Farewell, Brown Envelope…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What a difference a day makes…

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

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

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

The Dreaded Form

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

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

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

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

At my worst, eh?

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

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

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

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

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

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

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

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

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

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

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

Darn.

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

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

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

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

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

2.5 Seizures and Counting.

I feel tense now, as though I have been wound tight. I can feel the itchy, fidgety sensation across my shoulders and down my spine; on the backs of my arms and calves; across my brow. I’m on a hair trigger, waiting for the seizure to out or dissipate. Hopefully sleep will do the latter to it.

The worst part is the waiting. Knowing that it’s coming, that it’s only a matter of time and there’s nothing anyone can do about it. Day after day, it’s always there, and it makes everything worse. I tense up because I am scared I’ll have a seizure, and the seizures come because I am tense. Now that I’ve entered this spiral where seizures are happening every day it’s just feeding itself.

I’m too exhausted, both physically and mentally, to do much about it. My neurology appointment isn’t until September, and my appointment with the epilepsy nurse has been cancelled until further notice. No one can help me until they can see me, and what I really need – more tests – are long waiting lists away even then. There is no overnight fix, just a long, dim corridor that has the hope of brightening again some day.

After my second seizure today, I had planned to call my local branch of PALS and see if there was anything they could do.  But there isn’t, surely? They can’t magic an appointment out of thin air, and they can’t make my epilepsy go away. Sure, they could help me complain and I could get a nice letter of apology for being so sincerely screwed over by the lack of epilepsy care in the UK, but how does that help me and my family? How does it help when I’m lying on the floor, twitching and shaking all over, and when my son comes over and pronounces solemnly that I shouldn’t sleep on the floor but on the sofa. (He was corrected, at which point he said: “You don’t have seizures on the floor, you should have them on the sofa!” Fair point, O. Fair point. It’s a lot more comfortable to be sure.)

I shouldn’t feel trapped in my own home by epilepsy. W shouldn’t feel constantly exhausted and worried because he cares for me 24/7, constantly on the watch for odd behaviour that could be a warning sign. O and M shouldn’t have to have a mother who vanishes for parts of the day and is barely fit for purpose at others. I have moments where I just want to scream with frustration. But screaming doesn’t help either. And when I calm down, I just remind myself that it could be worse. After all, I’ve never severely injured myself during a seizure. I’m not in pain. As a nurse said to me before my gall bladder operation, apart from the epilepsy I’m in remarkably good health.

It makes you wonder just how badly the people who aren’t as fit as me are being let down.

The Day Off…

Well, yesterday W and I had our “day off” – his parents had O and M to stay overnight. W’s dad picked them up at around 10am. I was both happy and sad. Happy because we had the house to ourselves, and sad because I missed them both, and because I was worried that M would scream constantly and have to be brought back early.

I had planned to go over to the house of a friend of my mum’s, who is helping me make my wedding dress because I’m an idiot – the last time I sewed anything significant I was fifteen. Maybe fourteen. And that was a t-shirt. In essence, I need all the help I can get because I have a tendency to jump in at the deep end with things. In the end, to save a little time, she came to me, and we made the most of the empty house to cut out the panels for the bodice on the living room floor. It took a while longer than it perhaps should have because I was somewhat terrified by the fact that I had chosen a fabric that had been discontinued, so if I screwed up there wouldn’t be enough to finish. Again, I know: idiot. Words cannot express how stupid I can be at times, and picking a fabric I would barely have enough of to make my first major garment which happens to be my wedding dress is up there with the daftest things I’ve ever attempted. Still, later projects will be a breeze by comparison, eh?

Anyway. That wasn’t actually the point of this post. After cutting out the fabric, deciding “to hell with it” with my plans to tidy, and spending the rest of the afternoon wandering around town and marking the panels of my bodice with what felt like hundreds of fiddly little tacking knots to match them together properly, W and I decided to go out to the pub, and then get something nice for dinner. Only, the second part didn’t end up happening, because while we were sat in the pub trying to decide on a place to go, I suddenly had a burning need to get home. For once I actually realised in time that I was going to have a seizure at some imminent point.

So of course we walked, fairly briskly, back home, and I robotically removed my shoes and slumped onto the sofa. Sure enough, I had a seizure – fortunately not a long one. But afterwards, when I felt the sensation of “weird” leaving me in about as much time as it takes to count to, say, five, I realised that I felt a lot better – more relaxed, and content – than I had all afternoon. I’d started feeling stressed while working on my dress, but hadn’t made that connection, probably because I never realise until after it’s over. It made me think though.

So many time I’ll find myself getting worked up over trivial things (which I was with the dress), and just get on with it, wondering later what I was so worried about. Or I’ll soldier on despite feeling dog tired, or cold, or hot, or tense, or lethargic. So much of my time I seem to be battling to focus on what I should be doing, because there’s this background hum of something being not right. If even half of the time that’s resulting from seizure activity, that’s one heck of a lot more seizures than I’ve been tallying.

Oh, and I got a letter yesterday telling me that the epilepsy nurse is still sick, and all of her clinics have been cancelled until further notice. Perfect timing. Did I commit some atrocity in a past life or something, or pick up the bad-luck lurgy? Because it just seems right now that every time I take a step forward, something pushes me back again. Right when I really need my specialists the most, they are all falling ill. And while the irony of that isn’t lost on me, I really would like to see someone who can help me not have seizures all the freaking time. Preferably before I die of old age.

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.

Jinxed

Guess what?

Yup. Another one. This time while outside. (Fortunately it wasn’t raining as had been forecast.) We had all gone into town together, and had met up with W’s parents, who he called when we realised I was having the sort of aura which leads to a seizure. We’d only gone our separate ways a minute beforehand. W’s mum was able to walk O and M home, and the idea had been for me to get a lift as I didn’t think I would make the walk, but I didn’t quite get to the car.

W managed to get me to a bench, where I slumped against him. Now, it all gets rather disorienting from here. There was a staff member of the shopping parade we were in who called for help. Some men arrived, with a wheelchair, to get me to W’s dad’s car. I cannot describe just how odd it is to be picked up when you have no control over your limbs, but full sensation – I could feel and hear everything, but could not manage to move – I could only just squeeze W’s hand, which is our signal that I am okay.

The worst part is that part of me was convinced that I should be able to get up and/or help the people carrying me to the chair. But I couldn’t. It took me a long time to really feel normal afterward. I still feel a little peculiar, though that may be tiredness.

So, yeah, apparently the world does not wish for me to visit local museums with miniature petting zoos visiting for the day. I am jinxed. I suppose that makes an awful lot of things make an awful lot more sense. It certainly beats the alternative – that I am entering a “bad patch” where I will have more seizures. Who knows how long sucha bad patch might last. It will be anywhere from a day or two to several months, How delightful.

Aura to Seizure.

I tend not to use the word “aura” that much, partly because my auras, when they happen, tend to be almost as bad as seizures and get lumped together at times, partly because they also tend to just be the start of a seizure, not an isolated warning a hour or more beforehand, and partly because, unless you know about epilepsy, the word “aura” tends to be associated with spiritualism and could be misconstrued. The two don’t exactly overlap.

Last night I had a seizure. That in itself isn’t a shocker (they do seem to have gone back to their once or twice a fortnight pattern, which is good), but unlike most of my seizures, there are parts I honestly do not remember; things W told me I did that I have zero recollection of, such as banging into the armchair. Obviously, that’s kind of normal for a lot of people, but the nature of my seizures is such that I usually have a working knowledge of what happened, even if I can’t exactly remember when.

The seizure itself wasn’t all that long; about 3 or 4 minutes according to W, but it was preceeded by a long aura which was almost as debilitating. I can’t say I’ve ever been blind drunk (though I have been tipsy a few times during my teens), but I would say the auras I sometimes must be a little like being very drunk indeed, in terms of loss of co ordination and concentration. My ability to focus in items goes as well, and I get waves of exhaustion, though I would still consider myself functional – last night O got a little worried as I was lying on the floor (a common precaution I take), and I was able to tell him that it was okay for him to keep playing as it was just an aura. Unfortunately, this did mean that when it morphed into a seizure later on, he didn’t realise, and carried on playing. Never mind.

Seizures and Auras

Had another seizure yesterday. Honestly, this is turning into more of an online seizure diary than anything else. It’s depressing. I mean, I knew when I started that I wanted to communicate the challenges of balancing epilepsy with my role as a mother, but this is utterly ridiculous. In the last few days I have gone from having a seizure once a fortnight or so to a cluster of three in four days. To be perfectly blunt, I can put this particular cluster down to only one thing. Money worries. Great.

I had an aura before this seizure, which makes the world of difference, I can tell you. I knew something was wrong, but the sensation is actually harder to describe in words than the seizure itself. Still, I’ll try, because auras, when they occur, are a significant aspect of epilepsy. It can be the difference between safety and a serious injury.

So, for me, an aura can take several forms, which don’t really have a bearing on the type or duration of the seizure (which may or may not follow – sometimes I get an aura and then no seizure, which is both a relief and somewhat frustrating). Sometimes, I suddenly feel very tired, or depressed. These are the easiest for me to miss, despite being obvious enough in their effect, because sometimes I feel either of those things anyway. I have two small children, so tiredness is something I am very familiar with, and the nature of feeling down or depressed is not to question it very much, or start to analyse why you feel that way. This means that, quite often, I don’t recognise my auras for what they are until after the seizure they forewarn.

The auras I can recognise usually take a form which is far more ambiguous, and much harder to describe, which is quite frustrating when neurologists and other doctors ask me about my epilepsy. The best I have come up with so far is to say that they are a sensation that something is “wrong”. It’s a tingle in the centre of my back which both is and isn’t there, and a nagging sensation in my mind, either that I should be elsewhere doing something very important, or that I’ve just been saying something and can’t remember what it is. Oddly, I’ve had the occasional sensation of something being “all wrong” as I used to call it, long before I started having seizures. Or perhaps not. There are lots of warning signs of the type of epilepsy I was diagnosed with which only really make sense as warnings after a diagnosis, because they can also just be typical of humanity. Things like daydreaming, for example.

As it happens, daydreaming can also be an aura for me, although I never realise it, for obvious reasons. This is one which W notices rather than me, and to give him credit, he often knows when I am going to have a seizure before I do, and is able to tell me to sit down, now.

Yesterday’s seizure was fairly convulsive, and throughout I was breathing very shallowly, enough that W thought I had stopped altogether once or twice, and nudged me very hard in the ribs to make sure I was okay. (This is an arangement we have agreed upon between us, as it does usually seem to kickstart my lungs if they freeze up, and obviously you should never do this to someone while they are having a fit as you could injure them. If you encounter someone having a fit and they stop breathing, definitely call an ambulance.)

Today has been better. No seizures, no auras. Clusters always worry me, but I’m going to try and calm down, because in the end, they usually calm down and settle back to “normal”, and really, I just have to take each day as it comes. On a more bittersweet note, my son has now learned the word “seizure”.