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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.