...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.
Wednesday, 18 December 2013
Tuesday, 17 December 2013
Christmas concerts have changed.
So, today was my son's Christmas Carol Concert. Now that he's in year 1, and no longer in the semi-partitioned world of Foundation, he gets to participate with the rest of the school. I'm writing this, feeling like I've crossed over the threshold into the mythical world of the "School mum". As though last year and the weeks of this one so far didn't count.
Still, this is the first time I have felt compelled to write about something specifically and only relating to my children on here. So maybe that is a rite of passage of sorts.
You see, I was a little sceptical about the children having only a "carol concert", and no nativity once they were out of Foundation. I'm no practising Christian - I'm thoroughly agnostic with a logical leaning for much of the time, but I guess I can be pretty traditional about some things. And there's something nice, isn't there, about trotting out to see your precious child say nothing at all in the school play while the children of the more prominent PTA members get to be Mary and Joseph. (The highlight of my Nativity experience was being a rag doll in Santa's workshop, captured for milliseconds on gloriously blurry VHS.)
That was how it was done, right? When I was at school, costumes were home-made and nigh unrecognisable. You sang Away in a Manger tonelessly and raggedly, while the teacher who could play the piano trotted out her repertoire on an upright which was only a little out of tune. And there was a good chance the parents could understand at least one word in three of Silent Night.
This year, I sat near the back of a hall at the neighbouring secondary school, watching my son stand with his year group singing a song about Christmas crackers, after which they marched off the stage to let the next year on. There was no piano - instead, a very polished CD was played which the children sang along to, and tried to be as loud as the rather more in-tune children's choir it featured. It was a lot more slick and jazzy, but somehow, I couldn't help feeling as though something had been missed.
The only year group which do a Nativity at my son's school are Foundation. Well, last year the Boy was sick on the day we were to go and see it, so I was unable to see his performance as a "Non-talking Shepherd", and it looks as though that was my only shot. maybe it's just my bitterness at missing his one and only Nativity, but I can't help feeling that sitting children in rows so they can sing along to a bunch of other (no doubt older) children singing better than they can is slightly missing the point.
I don't go to a primary school carol concert looking for polish and quality. I go to see my son, and as much as it might make me a bad person, I don't care about the other five years, all singing in turn. Or even watching 360 children standing in a group singing a song I have heard a rather more flat version of at home for the last fortnight. Especially when I know that I'm not hearing him anyway. I'm listening to a CD, played out on speakers because 360 children means a whole lot of parents and the borrowing of a secondary school's hall to accomodate them.
Call me old-fashioned, but I think I would have preferred what my parents got. An out of tune piano and a rag-tag of children who sing their off-key hearts out, missing or forgetting words and generally sounding like what they are. Children. Our children.
When did it become the done thing to replace their (let's be honest, not very good) singing with the singing of some other people's children?
Still, this is the first time I have felt compelled to write about something specifically and only relating to my children on here. So maybe that is a rite of passage of sorts.
You see, I was a little sceptical about the children having only a "carol concert", and no nativity once they were out of Foundation. I'm no practising Christian - I'm thoroughly agnostic with a logical leaning for much of the time, but I guess I can be pretty traditional about some things. And there's something nice, isn't there, about trotting out to see your precious child say nothing at all in the school play while the children of the more prominent PTA members get to be Mary and Joseph. (The highlight of my Nativity experience was being a rag doll in Santa's workshop, captured for milliseconds on gloriously blurry VHS.)
That was how it was done, right? When I was at school, costumes were home-made and nigh unrecognisable. You sang Away in a Manger tonelessly and raggedly, while the teacher who could play the piano trotted out her repertoire on an upright which was only a little out of tune. And there was a good chance the parents could understand at least one word in three of Silent Night.
This year, I sat near the back of a hall at the neighbouring secondary school, watching my son stand with his year group singing a song about Christmas crackers, after which they marched off the stage to let the next year on. There was no piano - instead, a very polished CD was played which the children sang along to, and tried to be as loud as the rather more in-tune children's choir it featured. It was a lot more slick and jazzy, but somehow, I couldn't help feeling as though something had been missed.
The only year group which do a Nativity at my son's school are Foundation. Well, last year the Boy was sick on the day we were to go and see it, so I was unable to see his performance as a "Non-talking Shepherd", and it looks as though that was my only shot. maybe it's just my bitterness at missing his one and only Nativity, but I can't help feeling that sitting children in rows so they can sing along to a bunch of other (no doubt older) children singing better than they can is slightly missing the point.
I don't go to a primary school carol concert looking for polish and quality. I go to see my son, and as much as it might make me a bad person, I don't care about the other five years, all singing in turn. Or even watching 360 children standing in a group singing a song I have heard a rather more flat version of at home for the last fortnight. Especially when I know that I'm not hearing him anyway. I'm listening to a CD, played out on speakers because 360 children means a whole lot of parents and the borrowing of a secondary school's hall to accomodate them.
Call me old-fashioned, but I think I would have preferred what my parents got. An out of tune piano and a rag-tag of children who sing their off-key hearts out, missing or forgetting words and generally sounding like what they are. Children. Our children.
When did it become the done thing to replace their (let's be honest, not very good) singing with the singing of some other people's children?
Wednesday, 4 December 2013
Problems with being Socially Anxious
I don't do people. I don't have a massive problem with them or anything, although large crowds tend to set shivers down my back and have me watching over my shoulder every now and then as though someone is about to run up behind me and plant some sort of: "I look really stupid, please laugh at me" sign on my back.
Pictured: My trusty shield, defending me from imaginary "kick me" notes for a good decade or so.
It was once an indispensable part of my wardrobe.
But largely. I can manage. I can walk next to people without freaking out. I might even make small talk with other parents outside the school gates after I've "known" them for six months or so. Heck. After the Girl had separation anxiety and used to go, screaming, into pre-school every day, I perfected the: "Oh well, it's just a phase," line as I forced a smile onto my face while walking past all the other parents with their not-screaming children, hoping that they weren't judging me, mocking me, or despising me for being responsible for such a noisy child. (And thankfully the Girl has gotten over her own anxiety and is quite happy in the mornings now.)
I will readily admit that as much as I try not to label myself, the terms "shy", "social anxiety" and "people phobia" spring readily to my mind when I think of my personality, along with somewhat more stigmatising terms such as "recluse", and "social pariah".
For the most part, I live my somewhat solitary life more vicariously through the internet. Here, at last, I am free, cut loose from my anxieties because no one can see how my forehead contorts with nerves as I post on forums. No one knows that I sit for five, ten, fifteen minutes with my mouse hovering over "reply" - all they see is TottWriter, a name on a screen, sounding confident, opinionated, bold. Even if the name does post somewhat infrequently.
Parenting puts a bit of a dampener of that shield, however. There's the school run, for starters, And while it's less daunting in reality than lots of forum topics would make it out to be (I've yet to see the parents actually divide into tribal formations, taking out the weaker specimens for sport), it still involves a degree of social interaction which I flounder on at times. Left to my own devices I would walk alone, stand alone, collect my children and flee, feeling pangs of longing for the parents who natter and gossip with ease, but knowing it's not for me.
Then, the Boy went and made friends, and suddenly we have a group of people to walk to and from school with each day. I've taken to calling bedtime "The Gauntlet" due to its somewhat challenging nature, but my true gauntlet runs twice a day, at starting times of 8:20am and 3:00pm. Here is when I am tested - when I smile and make small talk, all the while noticing every pause before someone replies to me, every time people don't hear my remark and talk over me, every time I am three paces behind the main group instead of one or two. Every occasion where the other parents are meeting up outside of school and I am not, when a grudge or conversation is discussed in which I had no part.
In short, every time I feel that little bit more invisible than the others, when I start to worry that my mask of confidence has slipped and people can see me for what I am - an outsider, desperately clinging to the pack for my children's sake and out of loneliness.
I know I don't belong there, in conversations about nights out, fashion, and men. I'm none of those things. I stay in, I have never been fashionable, and I am currently coming to a full realisation that I am far closer to asexual than allosexual. I don't fit, and I never have.
The problem with being socially anxious is that, even though I know that no one "fits" a group perfectly, instead of finding the common ground and building friendships. I falter at the first hurdle, and spend years berating myself for that failure, for "getting it wrong", for standing wrong, dressing wrong, staying quiet when I should have talked, or babbling when I should have been quiet. It's that I over-analyse every mistake I make and let it cloud my social interactions in the future, and although I no longer wear a rucksack and a mid-length coat to defend myself from other people, I still feel like I need to don armour every time I walk out of the house.
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.
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.
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.
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.
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.
Thursday, 7 March 2013
ESAendgame and Me.
So, I'm hauling myself back from the shadowy realms of the dead blog god's domain. Not just for epilepsy this time either, though that is why I started this little space. Today though, I want to talk about a bigger issue. A wider one which affects hundreds of thousands of people up and down the country and has led to hardship, despair, fear and even death. I'm going to be as impartial as I can in this blog despite that though, and lay out just what the system is that people are protesting.
For a long time now, I have been a recipient of Employment and Support Allowance, or ESA as I will refer to it from now on. This is the benefit that replaced the old Incapacity Benefit, and is a benefit for people who are too sick or disabled to go on Jobseekers Allowance.
That point is worth repeating. This is a benefit for people whose health prevents them from working as an able-bodied or fit person can. Obviously, this is a wide ranging bracket, so ESA is split into two groups. The "Support Group" is for people who are incapable of any kind of work, and who are highly unlikely to ever be able to. The other group is the "Work Related Activity Group" (WRAG), for people who probably could work, or whose health condition may not be permanent, but still, they're not fit or able-bodied enough to look for a conventional job as would be required by Jobseekers Allowance claimants.
People in the WRAG (such as myself) are encouraged to participate in "work related activity" such as training programmes, voluntary work or work focused interviews - some of which are mandatory unless you are a lone parent with younger children.
By far the biggest hurdle people face, however, is getting placed into a group and then staying there. Claiming ESA is easy enough, at first. You go into the assessment phase and have to provide notes from your GP stating that you are not fit to work. And if your GP is willing to state that, then chances are, you aren't. Because a doctor that knows you and your medical history (and all the back and forth between any specialists you see) can make that judgement, and is hardly going to lie. I see my GP a lot and he recognises me when I come in, but I can't for the life of me imagine him or any other GP committing fraud on mine or anyone else's behalf.*
However. When you apply for ESA, it's not just a matter of providing doctor's notes. You also get put on the list for a "Work Capability Assessment" or WCA. This is an interview process outsourced to a company called ATOS, wherein a "doctor" who has never met you before over the course of one interview decides whether or not you are as sick as you (and your GP) say you are. This would be problematic enough on its own, but ATOS has a track record for getting the decision wrong. (Note: that article is two years old and yet ATOS are still in charge of WCAs)
Terminally ill cancer patients have been found fit to work. People with severe epileptic seizures have been found fit to work only to die a few months later from those same seizures. Profoundly sick and disabled people have been left destitute, forced to appeal decisions which took away their only income, and 40% of those appeals against ATOS are being upheld. 16% of ATOS's decisions overall are being found to be incorrect.
The principle behind ESA - to support the sick and disabled who cannot work, and provide the correct assistance to those who can work to help them find employment - is one that few disagree with. People want to work. I want to work. But I also don't want to go through the stress and fear of waiting for a letter to arrive on the doorstep telling me that a stranger I have never met has decided that I don't need that extra support.
WCAs are repeated. The "brown envelope" that comes through the door periodically can re-summon you to display your incapacities, or demand that you fill out an exceedingly long form with tickbox options to display how you are sick or disabled. This side of things is the other problem with ESA. Sickness and disability does not fall into neat little tickboxes. Yes, some people are demonstrably disabled or sick. Blindness, cancer, use of a wheelchair, the lack of motor control to pick up small items, these are all tangible ways in which some people can "prove" they are disabled.
What, then, about those with learning difficulties - those who spend their lives trying to appear normal, only to be forced to tell a stranger all the cannot do; those with autism or aspergers who are severely traumatised by having to talk to a person they have never met; those with mental health issues whose health rapidly deteriorates from the stress and fear of having to prove themselves and the prospect of losing everything if they can't; those with conditions which vary, such as ME or fibromyalgia, with few "tickbox-worthy" symptoms but whose lives are dominated by these problems?
The answer is that many of them are found "fit to work" and shunted onto Jobseeker's Allowance - only to be told by the jobcentre that they are too sick to work and therefore cannot claim that benefit either.
This is a system which is deeply and inherently flawed. It was flawed from the outset, too, because it was designed to save money, to reduce the welfare bill. Let me direct you to my asterix point below, and that 0.5% fraud rate. The only way to reduce the cost when there is a remarkably low fraud rate on a particular benefit is to take said benefit away from people who are entitled to it. This is what has happened. ESA has been taken away from deserving people so as to reduce the welfare bill. And as a direct result, people have died.
This is where the ESAendgame campaign is coming in. Such a system, which knowingly lets down society's most vulnerable people, has to change. Has to be replaced with a system which supports and works with them, instead of against them. And to do that, we need everyone to work together, to stand up and make themselves heard, to say "Not In My Name", and demand that change comes. Now.
*As it happens, the proportion of ESA and DLA claims which are fraudulent is around 0.5%
For a long time now, I have been a recipient of Employment and Support Allowance, or ESA as I will refer to it from now on. This is the benefit that replaced the old Incapacity Benefit, and is a benefit for people who are too sick or disabled to go on Jobseekers Allowance.
That point is worth repeating. This is a benefit for people whose health prevents them from working as an able-bodied or fit person can. Obviously, this is a wide ranging bracket, so ESA is split into two groups. The "Support Group" is for people who are incapable of any kind of work, and who are highly unlikely to ever be able to. The other group is the "Work Related Activity Group" (WRAG), for people who probably could work, or whose health condition may not be permanent, but still, they're not fit or able-bodied enough to look for a conventional job as would be required by Jobseekers Allowance claimants.
People in the WRAG (such as myself) are encouraged to participate in "work related activity" such as training programmes, voluntary work or work focused interviews - some of which are mandatory unless you are a lone parent with younger children.
By far the biggest hurdle people face, however, is getting placed into a group and then staying there. Claiming ESA is easy enough, at first. You go into the assessment phase and have to provide notes from your GP stating that you are not fit to work. And if your GP is willing to state that, then chances are, you aren't. Because a doctor that knows you and your medical history (and all the back and forth between any specialists you see) can make that judgement, and is hardly going to lie. I see my GP a lot and he recognises me when I come in, but I can't for the life of me imagine him or any other GP committing fraud on mine or anyone else's behalf.*
However. When you apply for ESA, it's not just a matter of providing doctor's notes. You also get put on the list for a "Work Capability Assessment" or WCA. This is an interview process outsourced to a company called ATOS, wherein a "doctor" who has never met you before over the course of one interview decides whether or not you are as sick as you (and your GP) say you are. This would be problematic enough on its own, but ATOS has a track record for getting the decision wrong. (Note: that article is two years old and yet ATOS are still in charge of WCAs)
Terminally ill cancer patients have been found fit to work. People with severe epileptic seizures have been found fit to work only to die a few months later from those same seizures. Profoundly sick and disabled people have been left destitute, forced to appeal decisions which took away their only income, and 40% of those appeals against ATOS are being upheld. 16% of ATOS's decisions overall are being found to be incorrect.
The principle behind ESA - to support the sick and disabled who cannot work, and provide the correct assistance to those who can work to help them find employment - is one that few disagree with. People want to work. I want to work. But I also don't want to go through the stress and fear of waiting for a letter to arrive on the doorstep telling me that a stranger I have never met has decided that I don't need that extra support.
WCAs are repeated. The "brown envelope" that comes through the door periodically can re-summon you to display your incapacities, or demand that you fill out an exceedingly long form with tickbox options to display how you are sick or disabled. This side of things is the other problem with ESA. Sickness and disability does not fall into neat little tickboxes. Yes, some people are demonstrably disabled or sick. Blindness, cancer, use of a wheelchair, the lack of motor control to pick up small items, these are all tangible ways in which some people can "prove" they are disabled.
What, then, about those with learning difficulties - those who spend their lives trying to appear normal, only to be forced to tell a stranger all the cannot do; those with autism or aspergers who are severely traumatised by having to talk to a person they have never met; those with mental health issues whose health rapidly deteriorates from the stress and fear of having to prove themselves and the prospect of losing everything if they can't; those with conditions which vary, such as ME or fibromyalgia, with few "tickbox-worthy" symptoms but whose lives are dominated by these problems?
The answer is that many of them are found "fit to work" and shunted onto Jobseeker's Allowance - only to be told by the jobcentre that they are too sick to work and therefore cannot claim that benefit either.
This is a system which is deeply and inherently flawed. It was flawed from the outset, too, because it was designed to save money, to reduce the welfare bill. Let me direct you to my asterix point below, and that 0.5% fraud rate. The only way to reduce the cost when there is a remarkably low fraud rate on a particular benefit is to take said benefit away from people who are entitled to it. This is what has happened. ESA has been taken away from deserving people so as to reduce the welfare bill. And as a direct result, people have died.
This is where the ESAendgame campaign is coming in. Such a system, which knowingly lets down society's most vulnerable people, has to change. Has to be replaced with a system which supports and works with them, instead of against them. And to do that, we need everyone to work together, to stand up and make themselves heard, to say "Not In My Name", and demand that change comes. Now.
*As it happens, the proportion of ESA and DLA claims which are fraudulent is around 0.5%
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