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Epilepsy and Lies…

My thoughts have been turning once again to my jigsaw. My life puzzle.

I got the results of the sleep-deprived EEG. I say results, what I actually got was an unsigned letter from the consultant that said “her sleep deprived EEG confirmed a liability to generalised epilepsy, with numerous bursts of seizure activity, none of which were associated with any clinical manifestations. This result is helpful and confirms the diagnosis.” What the merry-hell does that mean? What diagnosis? What numerous bursts of seizure activity? When did this seizure activity happen? When I was asleep? When I was falling asleep? When I was awake? Did they happen in my brain and not quite make it to my body? What does it mean??

I was expecting answers. All I’ve got are more questions. The letter makes no sense to me. It’s left me confused and wondering whether I should just give up on my quest for answers. Epilepsy is part of my puzzle. Health is a corner-piece and my epilepsy is intrinsically wound through and around that piece. So many other pieces are dependent on that corner-piece and in order to make sure they keep flowing and slotting together, I need to understand my epilepsy. If I can make sense of it all, then I’ll have a better chance of making better decisions.

So many pieces! Is it really just one puzzle?? I know I’ve picked up some of the same life fragments before. I’ve turned them over in my hand and I’ve tried to slot them home, but they haven’t fit quite right. It doesn’t matter how much I want them to be the right piece at the right time, they can’t be manipulated. I can’t read my health pieces at the moment. My options aren’t clear to me and I don’t know what questions to ask. I don’t know if I ever did. I’m not sure I know how to take control, I know I have to. I just don’t really know what to do next.

Coming round in a hospital bed is not the best feeling in the world. The split second when I don’t know what’s happened, followed by the long drawn out hours when I dwell on what did happen. I’ve said before, the nursing staff are lovely on the whole, but then there’s the part when I realise I’m not wearing my own clothes and the talk about a urine sample I have no recollection of giving, then there’s all the stab marks in my arms where someone has, often unsuccessfully, tried to administer something, although I don’t know what. Then it’s not being allowed to go to the bathroom, being told to use a commode. It’s humiliating. Don’t get me wrong, I know there are protocols and some things just have to be done, but I still find it humiliating, demeaning and depressing.

No-one in hospital has time. People charge here, there and everywhere. I often feel I’m a nuisance. That I’m a waste of time and space. I’ve been held in psych wards, mixed wards and single-sex wards and I’ve felt the same in all of them. I say held, because I’m not there of my own free will. Because I know that, usually, there is no need for me to be hospitalised it makes me feel worse. I’m taking up space and time that could be better used by a more needy person. I hate it.

I’m in a situation right now that I simply do not know the best way to deal with. It’s been going on for some time now and it’s beginning to have an adverse affect on my health. It has spiralled out of control because one of the protagonists in the situation chose to lie by omission. That person was not me, but because of their “omission”, I’m paying a very heavy emotional price that’s starting to have a physical cost. I want to set the record straight, but the fallout for doing so could be verging on cataclysmic to a group of people. The stain on my character would be removed, but the person who lied would never forgive me and the person they lied to could make life even more difficult for the group than they currently do. If I knew what that person would do with the truth, I’d tell it. But, there’s a part of me that knows this person has a rotten core and would use the truth in a malicious manner. This began 14 months ago, probably had a helping hand in the stresses that facilitated the last cluster of fits I had and has been gradually morphing into a ridiculous situation that’s bordering on farcical. All because a person I love dearly, lied.

Anyway, I’ve gone a bit off on a tangent, but this is wearing me down. It’s one more piece of my puzzle that shouldn’t have to be a part of my jigsaw. I’ve just re-read that last paragraph and if I could find it in myself to laugh out loud at it, I would. It’s bloody ridiculous to feel so hemmed in because of the actions of an other. I’m tired of it.