There is an eloquent calm in that pocket of time dedicated to just thinking about being able to breathe in and out. Nothing else is important. As I sat next to the chest of drawers that holds the adrenaline injections with the phone lying near me on the floor waiting to be picked up, all I could think about was how easily I normally panic and how calm I can be when I actually have good reason to panic. I’ve been anticipating this moment and in some ways a part of me is always anticipating this moment. I am prepared. I am content with it and it’s no longer something I worry about. There are steps, I follow them and so far, every time, all has been okay.

It starts predictably. I can feel my lungs close up, my chest tighten and at first breathing in is fine, but breathing out is difficult and then breathing in is harder and breathing out feels impossible and then it feels like I am under water again and not breathing at all. I still hold off on the adrenaline shot longer than I should. I have more faith in my trusty blue inhaler than I possibly should. I also have too many moments of almost not being able to breathe and I won’t go down this road unless I absolutely have to. Today, I absolutely have to. I don’t have anything against needles, but stabbing one into my thigh freaks me out. My wrist wobbles too much to be able to inject myself properly and so it’s a mess every time. This time is no exception. My wrist dislocates, the needle sinks in slightly wrong and as I sit there, holding it in place for ten seconds as I should, I’m no longer quite as calm. I count to ten, I pull the needle out, I massage my bleeding thigh that I know will be bleeding for an hour and bruised to hell by tomorrow, but I can breathe a little again and so it’s all good. I go back to using my blue inhaler, keep leaning forward and just sit there shaking, feeling dizzy and now getting anxious. Water is calming and so having lost all common sense, I crawl into a hot shower and when I start throwing up blood the thought occurred that maybe a hot shower was not the best of ideas. Cat comes and sit with his nose pressed up against the window making noise. I crawl out of the shower, grab a towel and curl up, still shaking but breathing.

I’d give almost anything not to have those moments. I never think about a cure for EDS, there won’t be one, not for a very long time, if ever. I don’t think about dying any more, you roll the dice and it falls where it will and everybody dies some time so why worry about it? I do think about my life when I’m stuck there, in that moment of calm. I think about how much time I spend being sick and I think about what I do with the time I have left and if what I am doing with it is what I want to be doing with it. Moments repeat themselves and I tire of it. Yesterday was a pretty great day and I knew today would be payback time and that’s okay. I just didn’t know today would also be a bad weather day that would impact severely on my ability to breathe. I don’t mind sitting on the floor just breathing in and out, but I do mind sitting around wasting time that I can never get back.

Life is short, what I do with it should matter. Not necessarily to the world, but to me. Time is precious, it’s not something to while away. I spent all day playing WoW yesterday. Now that was time well spent. Eleven heroics and an Ulduar raid later my hands vehemently disagreed, but somewhere in between the screw-ups and moments of perfection, I realised that I was laughing and being there was more important than being perfect. It’s a lesson I seem to forget easily as I’m always trying so hard to get things right and make things work. I’m miserable today, but rather than putting on a happy face, when my breathing keeps struggling, I log into WoW for a while and friends put the little silver lining back on the cloud. I let Chris take me to bed early and he climbs in behind me because I’ve gotten too tired to keep myself upright and turns on my favourite TV and makes me laugh and keeps saying ‘it’s going to be okay, just relax’, every time my breath catches and I can’t talk. I get tired of being sick. I get upset. I get anxious when everything seems to perpetually go wrong. But then I get unupset. I unwind. I bounce back. Life is what you make it, even when you can’t do anything but sit upright and concentrate on getting as much oxygen into your lungs as possible. I choose what I think about in those times, I choose what attitude I adopt. I can feel miserable because it’s been a really bad day, but at the same time, I can wallow or not. I think not.


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