AOSD = 4, Me = 0 today! Yep I’m losing the battle on too many counts. Which has a major negative hit when I’ve been handling this darn disease so well recently…
I’ve been to A&E twice in two weeks, my GP twice in two days and the infusion ward every two weeks for years, so maybe that doesn’t count? But it all feels like too much right now 😩. I’m losing, that’s what matters, so I’m feeling really down and grumpy.
I want to just get back on to an even keel for a little while, I want some peace and some fun! Without even more pain, even more fever, no energy and horrid flu-like symptoms! Yep it’s winning, and I feel defeated 😕
Here I am laying on my bed feeling dreadful AGAIN, it’s a constant battle and I’ve had enough! Dog training has been put on hold, fun is a dream away and it’s a lovely long bank holiday weekend where I should be out making memories with my boys…
Time is short, I have an awful life expectancy, so I hate times like this, as I feel like my life is slipping by without fun. Every moment is precious, so I hate times like this.
Don’t get me wrong, I accept my disease, I know I’ll have bad days, but this has been constant for weeks now and I’m losing far too often.
I need to create my memories, my bucket list is waiting… I need my fun!