Ripple Effect

Yesterday, I was supposed to have my second CBT appointment; the first one in which I would be receiving active help, rather than going over my medical history. Unfortunately, it was cancelled, and even more unfortunately, because I was getting a lift there with W’s dad, we had stayed at their house, and weren’t at home to get the call telling me that it was cancelled, meaning I found out about 20 minutes before I was due to see him, a short while after I’d arrived at the hospital. I also had a fairly serious seizure an hour or so after we got back, which I’m assuming was related.

It was frustrating, certainly, but these things happen. I would assume it was down to the specialist being ill, and it certainly wasn’t the fault of his secretary that I wasn’t at home, and that my mobile is shortly to be consigned to the bin for not picking up her second attempt to get hold of me (damned thing).

However, it did leave me in something of a worry. Maybe it’s silly – very probably it’s silly, in fact – but I can’t help wondering how long this absence will go on for, and whether I’ll actually get to have my rescheduled appointment in a couple of weeks. After all, this isn’t the first time I’ve had appointments cancelled. Or even the second. We’re getting on for double digits here. I haven’t seen an epilepsy specialist in over a year now – and no, I haven’t been forgotten; I got a letter a few weeks ago explaining she was still unwell, and I would be notified when she returned to work. (How helpful to all the people in the rather large section of the county she covers.)

Absences happen. It’s a fact of life. The fact that I seem have encountered a whole sequence of these in the last few years is most likely some sort of miserable coincidence, too. But part of me can’t help wondering if it is in part the enormous workload these specialists face. My neurologists see patients with problems ranging from tumours and trauma to epilepsy, Parkinson’s disease and dementia. Their workload is immense, and there are too few of them. My first epilepsy nurse told me we in the UK have about 30% of the neurologists that are really needed for everyone to have appropriate access. Now, that’s an old anecdote now, but I would imagine there are still far too few. Neurology is a wide field, and they are expected to both specialise in one area, and give appropriate advice to the full range of patients their department sees.

Likewise, Epilepsy Nurses must fill the gap for patients with epilepsy, which is, after all, the most common neurological condition in the UK. I don’t know how many patients are currently waiting on the books of each epilepsy nurse in the country, but I would expect the number to be substantial. How many people can keep up that kind of workload forever? My epilepsy nurse would always go over time with her patients. It meant that if you had an appointment at the end of the day, you could go in an hour to so after the appointment was supposed to start, but it also meant that she worked past the time she should have been going home, pretty much every day. And she happily gave patients an email address to contact her if they had a problem. She also covered four or five major towns in a week; a different one each day.

According to my latest specialist, non-epileptic seizures are more common that epileptic ones. They are harder to control, too. How large is his workload? Is it so strange that I worry about him going sick long-term too, when this is the enormous burden of patients that people such as himself have to work with every day? Admittedly, my health condition is related to stress, so I’m possibly not the best person to say this, but honestly? That kind of pressure is something I couldn’t even conceive of coping with. Isn’t it time that neurology got more attention and funding?

Eye of calm

I’ve taken a few days to let what shall henceforth be known as That Letter sit in my mind and stew. I’m pretty sure I can dissect it without frothing over now, although I’m not making any promises.

Let’s face it, although bland, the letter didn’t start out that badly. A few generic sympathies, where, to be honest, any greater attempt at sincerity would have fallen flat. Clearly Paul Burstow doesn’t know me from Adam, and pretending he did would have come off as false. I’m fine with the whole thing, up until this point:

In the past there was inconsistency around the country in the provision of services for epilepsy, which compromised the quality of treatment and reduced the options available to people living with epilepsy. That is why we need to improve commissioning, and clinical commissioning groups (CCGs) can help us involve patients much more in how local services are shaped. 

Our plans for the modernisation of healthcare services centre on a more localised NHS, with the NHS and CCGs working with patient groups, and making decisions based on a clear understanding of local need.  

Now, clearly, the two paragraphs are not intended to contradict each other, but I can’t help feeling that they do. Saying that inconsistencies should be a thing of the past, and then in the very next paragraph saying that “modernisation” will lead to a “localised NHS” strikes me as a bit… well, a bit stupid if I’m honest. I’ve yet to come across an organisation in which a focus on localisation hasn’t led to inconsistencies.

At best, it will mean centres for epilepsy care dotted about the country where there are clusters of people with the condition. At worst, it would mean that more rural areas with low overall populations (and therefore more sporadic or scattered patients with epilepsy) will find that there is poor local access, because it isn’t “needed” locally. Let’s face it, the funds here aren’t unlimited. You don’t move to an area, tick a box which says “Yup, I need this care here now, please” and then it pops up magically out of thin air. Localised care works for some things. if you have an urban area with higher rates of violent crime, it makes sense to have, say, specialist surgeons who are adept at dealing with knife or bullet wounds, and more counsellors who can deal with the PTSD that often results in being attacked.

But epilepsy isn’t handy and localised like that. It’s random, and it can crop up anywhere, in anyone. Which means that, wherever in the country you are, there’s likely to be someone, somewhere nearby, who needs that specialist care. “Localisation” becomes about as relevant as only supplying midwives “where they’re needed” (and I’m not going to get started on that one).

I’ll skip over the part about the Epilepsy and Related Conditions Bill for now. It’s not that I don’t care about those points, but that’s a whole damn blog in itself. For now, I want to focus on the NHS aspect, since it was my main point.

Anyway, next up we have this lovely section:

Regarding Epilepsy Specialist Nurses (ESNs), the National Institute for Health and Clinical Excellence (NICE) has published guidelines that state: 

ESNs should be an integral part of the network of care of individuals with epilepsy. The key roles of ESNs are to support both epilepsy specialists and generalists, to ensure access to community and multi-agency services and to provide information, training and support to the individual, families, carers and, in the case of children, others involved in the child’s education, welfare and well-being.

However, local NHS organisations are responsible for the skill mix of their workforce, including provision of specialist nurses. They are best placed to assess the health needs of their local community and must have the freedom to deploy staff in ways appropriate to the local conditions. 

If Ms Hill wishes to raise concerns about the lack of SENs in her area, along with her concerns about waiting times for specialist appointments, I would recommend that she contacts the [Local Heathcare Trust].

Now, this can be taken one of several ways, although most of them are simply different flavours of “Not my problem”. Essentially, the point being made here is that it is up to the Local NHS trusts to follow NICE guidelines, and not the central government. Well, guess what. They don’t follow the guidelines – the fact that I got a letter the other day telling me my ‘ESN’ is still on long term sick leave so sorry, no appointment tells me that there is no real funding to provide adequate cover. And there never will be, until central government steps up to the plate and gives them an incentive. The local trust isn’t made of money – they’ve all just had their budgets cut, essentially – so anywhere that corners can be cut, they will be. None of them are about to start spending money in the hope that it will result in long-term savings.

And as I said, what “local conditions”? It’s not like all the people with epilepsy are happily living together in one tidy little town somewhere! This isn’t a condition associated with any particular geographical or socio-economic conditions. It can affect anyone. So there are people with epilepsy up and down the country. And, by extension, there should be adequate epilepsy care everywhere, too.

Claiming that this is a local issue is, frankly, bullshit. I don’t like swearing in my blog, but frankly there’s no other word for it. I know from talking with other people around the country who have epilepsy that the provision in my HCT is better than average. It still doesn’t meet NICE guidelines. One epilepsy nurse to cover a third of the county? No wonder she’s ill.

At the end of the day, the Government probably isn’t going to do anything to improve epilepsy care. Not because they can’t, or because there are no workable suggestions that they could implement, nor because fiscal motivation is lacking (it would cost a heck of a lot less if everyone with epilepsy or a related condition had control over it and didn’t need to keep using ambulances at approximately £150 a pop, and could also work instead of needing to claim benefits). No, the point of my lovely long letter was to explain to me that actually, the government wouldn’t be doing anything to help because it didn’t match up to their “vision” for the NHS. Because, you know what, getting appropriate healthcare means we actually need the NHS to be run as a national institution, with equal access to services everywhere, and darling, that’s so not their thing.

Well thanks for that…

I got a somewhat long letter today, forwarded to me by my MP. It’s from Paul Burstow, about my letter regarding epilepsy care. Interestingly, she declined to comment on its contents, saying they ‘spoke for themselves’. I’ll see if you agree. Apologies in advance for what will be a long post…

Dear My local MP,
Thank you for your letter of 28 October to Andrew Lansley enclosing correspondence from your constituent J. Hill of address about epilepsy services. I am replying as the Minister responsible for policy on long-term conditions. 

I was sorry to read of Ms Hill’s condition, and I can understand her interest in seeing improved services for people with epilepsy.  

We know that there are historic weaknesses in the commissioning of services, to which the epilepsy charities and stakeholders have drawn attention in recent reports, correspondence and Parliamentary Questions.  

As Ms Hill is aware, the urgency for change is all the greater because these failures carry huge costs, as well has having a massive impact on the lives of people with epilepsy.  

There are also potentially very significant savings from unplanned emergency admissions to be made by getting this right, which go hand-in-hand with improvements in outcomes, including life expectancy and a reduction in the number of tragic sudden deaths from epilepsy.  

In the past there was inconsistency around the country in the provision of services for epilepsy, which compromised the quality of treatment and reduced the options available to people living with epilepsy. That is why we need to improve commissioning, and clinical commissioning groups (CCGs) can help us involve patients much more in how local services are shaped. 

Our plans for the modernisation of healthcare services centre on a more localised NHS, with the NHS and CCGs working with patient groups, and making decisions based on a clear understanding of local need.  

To commission effectively, CCGs must understand the needs of patients with epilepsy, their families and carers. To do so, they need the support and expertise of patient groups to inform and advise them. Epilepsy charities have worked to highlight failings and raise concerns about the education needs of children with epilepsy.  

With specific redard to the Epilepsy and Related Conditions Bill, the principles behind it are at odds with the focus on outcomes and devolution of decision making at the heart of the Government’s reforms. it envisages an old-style command-and-control mechanism that directs every locality to commission specific services in very specific ways. However, our stated aim is to support, empower and trust professionals, such as teachers, to do what they do best, rather than prescribe or dictate from the centre.  

The proposal to make epilepsy a Special Educational Need (SEN) would also undermine the Government’s Green Paper response to an Oftstead report that highlighted misidentification of SENs. It would also suggest a particular response by schools to children’s impariments at a time when the Government is emphasising that schools should be freed to use their professional exzpertise to respond to children’s needs in a way that they feel is best.  

The proposals in the Epilepsy and Related Conditions Bill would promote a ‘medical model’ of SENs, with the implication that children would need a medical diagnosis to access a specific package of support rather than looking at each individual child, the particular nature of their difficulties and their edcuational need and social context before deciding on the support they need.  

Regarding Epilepsy Specialist Nurses (ESNs), the National Institute for Health and Clinical Excellence (NICE) has published guidelines that state: 

ESNs should be an integral part of the network of care of individuals with epilepsy. The key roles of ESNs are to support both epilepsy specialists and generalists, to ensure access to community and multi-agency services and to provide information, training and support to the individual, families, carers and, in the case of children, others involved in the child’s education, welfare and well-being.

However, local NHS organisations are responsible for the skill mix of their workforce, including provision of specialist nurses. They are best placed to assess the health needs of their local community and must have the freedom to deploy staff in ways appropriate to the local conditions. 

If Ms Hill wishes to raise concerns about the lack of SENs in her area, along with her concerns about waiting times for specialist appointments, I would recommend that she contacts the [Local Heathcare Trust] The contact details are:  

[Contact details and paragraph informing me about PALS and appropriate contact details for them] 

I appreciate that this reply may be disappointing, but I would like to assure Ms Hill that the Government is wholly commited to improving the lives of those with epilepsy and of those who look after them. 

Yours sincerely
Paul Burstow.

So there you have it. I’d like to keep my opinions and response to this for another entry (this one is long enough already), but feel free to share yours in the comments below.

2.5 Seizures and Counting.

I feel tense now, as though I have been wound tight. I can feel the itchy, fidgety sensation across my shoulders and down my spine; on the backs of my arms and calves; across my brow. I’m on a hair trigger, waiting for the seizure to out or dissipate. Hopefully sleep will do the latter to it.

The worst part is the waiting. Knowing that it’s coming, that it’s only a matter of time and there’s nothing anyone can do about it. Day after day, it’s always there, and it makes everything worse. I tense up because I am scared I’ll have a seizure, and the seizures come because I am tense. Now that I’ve entered this spiral where seizures are happening every day it’s just feeding itself.

I’m too exhausted, both physically and mentally, to do much about it. My neurology appointment isn’t until September, and my appointment with the epilepsy nurse has been cancelled until further notice. No one can help me until they can see me, and what I really need – more tests – are long waiting lists away even then. There is no overnight fix, just a long, dim corridor that has the hope of brightening again some day.

After my second seizure today, I had planned to call my local branch of PALS and see if there was anything they could do.  But there isn’t, surely? They can’t magic an appointment out of thin air, and they can’t make my epilepsy go away. Sure, they could help me complain and I could get a nice letter of apology for being so sincerely screwed over by the lack of epilepsy care in the UK, but how does that help me and my family? How does it help when I’m lying on the floor, twitching and shaking all over, and when my son comes over and pronounces solemnly that I shouldn’t sleep on the floor but on the sofa. (He was corrected, at which point he said: “You don’t have seizures on the floor, you should have them on the sofa!” Fair point, O. Fair point. It’s a lot more comfortable to be sure.)

I shouldn’t feel trapped in my own home by epilepsy. W shouldn’t feel constantly exhausted and worried because he cares for me 24/7, constantly on the watch for odd behaviour that could be a warning sign. O and M shouldn’t have to have a mother who vanishes for parts of the day and is barely fit for purpose at others. I have moments where I just want to scream with frustration. But screaming doesn’t help either. And when I calm down, I just remind myself that it could be worse. After all, I’ve never severely injured myself during a seizure. I’m not in pain. As a nurse said to me before my gall bladder operation, apart from the epilepsy I’m in remarkably good health.

It makes you wonder just how badly the people who aren’t as fit as me are being let down.

The Day Off…

Well, yesterday W and I had our “day off” – his parents had O and M to stay overnight. W’s dad picked them up at around 10am. I was both happy and sad. Happy because we had the house to ourselves, and sad because I missed them both, and because I was worried that M would scream constantly and have to be brought back early.

I had planned to go over to the house of a friend of my mum’s, who is helping me make my wedding dress because I’m an idiot – the last time I sewed anything significant I was fifteen. Maybe fourteen. And that was a t-shirt. In essence, I need all the help I can get because I have a tendency to jump in at the deep end with things. In the end, to save a little time, she came to me, and we made the most of the empty house to cut out the panels for the bodice on the living room floor. It took a while longer than it perhaps should have because I was somewhat terrified by the fact that I had chosen a fabric that had been discontinued, so if I screwed up there wouldn’t be enough to finish. Again, I know: idiot. Words cannot express how stupid I can be at times, and picking a fabric I would barely have enough of to make my first major garment which happens to be my wedding dress is up there with the daftest things I’ve ever attempted. Still, later projects will be a breeze by comparison, eh?

Anyway. That wasn’t actually the point of this post. After cutting out the fabric, deciding “to hell with it” with my plans to tidy, and spending the rest of the afternoon wandering around town and marking the panels of my bodice with what felt like hundreds of fiddly little tacking knots to match them together properly, W and I decided to go out to the pub, and then get something nice for dinner. Only, the second part didn’t end up happening, because while we were sat in the pub trying to decide on a place to go, I suddenly had a burning need to get home. For once I actually realised in time that I was going to have a seizure at some imminent point.

So of course we walked, fairly briskly, back home, and I robotically removed my shoes and slumped onto the sofa. Sure enough, I had a seizure – fortunately not a long one. But afterwards, when I felt the sensation of “weird” leaving me in about as much time as it takes to count to, say, five, I realised that I felt a lot better – more relaxed, and content – than I had all afternoon. I’d started feeling stressed while working on my dress, but hadn’t made that connection, probably because I never realise until after it’s over. It made me think though.

So many time I’ll find myself getting worked up over trivial things (which I was with the dress), and just get on with it, wondering later what I was so worried about. Or I’ll soldier on despite feeling dog tired, or cold, or hot, or tense, or lethargic. So much of my time I seem to be battling to focus on what I should be doing, because there’s this background hum of something being not right. If even half of the time that’s resulting from seizure activity, that’s one heck of a lot more seizures than I’ve been tallying.

Oh, and I got a letter yesterday telling me that the epilepsy nurse is still sick, and all of her clinics have been cancelled until further notice. Perfect timing. Did I commit some atrocity in a past life or something, or pick up the bad-luck lurgy? Because it just seems right now that every time I take a step forward, something pushes me back again. Right when I really need my specialists the most, they are all falling ill. And while the irony of that isn’t lost on me, I really would like to see someone who can help me not have seizures all the freaking time. Preferably before I die of old age.

Musing

Well, I’m going to stop taking the Clonazepam. Goodbye short, annoying venture into new-drugs territory. Hopefully when I get to see the Epilepsy Nurse on the 9th August she’ll be able to give me some more advice.

I guess it’s frustrating me quite a lot, because I did all the right things, and it still went wrong. I have a problem with my high seizure frequency, I pulled out all the stops trying to get a solution – and I got given one! – but it didn’t work, and now, here I am, back to square one.

Still, on the bright side, at least it’s one more thing I can jot down on the list of “things not to give me if you want me to be well”. Surely one of the epilepsy drugs out there has got to work, right? And by trying them all, I can only be closer to finding the one that does? Please?

Well, touching wood doesn’t work then…

There are some days when I feel I am doing really well. I don’t think it would be fair to call today one of them, if I’m honest. I’ve had two seizures today – one of them a lot worse than my usual ones these days – and it’s kind of stained what should be a special day for M; her first birthday.

The first one wasn’t so bad. Well, I didn’t make it upstairs, so I had the seizure on the floor, but really I just felt rather… other for a few minutes, and then came back to normal. My eyes were really flickering, and I had a weird urge to roll around on the floor, which I managed not to do (thank goodness) as I was alert enough to bear in mind my wounds, but when it was over the recovery period wasn’t that long.
We opened presents and cards, O got a bit distressed by all the attention not being on him (in fairness, he’s never had a younger sibling’s birthday before), W’s parents arrived and we had lunch, did the cake… and then I felt weird. W had been saying about an hour previously that the way I was acting, he thought  I was going to have a seizure, but I brushed it off as an overreaction because I honestly felt fine, and didn’t (as I usually do) get all defensive and deny it wildly. Mostly, if W points out that he thinks I’m gonig to have a seizure, I start second guessing and worry that I will, or I do nowadays, at any rate. This time though, I think I had actually rolled my eyes, and dismissed it out of hand because I felt fine. 
So, when I sat in the chair, arms and legs twitching (and the remaining nub of conscious me panicking that I was going to rip my incisions open), with eyes rolling, teeth bared and tongue making clucking sounds, you will understand why I was rather shocked. My belly button really ached afterwards (I think I wrenched the whole area a little), and when I came round I couldn’t speak at first, and I was shattered. I had to go upstairs, still feeling more than a little woozy, and I pretty much instantly fell asleep. I slept for about half an hour, apparently, and came back downstairs just in time to say goodbye to W’s parents. Cue guilt.
So, at about half four this afternoon I rang the GP and epilepsy nurse, and talked over my options. I won’t get to see my epilepsy nurse until August at the earliest as she’s still sick (it figures) but I have asked for the nurse who covers the neighbouring part of Kent to give me a call on Monday because I need to speak to someone. And my GP has offered to write an email to a neurologist to try and get some advice on possible medications I could try so I don’t have to wait until my appointment in September. Still, it doesn’t change the frustration I have that there’s nothing I can do right now to help myself. I just have to sit tight and hold on. Hopefully someone will have an answer for me, because I’m at a point now where my seizures are worse than they’ve been since I started taking the Keppra four years ago. The most frustrating thing of all is that I can’t work out what has happened to make things change so dramatically.
Right. I’m not going to sit here and stew on this. If I don’t stop now I’ll sit and tie myself up in knots trying to think of triggers or patterns. Focus on the good – ongoing celebrations of M’s birthday. I’ll be damned if this is going to overshadow that.  

The New Normal

So. It would seem that, for the time being at least, my seizures are going to happen almost every day. I have actually had two seizures today. One first thing this morning, and another this afternoon. Unfortunately I didn’t get to see the epilepsy nurse today as she was ill, but I should be getting another appointment in the post. Well, it fits the pattern, I guess.

Well, that’s a little unfair. I phoned my GP today on the advice of Epilepsy Action, and to my amazement, he was able to book me an appointment at my local hospital for September. You know, the same hospital which told me that there were “no clinics”. And he was apologetic for it being so far off. He looked for sooner appointments at hospitals further afield, but alas, the wait seems to be the same wherever I go. To be honest, I was actually quite impressed with how soon I’ll be seen. The deferral letters I had been getting had been putting me off for six months at a time. I feel a bit of a tit now for not having kicked up a stink earlier.

I have also been promised a prescription for some new Anti Epileptic Drugs to try and reduce the seizures, with an appointment in a couple of weeks to see how I’m getting along. I may defer starting those until after my operation though. I don’t think that I should be introducing new active chemicals to my bloodstream if I’m about to go under the knife.

All in all, things are looking…different. I wouldn’t go so far as to say they’re looking “up”, but at least they aren’t worse. Time will tell on whether these new meds are going to do anything, but until then (or if they don’t), things are quite stressful. Planning to accommodate an all but expected seizure every day is very different to having contingencies set up just in case. I can feel myself already slipping back into the old fear I had when I was waiting for my diagnosis, when I spent an entire summer more or less indoors because I was scared to go out. That summer I developed an almost unhealthy addiction to a particular online multiplayer game, and I really don’t want that to happen again (even though its sequel is now perfectly timing its sort-of-imminent release).

See, I’m still cheerful really. I can always tell how badly something is affecting me long-term by how I feel after talking/writing about it for ten to twenty minutes. If I’m still in a good mood by the time I finish, then the chances are that it’s a passing low. It’s not the end of the world unless I stop joking and laughing.

Actually, I think it’s one of those few times where my utterly catastrophic short term memory comes in handy. I live so much in the present tense that it’s hard for me to focus on the crap things that are happening if something else distracts me. The minute I spot an interesting book, or fire up the web browser or start chatting to someone, off my mind goes, flitting around and forgetting what it was I was so mopey about. I always remember again in the end, but at least it means I’m away with the fairies enough to not get permanently down. (The major downside to this is that I normally forget to do pretty much everything that isn’t right in front of me. I have to keep my medication out on the worktop or I forget to take it.)

Twofer

Well, I had two seizures today. The first was one of the worst I’ve had in ages, complete with thrashing, breathing problems and general loopiness in spades. I also managed to shake my head a little silly and scratch my arm quite a bit when, for reasons unknown, I started repeatedly removing an absent t-shirt in a slight frenzy. I scraped at my bare shoulder about four or five times I think.

The second seizure was comparatively mild, though I banged my head on the sofa. I had another strange behaviour moment immediately beforehand though, because I wrapped myself in O’s blanket and lay down on the floor like a fluffy sausage roll. I’m sure it made sense at the time. Oh, wait, no. Even then a small part of me was thinking “What the hell?” At least the second one was short.

Still, it would appear that I’ve been having a mild cluster – I’ve had quite a few in the last couple of weeks. Frustratingly, the Epilepsy Nurse’s secretary has been on holiday this week, so my polite phone call asking whether I had fallen off the list has thus far gone unanswered. And, of course, it’s a bank holiday on Monday, so I have to wait until Tuesday to try again. Hopefully when I do get through I won’t have too long a wait. I haven’t seen her since before Christmas, and there is, understandably, a lot I need to talk to her about. And yes, I am aware I should probably have made one or two enquiries as to what the heck’s going on before now. The trouble lies with my abysmal short-term memory. It has taken me this long to remember to call at a point in the day when someone was likely to answer the phone. Usually I remember when I’m out and about or it’s late at night, and then I forget again before I manage to call. Hopeless, that’s me.

Not the End of the World.

There are times when I forget I even have epilepsy. Some mornings I wake up, feed M, raise eyebrows at O’s hijinks, and before I know it, 10am rolls around and I forget to take my tablets, because I’ve forgotten I need to.

Of course, usually, the next time I enter the kitchen I remember again, and take them only an hour or so late. Sometimes I forget them altogether, which is not so good. Anyway. That’s a sidetrack. The point is, I go about life, for the most part, as though I am… well, “normal” I guess, inasmuch as the word has ever meant anything to me. (I was always the odd one at school, so being abnormal isn’t really new for me. I’m just abnormal in a different way now.) When I have a good week, it’s actually quite easy for me to forget all about the seizures. If I think about it at all it’s to feel somewhat guilty, as though I’m a fraud.

Then there are days like today, when I suddenly remember that, yes. I do have epilepsy, and no, I’m not a fraud. Usually it isn’t even the big seizures that hit it home – the circumstances which inevitably surround them wind up becoming so surreal at times I handwave it as a kind of waking dream sequence. No, it’s the small seizures which drive home the message. Today I had two of them. One of them was more like a bad aura, with mental grogginess and slight confusion, and was probably dissociative. It fitted that pattern, anyway. The second was epilepsy. I mean, I can never be sure, given that I wasn’t wired up, but I felt… beyond weird. It was the same feeling I used to get before I started taking my AEDs (Anti-Epileptic Drugs).

First of all, I folded up. Then my eyes were rolling, and I couldn’t get my lungs to operate on a regular basis. One moment I felt as though I couldn’t lift my ribs up and out, the next I was taking a great big breath, and then a series of smaller ones – totally all over the place. A real mess. Finally, I had tiny little pulses of muscle activity in my hands and calves. Not enough to be thrashing about, but like someone was prodding me all over my legs, and that bed of muscles at the base of my thumbs was twitching. Normally, if I have a dissociative seizure, I might thrash or feel unable to move, but it’s definitely my brain, somewhere, far off, laying down instructions. There’s a little part of me saying “Come on, snap out of it and get up. The room will stop spinning eventually…” This, on the other hand, felt like it must feel in medical experiments where they touch parts of you with those little electrodes to stimulate random muscle groups. You’ve seen them on documentaries about the body, I expect.

It wasn’t scary. At no point did I think “this is the end” or worry that I would hurt myself. But, in a small, specific way, the actions of my body were completely out of my control, and as daft as this sounds, that doesn’t happen very often. I usually manage to convince my self that I could override the seizure if I was stronger, even though that’s patently ridiculous. Most of the time, I have some idea of what’s coming next – I can feel my body working its way up to convulsions, or slowing gradually to the point where my breathing is so shallow that not everyone notices it. This was sudden; shockingly so. I felt at the time that this was a significant seizure, and I think I know why, having thought about it a little more.

The other day I had been wondering just how effective my medication is, and how much it was really helping. The last time anyone adjusted the dosage I take was more than three years ago. The last time I saw my epilepsy nurse was six months ago (I’m in the process of finding out why I haven’t heard anything from her in so long. I expect I’ve fallen off the system again). She’d floated the idea then of reducing my dosage and seeing how I got on, as that would be the only way of knowing what the current baseline state of my seizures is. I mean, some people stop having seizures after a while. Maybe I’d be a lucky one who has grown out of the epilepsy, but I’d never know all the time I put the lack of seizures down to the medication. The seizure today was a pretty effective reminder that no, I’m not going to grow out of this any time soon.

I haven’t been helped by well-meaning relatives, all certain I’ll be just fine in a few years, and it will go away. One older relative keeps quoting a random comment by a doctor when I was in hospital visiting someone, that I would grow out of it and be fine by the time I was twenty three. Well, I’m twenty four now. And let me see… Nope. Still have epilepsy. I guess on the spot diagnosis with no medical history is harder than that. And a bit unprofessional. But is has all contributed to give me a vague sense that, hey, it’s okay, give it a few years and it’ll all turn out dandy. Somehow.

No. It hasn’t. And, no, it won’t. I’m not going to wake up one morning and magically be “normal”. Most of the time, this either doesn’t occur to me, or is so blatant that I just accept it and move on. Every now and then, the message sinks a little deeper, prompted by seemingly unrelated things that are happening to people around me – like W talking about getting his driving license soon. Today, that all came together, and I felt a little barb of self pity, along with my seizure. I have epilepsy. Mostly I’m okay. But I will in all probability never drive again. The other day O turned to me and said that he didn’t want me to have seizures any more. And today, for a few minutes, I felt like someone else had hijacked my body. I’m not hurting. Not really. But that barb does sting.