'Tis the Season...

...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.

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.

Welcome to 2012, Year of 366 Days!

So, here we are. It's a Sunday afternoon and the rain is falling, welcoming the New Year in a particularly British fashion. It's not that cold, not at all warm, just damp and a bit grotty.

I'm not here to write an obligatory "It's a New Year, so I promise to do Better this time" post. For starters, I'm a realist, and I've started too many diaries with the best of intentions, and then by the time February rolls around, not only have I stopped writing every day, I've gone and lost the dratted things. Heck, I could say the same for about halfway through January. And then, to be honest, I don't know that there are all that many things I could say I got wrong in the last year. 

Okay, so my organisation could stand to improve (heck, it could always stand to improve), and there are things I want to achieve this year that I had put on the back burner last year (there's only so much you can get done with two children under the age of four around), but overall I don't think I did that badly. 

I had surgery twice, made a wedding dress, got married, and completed NaNo (even if the story still needs major work). That's nothing to be ashamed of, especially when you add up all the little things that get done on the side. Actually, there are a lot of little things on the side. Maybe I should have a New Year's Resolution to not start too many things. But then, where's the fun in that?

I start the year one e-reader the richer, so I think that by the time the next January rolls around I'd like to have taken at least one step towards publication in some form. I tend to stick my head in the sand a little, and have spent the last few days discovering what is rapidly turning into an epiphany about e-publishing. Still not completely sold on that one, but I could give it a go for some of the things I've written, if not all. 

And of course, my CBT rolls on, too. Next appointment is on Tuesday, so we'll see how it goes. Having seizures around big family holidays is a real drag (and I had a fair few, so I know from experience), so that would be a good thing to get under control. I'm not going to set myself a "goal" with seizures though. My inner realist knows it's too much to hope that I'll be seizure-free within a year, and yet, aiming for anything less seems a little pessimistic. 

Plus, setting goals for health sets you up to fail, and then, not only are you more ill than you wanted to be, you're down about it too, because you promised yourself in a cloud of hope and optimism that it wouldn't happen. The way I see it, making promises about things you only have a finite amount of control over is setting yourself up for disappointment when circumstances beyond your control intervene. If something stressful happens to me, I will probably have more seizures. If I'm then stressing about the stress, and the fact that I wasn't "supposed" to have any more seizures that month, I don't think it's really going to help much. 

And, in other news, O and I decorated snowflake-shaped gingerbread biscuits today. They were delicious. Biscuits and sugar are a good start to anything. That's a new family tradition, right there. 

Out of the Frying Pan...

...And into the writing trial by fire!

Honestly, for someone affected very negatively by stress, on the face of things I don't make life easier for myself. No sooner is the wedding stress out of the way than I pitch face first into a writing marathon.

Still, it's not going badly so far. And, although several people who I've told about the annual creativity drive that is National Novel Writing Month, or NaNoWriMo, have told me that I'm crazy, or it sounds impossibly hard to write 50,000 words in 30 days, I actually find it rather theraputic.


That's not to say the seizures have stopped. No, they're still plodding along at more or less one a day. Mind you, I'd put that more down to the nice little health Questionnaire that ATOS sent me a few weeks ago to make sure I'm not a fraud, and the rather daunting prospect of changing my name in goodness knows how many places (I haven't even started that task yet) or the great big wodge of a form that I have to fill out for my CBT. (Honestly, the thing would work equally well as a draught excluder. And while I know all the questions are important, filling them out has been killing my hand!)

Oh, and did I tell you I finally got a response from my MP? I wrote to her, way back in August, and apparently in September she replied. Only, somehow I only got the letter in November. Despite the fact that her office is around the corner from me, so it would only ever have to go via the local sorting office, which is, oh, let's say a ten-minute walk away? I'll be charitable and say it got lost in the post, or someone accidentally dropped it down the side of a desk or something, because she did say that she'd written to both the head of the local health care trust and Andrew Lansley, asking the former why local access to specialists was so poor, and the latter how he plans to address the "provision for epilepsy patients more generally". So, not too shabby. It may not actually achieve anything, but it's better than nothing.

And so, to round off a much-longer-than-I-expected post, here is a picture of me in wedding attire, because I've read that people who read blogs like such things:

...Well, it was the only

 one of just me.

Wait, weren't you talking about something completely different?

I have a dreadful memory.

There. It is said. Okay, I've probably said it a few times before, but I think it's time I said it again. I have an absolutely, completely and utterly, awful short term memory. I will often think of something I need to do, walk up the stairs, and have forgotten it by the time I reach the top. I have windows 7 on my computer, and so my desktop background is plastered with notes and reminders for me, and  I still don't remember to do many of the things. Ooh, hold on, I've just remembered I need to phone up for my prescription. Hold on.

Right. Done that. Also got sidetracked and forgot I was writing this blog for about twenty minutes. Honestly, I'm not trying to prove a point here. It just happens.

I've also managed to get less than a month away from the wedding and have made less than half of my dress. I'm hoping it will all magically come together at the last minute (and, in fairness, things often somehow work out that way for me - well, they always did at school, anyway), but the reality is that I am going to have quite a few late nights or long days sat at a sewing machine, and by the time the big day rolls around, I will probably be sick of the thing.

Still, I am getting there, and the obstacles that were holding me up (not having the shoes/supporting undergarments I needed in order to know my exact measurements for the day) are now sorted. I shall, I can exclusively reveal, be wearing ankle boots on my wedding day, on account of the fact I cannot walk in heels.

Also, I didn't have a seizure yesterday! I can now safely cross my fingers and hope that the wedding will be another one of those lovely seizure-free days. W is worried that the stress of the day will be too much for me, and that I'll have a seizure at the reception. While I'm of the opinion that, well, it beats having one in the registry office, I will admit that I'm just a little nervous about it all. I can handle the fact I'm getting married. I can handle standing in front of people and having to say stuff. Heck I can even (just about) handle being the centre of attention for a day. I really don't want to handle a seizure on top of it all. I'm only going to have one wedding day. I don't want epilepsy screwing it up. Please?

Oh yeah, I started by talking about my poor memory. Oops, I kind of segued that post a little, didn't I. See what I mean?

Some things change, and others just stay the same...

This morning, O went to Pre-School. It's not quite as a big a deal as it could be - last term he was going there one morning a week, but this term he will be going four days a week, two of them whole days, so it does represent the start of his life moving ever so slightly out of my control, which is a little scary. (As I type this, M has approached me and hijacked my lap, so I'm not completely bereft yet. And stop whacking the keyboard, you pesky little thing!)

It's been strange this morning, only having the one child to look after again, and knowing that this will be increasingly how things are over the coming weeks. Next year, he will be at school, and the year after that, even M will be gone in increasing amounts. Well, that's a long way off, but I tend to react this way whenever anything changes - I start envisioning further changes and how those changes may cause more changes, and how that will, ultimately, turn my eternal quest for routine on its head again.

Perhaps unsurprisingly, I had a seizure this morning. Well, I had a seizure yesterday, and two on Saturday, so this isn't particularly news, although it's unusual for me to have seizures in the morning. I guess it's probably all that contemplating about change. I have this paradoxical love and hatred of things being different. On the one hand, doing the same damn thing every day and never being spontaneous drives me mad. I hate it. It's dull. On the other hand, too much change, and I can't keep up. I start to forget things more - especially my medication, which then means I have more seizures, which then means that things change again as I have to adapt to the limitations that imposes. For example, this summer I have had more seizures (a lot more) which has meant I haven't been able to take O and M out. This has obviously had the knock on effect of having to entertain them more within the confines of our house, take O along on the occasions where we do go out to stretch his legs and offer some variety, and lean rather more heavily on W's parents and their larger garden to offer him somewhere to run around.

It has made me feel a lot more under pressure, which hasn't helped. I must admit, to a certain extent I have been counting down the days to this just waiting and hoping that it will offer a reprieve for my health. It quite possibly won't - after all, I still have M at home with me, and I still have a wedding in...less than five weeks. Yikes, I should probably get to work on that skirt, shouldn't I. (Actually, I'm remarkably laid back about that, all things considered. I worry W, because I have an unfinished top and no skirt at all, and my opinion on the matter is, "Eh, just chill, I can get it done!")

Anyway. O is back from his first morning of the term now, and says he had a lovely time, just playing with toys and "the other kids". Hmm. He also says he didn't go to the toilet, he "just pretended to wash his hands" and he didn't have a snack or a drink. I think perhaps he is not the most reliable person to ask. Tomorrow my mission will be to find out what he actually gets up to during the day, at least vaguely. While I wouldn't be surprised to find he has told me a whole heap of codswallop about his morning (he is, after all, three years old), it also wouldn't be impossible for him to have slipped through the net on a chaotic first day. He does have a tendency to get so wrapped up in play that he doesn't want to do anything else, and I know that the pre-school have a more free-form attitude to snack time than we do here at home. They have to go and get the snack themselves, and I wouldn't put it past O to have just not bothered, while they might have expected him, as a child who has been before, to know what to do and be more focused on the children who are brand new.

Oh, look, I've found something else to worry about. I think my brain has it in for me. Why can't I take my own advice and just chill?

Waiting Makes Me Think More.

The waiting game is telling on me now. It's so frustrating to go week after week with the same problems, the same hazards to my help, and know that all I can do is sit tight and carry on as I am, waiting for the appointment where I might start to get some help. It's made worse by the fact I don't particularly expect that appointment to change anything overnight for me. Apart from surgery (which isn't an option for me) nothing can change your epilepsy overnight. Certainly not in a good way, at any rate.

What's possibly the most frustrating thing is how my health directly impacts how my whole family lives. Because I cannot work due to my epilepsy, it is also not safe for me to be at home alone with O and M. That means that W cannot work either. Well, okay, he does work. He gets a princely £55 a week for working 24/7 as my carer. Thanks, The Government. That'll keep us going.

We survive because of the welfare state. Housing Benefit, Child Tax Credits, Child Benefits, DLA and ESA, for which I am in the "Limited Capacity to Work" category. Apparently ATOS thinks there is something I can do, and okay, at the time I had the interview there was. It's just that my health has gotten a lot worse since then but I can't face the additional health interviews which would result from me telling them. Likewise, I should probably have informed the department in charge of the DLA, but I figure that not telling them things are worse is better than telling them things are worse, and then having to go through all the hassle again when they fix it and put me back where I was when I started getting DLA in the first place. All that paperwork really stresses me out, and is only likely to make me have more seizures anyway.

So we are stuck. We started renting our house when we were both working and I was pregnant with O. So it's a two-bedroom house, quite small. Now we have M as well, and they will have to share a room soon; M currently has her cot squeezed in next to our bed. Neither situation is ideal. O is a heavy sleeper, but still wakes in the night, and makes noise when he does. M sleeps through, but gets woken by noise and still doesn't settle herself back to sleep. When she wakes, it's for at least half an hour. Nor O's room a good size and shape for two children and their things.

We can't move, either. Now that we receive that nice list of benefits, most of the landlords and agencies around here don't want to know. And I'm not well enough to trawl around them all proving that I'm a nice person really, not one of those nasty "benefit cheats" that everyone knows cheat their landlords and trash houses, while filling them with large televisions. The negative stereotyping everywhere gets me down, frequently.

Still, I refuse to be ashamed of my life. I refuse to hide from the fact that no, I am not working, and yes, W is at home during the day as well, since he is a full-time carer earning a fraction of the minimum wage. Personally, I don't think being ill or disabled is something you should have to be ashamed of. And, given the amount of stress and pressure that W is under, and the absence of any real time off he has, I think people who are carers should be lauded from here to eternity, and not suffer the implication that the people they look after are feckless scroungers.

I find myself defiantly holding my head high. Something completely beyond my control has put me in this position, and I refuse to allow it to beat me. I will get better, however long it takes. I will  find a job somewhere, and I will not let it crush my spirit.

Stalling

I've been stuck, the last few weeks, stuck on a repeat loop where nothing ever really improves. Nothing's getting worse, either, but when you get to the point where you're thinking that's a good thing, you know life has taken a fairly rubbish meander. In other words, it sucks.

I'm still cracking on with the things I need to do - wedding planning, house organising (with the help of W - we bough a bookcase for our DVDs the other day which he assembled. When we had got them all in we wondered why we hadn't done it before...), and child rearing. All the "ing"s. All except for "improving".

My seizures are still on average happening once a day, usually afternoon/evening time. I think I went a day without a few days ago, but, really? That's nothing special. A year or so ago I was hoping that someday I might get my driving license back - now it's looking more like a pipe dream with every day that passes.

To get my license back, I would have to go a whole year without seizures, then apply to the DVLA, who would check with my GP and specialists to make sure this is true, and then I'd have to go through the rigamarole of updating my details and getting it back. All without having any seizures at all. Any time I have one, even a "little" one, I go back to day one of my 365 point countdown.

Then, of course, even if I did get it back, I'd have to re-hone my driving skills. It has been six years since I last drove anywhere. Would you trust me behind the wheel? I certainly wouldn't. In the even this happens, I will be getting a couple of driving lessons as a refresher.

Actually, I'm going to stop dwelling on this one. I'm starting to remember how it feels to have the freedom of a car, and it's just making me miss it all the more. I get by well enough with public transport. It will get better when M can walk and we don't need a buggy. And better still when W can drive, assuming we can afford a car. At least we have family nearby who can help us if we really need transport at non-bus-friendly hours.

Achievements

Yesterday's big achievement was not having a seizure.

I had hoped that my this point in my life following epilepsy diagnosis "not having a seizure" wouldn't be such a big deal, but, well, there you go. Life and its curved balls, eh?

Today's achievement will hopefully be to go two days without a seizure. Again, small potatoes here, but after the last few weeks, I'm aiming low while hoping high. Because of course, hopefully this bad run of seizures will need on its own, as ethereally as it began, and hopefully life will continue on its merry way, and I will feel confident going about my daily business without W shadowing me to keep me safe. After all, I have children to raise, books to write, and a wedding to prepare for.

The biggest frustration for me having seizures as often as I do is not a concern that I will suffer long-term, or that I will be injured having a seizure, as it is for W. I'm almost embarrassed to admit how complacent I can be about my seizures at times, because they almost never deviate from their regular pattern of me being debilitated, me coming round enough to merely be groggy, and then me being okay. I've come to terms with the fact that they happen. As much as I acknowledge the concerns that other people have for my health during a seizure, the biggest problem I have with them is how annoyingly time-consuming they are.

When you have a to-do list as long as your arm, taking a time out that ranges from twenty minutes to over an hour is a luxury that you can't afford. Yet that is what having a seizure forces me to do. Sometimes more than once a day, because as well as the seizures I've been having a lot of auras which have been severe enough that I've had to lie down. In the last few days I've had far too much down time, and it's put me a long way behind. And of course, the stress of being behind schedule doesn't help reduce their frequency. It's like being caught in a downward spiral.

I'm clawing my way back up it now. Tomorrow, W's parents have offered to take the children all day and overnight, which takes a lot of pressure off for a while. I can't honestly say I expect to work flat out all day, because I'm human and I know I'll rejoice in the lack of constant responsibility by slacking off. I don't think there's a single parent out there that wouldn't agree. But my list won't be forgotten - if nothing else because it's plastered all over my desktop on virtual post-it notes which I don't get to delete until they are finished. Hopefully that should be enough of a reminder, eh? I'll let you know how it all pans out.

Withdrawl

Well, I am officially not taking Clonazepam any more. On my GP's advice, I have weaned myself off, and tomorrow (Monday) I shall take the remaining tablets back to the pharmacy.

It was a nice try, I suppose, and it could have helped, so it was worthwhile. It's still a little frustrating to be back to square one, especially after all the trouble I went through while taking them (including having a seizure out in public on my own which could have ended rather badly as it happened about twenty seconds after I crossed a busy road), but, with a little hindsight, I know that I run the same risks when I start taking any new medication.

There isn't a cure for epilepsy, and there possibly never will be. There certainly won't be a cure for my kind of epilepsy in my lifetime. All I can really do is to try and stay positive, and not get so worked up on the negative stuff, as I have been doing lately.

Still, it's all very well me saying that. I'm human, I expect to write ranty posts in future expressing my rage and frustration at the world. I'd be a bit creepy if I didn't. I also believe that sometimes it's only by getting angy and taking action that we get anywhere. It wasn't until I got fed up with being fobbed off by the hospital delaying my neurologists appointments indefinitely that I got my appointment in September. It wasn't until I get cross with the Epilepsy Nurse's team that I rang up to work out what was going on and realised I'd been mistakenly dropped off the list. Sometimes, being calm and taking things in your stride is the wrong thing to do.

Still. The important thing is to strike the right balance. I'm not going to let my epilepsy bully me into sitting at home all day, afraid to go out, as I have been these last few weeks. Nor am I going to just say "to hell with it" and start running risks, because that would have serious repercussions for myself and my family. I do think i need to take another look at what I do with my time though. Taking these new drugs and seeing how much worse my life could be (how it was before I started the Keppra, essentially), has made me want to be more productive with my time. I've been wasting a lot of it recently just moping, and that isn't doing anyone any good.

Late Nights

It's one o' clock in the morning. (Thereabouts.) Normally, by this point, I would be asleep.

However, seeing as I'm not, I thought it a good opportunity to continue the musings of earlier, to the relaxing sound of Brahms' Lullaby on repeat (courtesy of YouTube). M won't go to sleep, you see. It's a modern parenting thing, honest...

Anyway. Yes, musing. I think the chief difficulty is that there is so much that I need/want/crave to be foing outside the house at the moment, and 95% of it is on hold because I am still having seizures daily. The one I had earlier involved a lot of what, were I religious, could be described as speaking in tongues. I apparently told W that I itched inside, and wanted to run and run. I probably also told him a great many other ridiculous things, but the running part sticks in my mind.

I had planned to run in the Race for Life this year, until the Gall Bladder episode put an end to that. (Still, next year, eh?) I planned to do a lot of outdoor activities, including buggy walks, taking O and M to the park, walks along the river, that sort of thing. Instead, I am sat here most days, inside a fairly small house, with everywhere and yet nowhere to go.

Leaving the house is like an expedition to the Sinai sometimes. Have I got my bag, yes. Coat? Phone? Am I feeling okay? Keys? Epilepsy card? Am I sure I'm feeling okay? Do I need an umbrella? Have I got the changing bag for O/M if I am taking them? Am I really really sure I'm okay? And I'll only be going straight to that one shop and then home again, right? And I'll have my phone on and in my pocket, and will answer it this time, right? Right? Okay, then out the door, no stress, no pressure, just going for a quick jaunt to one shop and one shop only and then straight home again before I fall down and start telling people the sky is green and pink at the same time. (No, seriously, if you are nuts enough to look at the sky on a clear day for long enough, this optical illusion actually happens. Blame my sixteen-year-old self for being boring and not kissing boys.)

The whole palaver does make me reluctant to go out though. It gets to the point where it's just so much hassle, even for things which are relatively run of the mill, such as taking O and M to parent and toddler groups. Some days I just can't muster the enthusiasm. It's just another day, just another group, and tomorrow I'll be just as incapable of doing things other people take for granted, like being spontaneous.

I bought myself some cheap earrings today, just because I was walking past the shop and there was a sale. I honestly can't remember the last time I was out in town and I just decided to go and buy something like that, and W wasn't there with me, being all manly and not understanding window-shopping at all. It was just a few precious minutes, but it was for me, and it was spontaneous.

I miss that the most, I think.

The New Normal

So. It would seem that, for the time being at least, my seizures are going to happen almost every day. I have actually had two seizures today. One first thing this morning, and another this afternoon. Unfortunately I didn't get to see the epilepsy nurse today as she was ill, but I should be getting another appointment in the post. Well, it fits the pattern, I guess.

Well, that's a little unfair. I phoned my GP today on the advice of Epilepsy Action, and to my amazement, he was able to book me an appointment at my local hospital for September. You know, the same hospital which told me that there were "no clinics". And he was apologetic for it being so far off. He looked for sooner appointments at hospitals further afield, but alas, the wait seems to be the same wherever I go. To be honest, I was actually quite impressed with how soon I'll be seen. The deferral letters I had been getting had been putting me off for six months at a time. I feel a bit of a tit now for not having kicked up a stink earlier.

I have also been promised a prescription for some new Anti Epileptic Drugs to try and reduce the seizures, with an appointment in a couple of weeks to see how I'm getting along. I may defer starting those until after my operation though. I don't think that I should be introducing new active chemicals to my bloodstream if I'm about to go under the knife.

All in all, things are looking...different. I wouldn't go so far as to say they're looking "up", but at least they aren't worse. Time will tell on whether these new meds are going to do anything, but until then (or if they don't), things are quite stressful. Planning to accommodate an all but expected seizure every day is very different to having contingencies set up just in case. I can feel myself already slipping back into the old fear I had when I was waiting for my diagnosis, when I spent an entire summer more or less indoors because I was scared to go out. That summer I developed an almost unhealthy addiction to a particular online multiplayer game, and I really don't want that to happen again (even though its sequel is now perfectly timing its sort-of-imminent release).

See, I'm still cheerful really. I can always tell how badly something is affecting me long-term by how I feel after talking/writing about it for ten to twenty minutes. If I'm still in a good mood by the time I finish, then the chances are that it's a passing low. It's not the end of the world unless I stop joking and laughing.

Actually, I think it's one of those few times where my utterly catastrophic short term memory comes in handy. I live so much in the present tense that it's hard for me to focus on the crap things that are happening if something else distracts me. The minute I spot an interesting book, or fire up the web browser or start chatting to someone, off my mind goes, flitting around and forgetting what it was I was so mopey about. I always remember again in the end, but at least it means I'm away with the fairies enough to not get permanently down. (The major downside to this is that I normally forget to do pretty much everything that isn't right in front of me. I have to keep my medication out on the worktop or I forget to take it.)

Change of Pace

Okay, so I'm having my gall bladder removed next Saturday. I knew it was coming, but only actually got my appointment on...Tuesday, Wednesday? Maybe as early as Monday? Either way it was hardly the four weeks' notice I was promised. Still, I've come to expect that sort of thing, and at least it gets it out of the way.

The fact that I have epilepsy, for once, doesn't add a major complication to things. In fact, I actually had a seizure in the pre-assessment unit waiting room on Friday, and while it was a pain, because it meant I got bumped to the back of the queue and we ended up being there for about four hours (no exaggeration), the sister there was remarkably relaxed about it - she said her son had epilepsy - and just let me get on with it, saying that since we dealt with it all the time, if W said I was okay, she believed him, and to let her know if we needed anything.

The seizure itself wasn't that bad, either, although it does seem to be a sign that my seizure frequency has increased somewhat dramatically. I've gone from a few per month to having them almost every day, which makes a massive difference. There's a lot of ground between thinking "am I going to have a seizure this week I wonder" and "will today be the day I don't have a seizure this week". With the former, you can plan to do things, and if a seizure happen you work around it. Now, we're working on the assumption that I will probably have a seizure almost every day, and W is constantly watching me, looking for erratic behaviour that could be a sign one is imminent. He almost always knows I'm going to have a seizure before I do, simply because I don't pick up on the fact that I'm feeling weird until I've had the seizure and start feeling better again. It puts a lot of pressure on him, pressure which is only going to increase in a week when I will be hampered by needing to recover from keyhole abdominal surgery.

I keep telling myself that once it's done it's done, but it never quite seems to happen that way. There's always another hurdle round the corner that I have to jump. Ack, and now I'm feeling sorry for myself. Things aren't that bad, really. The good in my life definitely evens out the bad. It's just that every now and then a cluster of bad comes along and it's a little harder to focus on the good points. I'm also really not looking forward to the operation. They've said to expect an overnight stay, as I'll quite probably have a seizure when I come round from the anaesthetic (I'm 99% sure this happened when I had my wisdom teeth out in January), so they'll want to keep an eye on me. But this will be the first night I'll have been away from M, and she's been so clingy lately that I'm as worried about how she'll be as I am about having a minor organ removed. It doesn't help that  I have a tendency towards unnecessary paranoia, really.

Still. This time next week that part will be over. I should be home again (admittedly, I'll be in a lot of pain, but still), and I can focus on getting better, and readying myself for whatever is coming next.

Interruption

Well, today was...a pain in the backside, to be frank. The morning, at least.

I normally take O and M to various parent and toddler groups during the week, as a way of getting out of the house and giving W a break. He often walks us to them, and then meets me at the end, or not, depending on how I'm feeling. This has never been a problem. Apart from today, when I had a seizure in the middle of the session. Great.

I feel awful about it, really. I mean, I'm alright, the same as ever, but the people there were not expecting it, and I feel a bit rotten about adding to the existing chaos that is ever present around a collective of toddlers and babies. I was "out" for about four minutes apparently, though I'd put it at about half that, and fortunately I was both sitting on the floor out of sight of most of the children, and didn't thrash about at all. There were also several pretty level-headed people there who looked after me, although they did call an ambulance even after I came around. Just to be safe, you know. I can't blame them for that. Without knowing me well, it would be unsafe to take chances. It's just a little frustrating because I was still groggy enough to go along with it, but there enough to know that it was really a bit of a waste of time. I now have another heap of paperwork to add to my ever expanding medical file.

The other thing that unnerved me was that I think this is the first time I've had a seizure with O and M around but no other close family. Poor M had to be looked after by someone who was a complete stranger to her, and by the time I was well enough to hold her again she was pretty upset. It took her a good five minutes cuddling me to really calm down. It's times like that when I feel a rotten mother. She was still clingy when W arrived, although she did have a Daddy's girl moment when she saw him.

I look to the future sometimes as a positive thing, especially on days like this, because I know that the problem of what to do with O and M when I have a seizure will lessen. O barely noticed that anything had happened as he was busy playing, and I know in a couple of years M will be the same. But at the same time, I'm fully aware that "the future" isn't just a miraculous fix-all that will arrive and solve all our problems. New ones will arise, regularly, and I will still have to adapt and work around them. How will parents of other children feel about them coming to our house for tea should W be at work when he doesn't need to be a full-time carer any more? How would the children themselves feel? What about the infamous wait at the playground; if I have a seizure when collecting O or M from school, pretty much everyone would see, and while that doesn't bother me (I refuse to feel ashamed for having epilepsy), it might others.

There are other problems, I expect. I don't really think about it too much, because when I do, like now, I start to worry about all sorts of things there is no sense losing sleep over. What will be will be. O isn't at school yet, so there is no sense worrying about what happens when school-friends visit. Likewise the playground pick-up. Besides, W will have to remain my carer for some years yet, as today made readily apparent. In the short term, the group I was attending have asked to have a better action plan for the inevitable next time, so that they know exactly what they have to do. That will help considerably. Medium term? I plan on getting a medical bracelet. Still haven't gotten around to that yet, but I really must.

Tis the Season...

...Of birthdays. Three out of my four-person household have birthdays this month, and numerous family members (and friends) have either had their turn in March or are awaiting it in May. It sure is a hectic few months.

It also means many shopping trips and family visits, which throws my (vague) routine completely. I hate it when that happens. I have a really lousy short-term memory (I remain unsure as to whether this is epilepsy related or just genetic as no one has ever really looked into it; I guess they consider the seizures a bigger issue) so anything which changes the few things I regularly do without fail can make me a little tense at times. I'm not talking about having lunch half an hour later, or things like that, but staying with relatives overnight, or letting O do so more than once a fortnight can be enough. If things really start changing around, I usually end up forgetting my tablets at least once. Hmm, maybe I should get my memory checked out...

Anyway. This happened a few days ago now, so it's essentially old news, but it's still a bit of a big deal for me. W, M and I were grabbing baby bits before an overnight stay with W's parents. We were in Boots, last shop on the list, when I started feeling peculiar. I can't remember now whether or not we had paid for things yet, but W saw me standing staring vaguely off into space clutching at the bags I was carrying, and got me to a chair.

I get very...distracted? Confused? Disoriented? None of those word really matches how I actually feel when I have a seizure, but they'll have to do, I guess. It's like trying to describe a specific colour or a smell. How can you do it unless the other person has experienced something like it already? I often fall down on my intoxicated analogy, but that only really goes so far because I don't drink often, and have only been anything more than tipsy once or twice, so my knowledge of drunkenness is second-hand anyway. (Not to mention the everyone being different thing about alcohol.) Anyway. The point is, this is essentially my brain warning me something is up, but I'm usually too busy staring at everything and nothing and trying to remember that thing I should be doing, oh, what was it, I know I was thinking it just a moment ago, it was, it was...oh crap, I appear to be having a seizure.

W was just explaining to the nearby cashier that I have epilepsy and it is "known" that I have seizures, so it isn't something to panic over (and actually, she was remarkably calm and matter-of-fact about it, which was a nice change) when I pitched forwards and they had to lunge and grab me to stop me cracking my head on the floor. (I have done that before, and let me tell you, it really hurts.) While I was down there, my eyes were flickering around a lot (they roll a lot during some seizures and do nothing at all in others) so I couldn't really see, but I could hear him talking to staff who were talking about how long the seizures usually lasted and whether they would need to call an ambulance. (At this point I groaned inwardly. I hate seizures in public far, far more than those at home for this reason alone.) Surprisingly, however, they actually listened to W when he told them it wasn't necessary as this fitted the pattern of my "usual" seizures, and I would be alright. Someone even thoughtfully provided a head rest for me - a pack of nappies, which was actually a lot nicer than the floor .(I found out afterwards it had been a random passerby, which makes the act that much nicer. He had just brought them over to cushion my head, then carried on where he was going before.)

By the time I came round fully, the first aider had arrived and was talking to W, and they both helped me back into the chair. The first aider fetched me a cup of water, and M was put back in her pram (W had taken her out while I was on the ground, and then draped one of her blankets over my midriff to keep me warm). I wasn't exactly back to normal, but I was certainly well enough to walk home, which we did straight away (the  staff were relieved to hear that we live only a few minutes' walk from the town centre).

After giving M a quick feed, I went for a lie down, and actually zonked out for three quarters of an hour. That certainly brought me back to normal.

So, why have I bothered detailing such a generic seizure? Nothing bad happened, right? Well, it was yet another wake up call, and it's made both W and I even more wary of me being with O or M by myself. But also, as awful as this sounds, I was actually happy after that seizure. Not happy happy, I mean that, but almost every time I have had a seizure in public someone has phoned an ambulance, and that starts a cascade which usually results in me coming round from the seizure either as they arrive (rarely), as they load me on board (less rarely) or en route to the hospital (most commonly). In each of these scenarios they are still duty bound to take me to A&E, who then have to check me over and then discharge me, which takes ages because I am quite obviously not a priority case. Usually I am at least a little sleepy following a seizure, so I don't exactly look back to normal either. (But, drowsy or not, I am still well enough to go straight home.) I would never complain about the treatment I receive, because although I know from past experience that I am fine, they do not (and it's best not to take chances when there is a diagnosis of epilepsy because it is a serious condition, and while I might be okay, many other people may really need medical intervention). However, it does take a large chunk out of mine and the NHS's time, and I do usually end up feeling like a fraud, sat on a hospital bed in A&E when I know that I am perfectly fine.

I do have a point, buried in here somewhere. I would never advocate a blanket policy of not calling an ambulance if you encounter someone having a seizure. No no no. There are times when, absolutely, someone is having a seizure, they've injured themselves or it's been going on way too long, or you look for an epilepsy card/medical jewellery and there isn't one (which means they may not be epileptic, in which case this may be unprecedented, or from other causes and really needs checking out), and an ambulance is the right call.

But, on the other hand, more than one in every hundred and fifty people have epilepsy of some form. It isn't as rare as you would think, because that actually isn't that large a number. Towns have populations in the thousands. Cities in the millions. If you encounter someone having a seizure, if they have epilepsy, chances are they will be carrying a card stating this, or wearing a medical bracelet/necklace. That will tell you whether or not an ambulance is needed. I have a card which I always carry in my bag. I think I should probably laminate it, stamp a hole in it and stick it on the outside sometimes, because no one ever thinks to look. Most of the time - if W isn't there, at least - people see me on the floor and pretty much the first response is "Oh, we should probably call an ambulance". It gets pretty sad when I have a seizure and I am genuinely happy because I didn't end up hospitalised.

Oh bother. This has turned into another rant. Never mind. At least I got to make a point in the middle. Seriously, most people who have serious conditions carry information about it on their persons somewhere. I have had... many, many seizures while out and about, and no one has ever looked for the card which I have carried around with me since I was diagnosed. Fine if someone looked but they couldn't find it (I do probably need to find it a more prominent pocket) but no one even looks.

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.

Benefit Cuts.

Honestly, I don't know what to make of all the cuts in the welfare budget yet. So much of it is subject to speculation, or relies upon medical assessments that have not yet been rolled out.

What I do know, however, is that I have no security for the future. The next few years rely on a wing and a prayer, and the hope that some arbitrary figure will not decide that I am no longer disabled because I don't look it, or because the government can no longer afford for me to be.

What is "disabled", anyway? I don't feel it, most of the time, but whenever I fall to the ground involuntarily, and start twitching and shaking, or stop breathing, my opinion changes pretty rapidly. I guess not being able to look after your own children alone is pretty disabled. I'm certainly disabled enough to not be permitted a driving license, too, and nor can I go skydiving, abseiling, rock-climbing, scuba diving, or anything else which requires you to be alert at all times.

My son is two years old and I have never bathed him without supervision. I won't be able to until he is able to look after himself, and the same goes for his little sister. I will never drive my children to their friends' houses, or take them swimming by myself, because it's unsafe. I can't even have a bath myself unless someone else (preferabbly W) is in the house with me.

That's not to say I don't take risks. Just that, to me, taking a risk is leaving the house by myself, and being alone for an hour or two.

I've gone a little off-topic here, but maybe that's because the whole subject is off-topic. Yes, we all know that (to a greater or lesser degree depending on who you talk to) the UK is in serious financial difficulty. But taking money from the poor and needy, who have so little to give, while failing to adequately chase those who try to duck out of paying their fair share is equally off-topic. I know you can't always trust what you read, and subjectivity abounds when politics rears its ugly head, but when huge companies avoid paying several billions in tax from year to year and are allowed to get away with it, it seems to me that you're missing the boat. If that figure of £6 billion which Vodaphone alone is reported to have avoided paying is correct, then the money taken from the sick need not have been cut at all.

Brain Malfunction

Today I had a seizure.

It's been a bit of a while I guess (a good couple of weeks), so maybe I should have seen it coming, but when it hit, it came completely out of the blue. One minute I was fine, happily playing with my two young children, the next - flump.

Every seizure is different. Some are short, violent affairs; others long, slow minutes of paralysis; still more are unpleasant mixtures of the two. This time, sat propped afainst the sofa, my head fell back and my eyes closed, as my body slumped. my son, O, came over and said "Mummy, wake up," a few times, clambering on and off my lap while he tried to get me to play with him (he is two), while my daughter, M, sat in her bouncy chair, unaware of what was going on, as far as I know. She is three months old.

I'm not sure how long it was before my partner (and carer) W noticed. Perhaps a minute or so. The seconds blur and merge with minutes in my memory while I'm fitting, sometimes shrinking, sometimes stretching out and doubling or tripling the percieved time I am 'out'. W rushed over, of course, and made sure our children were safe. This is why he cannot work - although 99% of the time I am fit and healthy, that remaining 1% when I am a hazard to myself and them could come at any time. Ironically, I would be safer at work, though no one wants to hire me.

My eyes opened at some point, after I slumped forwards and hit my head on the floor, but before W was able to lie me on my side.They screamed for me to blink, but until that particular spasm passed remained open, unfocused and staring straight ahead into W's body. It is disconcerting to be able to see but not choose where your eyes are directed. Much as it is disconcerting to watch and feel your body doing things you have no wish for it to do, such as tremor, spasm and jerk violently.

Now I remember. Before W was able to lay me on the floor, my right arm curled up and over my shoulder, straining to contort in peculiar shapes. I remember this because it was stretched to its limit, pulling on my joints to bend further. My eyes also rolled, and mercifully closed, and I think my son tried to climb on me again, because something pressed down on my legs. W was shouting at him to mind out of the way, at any rate, in between reminding me to breathe. This time I was able to comply. On other occasions I was not, and had to be nudged, hard, in the ribs.

My arms and legs continued to spasm for some time, and M began to cry. She was hungry; wanting milk. She would have to wait for a few more minutes, for although the seizure was reaching its end, I was still unable to respond other than by briefly squeezing the hand W put into mine. First my body stilled and went limp, then, gradually, normal brain function resumed. Speech came after movement, this time. Sometimes it's the other way round.

Finally, head aching, I felt able to lift myself and sit on the sofa. After another minute or two I was back to normal, and able to hoik up my top to feed M. At least the accompanying tiredness which follows my seizures is something I'm used to as a parent anyway. Before I made it up there, O had given me a cuddle and told me he loved me, happy now that Mummy was back to normal. W told me that this time M looked concerned while it happened. I don't think I've had one while she's been awake before, so that's not surprising I guess.

So now? Now I get back to the business of looking after two children, jot down the date, and mark it as 365 days before I can start the process of reclaiming my driving license (as the timer resets each time I have a seizure, I don't expect to reach this goal any more). I'll chalk it up to the epilepsy which has more or less defined my life since I was nineteen.

Then I'll wonder in the back of my mind how long the countdown to the next seizure will last.