Little Victories

Today called for a celebration. For one of these:

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

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

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

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

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

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‘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. 

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.