Fitting In

I spent this weekend at a rehearsal, in the company of people I had never met before, but who shared a few key interests with me. Within a few hours I was chatting and chilled. Now, I don’t make friends easily (thanks, social anxieties!) so to feel relaxed around new acquaintances that quickly is a pretty big deal for me. Needless to say, I arrived home a few hours ago in high spirits.
My children were dropped off an hour or so later, in similarly good moods. We had the usual kerfuffle at the door with shoes and bags, with the only noticeable difference being that The Girl had been to a party at which face-paint was on offer, and had insisted on keeping the painted on Catwoman mask for me to see. Honestly, it was a pretty good job. I could tell who she was before she told me, which is always a plus.
 
So, to the point. We were sitting downstairs together before bed, and she gradually started to look a little uneasy. I could see the expression deepen as she told me her friends had Shopkins facepaint. Oh dear, I thought. I know where this is going.
 
Sure enough, the next thing she said was an expression of regret about her choice.
“Don’t you like Catwoman?” I asked.
No, that wasn’t the problem. Nor was it that she preferred Shopkins, or was unhappy about how her face looked. In all honesty, I don’t think she could really articulate what was wrong. And in fairness to her, it’s a challenging concept for a young child to put into words.
 
The crux of it, I think, is that she’s almost six now, and she’s picked up on the fact that in some hard-to-define way, fitting in and being the same is good, and being different is… not fitting in.
She’s in Year One, so I don’t think they’ve yet reached the stage of picking on the kids who are different (and the school is very inclusive, which I think helps prevent that attitude getting too entrenched anyway), but society as a whole has an unerring tendency to guide people into this mindset. Fashion. Trends. Adverts. They all, subtly or (usually) otherwise, guide people to the conclusion that fitting in is good, and sticking out really isn’t.
So when my daughter, aged five, chose to have her face painted as Catwoman, and several of her friends chose to be (identical) Shopkins, she was left with that odd, hard-to-place feeling that somehow she’d done something…not wrong, but not entirely right, either.
 
And it’s awful. A five-year-old girl feeling like she made a bad choice for being a character she loves, because it’s not the same as everyone else. As far as I know, no one even said anything about it. It’s just a concept she has already internalised.
When I was younger, I worried a lot about this myself. I always knew, deep down, that I didn’t fit in, and for a long time this made me panic and try extra hard to mask that fact. Now, I won’t ever claim I tried to fit in with the popular kids (it was never gonna happen), but I certainly did my best not to stand out, either. One of my best friends once described my wardrobe as the sort of thing “normal people wear in films”. I never quite passed for real-life normal, but I had near-as-dammit down to an art. I faded into the background like a movie extra. Never the centre of attention, but still part of the crowd.
I nodded and smiled when the conversation turned to TV shows I didn’t watch, or the attractiveness of actors whose names I seldom knew. I painstakingly taught myself to recognise double entendres and laugh with the rest, and I got used to never mentioning my quirkier interests, or denying them outright if people spoke ill of them. (“Oh, yeah. People should absolutely get more fresh air and not spend all their time playing computer games. It’s not healthy!”)
It took me a long time to have the courage to not care, and before I could be myself, I had to try out various alter-egos. I had my faux-goth phase. My jewellery-as-armour phase. My ostentatious-I-don’t-care phase. The last one still flares up now and then, but mostly, these days I have settled into quietly doing and wearing whatever the hell I want.
Still. The road to get here was long enough that the thought of my daughter setting off down it fills me with sadness. As her mother, I don’t want her to be at the start of a long road filled with heartache and self-doubt. I don’t want my daughter’s future to be a war between enjoying the things she really loves to their fullest, and putting some of her interests aside so she can avoid feeling like a pariah.
We had a conversation before she went to bed. I don’t think she really took it in, but that’s okay, because I’m very prepared to have it again, as many times as she needs to. It wasn’t long, but I made sure to tell her that I thought she looked fantastic with her Catwoman face paint, and that, if there was one thing I wanted her to learn from me, it was to be herself, always. To do things because she wanted to. And if it happens that the thing she wants to do is the same as the thing her friends want? Hey, great, no problem! But if it’s different, that’s not a problem either.
And this time, aged five, there wasn’t a problem. There wasn’t a: “Well why did you pick that.” So part of me feels a little like I sprang the “be yourself” speech early. But another part knows that for it to really stick, you have to either grow up with it or learn the hard way. And the hard way really, really stinks.
When the cliques start (and my memories of what teenagers are like assures me they will), I want my children – both of them, although The Boy has so far shown little signs of noticing what happens outside of books – to have the confidence in themselves to be themselves. Because you know, several times this weekend, I had the passionate wish that I had met that group of people earlier. That I hadn’t spent so many years thinking there were only a handful of people who got me, when it turned out that, all along, there was a place where I could feel entirely at home.
So the message I want my children to learn is this:
Don’t “fit in”. Find the people who fit you, instead. It’s well worth the extra time it might take to find them.
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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.