Tis the Season…

…Of birthdays. Three out of my four-person household have birthdays this month, and numerous family members (and friends) have either had their turn in March or are awaiting it in May. It sure is a hectic few months.

It also means many shopping trips and family visits, which throws my (vague) routine completely. I hate it when that happens. I have a really lousy short-term memory (I remain unsure as to whether this is epilepsy related or just genetic as no one has ever really looked into it; I guess they consider the seizures a bigger issue) so anything which changes the few things I regularly do without fail can make me a little tense at times. I’m not talking about having lunch half an hour later, or things like that, but staying with relatives overnight, or letting O do so more than once a fortnight can be enough. If things really start changing around, I usually end up forgetting my tablets at least once. Hmm, maybe I should get my memory checked out…

Anyway. This happened a few days ago now, so it’s essentially old news, but it’s still a bit of a big deal for me. W, M and I were grabbing baby bits before an overnight stay with W’s parents. We were in Boots, last shop on the list, when I started feeling peculiar. I can’t remember now whether or not we had paid for things yet, but W saw me standing staring vaguely off into space clutching at the bags I was carrying, and got me to a chair.

I get very…distracted? Confused? Disoriented? None of those word really matches how I actually feel when I have a seizure, but they’ll have to do, I guess. It’s like trying to describe a specific colour or a smell. How can you do it unless the other person has experienced something like it already? I often fall down on my intoxicated analogy, but that only really goes so far because I don’t drink often, and have only been anything more than tipsy once or twice, so my knowledge of drunkenness is second-hand anyway. (Not to mention the everyone being different thing about alcohol.) Anyway. The point is, this is essentially my brain warning me something is up, but I’m usually too busy staring at everything and nothing and trying to remember that thing I should be doing, oh, what was it, I know I was thinking it just a moment ago, it was, it was…oh crap, I appear to be having a seizure.

W was just explaining to the nearby cashier that I have epilepsy and it is “known” that I have seizures, so it isn’t something to panic over (and actually, she was remarkably calm and matter-of-fact about it, which was a nice change) when I pitched forwards and they had to lunge and grab me to stop me cracking my head on the floor. (I have done that before, and let me tell you, it really hurts.) While I was down there, my eyes were flickering around a lot (they roll a lot during some seizures and do nothing at all in others) so I couldn’t really see, but I could hear him talking to staff who were talking about how long the seizures usually lasted and whether they would need to call an ambulance. (At this point I groaned inwardly. I hate seizures in public far, far more than those at home for this reason alone.) Surprisingly, however, they actually listened to W when he told them it wasn’t necessary as this fitted the pattern of my “usual” seizures, and I would be alright. Someone even thoughtfully provided a head rest for me – a pack of nappies, which was actually a lot nicer than the floor .(I found out afterwards it had been a random passerby, which makes the act that much nicer. He had just brought them over to cushion my head, then carried on where he was going before.)

By the time I came round fully, the first aider had arrived and was talking to W, and they both helped me back into the chair. The first aider fetched me a cup of water, and M was put back in her pram (W had taken her out while I was on the ground, and then draped one of her blankets over my midriff to keep me warm). I wasn’t exactly back to normal, but I was certainly well enough to walk home, which we did straight away (the  staff were relieved to hear that we live only a few minutes’ walk from the town centre).

After giving M a quick feed, I went for a lie down, and actually zonked out for three quarters of an hour. That certainly brought me back to normal.

So, why have I bothered detailing such a generic seizure? Nothing bad happened, right? Well, it was yet another wake up call, and it’s made both W and I even more wary of me being with O or M by myself. But also, as awful as this sounds, I was actually happy after that seizure. Not happy happy, I mean that, but almost every time I have had a seizure in public someone has phoned an ambulance, and that starts a cascade which usually results in me coming round from the seizure either as they arrive (rarely), as they load me on board (less rarely) or en route to the hospital (most commonly). In each of these scenarios they are still duty bound to take me to A&E, who then have to check me over and then discharge me, which takes ages because I am quite obviously not a priority case. Usually I am at least a little sleepy following a seizure, so I don’t exactly look back to normal either. (But, drowsy or not, I am still well enough to go straight home.) I would never complain about the treatment I receive, because although I know from past experience that I am fine, they do not (and it’s best not to take chances when there is a diagnosis of epilepsy because it is a serious condition, and while I might be okay, many other people may really need medical intervention). However, it does take a large chunk out of mine and the NHS’s time, and I do usually end up feeling like a fraud, sat on a hospital bed in A&E when I know that I am perfectly fine.

I do have a point, buried in here somewhere. I would never advocate a blanket policy of not calling an ambulance if you encounter someone having a seizure. No no no. There are times when, absolutely, someone is having a seizure, they’ve injured themselves or it’s been going on way too long, or you look for an epilepsy card/medical jewellery and there isn’t one (which means they may not be epileptic, in which case this may be unprecedented, or from other causes and really needs checking out), and an ambulance is the right call.

But, on the other hand, more than one in every hundred and fifty people have epilepsy of some form. It isn’t as rare as you would think, because that actually isn’t that large a number. Towns have populations in the thousands. Cities in the millions. If you encounter someone having a seizure, if they have epilepsy, chances are they will be carrying a card stating this, or wearing a medical bracelet/necklace. That will tell you whether or not an ambulance is needed. I have a card which I always carry in my bag. I think I should probably laminate it, stamp a hole in it and stick it on the outside sometimes, because no one ever thinks to look. Most of the time – if W isn’t there, at least – people see me on the floor and pretty much the first response is “Oh, we should probably call an ambulance”. It gets pretty sad when I have a seizure and I am genuinely happy because I didn’t end up hospitalised.

Oh bother. This has turned into another rant. Never mind. At least I got to make a point in the middle. Seriously, most people who have serious conditions carry information about it on their persons somewhere. I have had… many, many seizures while out and about, and no one has ever looked for the card which I have carried around with me since I was diagnosed. Fine if someone looked but they couldn’t find it (I do probably need to find it a more prominent pocket) but no one even looks.

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Epilepsy Nurse

It’s days like today that I realise how lucky I am to be living where I do. I have access to an epilepsy nurse specialist who I see approximately every six weeks (I did get a little lost in the system recently and not see her fro some time, but mostly it is that often). When I was first diagnosed, I just accepted this access as normal, especially since there are so few neurologists nationally, (the waiting times can be over six months) and they can take the pressure off these consultants so well. But as it turns out, not everyone has access as good as mine, which I find quite ridiculous, given how common (and complicated) epilepsy is, and the necessity for freqent medical consultation that many with epilepsy need in order to balance medication and maintain control over seizures. For example, today my epilepsy nurse and I discussed lowering the amount of medication I am taking, to reduce any possible side effects (ironically enough, one of the potential side effects listed on some anti-epileptic drugs – AEDs, as they are often abbreviated to – is convulsions). If I had to wait for a neurologist to approve each and every change, I could be years doing this. Literally. I last saw my neurologist in November, and I am scheduled for my next appointment in, wait for it, April.

That’s a 17 month gap between my appointments, admittedly because my specific neurologist has apparently gone on long term sick leave, but still, the point stands. A medical professional once told me that here in the UK we have about 30% of the neurologists we really need, because the “speciality” is so vast and has so many different areas to cover. A typical neurologist can be called on to diagnose epilepsy, treat patients with brain tumors, those with persistant pain or migraines, parkinsons patients; anything involving the brain really, which is a huge area. Most tend to specialise somewhat in one particular area, which means that when you see a neurologist, you might not be seeing one who has much of an intrest in your condition. I know that my neurologist didn’t actually know all that much about epilepsy (for his profession at least, he still obviously knows enough to be competant).

I had another seizure today, too. Just before going in for my appointment as it happens, which was almost a good thing. It was still bad that I had a seizure (and rather annoying, too), but at least with my epilepsy nurse there, no one panicked and started calling ambulances or anything like that. I’m lucky in that I have never seriously injured myself during a seizure, although lots of people do. The worst I’ve ever done is a toss up between knocking my head rather hard and scratching my face enough to leave marks for a few hours. So for me, calling an ambulance just leads to a lot of fuss and bother, a cannula being plumbed into my arm, a needless trip to A&E, and then the hassle of trying to get home again when I come round enough to convince the nurses I’m actually fine. If you ever see someone having a fit, check to see if they have a medical bracelet or necklace. Unless a fit has been going on for more than five minutes, or they’ve stopped breathing, in most cases you don’t actually need to call for help. Just make sure they don’t hit their head and, if possible, put them in the recovery position. Oh, and never put anything in their mouth. Ever. You can’t swallow  your tongue during a fit, but you can choke on things that people put in your mouth.