A way of life

I write about problems and pain probably more than is good for me. A lot of life is filled with it and escaping is difficult. It’s tempting to think about how to make it stop and sometimes when it gets overwhelming, all I think about is how to make it stop. There isn’t a cure for EDS and lets face it, there isn’t really much in the way of treatment either. Nobody cares about rare disorders that most doctors will only come across a handful of times in their careers and it often seems as if the specialists in the field who has shown an interest is unsympathetic.

I don’t think my EDS consultant is unsympathetic, I think most of the time he’s simply useless and is very much aware of that fact. The symptoms of EDS are difficult and messy to deal with and palliative care has its own negatives it throws in the mix. And as the symptoms are caused by an underlying defect that can’t be fixed, treatment is more often than not only partially successful if any help at all. The result is that at some point it becomes necessary to decide what to seek treatment for. The first time I dislocated my shoulder, I went straight to A&E. Now I ease it back in, rest it for a day or two and think nothing of it. The first time I threw up blood I thought I was going to die and rushed to see my doctor. Numerous tests later and we now know that it’s just my collagen causing tears and unless something ruptures, there isn’t anything to be done about it other than try not to worry about it and cut back on the caffeine and fatty foods. I was admitted to hospital the first time I had a seizure and after establishing that it’s just a rare aura symptom of a migraine attack, I no longer even call my GP when it happens. After the initial check to establish causes, when the cause is yet again determined to be faulty collagen, it’s pretty pointless seeking medical treatment for incurable symptoms that are naturally resistent to treatment. The next way of life opens up – be on the look out for complications.

We don’t worry about lens dislocations, we worry about retinal detachment. We don’t worry about vomiting blood, we worry about intestinal ruptures. We don’t worry about dislocations or even catching nerves or blood vessels in the process, we worry if neuro symptoms don’t clear up after three weeks or blood vessels break when they’re caught. We don’t worry about aura symptoms unless they persist for more than an hour and is also truly bizarre and we don’t worry about seizures unless they’re not part of an aura, last for more than a few minutes and the post-seizure confusion takes longer than 6-8 hours to wear off. Different rules apply to me. We don’t worry about asthma attacks that require an adrenaline shot to jump start my breathing unless the shot doesn’t jump start my breathing quickly enough. We don’t worry about alot of things. I can’t keep functioning at a level where I behave as if the serious stuff is serious because even though they are, there is nothing more that can be done unless there are complications that require treatment.

Going through a rough patch tend to affect my thinking badly. I start living in shorter and shorter spaces of time, dividing life into tolerable chunks. On bad days, those chunks can shrink down to seconds where I have to keep telling myself that I can’t think about the next second, thinking of feeling like this for two seconds is not something I can live with. I can only think about this second, right now, and living through this one very short second and then I’ll worry about the next one. The problem of living in small pockets of time is that there is no continuity. It’s crises mode all the time and nobody can live there, it’s an unsustainable, high stress, taxing place to be and the most important thing is to get off the ledge before you jump or fall.

And so a lot of things become everyday. It has to. It gets to the point where I have to think about what I want out of life and how to make it happen by doing something more than just surviving the moment. I brush my teeth, style my hair, shower, get dressed, eat, walk, sleep. I have easy hobbies – movies, books, TV for the very short time pockets, computer related things like warcraft and blogging. Hobbies serve the purpose of making time go by quicker in a fun manner, they’re indulgences that give life meaning and substance by making me happy, making me laugh and making me feel as if I’ve accomplished something. They also tend to develop rather usefull skills, warcraft has done more for my coordination than most things I’ve tried and as I’m currently reading slowly through Einsteins’ book on relativity, it does feel as if my brain is working rather than just floating along in a vacuum.

Sometimes daily life is just being sick all day and needing help to reach the straw in the water glass. Sometimes it gets a step higher and I curl up on the couch with a good movie, good book and fully charged and loaded iPod. Sometimes it gets better enough to allow for a more WoW, a trip to the cinema, a short walk into the country side. And somewhere along the way it has to stop being about getting better as there is no getting better. I’m as well as I’m ever going to be and that means that one of two decisions are made. Either I’m too unwell to ever pull it off and it goes into the written off pile or I start to think about how to do it despite the obstacles in the way. I still really love raiding and it’s a challenge to keep making it work so that it’s something doable on a regular basis. I really love walking and its an even bigger challenge to make that a possibility even on a monthly basis. But it’s worth the effort. Life goes on and every improbability that is turned into a possibility makes it that much more meaningful. Sometimes I have to brave enough to stop thinking in pockets of time and start thinking about all the things I’d like to do but haven’t done and pick a few or just one and figure out a way to make it happen. Life should be about dreams and fulfillment, not hospital waiting rooms and bathroom floors.

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