I’ve been without a carer for a few weeks, without contact too, so I’d no idea whether she was coming back either, so it’s been a bit of a struggle to say the least! But I now have two new carers – Aileen and Lesley, holding the fort 👍🏻👍🏻👍🏻. I’m absolutely delighted!
This week has been wonderful! Cleaning done, laundry washed and dried, hospital visit sorted, dinners made & a little trip out to the village flea market too 👍🏻👍🏻👍🏻
My carers are definitely worth every penny!
I had one of those conversations today where explaining my AOSD became sooooo difficult! The person couldn’t understand why, if I went out in my wheelchair, I still felt zapped???
“It’s in every joint” I explained. “So using my hands, elbows, shoulders, neck, back, hips, knees or ankles causes pain and fatigue”… “Add the constant fever and flu like symptoms and imagine having to go out with a fever and those horrid aches you get when you’re ill, and you get a tiny picture into me everyday”.
“I’m being attacked by my immune system, only huge amounts of immunosuppressants are helping, and only a small amount, as my disease is severe and refractory to treatment”
“Being in a wheelchair is not the worst thing. The worst thing is this awful fatigue, fever and flu-like aches. It’s draining!”
“Plus, my disease will cause premature death, either due to it attacking an organ, or because of the high doses of steroids I have to take, and have taken for over eight years now – and by high, I mean 1000mg iv’s every four weeks AND daily doses of 20-40mg on top!”
Frustrated muchly! It truly is impossible to explain!