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.

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The Kindness of Strangers

I have a strange request. I had a seizure today, and I need to say thank you. The trouble is, I don’t know who I need to thank.

You see, I was on my own in town, and I felt a seizure coming on. Since it had addled my brain a little, the only thing I could co-ordinate myself to do was to grab my epilepsy card out of my bag, and head towards a place I could sit down. I was sat slumped on a bench for a minute or so before the seizure took hold, and I flopped forward. My eyes were open, but I couldn’t focus, so I could only see vague shapes walking past some way off. I remember wondering how many people would walk straight by.

Then I heard voices coming closer. Someone put their hand on my arm and asked if I was okay; a question I couldn’t answer. They got more concerned – a man and a woman, it sounded like. More people approached. Someone found my epilepsy card. Immediately I heard a woman call 999. Meanwhile, the man was telling people I needed to be put in the recovery position. I was lifted from the bench, and lain on the floor. Someone said: “She’s so young.” (Now that I’m back to normal, I’m flattered, let me tell you that!) A man’s hand came into view, and gently squeezed my wrist – taking my pulse, which was faint, as he said to the others.

He was worried; I could tell that much. My eyes were open and glazed, he kept saying my pulse was faint, and asked me to stay with them. In the background, someone was talking to the emergency services. The man rubbed my hands to keep them warm – he kept saying how cold they were, and checking my temperature on my forehead. Someone laid a coat over me. I finally got enough control over my eyes to blink a little, and I could hear relief in people’s voices.

The paramedic arrived, and reassured the crowd that I was okay. They went on their way, after being told I would be fine. I wasn’t back to normal at the point they left though, which means I never got to see what the people who helped me looked like, or to say thank you for what they did.

They were unaware that I could hear everything that was going on – or that I had a vague, fuzzy window on the whole sequence of events, and that I was touched by their concern and their kindness.

This is why I’m going to take a leap of faith, and ask for the internet’s help. All I have to go on was that the man’s hair was greying slightly, and he was wearing a waterproof coat, with (I think) red and black sleeves, but I’d like to try and track them down. So if you know (or you were!) the people who helped a woman having a seizure at around midday today in the Fremlin Walk, Maidstone – on the bandstand opposite the museum – please let them know that the woman in question is indeed okay now, and wants to say a heartfelt thank you for that kindness; the kindness of strangers.

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.

Impotence

It is incredibly frustrating to feel powerless. I know, compared to a lot of people in the world I am incredibly empowered indeed, but there are still times when I feel that control over everything slips away and I am helpless – particularly when I am having a seizure, but also when small reminders crop up in my day-to-day life, letting me know how much I depend upon other people. 


For example, last night W and I were both very tired W more so that myself, and really didn’t want to have to give O and M their bath. Obviously we had to. But as we debated the possibility of bathing them this morning, I spontaneously suggested to W “Oh, well why don’t I do it, and you can have a break,” before I remembered that, no I couldn’t. 


Honestly, it sounds petty – even to me after a sleep and with M asleep on my arm, but at the time I just felt briefly crushed. W was knackered, but I couldn’t offer to bathe our children so he could rest for a few minutes because it would be so unsafe. Likewise, despite having held a full driving license at one stage, there is now no chance of me driving, even when family emergencies occur and public transport is not up to the job, even when there is a car sat outside of the building in that I physically could drive, a taxi has to be paid for because I can no longer drive. 


It’s something which has been hanging over me a little for the last few days; how even simple things become that much more complex when dependence on others has to be factored in. W wanted to help his father sort through their garden the other day, and suggested that W’s mother watch O and left me with just M as a bit of a break (M is still somewhat clingy, and anyway is still breastfed). But he was going to be gone all day, and I’ve been going through a patch of having seizures all or most days, so of course I had to come too, and well, no one relaxes as well at their in-laws’ as they do at home. As much as I like W’s parents, I still feel that I have to be polite when I am in their house. Plus, when I’m at home, half the time I don’t bother with a top and just wear my dressing gown and trousers, because it makes feeding M easier. And that is quite clearly out of the question when not at home. 


I know that some of these issues will be resolved with time. O and M will eventually be old enough to be safe if I am alone with them and have a seizure, even if it is a lengthy one. When O and M are safe in the bath, it won’t matter if I bathe them alone – they would be able to hang tight and call for W if anything happened. 


I guess it’s just the principle that bugs me really. Most of the time I am perfectly capable of doing these things. I can and do wash O and M when they are in the bath, just as I dry them, dress them, talk and play with them and hold O’s hand as we walk along the road (he tethered securely to my wrist as a precaution). But because of the unpredictable nature of my health, because of that chance at any time that I could have a seizure, I can’t do any of those things by myself and feel confident. Most of the time I’m okay with that. It’s something you get accustomed to, and I know when it is safe to maybe take what can be considered a risk, and walk round the corner to a shop with O by myself (again, always tethered to my wrist; I’m not daft). It’s just that, every now and then, human nature catches up with me and I get caught out feeling sorry for myself. I make that most despised of errors – compare my lot with other people – and I find myself envying some people very much indeed.

Down Time and Safety Measures

I had a couple more seizures over the weekend, which I probably would have written about at he time had we been at home. In stead we were house sitting, so internet access has been reduced. Maybe some day I’ll be able to afford a smartphone and join the new crowd who are online wherever they go.
I also made a foray on my own with my daughter, M. This did, of course, require some planning. The people I met up with had to be warned in advance of my condition and that there was a chance they would have too look after M briefly if I had a seizure (as well as being told roughly what my seizures look like), and at every step of my time out I had to report back to W, so that he knew myself and M were okay. So, frequent “I’m okay” texts were sent. If I didn’t have a mobile phone I don’t know that it would be safe for me to take either of my children out by myself while they are this youung. As it is, I am acutely aware of the risks.

The obvious question now is of course: “Well why take those risks?” I suppose my answer will probably never be good enough to the recesses of my mind in which I question my own behaviour, but the fact is, a life in which I never take my own children out of the house without someone supervising me doesn’t seem much of a life to me, and on a day when I am not feeling so bad, as long as I take the above precautions I don’t believe that I am in the wrong. I carry a card which states I have epilepsy, and I never stay out for more than a couple of hours.

I take similar precautions at home. If W has to go out for any length of time, we make sure I am not alone. I never bathe when I am alone in the house, and I never lock the bathroom door when I bathe. I do take baths as opposed to showers sometimes, but only when I am feeling okay, and W checks on me. I don’t do much cooking – though that’s mostly because I am a disaster in the kitchen and W is a very good cook. If I am going to be in the kitchen, W is there anyway, because he is always there for me.

I suppose some people would consider it odd to have a partner who is with you pretty much 24/7. In most relationships, one or both partners works at least part time, and both will have hobbies and friends that perhaps do not overlap. Either way, most young couples at least do not spend as much time together as W and I do. The result of our close proximity can a t times put a strain on us – W feels responsible for me more than most men are for their partners; he has likened it to having three children at times. I, on the other hand, feel an intense gratitude towards him. I know that there are plenty of people out there who couldn’t handle the pressure he does, and I feel actuely guilty whenever I have a cluster of seizures as I have had this last week or so. When I am fitting, he not only has to make sure I am okay, he has to look after our children, too. On many occasions he has had to leave me fitting to attend to their needs, and that’s a horrible decision for him to have to make. I think both of us are going to be very relieved when O and M are able to look after themselves safely.

There aren’t that many other specific precautions I take, although there are many other things which I am not allowed to do, such as drive, parachute, scuba dive… fortunately I can’t say I’ve ever had that much of a passion to do most of them, though of course, knowing I can’t is enough for me to sigh somewhat wistfully when I watch footage of coral reefs sometimes. Very probably I would encounter more restrictions if I had the money to pursue expensive hobbies like this. For example, I would imagine horse riding to be rather risky. Of them all, the only restriction I regularly feel disappointment or frustration about is my inability to drive, because it’s such a nuisance, especially where visiting family is concerned. But there you go, I guess. It would be downright dangerous for me to drive as I would be a risk to many other people than just myself. Passengers, pedestrians, other drivers… it doesn’t bear thinking about.