I am new here. I am 21 years old, I was diagnosed with relapsing remitting MS when I was 18 but I started noticing little things around 14. Very young I know!
I am still so clueless on what MS actually is; I know the basics but I am experiencing new things all the time and they absolutely terrify me. My newest is MS fatigue. It started about 2/3 days ago and I am so beyond drained trying to fight against it (I am a stay at home mum to a 16 month old).
I’m not 100% sure what the point to this post is really, I guess just for some info and advice, and to just know that I’m not alone in this. When I was told my family took it harder than I did, I didn’t cry or anything I just kind of said ok fair enough and that was it. I know that it can be completely life changing and yet I don’t know how or why. All I know is that for the past nearly 5 years I have felt so alone in all this because nobody understands how I feel. I constantly feel like it gets brushed off because I may look ok, but I’m just very good at hiding my pain, I’ve got very good at walking and doing things normally despite the amount of physical energy it takes to do things at a normal pace. I guess I just need people to talk to? I don’t know.
I am already finding it hard with work, my previous job I was a toilet attendant, I ended up crying on shift every day and after about 5 weeks of having the job I found myself in hospital with a flare up and I lost my job. I have my standard GCSE’s and 3 A-Levels but I’m not really qualified in anything, all I know is bar work and cleaning but they’re the worst jobs for me. If I continue to do these kinds of jobs will I get worse? Will I get to the point that I can no longer work ever?
I don’t even know the long term effects, I have seen about people losing feeling in arms, legs, fingers, or their face and neck and their taste buds… I didn’t know about any of these possibilities.
I feel so silly for writing this, for not knowing anything about a disease I have to live with for the rest of my life, for not knowing what could or will eventually happen to me. I feel silly for being so scared and nervous at my age.
If you made it this far, thank you for reading and I apologise if this post seems completely pointless.