Showing posts with label seizure. Show all posts
Showing posts with label seizure. Show all posts

Wednesday, 18 December 2013

'Tis the Season...

...To be piling on the anxiety, it seems.

I'm like it every year - every season, really, but particularly Christmas it seems, because there's so much to worry about. Gifts to buy, and to wrap, cards to write and send, and now school events to remember, attend, send cakes/money for, and friends to consider.

And as someone who dislikes crowds due to social anxiety, even popping to the shops for a pint of milk can become a little daunting. I get home and want to curl up on the kitchen floor with a cup of tea, reassuring myself that I don't have to go out again. Or I would, except that I do have to go out, because if there's one thing I can rely on at Christmas, it's that the stress of trying to be on top of things and remember everything will lead to me in fact forgetting more than usual.

So far, I have written half of my Christmas cards and posted none. And as I type this, I realise I went shopping earlier (with the Girl in tow) and despite writing "stamps" on the list, forgot to buy any. So that will be another trip out. Tomorrow, it can be tomorrow, and I'll suck up the price of a first class stamp, sighing with relief that due to a bit of travelling around, I only actually have to post three or four cards this year. Or five. Could be five. Either way, hooray for not having a lot of casual friends, eh?

I'm riding the adrenaline rush at the moment and hoping the seizures don't happen at the wrong time. I had two yesterday, and both fortuitously managed to be when my children were at school/pre-school and then asleep. I gloss over the note of fear which whispers into the back of my mind that one day, surely, the law of averages will spring one on me at a bad time. It's a chiming worry which I never listen to, apart from late on those nights when sleep eludes me, and if I were a child again I'd want to turn to the comfort of a parent to reassure me that all is well.

That's the thing about adulthood. I have to smile and reassure my children; all the while I'm fighting the urge to call my own parents and ask them the same thing. The single-parenting aspect gives me so much freedom - I went into town today straight from school and stayed there until I wanted to come home instead of rushing back, feeling as though time were ticking away - but the counter to that freedom is the anxiety that I'm an army of one. Help is on hand, but it's a hand several miles away, to be summoned by a phone I can't always use.

And for every person who helps me, I feel the nagging tug of an obligation to be repaid. A debt I owe, one which mounts with each and every favour I offer to repay in kind but never quite settle to my own satisfaction. Then looms Christmas, and I settle it on myself to repay at least a little with gifts and cards. Gifts and cards which must be bought, prepared, and given. All added stresses which I balance on my scales, adding and subtracting what I can do and what I have to let go. And for the let-gos, do I rush to catch up later, or call for help? My cycle of anxiety grows and multiplies.

Yes, 'Tis the Season. To be Merry, to be Festive, and to smile brightly, all the while I am masking wishes for it to all be over so that I can try and find some time to catch up on the things I have not done, the things I forgot, and the favours I am sure to owe in the New Year.

Monday, 19 August 2013

Farewell, Brown Envelope...

That's that then. On Friday I posted off my last DLA renewal. Here's hoping, eh?

It took me the better part of a week and cost me about six or seven seizures, not counting the one I had on the way back from posting the damn thing. That last one turned a five minute walk into almost two hours, and cost me a few pounds in impulse purchases made when I wasn't fully there. Having a seizure is like being drunk. You're not fully in control of your body, even when you can walk and talk. And that side of things can last for a good hour or so either side.

In either case, Friday was a write off for me. I came home and I was out of it for most of the remainder. Had a nightmare that night as well. I guess I can't prove causality on that one, but it's an interesting coincidence.

I had a fairly large seizure yesterday too, and another this morning. Yesterday's involved falling off my computer chair and landing head first on the floor. I jarred my left knee, and caught my right foot on one of the chair's wheely-feet. Both still hurt this morning, along with various other ouches. And then in this morning's seizure I've jarred my left shoulder.

For such a tiny mark, my foot still hurts
one heck of a lot 

In essence, everything hurts, to a greater or lesser degree.

Is this my life anyway? Well, kinda. But the severity of the seizures and how close together they are (three "big 'uns" in three consecutive days, plus auras on the side) is striking. And that's *after* the form sat on my worktop for three days, complete and envelope'd, just waiting until I had a chance to post it.

It was demeaning, and horrifying, to list in detail all the things I can't do. All the dangers I can pose to myself and to O&M. All the measures I put in place to protect my family seem so frail at times. I can "manage" (at the cost of regularly injuring myself), but I take for granted having that extra money there to buy takeaway when it's not safe for me to cook and I've already used my "emergency ready meal" from the freezer. Or if I have no food because I couldn't get out to buy it.

I try to cover up the fact that there are times I will lie on the floor in the kitchen and my children will come and stand watching me for a minute before they get bored and go and play. I downplay it to friends: "Oh, I'm fine; the children are as good as gold, they know what to do."

I don't think they really know what to do at all. It's normal for them, they aren't scared. But they do poke me, or climb on me, or fail to realise I'm having a seizure. They tell me to get up, ask me why I'm lying on the floor. (Sometimes they get rather cross that I won't fetch them drinks etc.)

I gloss over those aspects on a day-to-day basis. One of the other mums has authority to collect my son from school if I don't turn up, so seizures at pick-up time can be resolved, but other than that I do all I can to not make concessions. I'm a fighter. Well. You have to be, and I'm lucky enough to come from a family of women who are stubborn as all hell anyway. I still hold that faint hope somewhere that one day I'll get my driving license back, and if that's not a faint hope in reality, I don't know what else is.

I'm a writer, I make up worlds, so my most common coping mechanism is to pretend there's nothing wrong with me all the time I can. I take risks. Last week I went to London for the evening. I spent the next day exhausted and had seizures as a result, but at least I had my fun night out.

And then, there I was, confronted with that God-forsaken form and an instruction to list, in detail, all the things I can't do. All the inhibitions on my life, all the ways that epilepsy gives me the finger on a regular basis. There's quite a few. Of the many sections, I think there were four or five, maybe six, that I could leave blank. I probably could have said more. I certainly would have said more, had I lots of consultation notes to hand in, but as it happens there's no access to specialist support here, so I don't have any. I did at least get to point that one out.

And now the wait. Fingers crossed I "pass", eh? Because I still need that DLA. Whether I meet the increasingly stringent criteria or not won't change the fact that most days, the longest I spend out of the house is an hour. In term time. Taking my son to school and picking him up.

And now that M is 3, I somehow have to start volunteering when term starts. Good old ESA, tailor-made to stretch me to the limit. Let's just hope it doesn't make my seizures worse, eh? Maybe double up on those crossed fingers. I might need the extra luck.

Tuesday, 6 August 2013

What a difference a day makes...

So. Maybe I'm about to embark upon a rant full of self-pity and unwarranted entitlement (I'm sure there are people who would assess my situation as such, so I figure I should get the warning out of the way). However, I think this is something I need to say, because the situation I'm in isn't one that is faced by me alone. It's something facing thousands, and in the spirit of Bedding Out I'm putting my private self out there because it's something not many people see. And maybe they should.

I have epilepsy. I also have dissociative seizures, which are also known as "non-epileptic seizures" "psychogenic seizures" "non-epileptic attack disorder" or whatever other flavour of the month name is going around, seeing as it's something which doesn't actually appear to have a universally recognised medical name just yet. (This is something that is oh, just super helpful when it comes to trying to manage the condition by the way.)

I'm writing this because I just got my DLA renewal form through (well, it was actually a week or so ago but other family issues intervened), and while I seem to have struck the lucky jackpot in that I fall into that thinnest of margins where I don't transition to PIP just yet, I'm also struck by how badly my current postition sets me up to claim DLA at all.

The Dreaded Form

I'll say now, my health has not notably changed from when I first made my claim in 2009 and was awarded medium care, low mobility. I've had my ups and downs, but hey. I didn't notify the DWP when my seizure frequency skyrocketed and I was having them multiple times every day. I managed with what I had, and I didn't want the stress of filling that out because, hey, while I was worse I also know that I fluctuate and eventually they'd settle back again. I'm not out to get every penny I can. I just want to be able to live.

So. Here I am now with the above forms in front of me. Back in 2009 I had help from my local CAB filling out the forms. Navigating them is daunting and intimidating. The single-purpose form covers such a vast array of illnesses and disabilities that you start to doubt you're entitled to it at all when you're dutifully replying: "No, I'm fine with this" to the majority of the options. Given that the dissociative portion of my seizures are strongly correlated to stress, it's not the most productive way to manage my health.

This time though, I appear to have fallen prey to the CAB's drastically reduced funding. I called my local centre yesterday and was told to call this morning and make an appointment, preferably in the first half of the week if possible as they only have one person who is a benefits specialist. So, this morning, at ten o' clock sharp, call I do. Unfortunately, today's advisor brusquely informed me that whoever it was I had spoken to yesterday must have been mistaken, that the only way to make an appointment now was to go in person to a different access point in town, but that there was only one appointment left for the remainder of the week, and really I ought to just fill out the form myself.

I explained that my disability is a fluctuating one and that I have difficulty in knowing how best to fill in the details to convey how it affects my life, to which I was told simply that I should fill it out from the perspective of me at my worst.

At my worst, eh?

At my worst, I lie on the floor, unable to move or speak. I sometimes convulse, and crash into whatever is around me - be it a wall, the floor, worktops, armchairs...I've hit them all before now. Last week, my adrenaline spiked before the seizure started and I randomly kicked the sofa before staggering out into the hallway and toppling over, landing hard on the side of my head and my shoulder. My neck is still stiff and sore from the muscles I pulled with that awkward landing. I can't communicate, sometimes I stop breathing for 30 seconds at a time, and when my eyes are open they are usually unfocused or rolling around in their sockets.

In short? I'm pretty darn incapacitated. So I should be a shoe-in, no? No.

The trouble is, the form doesn't actually ask: "How bad does it get?" It asks how often you are unable to do things such as: use stairs, walk, talk, bathe yourself, or cook. It mentions that it can't factor in "any problems you may have walking on steps or uneven ground" (Page 12 of the form). I mean, seriously? Just before I have a seizure I probably could manage to walk across a flat surface and only look a teeny bit intoxicated. I'd probably fall down a flight of stairs though, or trip over my own feet on a ramp. Just after a seizure, even the slightest incline may as well be a mountain.

That's just one example of many. The other problem is that my heath is wildly unpredictable. Some days, hey, you know what? I could run a race, I could climb a tree, I could do all the things "normal" people do. Heck. Some days I am the picture of a fit and healthy, fully able human being.

Some. Other days I wake tired and never lose that exhaustion. Other days I start off with a seizure and the grogginess never goes away. Other days I am all well and good until I just keel over with little warning. Other days I get auras that last hours, filling me with drowsiness or shivering fits or bouts of depressed or paranoid moods where I am convinced the world is better off without me and anyone who claims to like me or love me is putting on an elaborate act so that they can better stick the knife in later on. Some days I have to force myself to eat, to drink. Some days the thought of going and having a shower, or getting dressed is just another arduous obstacle to overcome.

And then there's my children. No matter what I have to make sure they eat and drink and are clothed. In term time I have to make sure my son (and as of September) my daughter get to school and pre-school respectively. I've had seizures in the kitchen where they've both stood watching me, complaining that I won't get up. A couple of weeks ago my daughter insistently pushed her cup into my hand because she wanted a drink, and when it fell out she pushed it back in, harder.

I keep a stock of frozen ready meals and microwaveable tins like baked beans for when it isn't safe for me to cook their dinner on the hob. I drill into my son and increasingly my daughter that they are to stand back if I am lying on the floor because it's not safe. If I feel a seizure coming on I'll put on a DVD for them and quietly go into another room so that they're occupied. I hate that they're occasionally telly and computer addicts but I'm also relieved because I know that if I'm going to be out of action for ten or fifteen minutes they won't even notice because they're absorbed in what they're doing.

I'm recently a single parent, too, so I have to get on and do this by myself. It's impractical to spend my DLA on someone coming in to help me, because I don't know when that will be, so instead I spend it on the more expensive instant meals and not buying in bulk so I can ferry it back home by hand. On getting taxis to places, on the difference between scraping out an existence shut indoors and a life where I can be free of the stress of making that last few pounds stretch until the next payment. On knowing that that lack of stress means I won't have so many seizures, so I will be a better and safer parent. On cable TV so my kids have something to watch when I'm on the floor.

Will I manage if I lose the DLA? Yes. I'll have to, really. But it will mean cutting back. It will mean I go out less, and I will probably eat less, and buy clothes less. It will mean sitting in the dark more to cut down on electricity, and showering my children more swiftly so the bathroom light and extractor fan don't run as long. (I don't have a bath in my apartment as it is a health hazard for myself and my children.) It will mean asking for more help. I'll confess to being proud. I'll confess to wanting to be independent and not have to ask for help all the time. I want my children to see me at my best, and I want them to grow up knowing they can do anything, be anything. I hide my seizures from them where possible - drag myself through the motions when I feel like collapsing exhausted, and make it to that golden moment when they're in bed and I can flop in the living room and let down my mask of normality. I try not to snap at them when I am weary to the bone and just want to sit with my head in my hands.

Every brown envelope, every test and hurdle from the DWP makes me want to cry, because it threatens to rob me of the strength to keep up that mask for my children. Breaking down my mask for the DWP makes me question my ability to care for my children. After all, for all I do, I still have seizures. I still collapse at times, and every now and then a friend has to collect my son from school because I can't get there to pick him up. It's not about dignity. It's not about pride and having nice things. It feels personal, a cutting choice between getting support and feeling like a competent mother.

At my WCA the assessor asked me how I looked after my children if I had seizures. I felt like the worst person in the world.

Monday, 27 February 2012

The Kindness of Strangers

I have a strange request. I had a seizure today, and I need to say thank you. The trouble is, I don't know who I need to thank.

You see, I was on my own in town, and I felt a seizure coming on. Since it had addled my brain a little, the only thing I could co-ordinate myself to do was to grab my epilepsy card out of my bag, and head towards a place I could sit down. I was sat slumped on a bench for a minute or so before the seizure took hold, and I flopped forward. My eyes were open, but I couldn't focus, so I could only see vague shapes walking past some way off. I remember wondering how many people would walk straight by.

Then I heard voices coming closer. Someone put their hand on my arm and asked if I was okay; a question I couldn't answer. They got more concerned - a man and a woman, it sounded like. More people approached. Someone found my epilepsy card. Immediately I heard a woman call 999. Meanwhile, the man was telling people I needed to be put in the recovery position. I was lifted from the bench, and lain on the floor. Someone said: "She's so young." (Now that I'm back to normal, I'm flattered, let me tell you that!) A man's hand came into view, and gently squeezed my wrist - taking my pulse, which was faint, as he said to the others.

He was worried; I could tell that much. My eyes were open and glazed, he kept saying my pulse was faint, and asked me to stay with them. In the background, someone was talking to the emergency services. The man rubbed my hands to keep them warm - he kept saying how cold they were, and checking my temperature on my forehead. Someone laid a coat over me. I finally got enough control over my eyes to blink a little, and I could hear relief in people's voices.

The paramedic arrived, and reassured the crowd that I was okay. They went on their way, after being told I would be fine. I wasn't back to normal at the point they left though, which means I never got to see what the people who helped me looked like, or to say thank you for what they did.

They were unaware that I could hear everything that was going on - or that I had a vague, fuzzy window on the whole sequence of events, and that I was touched by their concern and their kindness.

This is why I'm going to take a leap of faith, and ask for the internet's help. All I have to go on was that the man's hair was greying slightly, and he was wearing a waterproof coat, with (I think) red and black sleeves, but I'd like to try and track them down. So if you know (or you were!) the people who helped a woman having a seizure at around midday today in the Fremlin Walk, Maidstone - on the bandstand opposite the museum - please let them know that the woman in question is indeed okay now, and wants to say a heartfelt thank you for that kindness; the kindness of strangers.

Sunday, 1 January 2012

Welcome to 2012, Year of 366 Days!

So, here we are. It's a Sunday afternoon and the rain is falling, welcoming the New Year in a particularly British fashion. It's not that cold, not at all warm, just damp and a bit grotty.

I'm not here to write an obligatory "It's a New Year, so I promise to do Better this time" post. For starters, I'm a realist, and I've started too many diaries with the best of intentions, and then by the time February rolls around, not only have I stopped writing every day, I've gone and lost the dratted things. Heck, I could say the same for about halfway through January. And then, to be honest, I don't know that there are all that many things I could say I got wrong in the last year. 

Okay, so my organisation could stand to improve (heck, it could always stand to improve), and there are things I want to achieve this year that I had put on the back burner last year (there's only so much you can get done with two children under the age of four around), but overall I don't think I did that badly. 

I had surgery twice, made a wedding dress, got married, and completed NaNo (even if the story still needs major work). That's nothing to be ashamed of, especially when you add up all the little things that get done on the side. Actually, there are a lot of little things on the side. Maybe I should have a New Year's Resolution to not start too many things. But then, where's the fun in that?

I start the year one e-reader the richer, so I think that by the time the next January rolls around I'd like to have taken at least one step towards publication in some form. I tend to stick my head in the sand a little, and have spent the last few days discovering what is rapidly turning into an epiphany about e-publishing. Still not completely sold on that one, but I could give it a go for some of the things I've written, if not all. 

And of course, my CBT rolls on, too. Next appointment is on Tuesday, so we'll see how it goes. Having seizures around big family holidays is a real drag (and I had a fair few, so I know from experience), so that would be a good thing to get under control. I'm not going to set myself a "goal" with seizures though. My inner realist knows it's too much to hope that I'll be seizure-free within a year, and yet, aiming for anything less seems a little pessimistic. 

Plus, setting goals for health sets you up to fail, and then, not only are you more ill than you wanted to be, you're down about it too, because you promised yourself in a cloud of hope and optimism that it wouldn't happen. The way I see it, making promises about things you only have a finite amount of control over is setting yourself up for disappointment when circumstances beyond your control intervene. If something stressful happens to me, I will probably have more seizures. If I'm then stressing about the stress, and the fact that I wasn't "supposed" to have any more seizures that month, I don't think it's really going to help much. 

And, in other news, O and I decorated snowflake-shaped gingerbread biscuits today. They were delicious. Biscuits and sugar are a good start to anything. That's a new family tradition, right there. 

Saturday, 10 September 2011


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>

Monday, 5 September 2011

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?

Saturday, 27 August 2011

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.

Tuesday, 23 August 2011

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.

Thursday, 11 August 2011

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.

Friday, 5 August 2011

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.

Thursday, 4 August 2011

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.

Tuesday, 2 August 2011

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.

Tuesday, 26 July 2011

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.

Monday, 25 July 2011

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?

Saturday, 23 July 2011

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.

Thursday, 14 July 2011

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.  

Monday, 11 July 2011

Well that was fun...

Home again now, and recovering from the operation I had on Saturday to remove my frankly rather inept gall bladder. I'm feeling pretty good, considering, but have been told I mustn't lift O or M for about a fortnight, which will most likely prove problematic at some point.

This was the first time I've had abdominal surgery - I've had the one general anaesthetic before when they whipped two of my widsom teeth out - and I must say, I'm surprised by how well I seem to be doing. On Saturday I felt pretty woozy for about four or five hours after coming round, but since then I've mostly just been rather sore and a little sorry for myself. The strangest thing has been how I've been subconsciously comparing it to previous stays in hospital, and surprising myself when things that happened then haven't happened this time.

The biggest example has been comparing this to childbirth. Honestly, I've been walking around hunched over a fair amount, because I have several holes in my abdomen, and that reminds me somewhat of hobbling around having just given birth. But there are no other similarities really, so I've caught myself being surprised on say, sitting down, to find that it doesn't hurt. Or I've been taken aback slightly by just how much my shoulders ache (as obviously they didn't after giving birth), and how weak this has made my arms. But, adding up the pluses and minuses, I think I've come out trumps. Sure, I'm down an organ, but I'm bouncing back well.

I did have a seizure on Saturday, while I was still groggy from the anaesthetic, but as I didn't thrash around at all - the only reason I could tell it apart from general wooziness was the fact my eyelids were fluttering - no one else noticed at the time. I actually rang my buzzer and had to tell the nurse that I'd just had a seizure, I was okay, but it should probably go in her notes on me so as to keep them accurate. I seem to have struck gold with nurses the last week or so though, because a relative of hers had epilepsy, and she was quite relaxed about the whole thing. She just asked how long it had gone on for, and then what she should do if I had another one. I was also quite relieved when she accepted that I've been having them almost daily recently and that this shouldn't delay my going home any further than the epilepsy already had - I automatically had to stay overnight for what would otherwise have been day surgery.

Anyway, I'm still a little weary, so I'll wind down for now. I can't say I slept fantastically last night or the night before, (who knew that surgery could do that to you, eh?) and tiring myself further is just inviting bad news. Hopefully in a week or so I'll be back to normal. Or as normal as I ever am, at any rate.

Thursday, 7 July 2011

Cracks in the Walls

It's stressful, you know. At the moment, my seizure frequency is higher than it has been at any point since...well, since my diagnosis about five years ago. I had two seizures yesterday while visiting W's parents, and actually considered it a small victory that I managed to get safely home again on the bus without further incident.

Today, I should have taken M to a parent and toddler group and then a breastfeeding group this afternoon, but due to a poor night - an occasional fact of life if you have small children - both W and I were worried about me leaving the house without him. And then, about half an hour before we were all due to go out as a family, I got that funny feeling I get sometimes, and had to crawl upstairs and drag myself onto the bed. I felt my arms and legs going as I entered the bedroom. When I came back to normal I checked my watch and only about five or ten minutes had passed, but I can only remember a minute or so and then I have a blank. When I'm alone like that and there are no events for me to mark time by, I might as well have blacked out for all I can remember. I just get to a point where I am suddenly aware that I am lying in a rather uncomfortable heap on the bed, or on the floor, and I know how and why I got that way, but still have the disorienting sensation of "coming to" which makes me wonder more and more: "did I pass out this time? Will I pass out next time?"

Needless to say, I haven't left the house at all today. I can feel myself getting more and more hermit like, and the stress is telling on W. He does a hero's job putting up with me and my seizures, sometimes listening to him and lying down when instructed, sometimes loopy enough to insist firmly that I am perfectly okay right up until the point where I keel over. But it is relentless for him, and the more seizures that I have, the greater that burden of stress I put on him. I can't go with him to the shops, but he's worried to leave me behind. I can't just sit around the house all the time (I go stir crazy, and that makes me worse), but going out is fraught with worries of its own. Even when I am at toddler groups and O and M are able to be watched by other people, during the few hours a week that W doesn't have to worry about me, well, of course he does! You can't just switch that off. He doesn't get a holiday. And okay, neither do I. I always have to live with the fact that I could have a seizure at more or less any point. But while I'm actually having a fit, I'm too out of it to really care. It's W who has to pick up the pieces, and watch both me and our children while it happens. And we both have to then explain to O why we were unable to go and meet up with Grandpa, or why we aren't going to playgroup, and he's still young enough to not understand. The other day he cried out "but I'm missing all the fun!" and it broke my heart. He does miss out sometimes, and it just isn't fair.

How long will I be like this? How long will it take someone to find the right combination of drugs to keep this at bay? When will I get back to "normal", if it even exists?