Cycles

I had a fairly massive seizure this morning. It, overall, lasted about an hour and fifteen minutes, including my initial recovery. But I was wiped for a long time afterwards.

I can remember most of it, including the point at which I was deliberately trying to blank it out; a sort of “La la la this isn’t happening” moment, when O was tugging at my shoulder telling me “Mummy get up”, or something like that – as I said, my memory of specifics is hazy. I know at one point I was convinced I was going to die. It may seem melodramatic, but I often get like this in seizures. My mind is all over the place, and to say I’m not thinking straight would be an understatement.

I wasn’t hugely bothered about the concept either. I don’t know what possessed me to be that convinced of it, but I had a moment where I thought “Oh well, I guess this is it then,” as casual as you like. I think at that point my breathing may have been a little erratic, so it could have been oxygen deprivation. Or the reverse. I do often end up taking great gasping breaths at points.

It was odd, really. Bad, too – of course it was, and I probably come across in textual form a lot calmer about the whole thing than I really was. But part of the issue I have is that my brain just disconnects. I lose my normal emotional responses, which was evident afterwards, when I burst into tears about three or four times, presumably as my brain got back on track. I felt utterly freezing afterwards, too. I think that the convulsions I had towards the end burned up a lot of energy. I couldn’t stand by myself either.

Sorry, this is a rather garbled entry, isn’t it. Still, it’s nothing like as garbled as it would have been had I written immediately after my recovery, so that’s something at least. And in my defence, I am dog tired right now.

I have the delights of a hospital appointment regarding gall stones tomorrow, too. W has asked his father to take me to the hospital, rather than me getting the bus, because of what happened today. On the one hand it’s nice not to have to get the bus, but on the other it is just another reminder of what happened. The chances are I won’t have another one that severe for months, or even a year.

Then again, I will openly admit that I get rather too blasé about my epilepsy. It’s easy to really. All I need are a few good days/a couple of good weeks, and I start to forget what a pain it is when I go downhill. (And how scary it is for everyone around me.) Still, it beats being on red alert all the time, which would be the other extreme. I find that gentle denial makes the good days more relaxed, though I know that W doesn’t really switch off. I know I would worry less if O and M understood better. I have a nasty suspicion that I knocked into O while having the fit because he kept coming too close to me. I don’t really want to ask. Most of the time I can handle descriptions of my seizures; I crave them in order to make sense of it all, and place events in order. But every now and then I have one where I just don’t want to know. Today was that day.

Purple Day

Today is Purple Day – a global day for epilepsy awareness.

Sat here in my tinpot little house, it’s hard to feel particularly connected to anything global, or that I can make much of a difference to help other people, but one of the things I decided on early after my diagnosis was that I wasn’t going to ever hide the fact that I have epilepsy, so it would be particularly negligent of me to not post today and at least add a few words on the subject to the global collective.

(Wow, that was a long sentence.)

Awareness of epilepsy in all its complicated, expansive and criss-crossing nature is not particularly great. I’m sure most people have heard of it, sure, but a lot fewer will have heard of much beyond the “flashing lights thing” that is a neat visual cue for television programmes which feature characters who have it. I’ve seen epilepsy on TV a number of times, and that part is usually what gets a mention. They fail to mention the many other types of seizure, or the fallout from having even one seizure, and (for the most part) focus instead on the shock factor of a character dropping to the ground and shaking a lot. I have seen some pretty good representations on the box (for example, a minor character on a medical drama who was in for observation, and great difficulty was had in triggering her seizures; it transpired they were stress-induced, which made for a change), but time and again, when I tell people I have epilepsy, I often end up having to explain that I am fine with flashing lights, television, and sitting in front of a computer screen. The epilepsy warnings that are (very wisely) shown before flash photography features on the news unfortunately don’t help here either, though they remain very important for the people who do have photosensitive epilepsy. It’s mostly when I consider the various types of epilepsy that I remember just how lucky I am, and how lightly my life is impacted by comparison. Here I am, moaning about not being able to drive, and about having to have someone in the room with me when O and M wash, and really, it could be so, so much worse.

I have never been incontinent due to a seizure, never fully lost consciousness due to one (well, possibly I have, but not suddenly), I have never been seriously injured, my memory is moderately okay (short-term not fantastic, but that could well be unrelated), I have no learning difficulties and medication controls most of my seizures as long as I don’t place myself in consistently stressful environments. I would go so far as to say that 90-95% of the time I am perfectly fine.

Maybe that’s why I am so frustrated. Epilepsy merely brushes my life, and it manages to have a huge knock-on effect, from employment to visiting family to my day to day life. When I then think about how other people have to manage, I get cross that for many people, the condition is completely off the radar. it was for me, too, until I got the diagnosis. Like most people, I’d heard of it, I knew that it involved seizures, and I’d read the epilepsy warnings in my computer game manuals, but other than that…so what? Now that I know more, I can’t believe how ignorant I used to be, and why more isn’t done to dispel the myths and misconceptions.

In this age of interconnectedness, when people are highly acclaimed for not very much, it seems a shame that all that awareness can’t somehow be shifted over to things which could change or save lives, or improve them at the least. When I was first diagnosed, a lot of my then colleagues were wary of me, and sceptical. One of the first aid-trained staff told me that a fellow co-worker had said they thought I was faking it. goodness only knows why they thought I would sabotage my job so effectively, but perhaps they wouldn’t have if the had known more about it. A lot of people I meet assume I’ve had it since birth, and are surprised when I say I was diagnosed at 19. That was a preconception I’d never even thought of, but it seems to be common, despite many types of epilepsy occurring later in life, either for reasons as yet medically unknown (as is the case with me) or due to head trauma or brain tumours.

After a lot of rambling, I realise that none of this little rant really does much to raise awareness. I wore purple today, and dressed M in a purple top too, but failed to really do much other than write a facebook status, tweet, and scrawl a post here. Is it enough? No. Is it better than nothing? I hope so. Will I do better next year? I certainly hope so. Watch this space. Or better yet, look here, and see what you can do to raise awareness too, this year and next. Because it is only when everyone gets involved that epilepsy will stop being that “flashing lights thing” which many people perceive it to be.

Impotence

It is incredibly frustrating to feel powerless. I know, compared to a lot of people in the world I am incredibly empowered indeed, but there are still times when I feel that control over everything slips away and I am helpless – particularly when I am having a seizure, but also when small reminders crop up in my day-to-day life, letting me know how much I depend upon other people. 


For example, last night W and I were both very tired W more so that myself, and really didn’t want to have to give O and M their bath. Obviously we had to. But as we debated the possibility of bathing them this morning, I spontaneously suggested to W “Oh, well why don’t I do it, and you can have a break,” before I remembered that, no I couldn’t. 


Honestly, it sounds petty – even to me after a sleep and with M asleep on my arm, but at the time I just felt briefly crushed. W was knackered, but I couldn’t offer to bathe our children so he could rest for a few minutes because it would be so unsafe. Likewise, despite having held a full driving license at one stage, there is now no chance of me driving, even when family emergencies occur and public transport is not up to the job, even when there is a car sat outside of the building in that I physically could drive, a taxi has to be paid for because I can no longer drive. 


It’s something which has been hanging over me a little for the last few days; how even simple things become that much more complex when dependence on others has to be factored in. W wanted to help his father sort through their garden the other day, and suggested that W’s mother watch O and left me with just M as a bit of a break (M is still somewhat clingy, and anyway is still breastfed). But he was going to be gone all day, and I’ve been going through a patch of having seizures all or most days, so of course I had to come too, and well, no one relaxes as well at their in-laws’ as they do at home. As much as I like W’s parents, I still feel that I have to be polite when I am in their house. Plus, when I’m at home, half the time I don’t bother with a top and just wear my dressing gown and trousers, because it makes feeding M easier. And that is quite clearly out of the question when not at home. 


I know that some of these issues will be resolved with time. O and M will eventually be old enough to be safe if I am alone with them and have a seizure, even if it is a lengthy one. When O and M are safe in the bath, it won’t matter if I bathe them alone – they would be able to hang tight and call for W if anything happened. 


I guess it’s just the principle that bugs me really. Most of the time I am perfectly capable of doing these things. I can and do wash O and M when they are in the bath, just as I dry them, dress them, talk and play with them and hold O’s hand as we walk along the road (he tethered securely to my wrist as a precaution). But because of the unpredictable nature of my health, because of that chance at any time that I could have a seizure, I can’t do any of those things by myself and feel confident. Most of the time I’m okay with that. It’s something you get accustomed to, and I know when it is safe to maybe take what can be considered a risk, and walk round the corner to a shop with O by myself (again, always tethered to my wrist; I’m not daft). It’s just that, every now and then, human nature catches up with me and I get caught out feeling sorry for myself. I make that most despised of errors – compare my lot with other people – and I find myself envying some people very much indeed.