I’m already a shadow of my former self
I was diagnosed with RRMS this month, although my neurologist suspects I could have had it for around 10 years.
I’m feeling so much grief and anger at the minute. Anger at the GPs who dismissed my symptoms as anxiety over 10 years, anger that lesions on an MRI of my spine last year weren’t flagged, and just exhausted from having to advocate for myself.
My confidence and sense of self have taken such a beating. I had an especially bad relapse in June and now have reduced sensation/numbness from the waist down, bad optic neuritis in my left eye, fatigue and awful heat intolerance. I suddenly need a cane and can’t walk far without struggling. I wasn’t this bad before I had three days of steroids at the hospital either.
Before this I was a successful self-employed artist, back in 2021 especially I was making new friends, learning new things, salsa dancing, doing CrossFit… I really liked who I was and the life I was building. Now even going for a walk can make me want to cry at how slow and unsteady I am.
Friends and family try their best, but I worry people will eventually get sick of hearing about it or avoid the subject because it’s depressing.
Has anyone else felt like they completely lost themselves after diagnosis/a bad relapse? Did you eventually start to feel like you again?
Welcome 🤗, you are understood, and you are amongst many who have been through this. I have found MS to be a wicked rollercoaster 🎢 ride, physically, emotionally, mentally, and completely overwhelming, occasionally. I say occasionally, because with DMTs, and steroids, and anti-inflammatory diets, and daily movements, we can have some good stretches of time, as well. Your team around you is extremely important, but know that the participants may change, over time. You are quite astute, when you thought of the chance of friends leaving. Not all humans are designed to deal with us disabled folks. That’s okay!! I don’t have the energy to hold up their egos. Keep talking, keep asking questions, and start to make your, “New Normals” into your next miraculous phase of life!
I really feel for you I’m sorry it’s like this. It’s tough to manage a new diagnosis especially after a relapse but things should improve but it will take time to recover. Hope you can continue making art. And that sucks that GP’s dismiss these symptoms as anxiety. I had terrible heat sensations in my legs from 2019 and was also going though a depressive time and I went to the doctor about it and he suggested beta blockers for anxiety!! I obviously refused. Diagnosed in 2024 after double vision about 2 months before my son was born. High stress brought my ms to the surface and I’m now on treatment and doing well. Things will get better. Try and enjoy what you can and embrace the new normal. All the best