Active

I go through phases with blogging.

Specifically, I go through a cycle.

Around this time every year, I begin blogging again in earnest and participating in bloghops and linkies.

The last three years have been the same.

Enthusiasm wanes around the end of the summer then as winter approaches and I drift into my funk, I lose blogging and some parts of whichever community I’m currently fondling.

During my active phases, I tend to blog in multiple places (the OCD likes to keep things very defined) so here’s some links, in case you’re interested:

Muddled manuscript – I keep fiction and terrible poetry here.

Kristina Writes – here lies writing about writing, encouragement, NaNoWriMo tips and a hint of madness. I try to update this one once a week with what my writerly alter-ego is doing and supportive words for other writers who are struggling on that lonely and often heartbreaking path to publication.

There you have it.

Medication potential

When L began seeing her neurologist, we were told that medication for her type of epilepsy was rarely called for.
Since L has been having frequent Magic Hand episodes, she is now back under review (which is why we took her for another EEG.)
Each time L goes to see her head Dr, a summary letter is sent to us and the health centre. The most recent one came today.
I knew medication was a strong possibility, but this letter indicates that medication is the next step for L. We’re still waiting on the results of the EEG.
I don’t know much about meds for epilepsy, but we were warned that they can affect behaviour and personality. She could potentially become more aggressive as a side-effect, although it’s hard to tell whether the changes are because the discharges in  her brain are being suppressed or because the meds are causing a change in the delicate balance of chemicals.
Knowing that my own delicate balance is a little precarious and there is depression, anger issues, anxiety on my side and Asperger’s on both sides of her family, the potential frightens the poop out of me.
Still, if it means she can have as normal a childhood as she can get (with us as parents, it’s unlikely to be that normal!) we need to give it a go. 

Memory Loss

My memory is going.

I already have gaps from my childhood; years and years where I can’t remember a damn thing. I’ve been told what happened, and as the brain is a fantastic thing, I’ve pieced together memories based on vague ideas. Other people have such great tales of mischief from their formative years. I have memories of crying in toilets, feeling hurt, and being rejected and ousted by my peers. Of course good things happened. The events surrounding my first crush taught me about friendship, relationships and teenage boys. The moments of painful self-awareness contrasted with extreme arrogance taught me how to control my inner (and not-so-inner!) idiot and gave me a way to avoid being a victim of those traits in others. I don’t have any moments of daring or extreme excitement. All of my happiest memories, or what’s left of them, are tinged with anxiety and tension as I recall the lies, the bullying and the intensity of the feelings behind them.

That scares me. It scares me that I’ve forgotten growing up. Even the things that I thought would stay with me forever have faded into mere flashes.

The memory loss is getting worse. I put things down and can’t remember where I put them (my glasses, keys and the kids’ sippy cups often falling foul of this). I can’t remember events, both upcoming and already passed. I can’t remember whether something happened this morning, last night, last week or last year. My perception of the passage of time has become both minutely compressed and impossibly stretched.

I’m not sure whether this is another symptom of the anxiety and depression or whatever it is, or a side-effect of packing my days full of nappies and kids and breastfeeding and cuddling and playing and shouting and chatting and working to the point where my mind feels it’s an inefficient waste of time to switch off to sleep. 

Epilepsy update

Hello again.

It’s been a few months, hasn’t it?

Anyway, I’ve been updating some other blogs and having a break away from writing but now I think it’s time for a good old brain-fart.

L was diagnosed with epilepsy 2 years ago after a traumatic 40 minute tonic-clonic seizure. She did a three day stay on hospital where she had an EEG which (at that time) had indications consistent with Benign Rolandic Epilepsy in Childhood (BRE, BREC). She had an MRI just to make sure and when that came back all normal, her neurologist began a monitoring program.

The day before her next consultation, she had complex partial seizure. We did an ambulance journey and spent four hours waiting in A &E majors ( the bit where they have all the seriously ill patients which is pretty gruelling) to be told to go home and update her consultant the next day.

She was then put on six monthly monitoring where she would be discharged if she had nothing after a year.

Well, the first six months were fine, then she started school. We thought “magic hand” – she describes it as her hand moving on its own and says its tingly – was an aura, however when she started to get magic hand more than a couple of times a week, I began to wonder if this was far more significant.

I brought it up with her neuro at the last consultation and she said it is likely to be partial seizures, especially as its generally accompanied by a short period of confusion, clinginess, or feeling strange.

We are now into a new ball game with the epilepsy. No, it’s not severe, but if magic hand is seizure activity, she has had probably 20 seizures over the two year period and seems to have them in clusters when she’s tired. This could lead to the need for medication and that’s a pretty scary thing as it could potentially change her personality.

Anyway, as part of this new discovery, she has to have another EEG in the morning. The last one, though indicative, was inconclusive. So this time I’m hoping for some answers. It won’t change much, but it’ll better prepare us for the future.

The girl

My eldest has always been a challenge. She’s made me face up to a lot of my past and driven me to points of frustration I didn’t know I had.

We knew she would be special. When she was born, she had a tongue too big for her tiny mouth, so it poked out, and a fontanelle which was outside the average size. She was checked and deemed ok, but I was so self-absorbed, I missed her growing up.

She would scream at the end of the crocodile verse of “row row” by 5 months. She knew shapes at 10 months. By 12 months she was talking coherently.

Then at 2 and a half, with her fontanelle still slightly open (they should be closed by 18 months) she had a seizure. She was put through tests and we had a gruelling couple of months before she was diagnosed with benign Rolandic epilepsy in childhood.

I’m reading a book called Musicophilia by Oliver Sacks. One of the things he talks about is using epilepsy medication to control auditory hallucinations since it calms the over stimulus of those neural pathways. It seems almost fitting then, that we would discover tonight that our girl has perfect pitch.

I had suspected it previously, but now, hearing her sing intervals so effortlessly, it all makes sense.

Her favourite song is “Call me maybe” by Carly Rae Jepson, which she can sing in tune to the instrumental. I struggle with this and I have a trained (but out of practise) ear. She can also sing it perfectly in tune and in the same key as the original, despite not having heard the original for a day.

There is something very special about my girl. She is gifted.

Super sensitive

Since I’ve accepted myself as abnormal (or perhaps I am the normal one and they are all strange!) I have become a lot more sensitive to criticism. Overly sensitive perhaps?

I have always had an abundance of background paranoia caused by years of actually being the one they talked about, and this is spreading.  It’s infecting my guilt, making me question what I did to deserve such treatment.

In my world, there is no such thing as the bitchiness of others. If I am in receipt of a sour remark, this is because I have already earnt it. Bought and paid for, as you might say.

I volunteered my services recently, and perhaps the fault lies in the way they were reluctantly volunteered. Or by my precious fuck ups. Either way, I was told this person would pay someone else. As an aside, I said they could pay me, knowing that I would never charge this person. Especially not for what they wanted done, as it’s a small job and one I can teach them in minutes. I would have hoped they realised this.

They didn’t.

A response appeared with an emphasis on the negation of any charge, worded in a manner which, in the toneless world of the Internet, felt pointed and jagged.

Now I sit lost and chastising myself for even thinking anyone would want me to help. Thoughts are battering themselves against my skull and I’m doubting myself, the things I worked for and my family.

There are no such things as bitchy comments in my world.

All fault lies here.

They fuck you up, your mum and dad

This first line in This Be The Verse, a famous poem by Philip Larkin.

An ex boyfriend of mine exposed me to this work after a discussion about having children. Those were the heady days when I didn’t have any intention of having children. They were the days when I thought I couldn’t have children and I’d accepted this as fact.

That wasn’t the case and now I have three. Three lovely horrors I get to fuck up in new and interesting ways. Three cute monsters who are already showing symptoms of my issues.

It’s terrifying.

I grew up thinking that it was my parents’ divorce which had made me the stupid, pathetic shell I was during my childhood. I was the kid always willing to lie down and play the victim. I was that snotty kid crying in the corner. That one they all hated. The easy target.

I’m bitter about the waste. I wasted what should have been the best years of my life by burdening myself with everything. I missed out on so much because I was sensitive and ashamed of myself.

I thought it was a combined effort, until I heard myself repeating things I’d heard growing up. Things that I realised had cut me. These words my mum spoke were dangerous knives, and I caught myself saying them to my daughter.

I don’t like people saying horrible things about Mum. She did the best she could for us. It was hard for her so when I think about the things that hurt me, I think about what I did to deserve them.

There are moments when I was horrible to everyone. Mum won’t let me forget them. The shame wants me to forget, but I can’t. It’s not her fault, though, it’s all mine.

Isn’t it?

And me saying those things to L?

That’s my fault too.

They fuck you up, your mum and dad.

Unclean!

I am not a tidy person. There, I said it. I’m not. I have things. Lots of things. Things I’m emotionally attached to, things I can’t live without.

Things I think I can make money with but will never leave the house.

This is my reality.

I live in a house which is covered in kids crap. I’m fine with that.  I really am.

Funnily enough, the toys are the only things which have homes. Every toy (until tomorrow!) can be put in a drawer or box or pile and peace can be restored.

It’s all the other crap.

The clothes, the towels, the bedding, the tatt. It is everywhere.

I was hoping to get a new wardrobe. A wardrobe of beauty. One which can hide most of my sins.

Then we got skint.

So now we have half our clothes in the loft, some in crates in our room, most in the laundry –

The tumble drier eeked out its death throes this morning, leaving the house smelling like burning rubber, my ears slightly sore and a large load of washing which I will struggle to dry.

I’m disgusted by the accumulation of shit. I’m grossed out by the Cheerios everywhere.

I know there are hairy spiders lurking under piles of crud.

There’s a three foot mountain of stuff by the cot.

I’m so desperately depressed about it.

It all feels a bit much.

Proper out

Innit?

I’m the least “Street” person I know, and the only time I’m cool is when I set the shower slightly too low.

My cousin had his birthday party yesterday, and, unlike my brother, invited all of the family (not just the members who make him feel young and are prepared to kiss his Golden Balls. Yuck. Mouth vom.)

It was symbolic for me, as after the weeks of feeling like I was losing my identity and looking grey on both the outside and the inside, I got to slap some make up over that shit, glue on a smile and pretend it’s all okily dokily, which sounds worse than it is because I got to be this:

Yeah! And who wouldn’t want to be that hot mumma for one night only?

Ok, maybe a bit over enthusiastic, but the point is that I looked passable and felt ok, actually.

My kids were well behaved (ish) and I didn’t embarrass myself (much). I mean, of course there was dancing, and maybe a bit of singing, even a little shock when Bro said he’d like to partay with his older Sis. (Oh, alcohol, you make people talk bollocks.) but I got to see my family, which is the most important part.

(And the looking good, obviously!)

Out

We went out today, Ru and I. We went out.

He was crying and crying, and I just needed some space, some air, so I put him in the pushchair and we went out.

No one messes with me when we go out.  No one. Because I look like a mental person. I mean, I am a mental person – or rather, I’m a person who has mental … mental things – but I look like one now.  Actually fucking look like it. My hair is lank, and falls round my face. Not framing it nicely. Oh no. Just kinda hangs there like the creature from that film The Grudge. It’s clean though my hair, I washed it for the second time this week, so it’s clean.

My eyes are sunken and engulfed by black bags and a stupid sadness which is leaking from I don’t know where.

My skin is awful, breaking out in scabs like I have some kind of infectious disease spreading across my chin, eating my face. Maybe I’ll turn into one big scab.

I don’t bother with nice clothes any more. I have a Muse T-shirt on. From a tour about seven years ago. It has baby sick on the sleeve but it covers my stick figure, hides the sins beneath, so it works.

The tracksuit bottoms I’m wearing, complete with al ittle stain of yellow poo, should go in the wash, or be burned. I would say they are the source of the smell which has been following me around for a few days.

Even the fucking crazies look at me like I’m crazy, whispering behind their hands.

No one messes with me.

The crazy is spreading.  Ru has it. I’m giving it to him in little doses. Maybe that shit travels in breastmilk. He’s wearing a grow that belonged to L. It still has banana stains down the front. Banana never fucking washes out, does it? You ask any parent. Banana stains and Weetabix – that’s what they need to start using to build houses. We’d survive everything if they did that.

The grow is red, and he is grumpy.

No one messes with us.

We went to the pond. Through the estate and down to the duck pond on the edge of the surrounding woodland.

Today there were ducks. Actual ducks floating on the putrid green water. I watched them for a bit with Ru.  He looked grumpy.

No upturned shopping trolley today.  No carrier bags drifting around, mouthes open ready to ingest an unsuspecting moorhen.  Just ducks.

We came back via one if the pathes  which cut through the closes, every second I checked behind us, wondering exactly how quickly I could run wearing flip-flops and pushing a pushchair.

Not very. I don’t think I would run very fast at all.

We got to the shops alive, and I spent a good ten minutes choosing a drink. Coke, Ribena, Lucozade, all twenty-three pence per 100ml. That’s a lot. Expensive.

Too expensive for me. Gotta count the pennies, pay for childcare.  Gotta save up.

Ah, water.

I choose water.

At the till, I’m served by the only looney, and even she eyed  me carefully like I’m some kind of rabid creature. I told her I needed electricity.

‘We were just wondering how old your little girl is.’ She said, looking at me with one eye, the other pointing off to the left.

‘Boy actually.’ I corrected her. It’s rude, isn’t it, to correct someone like that, but I’m crazy. Crazies can do what we like.

She looked embarrased and I pretended I didn’t notice her flushed cheeks.

‘He’s eighteen weeks.’ I removed my card from the machine without paying and it beeps angrily at me.

The girl next to me looked at me with sorrow and pity.

‘My youngest, she’s seven months and she’s half his size.’ She said, like it’s some kind of thing to have a little baby.

Like he’s some kind of transvestite giant baby and I’m to be pitied because I’m there in my mismatched clothes. I suppose she thought I hadn’t done it before.  I didn’t know what to expect, obviously, being stood there with just one child.

Just one child who looks fucking grumpy.

‘Yeah thanks.’ I smiled at her anyway.

She doesn’t know.

I left the shop and gulped back water like there’s no tomorrow.

Time to take my crazy home.

(Disclaimer: This is a brain-dump, semi-fictional account of what happened.)