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.
Monday 29 August 2011
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.
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.
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.
Friday 19 August 2011
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.
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.
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.
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.
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.
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.
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.
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.
Monday 1 August 2011
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.
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.
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