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.