Fit The Bill

I’m actually rather ashamed of that title, for reasons which will become self evident later on. Just thought I’d get that out of the way now, before I forget.

So, I actually had a seizure yesterday, and another today too. Yesterday’s was weird. I had an aura, and placed M safely out of harm’s way, or handed her to someone (we were visiting W’s parents, who live nearby), then instead of lying down, for some reason my brain decided it woul be an excellent idea to take a few steps across the room before giving up on the whole standing lark completely, and falling backwards. Fortunately W was there to catch me. Then, I remember my top lipcurling back/up, probably exposing my teeth. It was odd, because it almost felt numb – not my usual disconnected observation, but as though someone was holding one of those electrical impulse probes to my face and triggering the muscles randomly as they do in the occasional documentary about that sort of thing. Honestly, epileptic or not, these things are just getting stranger and stranger.

Today’s was probably a dissociative seizure (or whatever the flavour-of-the-month word for them is among health practitioners). I was more or less “there” mentally, though with the usual inside out andback to front priorities going through my head – for some reason it was vital that I both listen to W and the television. When my body feels all there but won’t respond to my orders for it to move, it probably isn’t epilepsy pinning me to the floor.

In other, more global news, a Ten Minute Rule Bill regarding Epilepsy was read out in parliament last Wednesday. I meant to mention it here sooner, as I contacted my local MP to ask that she attend (she didn’t appear to be in parliament that day, alas, and nor did her office get back to me…).

The bill will recieve its second reading in March, which apparently is when these smaller bills fail. However hopeless it may be, I shall be in contact with my local MP again to try and make sure she is there for this reading, and to ask for her support in getting it through the system. To anyone in the UK actually reading this blog (and I know my readership is um, select), I would ask that you too enquire as to whether your MP will be in parliament when it is read out, and if they could support it. Once again, apologies for the title pun. Sometimes, these things are hard to name.

Advertisements

More Fun

This is turning into a bit of an online seizure diary really – but that’s good. It’s a way for me to keep a record of things which I can’t misplace or drop, and at the same time, if even one person reads this who didn’t know much or anything about epilepsy beforehand, then I have done a good thing.

Today’s seizure was brief, and pretty much entirely convulsive. I was walking along, and had a sensation in my arms, one which, I’ve discovered, is not as comman as I’d thought. Afterwards, I said to W, “you know when you feel all…shivery” and he didn’t know, but it’s hard to describe it in any other terms. Still, I’ll try. Haveyou ever had that odd sensation that someone is watching you? it’s often described as the hairs going up on the back of your neck, or having a shiver go down your spine. I suppose the best I can say is that it’s like that – only in your limbs rather than the back of your neck. Well, sometimes it’s all down my back too. The sensation that I just need to gave one almighty shiver or shudder and I’ll feel a lot better.

Either way, I had this sensation in my arms (and slightly in my legs), when, without any other warning, my leg jerked up and I folded untidily to the floor. In my head, this lasted at most ten seconds or so, but W puts it at more like a minute, possibly even two. For anyone who thinks that isn’t very long, believe me, when you are incapacitated you realise just how long that can be.

I guess this means that my driving license remains just as out of reach as it has been for the last four years. Oh well.

Aura to Seizure.

I tend not to use the word “aura” that much, partly because my auras, when they happen, tend to be almost as bad as seizures and get lumped together at times, partly because they also tend to just be the start of a seizure, not an isolated warning a hour or more beforehand, and partly because, unless you know about epilepsy, the word “aura” tends to be associated with spiritualism and could be misconstrued. The two don’t exactly overlap.

Last night I had a seizure. That in itself isn’t a shocker (they do seem to have gone back to their once or twice a fortnight pattern, which is good), but unlike most of my seizures, there are parts I honestly do not remember; things W told me I did that I have zero recollection of, such as banging into the armchair. Obviously, that’s kind of normal for a lot of people, but the nature of my seizures is such that I usually have a working knowledge of what happened, even if I can’t exactly remember when.

The seizure itself wasn’t all that long; about 3 or 4 minutes according to W, but it was preceeded by a long aura which was almost as debilitating. I can’t say I’ve ever been blind drunk (though I have been tipsy a few times during my teens), but I would say the auras I sometimes must be a little like being very drunk indeed, in terms of loss of co ordination and concentration. My ability to focus in items goes as well, and I get waves of exhaustion, though I would still consider myself functional – last night O got a little worried as I was lying on the floor (a common precaution I take), and I was able to tell him that it was okay for him to keep playing as it was just an aura. Unfortunately, this did mean that when it morphed into a seizure later on, he didn’t realise, and carried on playing. Never mind.

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.