I've been discharged and back at home,
Rather exhausted & achy having 15 hours of the time in the hospital on awful plastic chairs.
Very grateful to all the staff that took care of me, & thanks to friends & family who sent well wishes, & mum with me at LRI
#Fahrs #RareDisease
Following on from last night, now more medication prescribed, temporarily it means I'm on 17 tablets a day 😳
However, I'm battling whatever it is I've got.
Thank you to all those supporting me 💪
The challenges of living with a #RareDisease #Fahrs
Having a rare disease #Fahrs is so difficult, my brain wants me to get up and do things, yet me body aches so much, the chronic fatigue with my body saying...no thanks not doing anything today, just getting up is a massive challenge.
Here's to a better day soon.
A productive weekend, with much done:
-1 Poster on #Fahrs for MDS conference done
-2 abstracts submitted to World Parkinsons Congress 2026 (1 for #Fahrs the other on #LGBTQ people in the #Parkinson community)
-30 emails sent/responded to
-Reworking of my PFHEA claim
-some people & tv watching
