Monthly Archives: September 2015


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!

Categories: Uncategorized | 1 Comment

Impossible to explain…

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!

Categories: Uncategorized | 1 Comment

Blog at