Over the past 6 years of living with Elhers-Dalnos (3 before diagnosis and 3 after), I’ve seen how some items are of such great importance to me  – almost as if they are real people who belong in my support system.

I might sound silly, but I absolutely love my ice packs, hot packs, all my ointments and rubs, every essential oil that I have, all the tablets that help me function, all the supplements, my tapes and guards, braces and slings, the mattress that I can’t sleep without, all the extra pillows that take the rest of my bed up, my foam rollers and spiked massage balls, hydrotherapy essentials and so on just to name a few. They have each played an integral role in helping me make friends with my body and learning to manage this illness to the best of my ability. I’m very grateful to have them-  they make up a different sort of Medical Team for me. At least that’s how I look at it.

To suddenly find that 3 out of 4 of my hot bags are now leaking and can’t be used, was a complete nightmare. I thought it was bad enough and I wake up to 1 out of 4 of my ice packs punctured as well. All the gooey blue stuff oozing out of it. Yes, true – I’ve got 1  hot bag and 3 ice packs left, but I’ve also got 9 joints that need to be looked after, so these little angels make a huge difference.

Do I sound like a spoilt brat? I hope not. The truth is, when all the 9 joints scream all at once,  so loud that you want to scream too, and you get fever from the inflammation and gastric pain and cramps, your muscles are so tight they feel like rock and even the strongest of the medicines don’t work…… It’s one hell of a difficult situation.

As in update, my lower back is as bad as it was when I first realized that I’ve got another slipped disc – this was in early July. I’m dreading even getting off bed and being in bed too long is as painful. Standing hurts too much and walking isn’t any better.

Extra care time starts now.