When it started
I was diagnosed in September 2026 but had been exhibiting symptoms since February 2026.
What it’s like
My days are vastly different apart from the fact I pretty much spend a lot of time day to day in bed due to pain and weakness. I had to give up work in May 2026, I worked in an office and the stress, pressure of work was making my symptoms even worse- even though my employer was super supportive. I suffer from tremors in my legs every day/night- the duration of this varies. In September 2026 I was rushed to hospital, as I became paralysed from my hips down, this was super scary. All my scans were coming back normal- and to be honest, some of the doctors made it seem like I was making it up.
What helps
I rest ALOT. Sometimes I can go 2- 3 weeks without a shower but if I rest, I can have a shower with my husbands help. Sleep helps and just trying to listen to my body. Which means I do not do an awful lot right now but I am hoping that changes.
A message for others
If you have just been diagnosed- advocate for yourself, educate your friends and family so they have a better understanding on what daily life looks like for you. I would also take any and all support offered- if you feel deep down that you will benefit from it. The physio team in hospital really listened to me, and I now know what works for my body and what doesn't. I am still learning about my new normal and if you have a great support system- that helps too. If you do not, you are not alone. I am with you!
Thank you for reading
Emily
