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.

In Dependence

If there is one thing about me that close family and friends can affirm, it is that I am stubborn to the point of bloody-mindedness at times. We’re not just talking a little bit stubborn, we’re talking full on, cut-your-nose-off-to-spite-your-face levels of the stuff.

And one of the things I am stubborn about is not needing help.

Of course, there’s no escaping the fact that over the course of my life I have needed a lot of help, in a lot of different ways, but then, that’s one of the reasons I hate it. Because I am someone who hates relying on other people, who hates to be incapable of doing things.

And yet, here I am, edging out of the mid-twenties and into the late, and I still, regularly, am utterly incapable of doing some things for myself.

Driving. There’s one. I had my lovely pink license for all of ten months before it was taken away again with the promise that I could have it back if I was good and stopped having seizures. Well, here I am, eight years later and in that time the longest I’ve gone without a fit is one month. It was probably a February.

Baths are another one. Seems kinda silly perhaps, but if I want to have a bath, I need someone else around, to check on me. As a result, in the last year I have had one bath, and that was me taking a risk. In my flat there is only a shower, to avoid temptation.

Cooking, too, is an area in which I sometimes come unstuck. If a seizure strikes at 4pm the oven doesn’t even go one, and one of the emergency ready meals in my freezer acts as stand-in. I’ve thrown away unopened packets of meat because they went off the day after I had planned to eat them and on that day I was unable to cook them. Likewise, there’s always at least one onion in the bag when it gets slung out, because I buy as though I am capable of cooking them more often than I actually manage.

The elephant in the room of course, is what I turn into while I am having a seizure. Perhaps surprisingly, given the post history of this blog, it’s not something I talk about a lot on a day-to-day basis.  When I do, it tends towards evasion and sidestepping. “Oh, I manage,” or “The children are really good about it actually,” or “I just got used to it really.” We make do. We manage because we have to. I don’t need help.

Except, when the seizures start, when my knees buckle beneath me and I fall down, pretty much the only ability I retain is to more or less keep myself from spilling out of my clothes. (Seriously, the number one thought and motivation if I have a seizure in public is “I will not let anyone see my bra”. Any control I keep over my arms and legs gets spent on that. It mostly works.)
There is no walking, there is no talking. There isn’t always seeing. I am fully dependent on those around me to keep me safe, to protect me – usually from myself. It doesn’t matter that I am a fiercely stubborn person, the kind of person who will carry shopping so heavy that it wrenches my shoulders and refuse to let anyone help me. That I will sit and struggle with something alone rather than admit that I maybe don’t know what I’m doing and need advice. When I have a seizure, any and all agency is stripped away.
It would be poetic, perhaps, to say that my stubborn insistence on doing things myself came about as a result of that dependence. I mean, it would also be a lie, but it would be the kind which sounds good. In all honesty though, I am the student who rubbed out the pencil notes in her English GCSE set texts that had been left there by previous year groups, because I hadn’t written them, so using them would be cheating.  Where other people work together to solve problems, I hide myself away and refuse to talk about them until I have worked it out by myself, usually meaning that it takes me ten times longer.
This, then, is the true cost of epilepsy, of seizures. I don’t count it in bruises, or in hours lost (although they would also give a fairly impressive tally). I’ll talk all day about the physical toll with no worries in the world. I can handle that. I can fall down, and get up again and dust myself off and have a bit of a laugh. It’s an inconvenience, certainly. It bloody well hurts sometimes, too.
But a cost isn’t something you joke about. It isn’t the running gag. It’s the thing you hold close to your heart, safe from the sight of others, and also, incidentally, right where it can sit and sear through your emotional defences.  Epilepsy means something different to everyone. And for me, at its core, it means depencence. It means, on some level, I rely on other people to live, and there’s a good chance I always will. That’s the cost. I carry it with me everywhere. The knowledge is a ball of fire, and it burns.

Concussions, and other fun things

There are few things in life which I value quite as much as the ability to think clearly. Food, family, and somewhere to live are all up there, of course, but aside from the basic necessities of living, what do you actually have if you can’t think?

I don’t mean thinking as in contemplating the deeper mysteries of life and all that (although I am the sort who enjoys that too, now and then), just… thinking. Being able to sit and know where you are, know how you’re feeling. Anticipate the finer things, such as how you’re going to get up, go into the kitchen, and put that kettle on for a cuppa. And then being able to get up, and not stop and think “Um, I’m in the kitchen. What was I about to do?”

A handy mug of tea

This, Jemma. It’s called tea, and it rules your life.

Last Friday, I had a pretty bad seizure and, although I don’t really remember doing so, hit my head kinda hard. I know this, because there’s a nice, handy bruise on the back of my head to remind me every time I lie down the wrong way. Now, this is a good opportunity for me to get sidetracked and point out that this wouldn’t have happened had the people around actually known what to do when someone has a seizure, and believe me, I will, another time. But today, the focus is the aftermath. The why, as it were.

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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.

Farewell, Brown Envelope…

That’s that then. On Friday I posted off my last DLA renewal. Here’s hoping, eh?

It took me the better part of a week and cost me about six or seven seizures, not counting the one I had on the way back from posting the damn thing. That last one turned a five minute walk into almost two hours, and cost me a few pounds in impulse purchases made when I wasn’t fully there. Having a seizure is like being drunk. You’re not fully in control of your body, even when you can walk and talk. And that side of things can last for a good hour or so either side.

In either case, Friday was a write off for me. I came home and I was out of it for most of the remainder. Had a nightmare that night as well. I guess I can’t prove causality on that one, but it’s an interesting coincidence.

I had a fairly large seizure yesterday too, and another this morning. Yesterday’s involved falling off my computer chair and landing head first on the floor. I jarred my left knee, and caught my right foot on one of the chair’s wheely-feet. Both still hurt this morning, along with various other ouches. And then in this morning’s seizure I’ve jarred my left shoulder.

For such a tiny mark, my foot still hurts
one heck of a lot 

In essence, everything hurts, to a greater or lesser degree.

Is this my life anyway? Well, kinda. But the severity of the seizures and how close together they are (three “big ‘uns” in three consecutive days, plus auras on the side) is striking. And that’s *after* the form sat on my worktop for three days, complete and envelope’d, just waiting until I had a chance to post it.

It was demeaning, and horrifying, to list in detail all the things I can’t do. All the dangers I can pose to myself and to O&M. All the measures I put in place to protect my family seem so frail at times. I can “manage” (at the cost of regularly injuring myself), but I take for granted having that extra money there to buy takeaway when it’s not safe for me to cook and I’ve already used my “emergency ready meal” from the freezer. Or if I have no food because I couldn’t get out to buy it.

I try to cover up the fact that there are times I will lie on the floor in the kitchen and my children will come and stand watching me for a minute before they get bored and go and play. I downplay it to friends: “Oh, I’m fine; the children are as good as gold, they know what to do.”

I don’t think they really know what to do at all. It’s normal for them, they aren’t scared. But they do poke me, or climb on me, or fail to realise I’m having a seizure. They tell me to get up, ask me why I’m lying on the floor. (Sometimes they get rather cross that I won’t fetch them drinks etc.)

I gloss over those aspects on a day-to-day basis. One of the other mums has authority to collect my son from school if I don’t turn up, so seizures at pick-up time can be resolved, but other than that I do all I can to not make concessions. I’m a fighter. Well. You have to be, and I’m lucky enough to come from a family of women who are stubborn as all hell anyway. I still hold that faint hope somewhere that one day I’ll get my driving license back, and if that’s not a faint hope in reality, I don’t know what else is.

I’m a writer, I make up worlds, so my most common coping mechanism is to pretend there’s nothing wrong with me all the time I can. I take risks. Last week I went to London for the evening. I spent the next day exhausted and had seizures as a result, but at least I had my fun night out.

And then, there I was, confronted with that God-forsaken form and an instruction to list, in detail, all the things I can’t do. All the inhibitions on my life, all the ways that epilepsy gives me the finger on a regular basis. There’s quite a few. Of the many sections, I think there were four or five, maybe six, that I could leave blank. I probably could have said more. I certainly would have said more, had I lots of consultation notes to hand in, but as it happens there’s no access to specialist support here, so I don’t have any. I did at least get to point that one out.

And now the wait. Fingers crossed I “pass”, eh? Because I still need that DLA. Whether I meet the increasingly stringent criteria or not won’t change the fact that most days, the longest I spend out of the house is an hour. In term time. Taking my son to school and picking him up.

And now that M is 3, I somehow have to start volunteering when term starts. Good old ESA, tailor-made to stretch me to the limit. Let’s just hope it doesn’t make my seizures worse, eh? Maybe double up on those crossed fingers. I might need the extra luck.

What a difference a day makes…

So. Maybe I’m about to embark upon a rant full of self-pity and unwarranted entitlement (I’m sure there are people who would assess my situation as such, so I figure I should get the warning out of the way). However, I think this is something I need to say, because the situation I’m in isn’t one that is faced by me alone. It’s something facing thousands, and in the spirit of Bedding Out I’m putting my private self out there because it’s something not many people see. And maybe they should.

I have epilepsy. I also have dissociative seizures, which are also known as “non-epileptic seizures” “psychogenic seizures” “non-epileptic attack disorder” or whatever other flavour of the month name is going around, seeing as it’s something which doesn’t actually appear to have a universally recognised medical name just yet. (This is something that is oh, just super helpful when it comes to trying to manage the condition by the way.)

I’m writing this because I just got my DLA renewal form through (well, it was actually a week or so ago but other family issues intervened), and while I seem to have struck the lucky jackpot in that I fall into that thinnest of margins where I don’t transition to PIP just yet, I’m also struck by how badly my current postition sets me up to claim DLA at all.

The Dreaded Form

I’ll say now, my health has not notably changed from when I first made my claim in 2009 and was awarded medium care, low mobility. I’ve had my ups and downs, but hey. I didn’t notify the DWP when my seizure frequency skyrocketed and I was having them multiple times every day. I managed with what I had, and I didn’t want the stress of filling that out because, hey, while I was worse I also know that I fluctuate and eventually they’d settle back again. I’m not out to get every penny I can. I just want to be able to live.

So. Here I am now with the above forms in front of me. Back in 2009 I had help from my local CAB filling out the forms. Navigating them is daunting and intimidating. The single-purpose form covers such a vast array of illnesses and disabilities that you start to doubt you’re entitled to it at all when you’re dutifully replying: “No, I’m fine with this” to the majority of the options. Given that the dissociative portion of my seizures are strongly correlated to stress, it’s not the most productive way to manage my health.

This time though, I appear to have fallen prey to the CAB’s drastically reduced funding. I called my local centre yesterday and was told to call this morning and make an appointment, preferably in the first half of the week if possible as they only have one person who is a benefits specialist. So, this morning, at ten o’ clock sharp, call I do. Unfortunately, today’s advisor brusquely informed me that whoever it was I had spoken to yesterday must have been mistaken, that the only way to make an appointment now was to go in person to a different access point in town, but that there was only one appointment left for the remainder of the week, and really I ought to just fill out the form myself.

I explained that my disability is a fluctuating one and that I have difficulty in knowing how best to fill in the details to convey how it affects my life, to which I was told simply that I should fill it out from the perspective of me at my worst.

At my worst, eh?

At my worst, I lie on the floor, unable to move or speak. I sometimes convulse, and crash into whatever is around me – be it a wall, the floor, worktops, armchairs…I’ve hit them all before now. Last week, my adrenaline spiked before the seizure started and I randomly kicked the sofa before staggering out into the hallway and toppling over, landing hard on the side of my head and my shoulder. My neck is still stiff and sore from the muscles I pulled with that awkward landing. I can’t communicate, sometimes I stop breathing for 30 seconds at a time, and when my eyes are open they are usually unfocused or rolling around in their sockets.

In short? I’m pretty darn incapacitated. So I should be a shoe-in, no? No.

The trouble is, the form doesn’t actually ask: “How bad does it get?” It asks how often you are unable to do things such as: use stairs, walk, talk, bathe yourself, or cook. It mentions that it can’t factor in “any problems you may have walking on steps or uneven ground” (Page 12 of the form). I mean, seriously? Just before I have a seizure I probably could manage to walk across a flat surface and only look a teeny bit intoxicated. I’d probably fall down a flight of stairs though, or trip over my own feet on a ramp. Just after a seizure, even the slightest incline may as well be a mountain.

That’s just one example of many. The other problem is that my heath is wildly unpredictable. Some days, hey, you know what? I could run a race, I could climb a tree, I could do all the things “normal” people do. Heck. Some days I am the picture of a fit and healthy, fully able human being.

Some. Other days I wake tired and never lose that exhaustion. Other days I start off with a seizure and the grogginess never goes away. Other days I am all well and good until I just keel over with little warning. Other days I get auras that last hours, filling me with drowsiness or shivering fits or bouts of depressed or paranoid moods where I am convinced the world is better off without me and anyone who claims to like me or love me is putting on an elaborate act so that they can better stick the knife in later on. Some days I have to force myself to eat, to drink. Some days the thought of going and having a shower, or getting dressed is just another arduous obstacle to overcome.

And then there’s my children. No matter what I have to make sure they eat and drink and are clothed. In term time I have to make sure my son (and as of September) my daughter get to school and pre-school respectively. I’ve had seizures in the kitchen where they’ve both stood watching me, complaining that I won’t get up. A couple of weeks ago my daughter insistently pushed her cup into my hand because she wanted a drink, and when it fell out she pushed it back in, harder.

I keep a stock of frozen ready meals and microwaveable tins like baked beans for when it isn’t safe for me to cook their dinner on the hob. I drill into my son and increasingly my daughter that they are to stand back if I am lying on the floor because it’s not safe. If I feel a seizure coming on I’ll put on a DVD for them and quietly go into another room so that they’re occupied. I hate that they’re occasionally telly and computer addicts but I’m also relieved because I know that if I’m going to be out of action for ten or fifteen minutes they won’t even notice because they’re absorbed in what they’re doing.

I’m recently a single parent, too, so I have to get on and do this by myself. It’s impractical to spend my DLA on someone coming in to help me, because I don’t know when that will be, so instead I spend it on the more expensive instant meals and not buying in bulk so I can ferry it back home by hand. On getting taxis to places, on the difference between scraping out an existence shut indoors and a life where I can be free of the stress of making that last few pounds stretch until the next payment. On knowing that that lack of stress means I won’t have so many seizures, so I will be a better and safer parent. On cable TV so my kids have something to watch when I’m on the floor.

Will I manage if I lose the DLA? Yes. I’ll have to, really. But it will mean cutting back. It will mean I go out less, and I will probably eat less, and buy clothes less. It will mean sitting in the dark more to cut down on electricity, and showering my children more swiftly so the bathroom light and extractor fan don’t run as long. (I don’t have a bath in my apartment as it is a health hazard for myself and my children.) It will mean asking for more help. I’ll confess to being proud. I’ll confess to wanting to be independent and not have to ask for help all the time. I want my children to see me at my best, and I want them to grow up knowing they can do anything, be anything. I hide my seizures from them where possible – drag myself through the motions when I feel like collapsing exhausted, and make it to that golden moment when they’re in bed and I can flop in the living room and let down my mask of normality. I try not to snap at them when I am weary to the bone and just want to sit with my head in my hands.

Every brown envelope, every test and hurdle from the DWP makes me want to cry, because it threatens to rob me of the strength to keep up that mask for my children. Breaking down my mask for the DWP makes me question my ability to care for my children. After all, for all I do, I still have seizures. I still collapse at times, and every now and then a friend has to collect my son from school because I can’t get there to pick him up. It’s not about dignity. It’s not about pride and having nice things. It feels personal, a cutting choice between getting support and feeling like a competent mother.

At my WCA the assessor asked me how I looked after my children if I had seizures. I felt like the worst person in the world.

The Kindness of Strangers

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

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

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

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

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

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

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

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. 

Darn.

Well, I lasted two days this time. (There is hope yet, yes?) No seizures yesterday or the day before. I did have a couple of auras, but they didn’t develop into anything, and while I would normally count them, things are bad enough at the moment that auras have slipped off the radar. I’ll count them more when I don’t have the beggars  three or four times a day. I’d spend my life writing them down otherwise!

 I did have a weird occurrence this morning though. I almost fainted – collapsed in fact, but didn’t black out. it was over almost as soon as it started, but I honestly have no idea what it was. It didn’t feel much like a seizure, but then, what else could it be? I was very tired though, and had a lot of trouble getting to sleep last night. It could have been that I guess.

The tiredness is also probably what caused the seizure I had this afternoon. O had just thrown a whopper of a tantrum and I had successfully calmed him down by carrying him up to his room (hooray, it worked for once!). We were just discussing colour, and how it all works – there was a great deal of oversimplification and anthropomorphising on my part, but whatever it takes, right? Anyway. Sidetracking. I felt crap, and sent him down to W while I went and weirded out on the bed for a while.

I also made the mock-up of my skirt today. Now I just need to come up with some sort of waistband, take it in at the appropriate points, and cut out the actual material. Hooray! Still, with only 28 days do go, I should blooming well hope I am making progress.

…Still more worried about having a seizure and ruining the day for W than about the actual wedding itself. I guess we’ll see, won’t we. At the end of the day, there’s nothing much I can do about it either way. I just keep on taking my tablets, noting the seizures when they happen, and hopefully the neurologist can offer me some hope in  a week or so when I (finally) have my appointment. <insert deadpan laugh here>

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?