Little Victories

Today called for a celebration. For one of these:

This is my favourite mug, as it happens. Keeps tea hot for ages and ages and holds a lot of tea, too.

What am I celebrating today, you ask? What deserves this wonderful mug  of chai tea with whole milk (not semi) and a dash of honey?

Today I made it home before the seizure. Today I did not collapse on the pavement. Today I did not need help.

I made it home. I made it up the stairs. I made it to my living room and then I keeled over. Not before. Not while I was out. Not crossing the road. Not on the path outside. Not when I was struggling to unlock the door. Not even when passers by gave me odd looks because I couldn’t walk straight.

I made it home. I fought to keep my head straight and as far as I’m concerned? I won. I might have had a seizure anyway, but I didn’t drop until I was in a safe space. So, now that I’m upright again – with a fair old headache, and snuggled in my dressing gown because I have the shivers – I’m celebrating. Here’s to small victories. Here’s to something I wish I could take for granted. Here’s to walking all the way home.

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.

Self-Doubt

I’ve had some time to think about my appointment with the neurologist now, and to be honest, I’m more confused than ever. I went into the appointment somewhat resigned to having new tablets lined up in front of me, and I walked out with a completely different answer.

I knew before that not all of my seizures were caused by epilepsy, and hey, I can cope with that, even if every doctor ever seems to give me a different explanation for the phenomenon, and a different name. So far the one common label I’ve been handed (amongst a myriad of differing descriptors) is “dissociative seizures”, so I’ll stick with it for now, although I have no idea if that gives the condition I have a name at all. The impression I got the other week was that this whole aspect is a dawning revelation to the medical profession, having arrived only in the last few years. I’ve yet to brave google with any real seriousness and try to find out much more than a basic descriptor.

I guess the trouble I have with the latest prognosis – and I’d like to stress that it is a minor trouble – is how this will affect the way other people view me. At the moment, I still have the “epilepsy” tag hovering around me – that first EEG had its pesky unusual activity associated with a myoclonic jerk (the one seizure type which has pretty much stopped since I started taking Keppra). For that reason, the neurologist doesn’t want me to stop taking the tablets yet, even though I am probably taking far more than is necessary to stop what I used to call my “twitches”. But I walked away (stupidly, really; I was caught up in the excitement that I might, at last, have an “answer”) without actually knowing what is “wrong” with me any more. Do I really have epilepsy? Don’t I? Am I just suffering from a dramatic reaction to stress? I should have asked her to clarify what this would mean about my current diagnosis. Was I misdiagnosed? Or was the emphasis just in the wrong place? Where do I stand now?

None of it makes me feel particularly good about myself at the moment. I mean, I guess I’m reasonably sure I actually do have epilepsy, because my notes mention an EEG picking up “spike and wave” activity, which my epilepsy nurse told me was very typical of an epileptic myoclonic jerk. So the good news, I guess you could say, is that it’s looking increasingly as though the epilepsy side is pretty darn well controlled. The bad news, of course, is that what’s left is looking unlikely to have a simple solution such as the right medication. As long as it might have taken to find the right combination of drugs, that hope was there. Dealing with something that is entirely psychological is different, and far less predictable. My life isn’t exactly short on stress, so I’ve got my work cut out for me.

The other thing which worries me is the perception of it. Epilepsy is misunderstood, but telling someone I have seizures which are not even identifiable as that? I’ve had people accuse me of “faking it” before, as though I’m some masochist who enjoys injuring myself and sabotaging my hopes of having a stable job. As awful as epilepsy is, at least it’s a known and medically (if not casually) understood thing. Now I’m looking at something which is altogether more tenuous and indistinct, with its causes and mechanics still not fully understood. Suddenly I feel even more vulnerable. This seems to have all the disadvantages of epilepsy – involuntary seizures, no driving, massive, regular interruptions to my lifestyle – but with none of the explanations that can help me, and those around me, really understand it. It’s not a recognised anything it seems. There’s now a hugely irrational part of me wondering: “What if everyone just tells me to chin up and stop mucking about? What if they don’t believe me when I say I can’t help it?”

I think I really need to see this specialist. Next time, I’m going in with a checklist, and I’m going to come out armed with as much information as I can muster. I can’t live with all these maybes hovering around me. I just want to know what’s wrong, and what I can do to try and “fix” myself.

Why I want people to Take Epilepsy ACTION

Well, I do have news, but I’m afraid it’s going to take a back seat to the main thrust of this post. You see, today, Epilepsy Action launch a new campaign – Take Epilepsy ACTION – to promote awareness about the different types of seizure that exist, and what first aid is appropriate.

This is, obviously, something that is very important to me. Epilepsy Action commissioned a YouGov survey which showed that almost 9/10 people would not know the correct thing to do if they saw someone having a seizure. A significant portion of people would actually do something which could potentially harm the very person they were trying to help.

Now, given that Epilepsy is one of the most common neurological conditions in the world, that’s a pretty shocking statistic. It’s about time that the correct information was widely know, as people with epilepsy have had to face public misunderstanding and discrimination for a very long time.

The link above goes to the main campaign page for the Take Epilepsy ACTION page, and contains a short video demonstrating the correct first aid procedure, as well as how you can help. But I want to repost here the ACTION message to remember if you see someone having a tonic-clonic seizure (where the person is unconscious and convulses – the “typical” seizure):

A Assess
Assess the situation – are they in danger of injuring themselves? Remove any nearby objects that could cause injury 
C CushionCushion their head (with a jumper, for example) to protect them from head injury
T Time
Check the time – if the seizure lasts longer than five minutes you should call an ambulance
I IdentityLook for a medical bracelet or ID card – it may give you information about the person’s seizures and what to do
O OverOnce the seizure is over, put them on their side (in the recovery position). Stay with them and reassure them as they come round
N NeverNever restrain the person, put something in their mouth or try to give them food or drink

Remember ACTION, and call an ambulance if you have reason to believe this is the person’s first seizure (if you cannot find an ID/Medical card or jewellery, if the person has a second seizure without recovering from the first, or if the person is injured. 

Now, on to my news. I had my neurologist’s appointment yesterday, (finally!) and it has certainly given me food for thought. She thinks that the seizures I am having at the moment are all non-epileptiform attacks – in other words, they are all the dissociative seizures. This is because I have had video telemetry showing that I do have this form of attack, and the majority of EEG tests I have had show this pattern. In other words, all the drugs in the world aren’t going to fix my current problems.

I’m still not entirely sure how I feel about all this. I haven’t been told that I don’t have epilepsy – the first EEG I had did show unusual activity, and she has told me to carry on taking my medication for now. But it looks more and more like the Keppra is taking control of the epileptic seizures, and what I am left with are the dissociative ones, which are caused by, surprise surprise, stress. I’ve been referred to a different specialist, and will probably be referred again for some CBT.

I do feel a little up in the air about it all. While I am happy to go with the neurologist’s opinion, especially as there is some evidence to back it up and there’s a chance of “fixing” the problem a little, I’m not entirely convinced that all the seizures I’m having are dissociative. Many of them, yes, do fit that pattern. My non-convulsive seizures are all rather similar to each other, and these are the type that was captured on the video telemetry and recognised as dissociative. But I have never had one of my (much) more convulsive seizures while wired up to an EEG, so I’m left in limbo wondering which category they fall into. I guess time will tell. If the CBT doesn’t stop them, then I’ll know it’s more likely they are epileptic. Still, they are certainly the least common of my seizures now, so I don’t think they’re the priority at the moment.

Fit The Bill

I’m actually rather ashamed of that title, for reasons which will become self evident later on. Just thought I’d get that out of the way now, before I forget.

So, I actually had a seizure yesterday, and another today too. Yesterday’s was weird. I had an aura, and placed M safely out of harm’s way, or handed her to someone (we were visiting W’s parents, who live nearby), then instead of lying down, for some reason my brain decided it woul be an excellent idea to take a few steps across the room before giving up on the whole standing lark completely, and falling backwards. Fortunately W was there to catch me. Then, I remember my top lipcurling back/up, probably exposing my teeth. It was odd, because it almost felt numb – not my usual disconnected observation, but as though someone was holding one of those electrical impulse probes to my face and triggering the muscles randomly as they do in the occasional documentary about that sort of thing. Honestly, epileptic or not, these things are just getting stranger and stranger.

Today’s was probably a dissociative seizure (or whatever the flavour-of-the-month word for them is among health practitioners). I was more or less “there” mentally, though with the usual inside out andback to front priorities going through my head – for some reason it was vital that I both listen to W and the television. When my body feels all there but won’t respond to my orders for it to move, it probably isn’t epilepsy pinning me to the floor.

In other, more global news, a Ten Minute Rule Bill regarding Epilepsy was read out in parliament last Wednesday. I meant to mention it here sooner, as I contacted my local MP to ask that she attend (she didn’t appear to be in parliament that day, alas, and nor did her office get back to me…).

The bill will recieve its second reading in March, which apparently is when these smaller bills fail. However hopeless it may be, I shall be in contact with my local MP again to try and make sure she is there for this reading, and to ask for her support in getting it through the system. To anyone in the UK actually reading this blog (and I know my readership is um, select), I would ask that you too enquire as to whether your MP will be in parliament when it is read out, and if they could support it. Once again, apologies for the title pun. Sometimes, these things are hard to name.

Epilepsy – it’s complicated.

So, I had another seizure this evening. This one was probably non-epileptic in origin. W timed it, and it was approximately six minutes long. I couldn’t quite believe it when he said that; it seemed much shorter to me. But then, my sense of time goes right out of the window when I’m having a seizure. Sometimes it seems like no time at all, while during others the seconds drag by in a slow procession.

I haven’t mentioned the “non-epileptic seizures” (dissociative seizures is a better term, but there apparently is no hard and fast term yet) here before. It’s rather complicated, and of course the inevitable accusations of fakery arise in some people’s minds. My epilepsy nurse and the diagnosing neurologist seemed pretty convinced I do have epilepsy though, and one of my EEG (electroencephalogram) readings showed spike and wave activity, which is (again, I feel I ought to say “apparently”; I am not a nerologist!) indicative of epilepsy. Unfortunately for me, life got complicated (don’t you hate it when that happens?) and I seem to have mix of both epileptic and dissociative seizures, which are rather hard to separate at times.

What does this mean? Well, for one, my AEDs (anti-epileptic drugs) will only actually stop the epileptic fits. Hence my talking to the epilepsy nurse about lowering the amount I take, as the only way to tell if I’m taking more than I need is to reduce my prescription and see how it goes. Fortunately I appear to be in a position where any bad reactions (such as more seizures) will just be an inconvenience and not serious. Wow, I never thought I’d be glad to be unemployed. (Though I would be on maternity leave right now even if I wasn’t.)

Ultimately, no one is entirely sure what causes dissociative seizures, though often trauma in childhood can be a factor. Things like abuse or neglect have apparently shown a correlation, though fortunately neither of these apply to myself. “Trauma” of course covers a wide scope, including the pysical kind such as major accidents, so it’s possible that some sort of trauma, be it psychological or physical, has caused me to have these. Not knowing for certain, I prefer not to jump onto that bandwagon of speculation. I do know that stress tends to bring my seizures on, which is possibly why working full time has become a problem for me. Having two young children doesn’t bring them on as often as you would expect though, so who knows. I’d love to have more EEGs (despite the fact that the electrodes are stuck to your head with a waxy paste which takes ages to wash out of your hair), and try to sort out what’s what, but unfortunately, they’re rather expensive, and who knows how long I’d have to be plumbed in before they had a record of every seizure type I’ve experienced to analyse. It’s just not going to happen, and I’m lucky to have had as good an amount of medical attention as I have.

Since I started having seizures (I’m not entirely sure when that was; in hindsight I may have been ignoring what were actually partial seizures for years), they have generally manifested themselves in one of three ways (as there are over 40 types of epilepsy, that isn’t as large a variety as you might think). First, there are the aforementioned myoclonic jerks, my “twitches”. These are the ones which the EEG picked up associated brain activity for. Then I have fairly brief (as in, up to a few minutes), convulsive seizures, where movement usually focues in my left hand and/or right leg, and I do occasionally thrash around a bit. These could be either; the rhythmic motions my hand and leg make could well be part of a complex partial seizure (one where only part of the brain is having unusual electrical activity), or they could not. The third type are my longest seizures (and the most likely to be dissociative), which have gone on for up to and over an hour before now. They involve long periods of stillness (where I appear to be asleep) mixed with convulsive bursts. I’ve injured myself a good few times having the latter two of these types, mostly through hitting my head or a limb, but occasionally from scratching my own face. In my seizure today I began fiercely rubbing my eye, enough to make it quite sore.

Only on a very few occasions have I come close to losing consciousness during a seizure (as my awareness is so impaired I can never really tell whether I have or not), which of course makes my seizures harder to explain to those who know only the stereotypes. I have also had to explain to kind but misguided people before now that no, flashing lights/computer games don’t bother me, and it’s actually quite a small proportion of people with epilepsy who are affected in this way. For a relatively common condition, there is a huge lack of awareness out there about just what epilepsy is.