Newly diagnosed MS sucks
I just kind of wanted a bit of a moan & vent to a supportive ear.
I volunteer with St John ambulance and have been for years, however, yesterday, MS took over everything! the pain I was in was excruciating the amount of walking I had to do I couldn’t lift someone in a carry chair and had to get help when I never had to do that before, I was in so much pain I honestly threw up . I couldn’t take any more painkillers now since I’m home. I feel like having a bit of a pity party for myself as I’m left with my own thoughts and that’s never good. I’m thinking maybe I can’t do this, however volunteering makes me feel like I have a purpose. I can’t work. I don’t have a job, I sleep more than my cat is this just one of those things. I used to be a marathon runner. I used to have a good important job. I was good on my feet and did long days. I really couldn’t keep up yesterday. I felt my feet were clomping like Frankenstein. I have RMMS and I was only diagnosed the end of September 2022. I was able to do things in August fine long days and things okay I would be exhausted and needed a week to recover, but today I was very unstable. btw I am not on medication however I’m waiting for my MS team to start me on Kesimpta (ofatumumab) I live in Southwark and the two MS groups here became defunct in 2017 an 2019! I don’t really have a support system here. my closest friends, Are not in this country, and I don’t have any close friends in the United Kingdom. My 3 BFs are there for me and the boys are good because I don’t have female best friends, but I wish we were all the same continent. Sometimes. The crap things that happen when you’re diplomatic child, Or DipliBrat. I have not let people know about me but I will have to at some point. I’ve been a member of a running group for 20 years and they’re very social. I try to meet up with them and do a walk at least with them. Running and sports has been a part of my life, my entire life.
I am more unstable on my feet when my muscle fatigue kicks in. And then people think I’m drunk and I’m not. My legs shake and I can’t support my body I am completely unstable. Sometimes I have to walk with walking sticks. The MS brain fog, memory, & cognitive issues. My stress levels are high. Due to me not being able to be me. I don’t wanna post this because it is really not that important or significant. I just know this is a safe place. I have chronic fatigue syndrome as well as MS! I have had it for very many years but I’ve managed and I’ve been good with it and I’ve been good with managing it up until my ankle got broken last year and then, I’ve got Covid in 2/22/22, I was “diagnosed” with long Covid shortly after, my brain has not been right, some people around me make me feel so stupid, that I know I am. My brain is not what it was. I was a member of Mensa, I had a PHD & a had a high powered job, shortlist on the 40 under 40! I know I am not, or was stupid. Why should I explain the best I can what is “wrong” with me. A shoulder to head MRI, a CT scan, a spinal tap, tons of bloods taken, and countless of doctors and neurological appointments. a full body CT & MRI. I knew there are things wrong with me, as an ex JR Olympian, triathlete, marathon runner, OCR, and more etc I WAS BETTER THAN THIS!!!.
Sorry that was ALOT
You will have bad days but you're still here and you're still trying. Which makes you badass, remember that. You can still do great things, those things just might be different.
I know how you feel xx