In fact I'll post this, I wasn't going to. I spent 8 years being constantly ill and dismissed by doctors
It turns out I have a condition where I destroy my neutrophils, so effectively it's like when you become neutropenic on chemo
Severe is under 0.5, mine are 0.3
Once a week I inject a drug into myself that gives me severe side effects. I shake uncontrollably, get a fever, bone pain like the flu, can't stand clothes or the duvet touching me, faint, and have a 24hr headache. That's a whole day EVERY week for the rest of my life.
I do this so I can hopefully make more neutrophils and not kill them off
It's so rare in adults I am the only person my haematologist sees with it. In hospital I have a private room, I have blood tests every 12 weeks and spend the day in haematology
If I get an infection like last week when I had a UTI, I have to immediately go on antibiotics so I don't get neutropenic sepsis and die because I can't fight infection
There are no grants or benefits for this, I don't get free prescriptions and I work two jobs to pay my mortgage despite the weekly side effects and the shattering fatigue I get from my bone marrow working overtime. I'm entitled to no help whatsoever
I'll swap anyone this condition for staying in for a week with chickenpox. I was diagnosed age 31 so it can happen to anyone