Christmas concerts have changed.

So, today was my son's Christmas Carol Concert. Now that he's in year 1, and no longer in the semi-partitioned world of Foundation, he gets to participate with the rest of the school. I'm writing this, feeling like I've crossed over the threshold into the mythical world of the "School mum". As though last year and the weeks of this one so far didn't count.

Still, this is the first time I have felt compelled to write about something specifically and only relating to my children on here. So maybe that is a rite of passage of sorts.

You see, I was a little sceptical about the children having only a "carol concert", and no nativity once they were out of Foundation. I'm no practising Christian - I'm thoroughly agnostic with a logical leaning for much of the time, but I guess I can be pretty traditional about some things. And there's something nice, isn't there, about trotting out to see your precious child say nothing at all in the school play while the children of the more prominent PTA members get to be Mary and Joseph. (The highlight of my Nativity experience was being a rag doll in Santa's workshop, captured for milliseconds on gloriously blurry VHS.)

That was how it was done, right? When I was at school, costumes were home-made and nigh unrecognisable. You sang Away in a Manger tonelessly and raggedly, while the teacher who could play the piano trotted out her repertoire on an upright which was only a little out of tune. And there was a good chance the parents could understand at least one word in three of Silent Night.

This year, I sat near the back of a hall at the neighbouring secondary school, watching my son stand with his year group singing a song about Christmas crackers, after which they marched off the stage to let the next year on. There was no piano - instead, a very polished CD was played which the children sang along to, and tried to be as loud as the rather more in-tune children's choir it featured. It was a lot more slick and jazzy, but somehow, I couldn't help feeling as though something had been missed.

The only year group which do a Nativity at my son's school are Foundation. Well, last year the Boy was sick on the day we were to go and see it, so I was unable to see his performance as a "Non-talking Shepherd", and it looks as though that was my only shot. maybe it's just my bitterness at missing his one and only Nativity, but I can't help feeling that sitting children in rows so they can sing along to a bunch of other (no doubt older) children singing better than they can is slightly missing the point.

I don't go to a primary school carol concert looking for polish and quality. I go to see my son, and as much as it might make me a bad person, I don't care about the other five years, all singing in turn. Or even watching 360 children standing in a group singing a song I have heard a rather more flat version of at home for the last fortnight. Especially when I know that I'm not hearing him anyway. I'm listening to a CD, played out on speakers because 360 children means a whole lot of parents and the borrowing of a secondary school's hall to accomodate them.

Call me old-fashioned, but I think I would have preferred what my parents got. An out of tune piano and a rag-tag of children who sing their off-key hearts out, missing or forgetting words and generally sounding like what they are. Children. Our children.

When did it become the done thing to replace their (let's be honest, not very good) singing with the singing of some other people's children?

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.

Guilt

I don't like thinking of myself as disabled. I try not to, as far as possible. So the times where it's unavoidable prickle all the more. I don't like the fact that, some days, I have to go and have a lie down just four hours after getting up because I'm having an aura and bed's the safest place.

I don't like the fact that M misses out on going to groups, just as O often did. I don't like the fact that I often injure myself while shaking and thrashing (I had a nice red mark on my forearm the other day). I hate (with a fiery passion) the fact that W spends his days watching me for the moment when I start acting differently.

I can live with the seizures. Well, I have to. No one's found a way to make them stop yet, and even the CBT guy said they couldn't guarantee it would put an end to them, only that it was very likely to help. I can even live with occasionally beating myself up; pulling my own hair, scratching myself, throwing limbs into furniture, you know. I managed to wrench my arm yesterday, which was a new one. For one brief, painful moment it felt like I was dislocating my shoulder. I tell you what, that really hurt.

Still, it's not a lingering thing, like the guilt. Guilt's a funny old thing really. Rationally - of course - I know it's not my fault and that there's no need for it, but then rationality doesn't really feature much in any human emotions. When my seizures affect W, O, or M directly, I feel guilty.

It was one of those brief windows in which I was alone with O that I feel most guilty about at the moment. I started having a seizure. W was upstairs with M, and it came on fast enough that I couldn't call up. I staggered over to the sofa and slumped onto it. I think my arm fell over my face a little. I could see, but not very well. Now, the amount of time this took is still very hazy, but I do know that for a while, O didn't notice. The TV was on, he's normal child, of course he didn't.

When he did, he came over, and I think he told me to get up. He told me something, at least, and of course, I couldn't reply. I remember him peering at me, looking into the gap I could see out of, and frowning. Then he said, quite casually, I must add: "Maybe she's dead." He repeated his opinion that I was dead a few times, with different variations. I can't remember it particularly clearly, but I do recall that at one point he remarked that daddy would have to take me away and make me not dead any more. So I take comfort in the fact that his idea of "dead" and mine don't match entirely. Eventually, he held my hand and sat in front of me. (Not the safest place for him to be, but I wasn't able to tell him that.) I managed to squeeze his hand, much in the same way that I signal to W that I'm okay. I'm still not sure how much he understood, and how soon, but he did let go in the end, and after another effort in which I managed to point upwards, ran to the bottom of the stairs and called for W, saying that I was having a seizure.

Now, for a boy not yet four years old, I don't think he did badly. In this situation the crap one was, let's face it, me. I can see the funny side of it, of course. I mean, he didn't at any point seem particularly traumatised by it. At one point, in a complete monotone, he said: "Oh no, she's dead," and promptly prodded me in the arm. (After all, what are dead people for?)

Still, much as I am comforted by the fact that he hasn't been traumatised by it all, I really wish that sort of thing didn't happen. Ever.

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.

Married life, and other things.

To be honest, it's pretty much identical to life before, except that now I have a stack of Thank You cards to write, and a lot of paperwork to fill out to change my surname. I guess that's a slightly contentious issue to some people these days, and while I don't personally feel it's a choice I have to defend, I seem to have found myself explaining it a few times over the last few weeks. Several people have asked whether I would or not. At the end of the day, it boils down to the fact that I want the same surname as O and M for convenience. I personally think that most double-barrel names get clunky in the end; what if O or M wanted to double-barrel their name again - would they then have the awkward task of choosing a name to drop? I worry too much about that sort of thing, although I quite like the sound of other people's longer surnames.

Anyway. So, for me, the double-barrel option was out. Asking W to change his name was something I didn't even consider, mostly because it would sound ridiculous. Honestly, you'll have to trust me on this one. So that left me with changing my surname, which suits me just fine - my new surname is nice, and flows just as well with my name. Plus, I get to keep "Hill" for writing purposes, which I always knew I wanted to anyway. Essentially, I get the best of both worlds.

Still. That's not my sole, trivial point for the day. I still haven't had an appointment for Dr. Neuropsychology, although I might not get one - I had a letter today saying I might simply be referred for CBT. (More on that another time.) I'm still having seizures fairly frequently, although thankfully not several times a day. The wedding was clearly a big source of stress, which is obviously  over, but I am still not in a position where anyone is going to want me working for them. If this is my baseline, and I know that working increases the number of seizures I have, that's a non-starter. Three or four times a week at least is no good for people, especially just for a part-time employee.

I've also had a nice fat form from ATOS in the post, for me to fill out and prove I'm still ill. What joy. I must admit, when I first opened the letter and saw who it was from, my heart skipped a beat. ATOS do not have a good name among people who claim benefits relating to ill health and disability, predominantly because they appear to be skewed in the favour of slashing the number of awards, rather than assessing people fairly. I don't really have the energy to explain the whole debate here, but I will point you in the direction of blog outlining some of the more serious concerns. It's an interesting read, although the topic is certainly worth researching for yourself, because it affects one heck of a lot of vulnerable people across the country, and a long-term illness or disability could affect anyone you know, or even your future self.

I try not to get too emotive and biased about things any more, because I don't think that kind of argument ever really resolves anything - it just descends into "sob stories" that people dismiss as individual cases or overly subjective. But I do and will continue to encourage people to look at these issues more closely than they otherwise might. Very rarely is the overview of a situation as accurate as the full picture, and very rarely, in my opinion at least, is the story presented on the news and in the papers anything other than an overview, often one which is slanted to give weight to a particular point of view.

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.

The Day Off...

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

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

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

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

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

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

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.

Well, touching wood doesn't work then...

There are some days when I feel I am doing really well. I don't think it would be fair to call today one of them, if I'm honest. I've had two seizures today - one of them a lot worse than my usual ones these days - and it's kind of stained what should be a special day for M; her first birthday.

The first one wasn't so bad. Well, I didn't make it upstairs, so I had the seizure on the floor, but really I just felt rather... other for a few minutes, and then came back to normal. My eyes were really flickering, and I had a weird urge to roll around on the floor, which I managed not to do (thank goodness) as I was alert enough to bear in mind my wounds, but when it was over the recovery period wasn't that long.

We opened presents and cards, O got a bit distressed by all the attention not being on him (in fairness, he's never had a younger sibling's birthday before), W's parents arrived and we had lunch, did the cake... and then I felt weird. W had been saying about an hour previously that the way I was acting, he thought  I was going to have a seizure, but I brushed it off as an overreaction because I honestly felt fine, and didn't (as I usually do) get all defensive and deny it wildly. Mostly, if W points out that he thinks I'm gonig to have a seizure, I start second guessing and worry that I will, or I do nowadays, at any rate. This time though, I think I had actually rolled my eyes, and dismissed it out of hand because I felt fine. 

So, when I sat in the chair, arms and legs twitching (and the remaining nub of conscious me panicking that I was going to rip my incisions open), with eyes rolling, teeth bared and tongue making clucking sounds, you will understand why I was rather shocked. My belly button really ached afterwards (I think I wrenched the whole area a little), and when I came round I couldn't speak at first, and I was shattered. I had to go upstairs, still feeling more than a little woozy, and I pretty much instantly fell asleep. I slept for about half an hour, apparently, and came back downstairs just in time to say goodbye to W's parents. Cue guilt.

So, at about half four this afternoon I rang the GP and epilepsy nurse, and talked over my options. I won't get to see my epilepsy nurse until August at the earliest as she's still sick (it figures) but I have asked for the nurse who covers the neighbouring part of Kent to give me a call on Monday because I need to speak to someone. And my GP has offered to write an email to a neurologist to try and get some advice on possible medications I could try so I don't have to wait until my appointment in September. Still, it doesn't change the frustration I have that there's nothing I can do right now to help myself. I just have to sit tight and hold on. Hopefully someone will have an answer for me, because I'm at a point now where my seizures are worse than they've been since I started taking the Keppra four years ago. The most frustrating thing of all is that I can't work out what has happened to make things change so dramatically.

Right. I'm not going to sit here and stew on this. If I don't stop now I'll sit and tie myself up in knots trying to think of triggers or patterns. Focus on the good - ongoing celebrations of M's birthday. I'll be damned if this is going to overshadow that.  

Recovery

Well, I must say, I have been very impressed with my keyhole surgery experience. A few days on and the referred pain has left my shoulders, and the incisions themselves are healing nicely. Three of them probably don't need the dressings I have on them (I expect I'll take them off tomorrow), and the one on my belly button, which seems to be the biggest, isn't far behind.

One of these days when I can be bothered, I'll have to look the procedure up and work out which hole they removed my gall bladder from, because honestly, none of them look big enough to me.

The biggest problem at the moment is not being able to pick up O or M. They are both capable of climbing up onto my lap, though it's a bit sore if they fidget too much, but I cannot lift them, and won't be able to for at least another week, particularly O, who is getting heavy now! Of course, since W is around, I'm not quite as in the lurch as someone who didn't have a carer around would be, but it's still a real nuisance, because obviously you base your lifestyle on your limitations.

Still, it's a small price to pay, and now that the soreness is subsiding, it's remarkable how much better I feel. I don't think I'd really appreciated how often I was getting pain from gall stones. And I'm still a little.. er, galled, if you'll pardon me, that I managed to get two of them by the time I was twenty four. Still, at least it's got it out of the way while I am young enough to recover quickly, eh?

The slight taint on it all is that it's M's first birthday tomorrow, and of course, we will now be celebrating that at home, rather than going out somewhere. But since it was only family who we were going to see anyway, it's hardly a major inconvenience. Oh, and our trip to the zoo has been postponed. Well. I don't think she's really going to notice. O certainly didn't have the foggiest what was going on when it was his first birthday, anyway.

Oh, and no seizures today, either. Hooray! Now to find some wood to touch superstitiously!

Cracks in the Walls

It's stressful, you know. At the moment, my seizure frequency is higher than it has been at any point since...well, since my diagnosis about five years ago. I had two seizures yesterday while visiting W's parents, and actually considered it a small victory that I managed to get safely home again on the bus without further incident.

Today, I should have taken M to a parent and toddler group and then a breastfeeding group this afternoon, but due to a poor night - an occasional fact of life if you have small children - both W and I were worried about me leaving the house without him. And then, about half an hour before we were all due to go out as a family, I got that funny feeling I get sometimes, and had to crawl upstairs and drag myself onto the bed. I felt my arms and legs going as I entered the bedroom. When I came back to normal I checked my watch and only about five or ten minutes had passed, but I can only remember a minute or so and then I have a blank. When I'm alone like that and there are no events for me to mark time by, I might as well have blacked out for all I can remember. I just get to a point where I am suddenly aware that I am lying in a rather uncomfortable heap on the bed, or on the floor, and I know how and why I got that way, but still have the disorienting sensation of "coming to" which makes me wonder more and more: "did I pass out this time? Will I pass out next time?"

Needless to say, I haven't left the house at all today. I can feel myself getting more and more hermit like, and the stress is telling on W. He does a hero's job putting up with me and my seizures, sometimes listening to him and lying down when instructed, sometimes loopy enough to insist firmly that I am perfectly okay right up until the point where I keel over. But it is relentless for him, and the more seizures that I have, the greater that burden of stress I put on him. I can't go with him to the shops, but he's worried to leave me behind. I can't just sit around the house all the time (I go stir crazy, and that makes me worse), but going out is fraught with worries of its own. Even when I am at toddler groups and O and M are able to be watched by other people, during the few hours a week that W doesn't have to worry about me, well, of course he does! You can't just switch that off. He doesn't get a holiday. And okay, neither do I. I always have to live with the fact that I could have a seizure at more or less any point. But while I'm actually having a fit, I'm too out of it to really care. It's W who has to pick up the pieces, and watch both me and our children while it happens. And we both have to then explain to O why we were unable to go and meet up with Grandpa, or why we aren't going to playgroup, and he's still young enough to not understand. The other day he cried out "but I'm missing all the fun!" and it broke my heart. He does miss out sometimes, and it just isn't fair.

How long will I be like this? How long will it take someone to find the right combination of drugs to keep this at bay? When will I get back to "normal", if it even exists?

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.