Sunday 28 November 2010

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.

Tuesday 23 November 2010

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.

Friday 19 November 2010

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.

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.

Wednesday 27 October 2010

Epilepsy - it's complicated.

So, I had another seizure this evening. This one was probably non-epileptic in origin. W timed it, and it was approximately six minutes long. I couldn't quite believe it when he said that; it seemed much shorter to me. But then, my sense of time goes right out of the window when I'm having a seizure. Sometimes it seems like no time at all, while during others the seconds drag by in a slow procession.

I haven't mentioned the "non-epileptic seizures" (dissociative seizures is a better term, but there apparently is no hard and fast term yet) here before. It's rather complicated, and of course the inevitable accusations of fakery arise in some people's minds. My epilepsy nurse and the diagnosing neurologist seemed pretty convinced I do have epilepsy though, and one of my EEG (electroencephalogram) readings showed spike and wave activity, which is (again, I feel I ought to say "apparently"; I am not a nerologist!) indicative of epilepsy. Unfortunately for me, life got complicated (don't you hate it when that happens?) and I seem to have mix of both epileptic and dissociative seizures, which are rather hard to separate at times.

What does this mean? Well, for one, my AEDs (anti-epileptic drugs) will only actually stop the epileptic fits. Hence my talking to the epilepsy nurse about lowering the amount I take, as the only way to tell if I'm taking more than I need is to reduce my prescription and see how it goes. Fortunately I appear to be in a position where any bad reactions (such as more seizures) will just be an inconvenience and not serious. Wow, I never thought I'd be glad to be unemployed. (Though I would be on maternity leave right now even if I wasn't.)

Ultimately, no one is entirely sure what causes dissociative seizures, though often trauma in childhood can be a factor. Things like abuse or neglect have apparently shown a correlation, though fortunately neither of these apply to myself. "Trauma" of course covers a wide scope, including the pysical kind such as major accidents, so it's possible that some sort of trauma, be it psychological or physical, has caused me to have these. Not knowing for certain, I prefer not to jump onto that bandwagon of speculation. I do know that stress tends to bring my seizures on, which is possibly why working full time has become a problem for me. Having two young children doesn't bring them on as often as you would expect though, so who knows. I'd love to have more EEGs (despite the fact that the electrodes are stuck to your head with a waxy paste which takes ages to wash out of your hair), and try to sort out what's what, but unfortunately, they're rather expensive, and who knows how long I'd have to be plumbed in before they had a record of every seizure type I've experienced to analyse. It's just not going to happen, and I'm lucky to have had as good an amount of medical attention as I have.

Since I started having seizures (I'm not entirely sure when that was; in hindsight I may have been ignoring what were actually partial seizures for years), they have generally manifested themselves in one of three ways (as there are over 40 types of epilepsy, that isn't as large a variety as you might think). First, there are the aforementioned myoclonic jerks, my "twitches". These are the ones which the EEG picked up associated brain activity for. Then I have fairly brief (as in, up to a few minutes), convulsive seizures, where movement usually focues in my left hand and/or right leg, and I do occasionally thrash around a bit. These could be either; the rhythmic motions my hand and leg make could well be part of a complex partial seizure (one where only part of the brain is having unusual electrical activity), or they could not. The third type are my longest seizures (and the most likely to be dissociative), which have gone on for up to and over an hour before now. They involve long periods of stillness (where I appear to be asleep) mixed with convulsive bursts. I've injured myself a good few times having the latter two of these types, mostly through hitting my head or a limb, but occasionally from scratching my own face. In my seizure today I began fiercely rubbing my eye, enough to make it quite sore.

Only on a very few occasions have I come close to losing consciousness during a seizure (as my awareness is so impaired I can never really tell whether I have or not), which of course makes my seizures harder to explain to those who know only the stereotypes. I have also had to explain to kind but misguided people before now that no, flashing lights/computer games don't bother me, and it's actually quite a small proportion of people with epilepsy who are affected in this way. For a relatively common condition, there is a huge lack of awareness out there about just what epilepsy is.

Tuesday 26 October 2010

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.

Sunday 24 October 2010

Seizures and Auras

Had another seizure yesterday. Honestly, this is turning into more of an online seizure diary than anything else. It's depressing. I mean, I knew when I started that I wanted to communicate the challenges of balancing epilepsy with my role as a mother, but this is utterly ridiculous. In the last few days I have gone from having a seizure once a fortnight or so to a cluster of three in four days. To be perfectly blunt, I can put this particular cluster down to only one thing. Money worries. Great.

I had an aura before this seizure, which makes the world of difference, I can tell you. I knew something was wrong, but the sensation is actually harder to describe in words than the seizure itself. Still, I'll try, because auras, when they occur, are a significant aspect of epilepsy. It can be the difference between safety and a serious injury.

So, for me, an aura can take several forms, which don't really have a bearing on the type or duration of the seizure (which may or may not follow - sometimes I get an aura and then no seizure, which is both a relief and somewhat frustrating). Sometimes, I suddenly feel very tired, or depressed. These are the easiest for me to miss, despite being obvious enough in their effect, because sometimes I feel either of those things anyway. I have two small children, so tiredness is something I am very familiar with, and the nature of feeling down or depressed is not to question it very much, or start to analyse why you feel that way. This means that, quite often, I don't recognise my auras for what they are until after the seizure they forewarn.

The auras I can recognise usually take a form which is far more ambiguous, and much harder to describe, which is quite frustrating when neurologists and other doctors ask me about my epilepsy. The best I have come up with so far is to say that they are a sensation that something is "wrong". It's a tingle in the centre of my back which both is and isn't there, and a nagging sensation in my mind, either that I should be elsewhere doing something very important, or that I've just been saying something and can't remember what it is. Oddly, I've had the occasional sensation of something being "all wrong" as I used to call it, long before I started having seizures. Or perhaps not. There are lots of warning signs of the type of epilepsy I was diagnosed with which only really make sense as warnings after a diagnosis, because they can also just be typical of humanity. Things like daydreaming, for example.

As it happens, daydreaming can also be an aura for me, although I never realise it, for obvious reasons. This is one which W notices rather than me, and to give him credit, he often knows when I am going to have a seizure before I do, and is able to tell me to sit down, now.

Yesterday's seizure was fairly convulsive, and throughout I was breathing very shallowly, enough that W thought I had stopped altogether once or twice, and nudged me very hard in the ribs to make sure I was okay. (This is an arangement we have agreed upon between us, as it does usually seem to kickstart my lungs if they freeze up, and obviously you should never do this to someone while they are having a fit as you could injure them. If you encounter someone having a fit and they stop breathing, definitely call an ambulance.)

Today has been better. No seizures, no auras. Clusters always worry me, but I'm going to try and calm down, because in the end, they usually calm down and settle back to "normal", and really, I just have to take each day as it comes. On a more bittersweet note, my son has now learned the word "seizure".

Thursday 21 October 2010

Two in a Row

Seizures don't normally depress me. I've mostly accepted them as a fact of life; just infreqent enough to not  impede my day-to-day life when they aren't happening, although often enough to have a constant long term effect.

They get a little more frustrating when, instead of occuring once or twice a fortnight, as they have been, I get one two days in a row. At least this time I had an aura, and was able to alert W before it happened. Not to mention getting myself somewhere safe.

It was jam packed with muscle spasms and periods of rigidity, and there was a point where I don't think I blinked for a solid minute or so, but other than that, not so bad. It's just the implications which worry me really. This has come a little bit out of the blue from a period where they've almost been predicatable. Still, that's life I guess.

It possibly doesn't help that I've been stressing about finances a little. Maybe I should try and put that to the back of my head. The trouble is, although some would advise me to bury my head in the sand and let ignorance be bliss, I would far rather have warning of what's coming than only find out when the letter drops through my door. That, and if there's something I can realistically do to attempt to change it, I would like to have the chance.

Benefit Cuts.

Honestly, I don't know what to make of all the cuts in the welfare budget yet. So much of it is subject to speculation, or relies upon medical assessments that have not yet been rolled out.

What I do know, however, is that I have no security for the future. The next few years rely on a wing and a prayer, and the hope that some arbitrary figure will not decide that I am no longer disabled because I don't look it, or because the government can no longer afford for me to be.

What is "disabled", anyway? I don't feel it, most of the time, but whenever I fall to the ground involuntarily, and start twitching and shaking, or stop breathing, my opinion changes pretty rapidly. I guess not being able to look after your own children alone is pretty disabled. I'm certainly disabled enough to not be permitted a driving license, too, and nor can I go skydiving, abseiling, rock-climbing, scuba diving, or anything else which requires you to be alert at all times.

My son is two years old and I have never bathed him without supervision. I won't be able to until he is able to look after himself, and the same goes for his little sister. I will never drive my children to their friends' houses, or take them swimming by myself, because it's unsafe. I can't even have a bath myself unless someone else (preferabbly W) is in the house with me.

That's not to say I don't take risks. Just that, to me, taking a risk is leaving the house by myself, and being alone for an hour or two.

I've gone a little off-topic here, but maybe that's because the whole subject is off-topic. Yes, we all know that (to a greater or lesser degree depending on who you talk to) the UK is in serious financial difficulty. But taking money from the poor and needy, who have so little to give, while failing to adequately chase those who try to duck out of paying their fair share is equally off-topic. I know you can't always trust what you read, and subjectivity abounds when politics rears its ugly head, but when huge companies avoid paying several billions in tax from year to year and are allowed to get away with it, it seems to me that you're missing the boat. If that figure of £6 billion which Vodaphone alone is reported to have avoided paying is correct, then the money taken from the sick need not have been cut at all.

Wednesday 20 October 2010

Brain Malfunction

Today I had a seizure.

It's been a bit of a while I guess (a good couple of weeks), so maybe I should have seen it coming, but when it hit, it came completely out of the blue. One minute I was fine, happily playing with my two young children, the next - flump.

Every seizure is different. Some are short, violent affairs; others long, slow minutes of paralysis; still more are unpleasant mixtures of the two. This time, sat propped afainst the sofa, my head fell back and my eyes closed, as my body slumped. my son, O, came over and said "Mummy, wake up," a few times, clambering on and off my lap while he tried to get me to play with him (he is two), while my daughter, M, sat in her bouncy chair, unaware of what was going on, as far as I know. She is three months old.

I'm not sure how long it was before my partner (and carer) W noticed. Perhaps a minute or so. The seconds blur and merge with minutes in my memory while I'm fitting, sometimes shrinking, sometimes stretching out and doubling or tripling the percieved time I am 'out'. W rushed over, of course, and made sure our children were safe. This is why he cannot work - although 99% of the time I am fit and healthy, that remaining 1% when I am a hazard to myself and them could come at any time. Ironically, I would be safer at work, though no one wants to hire me.

My eyes opened at some point, after I slumped forwards and hit my head on the floor, but before W was able to lie me on my side.They screamed for me to blink, but until that particular spasm passed remained open, unfocused and staring straight ahead into W's body. It is disconcerting to be able to see but not choose where your eyes are directed. Much as it is disconcerting to watch and feel your body doing things you have no wish for it to do, such as tremor, spasm and jerk violently.

Now I remember. Before W was able to lay me on the floor, my right arm curled up and over my shoulder, straining to contort in peculiar shapes. I remember this because it was stretched to its limit, pulling on my joints to bend further. My eyes also rolled, and mercifully closed, and I think my son tried to climb on me again, because something pressed down on my legs. W was shouting at him to mind out of the way, at any rate, in between reminding me to breathe. This time I was able to comply. On other occasions I was not, and had to be nudged, hard, in the ribs.

My arms and legs continued to spasm for some time, and M began to cry. She was hungry; wanting milk. She would have to wait for a few more minutes, for although the seizure was reaching its end, I was still unable to respond other than by briefly squeezing the hand W put into mine. First my body stilled and went limp, then, gradually, normal brain function resumed. Speech came after movement, this time. Sometimes it's the other way round.

Finally, head aching, I felt able to lift myself and sit on the sofa. After another minute or two I was back to normal, and able to hoik up my top to feed M. At least the accompanying tiredness which follows my seizures is something I'm used to as a parent anyway. Before I made it up there, O had given me a cuddle and told me he loved me, happy now that Mummy was back to normal. W told me that this time M looked concerned while it happened. I don't think I've had one while she's been awake before, so that's not surprising I guess.

So now? Now I get back to the business of looking after two children, jot down the date, and mark it as 365 days before I can start the process of reclaiming my driving license (as the timer resets each time I have a seizure, I don't expect to reach this goal any more). I'll chalk it up to the epilepsy which has more or less defined my life since I was nineteen.

Then I'll wonder in the back of my mind how long the countdown to the next seizure will last.