Tuesday 2 November 2010

Down Time and Safety Measures

I had a couple more seizures over the weekend, which I probably would have written about at he time had we been at home. In stead we were house sitting, so internet access has been reduced. Maybe some day I'll be able to afford a smartphone and join the new crowd who are online wherever they go.
I also made a foray on my own with my daughter, M. This did, of course, require some planning. The people I met up with had to be warned in advance of my condition and that there was a chance they would have too look after M briefly if I had a seizure (as well as being told roughly what my seizures look like), and at every step of my time out I had to report back to W, so that he knew myself and M were okay. So, frequent "I'm okay" texts were sent. If I didn't have a mobile phone I don't know that it would be safe for me to take either of my children out by myself while they are this youung. As it is, I am acutely aware of the risks.

The obvious question now is of course: "Well why take those risks?" I suppose my answer will probably never be good enough to the recesses of my mind in which I question my own behaviour, but the fact is, a life in which I never take my own children out of the house without someone supervising me doesn't seem much of a life to me, and on a day when I am not feeling so bad, as long as I take the above precautions I don't believe that I am in the wrong. I carry a card which states I have epilepsy, and I never stay out for more than a couple of hours.

I take similar precautions at home. If W has to go out for any length of time, we make sure I am not alone. I never bathe when I am alone in the house, and I never lock the bathroom door when I bathe. I do take baths as opposed to showers sometimes, but only when I am feeling okay, and W checks on me. I don't do much cooking - though that's mostly because I am a disaster in the kitchen and W is a very good cook. If I am going to be in the kitchen, W is there anyway, because he is always there for me.

I suppose some people would consider it odd to have a partner who is with you pretty much 24/7. In most relationships, one or both partners works at least part time, and both will have hobbies and friends that perhaps do not overlap. Either way, most young couples at least do not spend as much time together as W and I do. The result of our close proximity can a t times put a strain on us - W feels responsible for me more than most men are for their partners; he has likened it to having three children at times. I, on the other hand, feel an intense gratitude towards him. I know that there are plenty of people out there who couldn't handle the pressure he does, and I feel actuely guilty whenever I have a cluster of seizures as I have had this last week or so. When I am fitting, he not only has to make sure I am okay, he has to look after our children, too. On many occasions he has had to leave me fitting to attend to their needs, and that's a horrible decision for him to have to make. I think both of us are going to be very relieved when O and M are able to look after themselves safely.

There aren't that many other specific precautions I take, although there are many other things which I am not allowed to do, such as drive, parachute, scuba dive... fortunately I can't say I've ever had that much of a passion to do most of them, though of course, knowing I can't is enough for me to sigh somewhat wistfully when I watch footage of coral reefs sometimes. Very probably I would encounter more restrictions if I had the money to pursue expensive hobbies like this. For example, I would imagine horse riding to be rather risky. Of them all, the only restriction I regularly feel disappointment or frustration about is my inability to drive, because it's such a nuisance, especially where visiting family is concerned. But there you go, I guess. It would be downright dangerous for me to drive as I would be a risk to many other people than just myself. Passengers, pedestrians, other drivers... it doesn't bear thinking about.

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