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.

Out of the Frying Pan...

...And into the writing trial by fire!

Honestly, for someone affected very negatively by stress, on the face of things I don't make life easier for myself. No sooner is the wedding stress out of the way than I pitch face first into a writing marathon.

Still, it's not going badly so far. And, although several people who I've told about the annual creativity drive that is National Novel Writing Month, or NaNoWriMo, have told me that I'm crazy, or it sounds impossibly hard to write 50,000 words in 30 days, I actually find it rather theraputic.


That's not to say the seizures have stopped. No, they're still plodding along at more or less one a day. Mind you, I'd put that more down to the nice little health Questionnaire that ATOS sent me a few weeks ago to make sure I'm not a fraud, and the rather daunting prospect of changing my name in goodness knows how many places (I haven't even started that task yet) or the great big wodge of a form that I have to fill out for my CBT. (Honestly, the thing would work equally well as a draught excluder. And while I know all the questions are important, filling them out has been killing my hand!)

Oh, and did I tell you I finally got a response from my MP? I wrote to her, way back in August, and apparently in September she replied. Only, somehow I only got the letter in November. Despite the fact that her office is around the corner from me, so it would only ever have to go via the local sorting office, which is, oh, let's say a ten-minute walk away? I'll be charitable and say it got lost in the post, or someone accidentally dropped it down the side of a desk or something, because she did say that she'd written to both the head of the local health care trust and Andrew Lansley, asking the former why local access to specialists was so poor, and the latter how he plans to address the "provision for epilepsy patients more generally". So, not too shabby. It may not actually achieve anything, but it's better than nothing.

And so, to round off a much-longer-than-I-expected post, here is a picture of me in wedding attire, because I've read that people who read blogs like such things:

...Well, it was the only

 one of just me.

Married life, and other things.

To be honest, it's pretty much identical to life before, except that now I have a stack of Thank You cards to write, and a lot of paperwork to fill out to change my surname. I guess that's a slightly contentious issue to some people these days, and while I don't personally feel it's a choice I have to defend, I seem to have found myself explaining it a few times over the last few weeks. Several people have asked whether I would or not. At the end of the day, it boils down to the fact that I want the same surname as O and M for convenience. I personally think that most double-barrel names get clunky in the end; what if O or M wanted to double-barrel their name again - would they then have the awkward task of choosing a name to drop? I worry too much about that sort of thing, although I quite like the sound of other people's longer surnames.

Anyway. So, for me, the double-barrel option was out. Asking W to change his name was something I didn't even consider, mostly because it would sound ridiculous. Honestly, you'll have to trust me on this one. So that left me with changing my surname, which suits me just fine - my new surname is nice, and flows just as well with my name. Plus, I get to keep "Hill" for writing purposes, which I always knew I wanted to anyway. Essentially, I get the best of both worlds.

Still. That's not my sole, trivial point for the day. I still haven't had an appointment for Dr. Neuropsychology, although I might not get one - I had a letter today saying I might simply be referred for CBT. (More on that another time.) I'm still having seizures fairly frequently, although thankfully not several times a day. The wedding was clearly a big source of stress, which is obviously  over, but I am still not in a position where anyone is going to want me working for them. If this is my baseline, and I know that working increases the number of seizures I have, that's a non-starter. Three or four times a week at least is no good for people, especially just for a part-time employee.

I've also had a nice fat form from ATOS in the post, for me to fill out and prove I'm still ill. What joy. I must admit, when I first opened the letter and saw who it was from, my heart skipped a beat. ATOS do not have a good name among people who claim benefits relating to ill health and disability, predominantly because they appear to be skewed in the favour of slashing the number of awards, rather than assessing people fairly. I don't really have the energy to explain the whole debate here, but I will point you in the direction of blog outlining some of the more serious concerns. It's an interesting read, although the topic is certainly worth researching for yourself, because it affects one heck of a lot of vulnerable people across the country, and a long-term illness or disability could affect anyone you know, or even your future self.

I try not to get too emotive and biased about things any more, because I don't think that kind of argument ever really resolves anything - it just descends into "sob stories" that people dismiss as individual cases or overly subjective. But I do and will continue to encourage people to look at these issues more closely than they otherwise might. Very rarely is the overview of a situation as accurate as the full picture, and very rarely, in my opinion at least, is the story presented on the news and in the papers anything other than an overview, often one which is slanted to give weight to a particular point of view.

Self-Doubt

I've had some time to think about my appointment with the neurologist now, and to be honest, I'm more confused than ever. I went into the appointment somewhat resigned to having new tablets lined up in front of me, and I walked out with a completely different answer.

I knew before that not all of my seizures were caused by epilepsy, and hey, I can cope with that, even if every doctor ever seems to give me a different explanation for the phenomenon, and a different name. So far the one common label I've been handed (amongst a myriad of differing descriptors) is "dissociative seizures", so I'll stick with it for now, although I have no idea if that gives the condition I have a name at all. The impression I got the other week was that this whole aspect is a dawning revelation to the medical profession, having arrived only in the last few years. I've yet to brave google with any real seriousness and try to find out much more than a basic descriptor.

I guess the trouble I have with the latest prognosis - and I'd like to stress that it is a minor trouble - is how this will affect the way other people view me. At the moment, I still have the "epilepsy" tag hovering around me - that first EEG had its pesky unusual activity associated with a myoclonic jerk (the one seizure type which has pretty much stopped since I started taking Keppra). For that reason, the neurologist doesn't want me to stop taking the tablets yet, even though I am probably taking far more than is necessary to stop what I used to call my "twitches". But I walked away (stupidly, really; I was caught up in the excitement that I might, at last, have an "answer") without actually knowing what is "wrong" with me any more. Do I really have epilepsy? Don't I? Am I just suffering from a dramatic reaction to stress? I should have asked her to clarify what this would mean about my current diagnosis. Was I misdiagnosed? Or was the emphasis just in the wrong place? Where do I stand now?

None of it makes me feel particularly good about myself at the moment. I mean, I guess I'm reasonably sure I actually do have epilepsy, because my notes mention an EEG picking up "spike and wave" activity, which my epilepsy nurse told me was very typical of an epileptic myoclonic jerk. So the good news, I guess you could say, is that it's looking increasingly as though the epilepsy side is pretty darn well controlled. The bad news, of course, is that what's left is looking unlikely to have a simple solution such as the right medication. As long as it might have taken to find the right combination of drugs, that hope was there. Dealing with something that is entirely psychological is different, and far less predictable. My life isn't exactly short on stress, so I've got my work cut out for me.

The other thing which worries me is the perception of it. Epilepsy is misunderstood, but telling someone I have seizures which are not even identifiable as that? I've had people accuse me of "faking it" before, as though I'm some masochist who enjoys injuring myself and sabotaging my hopes of having a stable job. As awful as epilepsy is, at least it's a known and medically (if not casually) understood thing. Now I'm looking at something which is altogether more tenuous and indistinct, with its causes and mechanics still not fully understood. Suddenly I feel even more vulnerable. This seems to have all the disadvantages of epilepsy - involuntary seizures, no driving, massive, regular interruptions to my lifestyle - but with none of the explanations that can help me, and those around me, really understand it. It's not a recognised anything it seems. There's now a hugely irrational part of me wondering: "What if everyone just tells me to chin up and stop mucking about? What if they don't believe me when I say I can't help it?"

I think I really need to see this specialist. Next time, I'm going in with a checklist, and I'm going to come out armed with as much information as I can muster. I can't live with all these maybes hovering around me. I just want to know what's wrong, and what I can do to try and "fix" myself.

Why I want people to Take Epilepsy ACTION

Well, I do have news, but I'm afraid it's going to take a back seat to the main thrust of this post. You see, today, Epilepsy Action launch a new campaign - Take Epilepsy ACTION - to promote awareness about the different types of seizure that exist, and what first aid is appropriate.

This is, obviously, something that is very important to me. Epilepsy Action commissioned a YouGov survey which showed that almost 9/10 people would not know the correct thing to do if they saw someone having a seizure. A significant portion of people would actually do something which could potentially harm the very person they were trying to help.

Now, given that Epilepsy is one of the most common neurological conditions in the world, that's a pretty shocking statistic. It's about time that the correct information was widely know, as people with epilepsy have had to face public misunderstanding and discrimination for a very long time.

The link above goes to the main campaign page for the Take Epilepsy ACTION page, and contains a short video demonstrating the correct first aid procedure, as well as how you can help. But I want to repost here the ACTION message to remember if you see someone having a tonic-clonic seizure (where the person is unconscious and convulses - the "typical" seizure):

A	Assess Assess the situation – are they in danger of injuring themselves? Remove any nearby objects that could cause injury
C	CushionCushion their head (with a jumper, for example) to protect them from head injury
T	Time Check the time – if the seizure lasts longer than five minutes you should call an ambulance
I	IdentityLook for a medical bracelet or ID card – it may give you information about the person’s seizures and what to do
O	OverOnce the seizure is over, put them on their side (in the recovery position). Stay with them and reassure them as they come round
N	NeverNever restrain the person, put something in their mouth or try to give them food or drink

Remember ACTION, and call an ambulance if you have reason to believe this is the person's first seizure (if you cannot find an ID/Medical card or jewellery, if the person has a second seizure without recovering from the first, or if the person is injured. 

Now, on to my news. I had my neurologist's appointment yesterday, (finally!) and it has certainly given me food for thought. She thinks that the seizures I am having at the moment are all non-epileptiform attacks - in other words, they are all the dissociative seizures. This is because I have had video telemetry showing that I do have this form of attack, and the majority of EEG tests I have had show this pattern. In other words, all the drugs in the world aren't going to fix my current problems.

I'm still not entirely sure how I feel about all this. I haven't been told that I don't have epilepsy - the first EEG I had did show unusual activity, and she has told me to carry on taking my medication for now. But it looks more and more like the Keppra is taking control of the epileptic seizures, and what I am left with are the dissociative ones, which are caused by, surprise surprise, stress. I've been referred to a different specialist, and will probably be referred again for some CBT.

I do feel a little up in the air about it all. While I am happy to go with the neurologist's opinion, especially as there is some evidence to back it up and there's a chance of "fixing" the problem a little, I'm not entirely convinced that all the seizures I'm having are dissociative. Many of them, yes, do fit that pattern. My non-convulsive seizures are all rather similar to each other, and these are the type that was captured on the video telemetry and recognised as dissociative. But I have never had one of my (much) more convulsive seizures while wired up to an EEG, so I'm left in limbo wondering which category they fall into. I guess time will tell. If the CBT doesn't stop them, then I'll know it's more likely they are epileptic. Still, they are certainly the least common of my seizures now, so I don't think they're the priority at the moment.

Darn.

Well, I lasted two days this time. (There is hope yet, yes?) No seizures yesterday or the day before. I did have a couple of auras, but they didn't develop into anything, and while I would normally count them, things are bad enough at the moment that auras have slipped off the radar. I'll count them more when I don't have the beggars  three or four times a day. I'd spend my life writing them down otherwise!

 I did have a weird occurrence this morning though. I almost fainted - collapsed in fact, but didn't black out. it was over almost as soon as it started, but I honestly have no idea what it was. It didn't feel much like a seizure, but then, what else could it be? I was very tired though, and had a lot of trouble getting to sleep last night. It could have been that I guess.

The tiredness is also probably what caused the seizure I had this afternoon. O had just thrown a whopper of a tantrum and I had successfully calmed him down by carrying him up to his room (hooray, it worked for once!). We were just discussing colour, and how it all works - there was a great deal of oversimplification and anthropomorphising on my part, but whatever it takes, right? Anyway. Sidetracking. I felt crap, and sent him down to W while I went and weirded out on the bed for a while.

I also made the mock-up of my skirt today. Now I just need to come up with some sort of waistband, take it in at the appropriate points, and cut out the actual material. Hooray! Still, with only 28 days do go, I should blooming well hope I am making progress.

...Still more worried about having a seizure and ruining the day for W than about the actual wedding itself. I guess we'll see, won't we. At the end of the day, there's nothing much I can do about it either way. I just keep on taking my tablets, noting the seizures when they happen, and hopefully the neurologist can offer me some hope in  a week or so when I (finally) have my appointment. <insert deadpan laugh here>

Wait, weren't you talking about something completely different?

I have a dreadful memory.

There. It is said. Okay, I've probably said it a few times before, but I think it's time I said it again. I have an absolutely, completely and utterly, awful short term memory. I will often think of something I need to do, walk up the stairs, and have forgotten it by the time I reach the top. I have windows 7 on my computer, and so my desktop background is plastered with notes and reminders for me, and  I still don't remember to do many of the things. Ooh, hold on, I've just remembered I need to phone up for my prescription. Hold on.

Right. Done that. Also got sidetracked and forgot I was writing this blog for about twenty minutes. Honestly, I'm not trying to prove a point here. It just happens.

I've also managed to get less than a month away from the wedding and have made less than half of my dress. I'm hoping it will all magically come together at the last minute (and, in fairness, things often somehow work out that way for me - well, they always did at school, anyway), but the reality is that I am going to have quite a few late nights or long days sat at a sewing machine, and by the time the big day rolls around, I will probably be sick of the thing.

Still, I am getting there, and the obstacles that were holding me up (not having the shoes/supporting undergarments I needed in order to know my exact measurements for the day) are now sorted. I shall, I can exclusively reveal, be wearing ankle boots on my wedding day, on account of the fact I cannot walk in heels.

Also, I didn't have a seizure yesterday! I can now safely cross my fingers and hope that the wedding will be another one of those lovely seizure-free days. W is worried that the stress of the day will be too much for me, and that I'll have a seizure at the reception. While I'm of the opinion that, well, it beats having one in the registry office, I will admit that I'm just a little nervous about it all. I can handle the fact I'm getting married. I can handle standing in front of people and having to say stuff. Heck I can even (just about) handle being the centre of attention for a day. I really don't want to handle a seizure on top of it all. I'm only going to have one wedding day. I don't want epilepsy screwing it up. Please?

Oh yeah, I started by talking about my poor memory. Oops, I kind of segued that post a little, didn't I. See what I mean?

Some things change, and others just stay the same...

This morning, O went to Pre-School. It's not quite as a big a deal as it could be - last term he was going there one morning a week, but this term he will be going four days a week, two of them whole days, so it does represent the start of his life moving ever so slightly out of my control, which is a little scary. (As I type this, M has approached me and hijacked my lap, so I'm not completely bereft yet. And stop whacking the keyboard, you pesky little thing!)

It's been strange this morning, only having the one child to look after again, and knowing that this will be increasingly how things are over the coming weeks. Next year, he will be at school, and the year after that, even M will be gone in increasing amounts. Well, that's a long way off, but I tend to react this way whenever anything changes - I start envisioning further changes and how those changes may cause more changes, and how that will, ultimately, turn my eternal quest for routine on its head again.

Perhaps unsurprisingly, I had a seizure this morning. Well, I had a seizure yesterday, and two on Saturday, so this isn't particularly news, although it's unusual for me to have seizures in the morning. I guess it's probably all that contemplating about change. I have this paradoxical love and hatred of things being different. On the one hand, doing the same damn thing every day and never being spontaneous drives me mad. I hate it. It's dull. On the other hand, too much change, and I can't keep up. I start to forget things more - especially my medication, which then means I have more seizures, which then means that things change again as I have to adapt to the limitations that imposes. For example, this summer I have had more seizures (a lot more) which has meant I haven't been able to take O and M out. This has obviously had the knock on effect of having to entertain them more within the confines of our house, take O along on the occasions where we do go out to stretch his legs and offer some variety, and lean rather more heavily on W's parents and their larger garden to offer him somewhere to run around.

It has made me feel a lot more under pressure, which hasn't helped. I must admit, to a certain extent I have been counting down the days to this just waiting and hoping that it will offer a reprieve for my health. It quite possibly won't - after all, I still have M at home with me, and I still have a wedding in...less than five weeks. Yikes, I should probably get to work on that skirt, shouldn't I. (Actually, I'm remarkably laid back about that, all things considered. I worry W, because I have an unfinished top and no skirt at all, and my opinion on the matter is, "Eh, just chill, I can get it done!")

Anyway. O is back from his first morning of the term now, and says he had a lovely time, just playing with toys and "the other kids". Hmm. He also says he didn't go to the toilet, he "just pretended to wash his hands" and he didn't have a snack or a drink. I think perhaps he is not the most reliable person to ask. Tomorrow my mission will be to find out what he actually gets up to during the day, at least vaguely. While I wouldn't be surprised to find he has told me a whole heap of codswallop about his morning (he is, after all, three years old), it also wouldn't be impossible for him to have slipped through the net on a chaotic first day. He does have a tendency to get so wrapped up in play that he doesn't want to do anything else, and I know that the pre-school have a more free-form attitude to snack time than we do here at home. They have to go and get the snack themselves, and I wouldn't put it past O to have just not bothered, while they might have expected him, as a child who has been before, to know what to do and be more focused on the children who are brand new.

Oh, look, I've found something else to worry about. I think my brain has it in for me. Why can't I take my own advice and just chill?

Waiting Makes Me Think More.

The waiting game is telling on me now. It's so frustrating to go week after week with the same problems, the same hazards to my help, and know that all I can do is sit tight and carry on as I am, waiting for the appointment where I might start to get some help. It's made worse by the fact I don't particularly expect that appointment to change anything overnight for me. Apart from surgery (which isn't an option for me) nothing can change your epilepsy overnight. Certainly not in a good way, at any rate.

What's possibly the most frustrating thing is how my health directly impacts how my whole family lives. Because I cannot work due to my epilepsy, it is also not safe for me to be at home alone with O and M. That means that W cannot work either. Well, okay, he does work. He gets a princely £55 a week for working 24/7 as my carer. Thanks, The Government. That'll keep us going.

We survive because of the welfare state. Housing Benefit, Child Tax Credits, Child Benefits, DLA and ESA, for which I am in the "Limited Capacity to Work" category. Apparently ATOS thinks there is something I can do, and okay, at the time I had the interview there was. It's just that my health has gotten a lot worse since then but I can't face the additional health interviews which would result from me telling them. Likewise, I should probably have informed the department in charge of the DLA, but I figure that not telling them things are worse is better than telling them things are worse, and then having to go through all the hassle again when they fix it and put me back where I was when I started getting DLA in the first place. All that paperwork really stresses me out, and is only likely to make me have more seizures anyway.

So we are stuck. We started renting our house when we were both working and I was pregnant with O. So it's a two-bedroom house, quite small. Now we have M as well, and they will have to share a room soon; M currently has her cot squeezed in next to our bed. Neither situation is ideal. O is a heavy sleeper, but still wakes in the night, and makes noise when he does. M sleeps through, but gets woken by noise and still doesn't settle herself back to sleep. When she wakes, it's for at least half an hour. Nor O's room a good size and shape for two children and their things.

We can't move, either. Now that we receive that nice list of benefits, most of the landlords and agencies around here don't want to know. And I'm not well enough to trawl around them all proving that I'm a nice person really, not one of those nasty "benefit cheats" that everyone knows cheat their landlords and trash houses, while filling them with large televisions. The negative stereotyping everywhere gets me down, frequently.

Still, I refuse to be ashamed of my life. I refuse to hide from the fact that no, I am not working, and yes, W is at home during the day as well, since he is a full-time carer earning a fraction of the minimum wage. Personally, I don't think being ill or disabled is something you should have to be ashamed of. And, given the amount of stress and pressure that W is under, and the absence of any real time off he has, I think people who are carers should be lauded from here to eternity, and not suffer the implication that the people they look after are feckless scroungers.

I find myself defiantly holding my head high. Something completely beyond my control has put me in this position, and I refuse to allow it to beat me. I will get better, however long it takes. I will  find a job somewhere, and I will not let it crush my spirit.

In the Way

I often feel awkward when I know I am going to have a seizure. On the one hand, it's better by far than dropping in the middle of a group of people and having to deal with the possibility I've been flashing people while thrashing about (yes, the convulsive seizures have come back - I still don't get to see anyone until September 24th though). On the other hand, usually what happens is that W tells me to go and lie down while I still can, and I stagger up the stairs and then lie on my bed feeling sheepish, sheepish, and then just a bit more sheepish before the seizure kicks in and I get a bit preoccupied. the biggest emotion I have on coming out of a seizure is usually embarrassment.

This gets worse when my aura deviates from the more conventional "spaced" form. So, for example, yesterday, when I was holding M and suddenly got a fit of the giggles which I couldn't explain. It didn't stop, and between chuckles I told W that it was a bit unusual, whereupon I gave M back and laughed my way up the stairs. I honestly felt fine, apart from everything being hilarious, but obviously I wasn't. People don't just randomly start feeling like they want to chuckle at everything for no good reason.

I made it to the bed, and lay there, sniggering for a minute or two, before I found myself waving my legs and arms in the air, like I was riding an imaginary bicycle. A small part of my brain was working well enough to acknowledge that yes, this was a deeply peculiar thing to do, but by then I could feel myself sinking away into that sort of third-person view I have during a seizure, where I can see or hear what's going on (depending on whether my eyes are open or not), but am not really in charge of it. It got a bit blurry from there, but when I came round, I then had to go back downstairs, knowing full well I had been acting like an utter prat when I left. Obviously I know W understands, but I still feel incredibly self-conscious. I don't like losing control of things, and I don't like embarrassing myself. In fact, I've had to work very hard over the last few years to get past what was essentially a phobia about people and their opinions of me. I used to work myself into a frenzy at the thought I might commit a faux pas, and people I cared about would think less of me, so you can imagine how it felt when  I started having shaking fits and some of my co-workers thought I was making it up.

I have mostly overcome that now, but the last of it lingers as a nagging fear that I am simply in the way when I have a seizure, and that people are just cross with me for it. No matter how many times other people tell me it isn't my fault, I can't quite let go of the nagging fear that people around me are, one day, going to tell me that maybe I should just sit over in the corner where I won't bother anyone any more. I have grown complacent about the fits themselves, and the occasional bump on the head doesn't worry me too much, but what is arguably a trivial fallout from having seizures is, for me, one of the worst aspects of my health; I still fear people judging me for something I am unaware of or unable to control.

6 Bad Places to Have a Seizure

Obviously, there isn't really a "good" place to have a seizure, but some are definitely worse than others. I don't think it is shouted from the rooftops enough just how vulnerable people with uncontrolled epilepsy can be at times, and one of the biggest dangers is having a seizure in a hazardous or unpleasant place. Even some seemingly innocuous locations can have hidden hazards, so I have provided a few of my own bad places to give a flavour. The fact that this fits into a handy "top X of Y" trendwagon is just a happy coincidence.

Please feel free to add any of your own experiences, direct or indirect, in the comments section.

1) An armchair. I know, this one sounds particularly silly, but the fact is, when you have no control over your limbs and you're thrashing around a bit, an armchair really isn't the haven you might think. Just a short while before I wrote this, I had a seizure in an armchair and not only banged my head quite hard on the arm, but then managed to throw myself out onto the floor and hit my head on that, too. Not great.

2) At the shops. First of all, shop floors are cold. They are not at all comfortable. Secondly, if you are at the shops, the chances are that you have shopping, either paid for or awaiting payment, which, even if you don't injure yourself on shelves or other common hazards found in shops, gets complicated when a Concerned Citizen calls an ambulance*.

3) At work. Aside from the potential fallout from your employers (not such a risk if you work for a large or reputable company, but it does still happen sometimes), seizures at work can be really dangerous. In an office, there are desks and electrical items to get tangled with, not to mention swivel chairs, and in non-office work environments, it can get even worse. I used to work in retail and had many a seizure out in the stockroom, surrounded by big, heavy boxes and merchandising displays. Not fun, and that's leaving aside the other, more invisible problem which is co-workers. Again, this is not a universal problem, but I encountered a lot of negative reactions from colleagues when I started having seizures. People basically didn't want to be anywhere near me, because that made them responsible for me if I had a fit. It made life, even in between seizures, very uncomfortable indeed. Few people look at you the same way when they've seen you thrashing around on the floor with your eyes rolling all over the show.

4) The Bathroom. The most apparent danger here is the bath, and general advice for people with epilepsy is either to have showers instead, (preferably) or to constantly make some sort of noise while in the bath to let people know you are okay. Locking the bathroom door is an obvious no. I haven't had a seizure in the bath, but I have had one in the shower, and I can tell you it's not a great experience. I've also had seizures on the bathroom floor, and that too is a cold, unfriendly place. Any water on the floor can be a slipping risk, too.

5) The Kitchen. I shouldn't have to go into too much detail on this one. Kitchens=danger, especially if you have a habit of keeling over or suddenly acting very erratically. Knives and ovens are the obvious hazards, but to be honest, most of the things you find in an ordinary kitchen can be dangerous if you have a seizure. Cupboard handles, crockery, cutlery, pots and pans, all can be fallen on or over. I used to work with ovens, and obviously, that job is now completely out of the question.

6) Stairs. I have had seizures on flights of stairs, and in-between flights of stairs. The fact that I can honestly tell you they are some of the most frightening seizures I'v had is actually a good thing. The thread of consciousness I kept onto stopped me falling down the dratted things. One of them, I locked up going down, and clung to the balustrade for all I was worth. I think I had to be pried off, before I clung to it so hard I fell over the side. The other time, the time I was on the landing, in-between two flights of stairs, I managed to keep pushing myself back from the edge, despite getting ever nearer about three or four times.

So as to not end on a note of doom and gloom, and me nearly falling down concrete stairs, I thought I would point out that while these places are dangerous for people at times, and there are precious few "good" places to have a seizure (I can list "in the middle of a big bed", "during a long-awaited EEG" and "during the flipping ATOS interview" off the top of my head and then pretty much run out), when you've had epilepsy a while, you either get used to working out when a seizure is imminent, or you have a carer who can tell you/keep you safe, or a combination of the two. There are lots of strategies for minimising risks, but while you can (mostly) make your own home pretty safe, being safe when you are out and about often relies on other people, and what they know. If the people around you know what to do, the danger becomes a heck of a lot less.


*My position on people calling an ambulance is, as I have explained before, a complicated one. People with epilepsy often get frustrated with ambulances being called while they are having a seizure, since most of the time there is nothing that the paramedics can actually do, and it costs a lot of time and money being sent to A&E. On the other hand: I would ALWAYS recommend calling an ambulance if you encounter someone having what looks like a seizure and you either: a) can't find a card/medical jewellery saying they have epilepsy; b) think the seizure has gone on for more than 5 minutes, or they have had a second seizure without recovering from the first; c) think they have injured themselves.

Stalling

I've been stuck, the last few weeks, stuck on a repeat loop where nothing ever really improves. Nothing's getting worse, either, but when you get to the point where you're thinking that's a good thing, you know life has taken a fairly rubbish meander. In other words, it sucks.

I'm still cracking on with the things I need to do - wedding planning, house organising (with the help of W - we bough a bookcase for our DVDs the other day which he assembled. When we had got them all in we wondered why we hadn't done it before...), and child rearing. All the "ing"s. All except for "improving".

My seizures are still on average happening once a day, usually afternoon/evening time. I think I went a day without a few days ago, but, really? That's nothing special. A year or so ago I was hoping that someday I might get my driving license back - now it's looking more like a pipe dream with every day that passes.

To get my license back, I would have to go a whole year without seizures, then apply to the DVLA, who would check with my GP and specialists to make sure this is true, and then I'd have to go through the rigamarole of updating my details and getting it back. All without having any seizures at all. Any time I have one, even a "little" one, I go back to day one of my 365 point countdown.

Then, of course, even if I did get it back, I'd have to re-hone my driving skills. It has been six years since I last drove anywhere. Would you trust me behind the wheel? I certainly wouldn't. In the even this happens, I will be getting a couple of driving lessons as a refresher.

Actually, I'm going to stop dwelling on this one. I'm starting to remember how it feels to have the freedom of a car, and it's just making me miss it all the more. I get by well enough with public transport. It will get better when M can walk and we don't need a buggy. And better still when W can drive, assuming we can afford a car. At least we have family nearby who can help us if we really need transport at non-bus-friendly hours.

Who's there?

I have often said that I do not lose consciousness when I have a seizure. I say this because I can remember them afterwards - some clearly, some less so - and because I can respond to things while they are happening, occasionally by talking, but mostly by flexing my fingers a little. Once I even managed to stop myself falling down a flight of stairs.

But, as much as I often find myself thinking "Hello! I'm still here," when people talk over me as I lie prostrate on the floor (usually this is paramedics or the general public. Family and friends know the drill by now it seems), I sometimes wonder who "I" really am at these times. When I am having a seizure, my awareness of what's going on is often really skewed, and my priorities and behaviour is so different that I could almost be someone else entirely.

I've caught myself thinking, before now: "It's all in your head. If you weren't such a failure you'd brush yourself down and move. MOVE, damn it, stop lying there hardly breathing and scaring people." I've dared myself to move an arm, a leg, something. I can feel it there, it's not numb, I should be able to move it. Open your eyes, close them. Stop pretending.

Me having a seizure is certainly angry. Especially since, most of the time, it turns out that actually I can't move, or talk, or get up and say "ha, fooled you!" because, well, I'm having a seizure. And if I can move, it's because I'm having an aura instead, and I'm still a danger to everyone, because I'm completely shot away. I've been known to giggle hysterically for no reason at all until I hyperventilate, or start walking around in circles, or sing loudly and tunelessly. I'm certainly not fit to be looking after children, or crossing roads or shopping in that state.

I had a fairly severe seizure earlier. I'd say it's the worst I've had in...months. Maybe all year. I thrashed around so much that I felt sick. My eyes were open, then closed. I had some control over limbs, then I had none, and by the end I felt exhausted, headachey and nauseous all at the same time. And then, I got this wave of anger, out of nowhere. All of a sudden, I was absolutely nutting furious at... everything. Epilepsy, doctors, people. Life, basically, had shafted me, and I was sick of it. The adrenaline kicked in and I was going to do something. March, write letters, chain myself to railings, that sort of thing.

As my white-hot rage began to subside, plain exhaustion took over, clouding my memories of the seizure so that now, just a couple of hours later all I have left of an hour and a half are a few hazy snatches, a moment thrashing here, a minute or so staring blankly at the ceiling there, my son briefly popping into my field of vision to say goodbye before he departed on his hastily arranged visit to W's parents, and then an unknown period of time lying pretty still and feeling crap. Some of it is put together retrospectively. W says I was shaking violently for about three or four minutes, so I know most of the time was me recovering. I tell myself that, and memories of lying in bed start to reform, growing from stumps to fill in the blanks. My brain has always been fairly good at this - for years I was convinced I attended my grandfather's funeral aged 4 and had to sit in the car the whole time, and it turns out I was actually 200 miles away with my other grandparents. Nonetheless this memory was detailed enough to have me convinced, mainly because I was young enough not to find it odd that I'd be left alone in a car during a funeral in the middle of the Welsh countryside.

I have begun to question that self-loathing which appears during my seizures. Is it a by-product of adrenaline, the fight or flight process trying to kick-start my body into actually doing something? Or is it more complicated than that? (Probably.) When I was first diagnosed, I worked in retail, for a large chain. The company supported me, and took account of what the doctors were saying. HR didn't care, the company was far bigger than me, and there were procedures which took care of everything. As long as I had my doctors notes, there was no problem.

The people who worked in the store with me were another story. Some were sympathetic, and helped me - it was one of my colleagues who was the first to suggest that I may have epilepsy, based on a first aid course she had just completed. But others doubted me, a lot, and gave me the impression that I must be faking. There were a lot of looks which said "Oh, that's convenient for you", and a lot of studiously avoiding me so that if anything happened they wouldn't have to look after me. The early days of my coming to terms with the fact I had epilepsy were also riddled with self-doubt. I was nineteen, still lived with a parent, and had very little confidence. I noticed that I had more seizures at work than at home, so I began to get paranoid that somehow maybe this was all in my head and there was really nothing wrong with me at all. The fact that I had had an EEG which showed brain activity pretty classical of epilepsy bypassed me. I hated myself for ruining my own life.

Eventually I got over it, and realised that no, I was not making it up. After I was signed off sick indefinitely, and was away from those people calling names, I realised that what I was experiencing was bullying, plain and simple, and with the help of W (who I met a few months after being diagnosed) I got some confidence in myself back. But to this day, I sometimes wonder if a legacy of those experiences, of knowing full well that the people around me thought I was attention seeking and making it up, has given me this angry alter ego who just hates me. If it's all the deep fears and insecurities, attacking me at my most vulnerable, grown from the ignorance of those who didn't understand why I was having seizures out of the blue and assumed that I was simply skiving off.

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.

Eek, was that me?

Okay, I'll own up, it was...sort of.

You know that feeling when you've had a bit too much to drink the night before, and you wake up and think "Oh, god, did that really happen?" Well, I've had a moment a little reminiscent of that.

Firstly, the seizure doesn't appear to have done me any harm, although after posting that really quite incoherent blog I did go very out of it for a while, and then slept for over an hour.

Now that I'm sensible again (well, as sensible as I'm ever likely to be) I have wondered what on earth possessed me to lie there, on my side, with the netbook propped open against a pillow, and type my thoughts as I had a bad aura which subsequently turned into an eyes-rolling-limbs-spasming seizure, during which there was a moment where my chest locked up and I couldn't seem to breathe. I can only put it down to the fact that I was more than half out of my mind at the time, and having gone upstairs to lie down, finding the netbook lying in the middle of the bed was all the encouragement I needed. I must remember to stop leaving it anywhere I might find it while having a crazy moment.

Anyway, apologies to anyone I might have freaked out, and to any readers I have already scared off. I'll try not to post something so scatty again. Although, in the cold light of day, it does strike me as a good example of how weird a seizure or aura can make you feel.If you ever see anyone wandering around muttering to themselves, or staggering along like they're about to fall down, please don't automatically assume they've had too much to drink (unless it's closing time, of course!). They could be having a seizure. I'm not saying to go up to people on the street and accost them, but if you see someone clearly acting in a strange way and they look confused and vulnerable, it could be that they need medical help, not shuffling away from. I've had several occasions where I've ended up staggering along a path like I'm falling down drunk when actually I've been about to have a seizure.

What's going on?

I can't work out where my head is right now. I mean, not literally. It's on my shoulders/neck, or lying on a bed, depending on how you look at it, but figuratively, I don't have a sodding clue.

I can't work out what this is. I feel as weird as anything, yet I'm cooly detached from it all - enough that I am correcting my many typoes, at least. This is taking a long time to write, on a slightly tangential note.

I came upstairs because I could not stop drumming my hands on my legs and fidgeting, which made me a hazard because my brain is obviously firing off a little and I'm a loose cannon - who knows when the fit will start. If the fit starts. I might just lie here with my netbook on its side for ten to twenty minutes, feeling like crap but have nothing else happen. Yes. I'm writing while lying on my side. It's very uncomfortable but I don't trust my head to hold itself up and I feel a weird need to document my own brand of crazy that I'm feeling right now.

ONe minute I'm all hyper and fidgety, the next I stare into space for unknown periods of time. I'm alternating between the two a lot as I tpye which is making me lose my train of thought, so sorry if I veer from one topic to another. I'm often a lttle inncoherent anyway, but this might b worse than normal. Sorry.

My shoulder hurts from typing. Why am I doing this again? I thnik I'm carrying on because I started and I can't stop what I start when I'm like this, be it babblying, finger tapping, tongue clicking, or apparently, talking through a keyboard. My brain isa very peculiar place. I'm glad I don't have to live there. Although, I do, sort of. Im confused now. I feel itchy beneath my skin, all down my spine. I think I'll go now. I don't want to beak my netbook and I don't know how long this ebbing core of focus is going to last. Whgen it snaps, I may thrash around a bit. I will edit/promoote later. For now, juist press post, wman. Press it now befre your internal monologue gets any more tedious and unpredictable. Bla bla bla, bye. I may stary singing to faries now. My head spins slowly. I got dizzy lying down yesterday dujring my fit. Did I tell you that O and M didn't go away today after all? I don't feel well.

Achievements

Yesterday's big achievement was not having a seizure.

I had hoped that my this point in my life following epilepsy diagnosis "not having a seizure" wouldn't be such a big deal, but, well, there you go. Life and its curved balls, eh?

Today's achievement will hopefully be to go two days without a seizure. Again, small potatoes here, but after the last few weeks, I'm aiming low while hoping high. Because of course, hopefully this bad run of seizures will need on its own, as ethereally as it began, and hopefully life will continue on its merry way, and I will feel confident going about my daily business without W shadowing me to keep me safe. After all, I have children to raise, books to write, and a wedding to prepare for.

The biggest frustration for me having seizures as often as I do is not a concern that I will suffer long-term, or that I will be injured having a seizure, as it is for W. I'm almost embarrassed to admit how complacent I can be about my seizures at times, because they almost never deviate from their regular pattern of me being debilitated, me coming round enough to merely be groggy, and then me being okay. I've come to terms with the fact that they happen. As much as I acknowledge the concerns that other people have for my health during a seizure, the biggest problem I have with them is how annoyingly time-consuming they are.

When you have a to-do list as long as your arm, taking a time out that ranges from twenty minutes to over an hour is a luxury that you can't afford. Yet that is what having a seizure forces me to do. Sometimes more than once a day, because as well as the seizures I've been having a lot of auras which have been severe enough that I've had to lie down. In the last few days I've had far too much down time, and it's put me a long way behind. And of course, the stress of being behind schedule doesn't help reduce their frequency. It's like being caught in a downward spiral.

I'm clawing my way back up it now. Tomorrow, W's parents have offered to take the children all day and overnight, which takes a lot of pressure off for a while. I can't honestly say I expect to work flat out all day, because I'm human and I know I'll rejoice in the lack of constant responsibility by slacking off. I don't think there's a single parent out there that wouldn't agree. But my list won't be forgotten - if nothing else because it's plastered all over my desktop on virtual post-it notes which I don't get to delete until they are finished. Hopefully that should be enough of a reminder, eh? I'll let you know how it all pans out.

Withdrawl

Well, I am officially not taking Clonazepam any more. On my GP's advice, I have weaned myself off, and tomorrow (Monday) I shall take the remaining tablets back to the pharmacy.

It was a nice try, I suppose, and it could have helped, so it was worthwhile. It's still a little frustrating to be back to square one, especially after all the trouble I went through while taking them (including having a seizure out in public on my own which could have ended rather badly as it happened about twenty seconds after I crossed a busy road), but, with a little hindsight, I know that I run the same risks when I start taking any new medication.

There isn't a cure for epilepsy, and there possibly never will be. There certainly won't be a cure for my kind of epilepsy in my lifetime. All I can really do is to try and stay positive, and not get so worked up on the negative stuff, as I have been doing lately.

Still, it's all very well me saying that. I'm human, I expect to write ranty posts in future expressing my rage and frustration at the world. I'd be a bit creepy if I didn't. I also believe that sometimes it's only by getting angy and taking action that we get anywhere. It wasn't until I got fed up with being fobbed off by the hospital delaying my neurologists appointments indefinitely that I got my appointment in September. It wasn't until I get cross with the Epilepsy Nurse's team that I rang up to work out what was going on and realised I'd been mistakenly dropped off the list. Sometimes, being calm and taking things in your stride is the wrong thing to do.

Still. The important thing is to strike the right balance. I'm not going to let my epilepsy bully me into sitting at home all day, afraid to go out, as I have been these last few weeks. Nor am I going to just say "to hell with it" and start running risks, because that would have serious repercussions for myself and my family. I do think i need to take another look at what I do with my time though. Taking these new drugs and seeing how much worse my life could be (how it was before I started the Keppra, essentially), has made me want to be more productive with my time. I've been wasting a lot of it recently just moping, and that isn't doing anyone any good.

Late Nights

It's one o' clock in the morning. (Thereabouts.) Normally, by this point, I would be asleep.

However, seeing as I'm not, I thought it a good opportunity to continue the musings of earlier, to the relaxing sound of Brahms' Lullaby on repeat (courtesy of YouTube). M won't go to sleep, you see. It's a modern parenting thing, honest...

Anyway. Yes, musing. I think the chief difficulty is that there is so much that I need/want/crave to be foing outside the house at the moment, and 95% of it is on hold because I am still having seizures daily. The one I had earlier involved a lot of what, were I religious, could be described as speaking in tongues. I apparently told W that I itched inside, and wanted to run and run. I probably also told him a great many other ridiculous things, but the running part sticks in my mind.

I had planned to run in the Race for Life this year, until the Gall Bladder episode put an end to that. (Still, next year, eh?) I planned to do a lot of outdoor activities, including buggy walks, taking O and M to the park, walks along the river, that sort of thing. Instead, I am sat here most days, inside a fairly small house, with everywhere and yet nowhere to go.

Leaving the house is like an expedition to the Sinai sometimes. Have I got my bag, yes. Coat? Phone? Am I feeling okay? Keys? Epilepsy card? Am I sure I'm feeling okay? Do I need an umbrella? Have I got the changing bag for O/M if I am taking them? Am I really really sure I'm okay? And I'll only be going straight to that one shop and then home again, right? And I'll have my phone on and in my pocket, and will answer it this time, right? Right? Okay, then out the door, no stress, no pressure, just going for a quick jaunt to one shop and one shop only and then straight home again before I fall down and start telling people the sky is green and pink at the same time. (No, seriously, if you are nuts enough to look at the sky on a clear day for long enough, this optical illusion actually happens. Blame my sixteen-year-old self for being boring and not kissing boys.)

The whole palaver does make me reluctant to go out though. It gets to the point where it's just so much hassle, even for things which are relatively run of the mill, such as taking O and M to parent and toddler groups. Some days I just can't muster the enthusiasm. It's just another day, just another group, and tomorrow I'll be just as incapable of doing things other people take for granted, like being spontaneous.

I bought myself some cheap earrings today, just because I was walking past the shop and there was a sale. I honestly can't remember the last time I was out in town and I just decided to go and buy something like that, and W wasn't there with me, being all manly and not understanding window-shopping at all. It was just a few precious minutes, but it was for me, and it was spontaneous.

I miss that the most, I think.

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?

After a Seizure

Well, I meant to write this one yesterday, but to be honest, my head was a little all over the place for the rest of the day. I seem to spend a lot of time in bed at the moment, having that "coming round" sensation. I'm sure W must be sick of me asking him how long I've been upstairs when I stagger back down in search of tea.

The trouble is, I really hate losing track of time, and I'm not usually in the right state of mind to check a clock or my watch before having a seizure to make it easier for me to calculate later. And a lot of the time, I really want to know how long I was "out". It's a control thing, I think. I have no control over how long I will be having an aura or seizure, or how long it will take me to sleep one off. But I feel as though if I know how long it all took, I can account for that time, and it isn't lost to me. Instead of yesterday being a haze, it becomes something I could plot on a graph. So, from time A-B, I was fine, then C-D I was having a seizure, E marks the time I was sleeping it all off, and suddenly the day makes sense, rather than just being this fog. Suddenly I am in charge again. The fog lifts, and with it the feeling that I am not in charge of my own life.

I don't know why this matters to me to the degree it does - for some seizures I will literally sit down and try and account for it all, blow by blow: "Well, first I fell over, and then my eyes started to roll, and then I felt my arm twitching..." and throughout that my mind adds in "Oh, and at that point I heard W say something to me and I felt him move me", or "And then I heard O talking in the background". I've written accounts of my seizures before in their immediate aftermath in a desperate attempt to claw back the time that I've lost. I will not let the seizure take that memory away, even if the memory is me falling off a chair and really hurting my head, or of going loopy and scratching my face or pulling my hair. Good memories, bad memories, they are all facets of myself, and I lose enough of them as it is. Sometimes I need prompting to remember things, sometimes I don't remember events even after being told, flat out, what happened. Those are the bad times.

I think the problem stems from the fact that I have a pretty good long term memory, but my short term memory is, well, crap. If I can file things neatly away into the long term storage, so much the better. Forgetting things is something that terrifies me. I have notebook after notebook detailing the events in books I am writing, and countless documents stored on my computer, my email account, other people's computers. Data loss is a potent threat to me. Somewhere, hopefully still in a readable condition, I have a folder containing stories I wrote when I was twelve. They all last about a paragraph, and most of them contain...well, nothing of note. But I still wrote them, and I hold onto that chance that I may look back at them and get a spark of inspiration that will spur me on to write a new story, a new character rising from the old. I haven't really gone into the other aspects of my life, but writing is something that I find really important. And it's something else that happens to be mostly centred around the activities of my brain.  So maybe it isn't so strange. After all ,when I write, I am in charge of everything. Nothing happens without my say so. There are no power outages, no short circuits. Everything happens for a reason, and it happens at its allotted time in the plot. I don't have that kind of control in real life any more.

Okay, so no one has that amount of control in real life. But I think the point still stands. I cling to my obsessive desire to know what happened and when because it represents my attempt to have the one thing I lack the most at the moment. Control.

During A Seizure (pardon the rambling, my brain does this to me at times)

Well, more or less. My head isn't exactly screwed on straight at the moement, so please pardon my spelling mistakers and typos . I'm not going to go back and fix because I don;t know how long I have left before this pretty strong aura goes into a "full" seizure and I loose motor control.

My head is pounding, and wallking up to my bedroom and bed (where I am now, so don't worry that I will get hurt) I was very wobbly indeed. I was angry too, but that has passed now and I just feel woozy. But the angry part- that must be expalined. I was out and about with W, taking M for her 1 year jabs. All done, she was fine and hardly cried at all! then we had to get wipes for her and some ceral bars whiich she really likes. W started telling me we needed to go home right away because I was ging to have a seizxure but I felt fine, so I got grumpy and insisted that we ogo got to M&S for cake. I like cake a lot right now.

So we got the food, and some rolls for lunch, and socks for O, and then I started to feel crap, and I got cross with W (Oh wait, I had been cross before) because it just isn't FAIR. There is so much I want or need to do that is out of the house and the way tjhings are right now the only safe place for me is in the house and I just want to get out.  And W keeps teelling me "you'rtregoing to have a seizure" and he's right and I'm not cross at him, I'm cross at what he has to do which is look after me. I don;t want to be looked after. I want to look after myself, and go into town and decide, me, when I am fed up and want to come home and not miss things off my to do list because I am in bed miles away from my head.

That is the angry. But not the tunnell vision is growing again, so if you'll excuse me, I htink I am going to lie down now and let this seizur get itself bloody well over and done with, I meay come tidy this up later. ir not. OR not, that is. My eyesare rolling, it's time to post.

Now can someone see that not all seizures are switch on, switch off?

Papering over the cracks

It's day six of my new medication. Yes, I'm still taking it. W and I had a real think about this last night, and decided that I will continue to take them until Monday, when I shall make an emergency appointment with the GP. This is mostly due to the fact that on the information sheet, one of the first instructions is not to suddenly stop taking the tablets as you may get withdrawal symptoms. I'm not entirely sure whether I have been taking these long enough to qualify for that, but I'm taking no chances.

Not to mention, W and I also discussed the possibility that these symptoms I am having are a passing problem as I adapt to the medication. This is, frankly, becoming an increasingly unlikely scenario as far as I can tell, what with me having had a seizure almost every day since I started taking them.

Either way, I'm still here, still in limbo. Will update when I know what, if anything is happening.

Medication Chaos.

So, I started taking Clonazepam the other day. Hooray, I thought, finally I get to do something positive to help myself.

Well, so far I have had two (perhaps three, my memory is failing me worse than usual at the moment) major seizures, and am experiencing a lot of anxiety, erratic behaviour and cravings for cake, chocolate, sweets, sugar, and food in general. Now, the latter part could be to make up for the energy I am expending having my seizures, which have gone back to being quite violent and forceful, and far longer in duration than they have been.

I have also been much drowsier than usual, and apathetic about a lot of activities which usually would hold my interest. Now, I appreciate that taking a new medication for epilepsy is different to taking a paracetamol. You have to give it a few days or even weeks for it to get properly into your system and have its proper effect. They have a long-term effect, so you can't really expect results overnight. But, so far, I think its safe to say that my reaction to this particular drug has been a somewhat negative one. W agrees, and wants me to stop taking it.

Did I mention hat despite it making me drowsy, I am finding it hard to go to sleep at night? Last night I sat up jotting down ideas for a story because I couldn't switch off when I lay down to go to sleep.

I feel tense, too. Jittery and on edge, and wanting to do things right away if I have to do them at all. I want to lie down under the bedcovers and not come out, but in the same breath I could u on a pair of shoes and go for a walk and not stop and not turn around and as I type I can feel by brain working faster and faster and faster. Hence the long sentences. It is notoriously hard to convey how it feels to have a seizure if you have never experienced it four yourself, and I am finding even harder to convey the sense of duality that I have right now. I find myself being influenced by everything around me - I am very suggestible. My MP3 player is playing music of a slower tempo now, and I can feel myself slowing down slightly - I no longer want to go out and run and run. However, I am aware that if I were to listen to something with a fast tempo I would be sat here drumming my fingers or tapping my feet and gettting irritable and impatient at all the people holding me back from my true potential, which is to walk and walk and not stop going until I fall down and go to sleep, wherever I am by that point.

DOes this convey something of the chaos that mind-altering prescription drugs can have on a person, and how utterly disruptive it is for a person with epilepsy, (or depression, anxiety or any other brain-centric condition for that matter ) to change or amend their medication? Could more people read this, and understand the dread I have right now about both taking and stopping this medication, about telling my doctor who will prescribe more drugs, and about the long, long wait I will inevitably have to get any progress which helps as opposes to hinders me? Because I don't think people do understand to be honest. You say "epilepsy" and people go "Oh, that's seizures, right?" And they assume that either you have seizures a lot, which is bad, or that you "take tablets for it" and magically everything has gotten better.

It doesn't work that way. Here I am. I have epilepsy, I take tablets for it, they don't work very well, and now that they are trying new tablets, they are making me feel a whole lot worse, and a whole lot more nervous about going out of the house, and the prospect of having to carry on each day this way and somehow raise two normal children is, at this precise moment in time, terrifying me. It won't scare me later. I know that, because there is still a core part of me that, for some ridiculous reason, has this unending hope that somehow everything will turn out okay, because it always has in the past. I'm one of life's optimists, I guess. That's probably just as well, if I'm honest. It keeps me going through the bad times, and makes me, frankly, damned irritating when I'm having a good day. Still, W apparently loves me all the same, and he's been giving me lots of hugs in the wake of my seizures. I may update a little erratically for the next few days, depending upon how I feel.

Progress...Sweet progress? (Part 2)

(Part 1)

Well, one pre-school collection, lunch break and seizure later, I was off to pick up my new prescription. It was Clonazepam. And what does it say on the info sheet? "Do not breastfeed while taking Clonazepam." Well, that's just great then.

It's a tricky one. I'm fairly sure my GP would have told the neurologist that I was breastfeeding, as it was something that I made a point of telling him. But I don't know whether he did, and the neurologist decided that it will be okay because I'm taking a low dose; whether he told her, and she didn't notice it in the e-mail, or whether he simply forgot to mention it because the focus of his message was my high seizure frequency and the fact I won't be able to see a specialist for quite a while.

The info sheet states flatly that you should not breast feed while taking Clonazepam, but there is information about the drug online which says you should talk to your prescriber before taking in those circumstances. So, it could be any of the above scenarios, and I just don't know which. Given that I had another seizure today, it has put me in a bit of a fix.

Given that communicating with the neurologist would probably take a few days, my next step was calling the helpline that Epilepsy Action run. As ever, very helpful and friendly, and an absolutely minuscule wait for someone to pick up. I honestly can't recommend them enough if you have an epilepsy-related issue. The woman I spoke to wasn't able to give me a definitive answer as to whether it was safe or not, but she did give me the number for the UK pregnancy and epilepsy register, which will almost certainly prove a useful resource.

Unfortunately, when it comes to the risks associated with breastfeeding while on anti-epileptic drugs, it really is just a case of checking with doctors, as every case is different. What is a worthy risk for one person would not be justifiable for another. In my case, M is naturally feeding far less than she used to, and my seizure frequency is quite high. It could well be that given those specifics, the neurologist felt that taking the Clonazepam would be the best option. Either way, on the advice of the helpline (and, it must be said, W, who advised this from the start), I have now phoned my doctors' surgery, and am currently waiting for my GP to get back to me and confirm whether or not I have the go-ahead to take this medication.

Based on all that I have learned, I am hoping that I'll get the green light and be able to at least try the new tablets. Although, the list of possible side effects sounds remarkably like a description of me on a bad, seizure-filled day, so it might all become moot anyway.

Well, fingers crossed, eh?

Progress! Sweet progress! (Part 1)

Well, I got a call this morning at about...a quarter to eight? It was my GP, calling me to let me know that the neurologist they e-mailed last Friday replied that evening, and said that although she would need to see my full medical history to know what would be the best thing to do, going on what the GP had told her about my current situation and the form of epilepsy I was diagnosed with, she recommended that I take a new medicine, which I have helpfully forgotten the name of. It began with a "C" though, so having looked through the UK anti-epileptic drugs list on Epilepsy Action's website, I think it was clonazepam. I shall come back later when I have picked up the prescription and correct myself, I expect.

Either way, I was quite impressed that, firstly, the neurologist responded so quickly, and secondly, that the GP got back to me very promptly as well. He actually apologised slightly for calling as early as he did - he didnt say as much but I expect it was so that he could get the call over and done with before his appointments for the day started, as my GP surgery offers appointments from quite early in the morning. Either way, I was up anyway. I usually am. Small children aren't exactly known for their late sleeping habits (more's the pity!).