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.
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