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Saturday, November 5, 2011

Words Unsaid - Cogntive and functional difficulties + EDS3 (Hypermobility type)

There is so much I want to say to K and never enough time. I can blog in the week and write in other ways, but it feels like I have to box myself up into one hour in the week, which is fine if things are going well and “I am well,” but lonely and isolating if they are not. The story is all so complicated that it is tiresome having to explain to others what the problem is, not that they often understand. Even the simple common cold becomes more complicated causing additional fatigue and a peak flow which is normally about 600 (the reading of a typical male) deteriorates to 350 which would be normal for a female, but feels hugely abnormal to me.

My behaviour is strange. I have periods of acting like I am experiencing caffeine overload, even if I am not. I am usually articulate, but have difficulty explaining situations with clarity or misinterpret information and/or instructions. This results in confusion and difficulty for those around me.  It is like having a screw loose – but I am not stupid. I feel lost in my head and the wiring is all wrong so I cannot get the right information out. I am frustrated because my behaviour can be either manic, or on the reverse that things are ‘foggy’ and moving so slowly, as though I am a long, long way away, like on a old-fashioned long-distance phone call.  Both situations result in difficulty for me in communicating. The former, manic state because I act without thought, irrationally and as if I am all over the place. The latter state makes it hard for me to understand anything unless you speak to me as if I am very stupid and very s-l-o-w. I feel trapped in my head because in neither extreme state can I communicate in a moderated way. This is very isolating and upsetting for me, and difficult for those around me to understand. I am not sure what I should do to best support either of these situations, for myself, or those who are close to me (personally and at work).

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