Maybe I look ok because I’ve been sleeping this flare up off all day, or I feel worse at night, or I’ve taken a lot of anti-inflammatories?
I used to get this a lot, I still do, especially as I manage to work a full time post in a hospital with shift work. Awareness of invisible illnesses have come a long way since I was diagnosed and that’s so great, but it’s still a very lonely world out there for a sufferer when you cannot find anyone to relate to. This is part of the reason why I’ve started writing again, I want to be able to help people more than what I do physically in work, talk to people online who are mid flare and need someone to vent to about not being able to pick up a plate or open a jar!
Whenever someone finds out what’s wrong with me and that I’m in pain daily are so surprised and I always get the comment now “but you’re so happy all the time” “you’re always smiling and just get on with things?!”
Chronic recurrent multifocal osteomylelitis is a paediatric condition that I should have grown out of by now, unfortunately I’m one of few who haven’t been so lucky! To have my condition you have to be one in a million (hence the blog name) so aren’t I even luckier to still be having flares?!
I have the most amazingly supportive family, friends and colleagues but it has taken a lot of years and some therapy to understand that it isn’t my fault I’m ill, it doesn’t mean I’m not good enough or don’t deserve to be believed…. (again, the title, but you look ok). At some points before diagnosis, I wasn’t believed, neither was my mum when she took me to the Doctor and was repeatedly told I had growing pains, so good on her for being that persistent for 4 years! I’m sure many of you can relate! During that time, I carried on with school and life however it was massively hindered by wedge fractures in the entirety of my thoracic spine, 3 levels in my cervical spine and swelling and pain of almost all extremities.
Anyway, 12 years later and multiple treatments tried, I’m still trying to find the one! I am currently on steroids for a flare and unable to work at my hospital due to Covid-19 and being immunosuppressed. Anyone in the same boat?!
I hope you’ve liked this little intro to my life… the funny stuff is to come I promise (I gave my boyfriend a bowl cut lockdown hair cut today) also woke up at 5:30am to feeling like I haven’t ate for 1000 days.
#thesteroidcravingsarereal
Girl in a million 