Hi, I'm Emily, I'm 31 and I started having symptoms at the end of 2021 then was officially diagnosed in August 2022. My main symptoms are bad fatigue and PEM, migraines, muscle cramps and muscle and joint pain, breathlessness and brain fog (which is better than it was but I still struggle with by the evening)..it's like my body is constantly on low battery mode.
I was working as a physiotherapist which I loved, but had to give it up because I just wasn't physically able to do the job but I'm lucky to be able to work from home with a very understanding employer who gets my fatigue. My boyfriend also left me because he said he couldn't imagine a life with me where I was disabled long term, so honestly it's just been a really horrible, isolating time.
I also don't know about anyone else but I have been finding it really frustrating when people around me dissmiss that I may be like this long term, I understand they think it's a nice thing to say but it's been making it really hard to look tp the future when they think I will wake up magically cured.
Anyway, nice (and sorry) that there other people out there who understand. โค๏ธ
My 1st day of waking up this way was Dec 15th, 2021! And my fiance left me too! Twinning! ๐๐
In all seriousness, the loss of my life was hard but losing my partner to a chance disability was definitely the hardest. I have learned that it's not my fault and does not reflect upon my own self worth. We are still the same great people we were before this illness. I have shifted my focus to healing emotionally too yk. Now that my feet are more grounded I can focus on myself.
My PT said something great the other day. "Let's not let your acute illness be chronic. " Let's all find that nice middle ground, our own new normal, and be grateful.
I wish u the best!