn’t change how awful I feel. After travelling a lot and working hospitality (not accessible to me anymore) through my 20s and half of my 30s I just feel lost and money is beyond tight. I struggle with feeling like I shouldn’t feel so poorly because so many people with MS don’t seem to be…?!
Please don’t compare yourself to other people with MS! This disease is so different for each of us. How you feel is legit. I think I’m like you - my lesions aren’t getting worse or getting bigger, but my symptoms are getting more persistent. It helped me to read about smouldering MS - Gavin Giannoni explains it well. This disease can be a real mind f*#k - you’re living with very high degrees of uncertainty, not just physical symptoms. All strength to you, sending hugs 🦩🌷🌸
I think some people experience Pain as their main and dominant feature of MS and I’m also one of those people. Altered sensation, numbness, tremors etc comes and goes with me but I wake in bodily pain and go to bed like it. It has made me often question if I have Fibromyalgia on top of the multiple sclerosis. Pain can make people feel very lonely and despairing when it’s a constant, so be kind to your mind when you are criticising yourself. I also get fatigue quite badly but have a strange job and long commute so… I would love to be somebody who really does feel the relapsing, remitting part of RRMS, but with continual daily pain I’ve come to accept this is the deal.