Monthly Archives: January 2012

Diseases and disorders

As part of my course I have to research various ailments.  They range from moles to heart failure and are often accompanied by quite graphic pictures. 

Not good if you’re squeamish.

Luckily, gore and guts don’t make me churn and I find the body fascinating so even though it’s a lot of info to take in, I’m quite enjoying it.

I came across a few disorders I was able to write about without refering to any books or the internet.

Anaemia – I’ve had this on and off for years so know what to look for.

Eating disorders – self-explanatory.  We won’t go there.

Depression and Seasonal Affected Disorder – both appear on my medical records.

Epilepsy – a result of recent events which have kept me awake at night looking at EEG results.

The flip side is that it has opened up a whole new world of dangerous self-diagnosis.  I’m now reading each symptom like a check list and have stacked up a whole list of other issues I may or may not have.

I’m not going to let it worry me though.  Stress is a major contributing factor to most of the illnesses.



It has come up a few times lately.  Firstly in the beautiful and thoughtful card from the Lovely Ladies and then again from another lovely person who has held us in her prayers through our tough times.

To tell the truth, I have been sorely tempted recently to turn to God and start praying, but I just cannot commit. While I have reasonable doubt (I am effectively a scientist) I just cannot make that leap.  It would feel hypocritical.  It would feel wrong.

I am grateful for their prayers.  Knowing we are in their thoughts and people are doing what they can helps lessen the isolation.

I wish I could pray for her.  Then I would be doing something instead of falling apart quietly in the background.

I wish I could love something bigger than myself and my family.  And I do. Nature and science are powerful magic. 

I wish I didn’t feel so helpless.

Selotape, blu-tac and cake

I’m pretty sure that’s how I’m holding it together.

It helps that I spend hours every evening watching shit TV and mindlessly knitting while chomping 15 pieces of Dairy Milk and washing it all down with highly sweetened coffee.

The house is not falling apart but I am.

OH is having to do everything.  He’s working a full time job, cooking, cleaning, washing up, shopping, putting petrol in my car, getting us out of bed.

I’m cheering if I manage to get up, shower, and do a full morning without shouting. 

So far there has been no cheering.

I’m not desperately depressed but the size 8 trousers hanging from my prominent hips point to the fact that I am actually managing to burn off calories just by being worried.  I’m eating.  I’m possibly eating more than I normally would but still I’m getting thinner. 

For now, I just hope the selotape doesn’t begin to peel at the edges and that the blu-tac stays moist.

And that there is an endless supply of cake.


As you can imagine, everything at the moment is a litte bit hazy.

I’ve given a start date on the new job, although I’m still prevented from sharing my news with my collegues.  Office politics.

I know there will be at last two people who will be super gutted to hear about it.  Maybe I should wait to tell them in person.  Haha.  I’m not evil.  Really I’m not.  Just sick of certain things kicking me repeatedly in the face.

And I get my name on the door.  Yeeeeeehhhhhaaaaa!!!

Ls epilepsy has kicked us though.  Really kicked us. It’s a life changing thing, you know?  Selfishly I keep thinking that I can’t let this ruin my chances at this job.  I can’t seem unreliable.  I’ve not told my new boss about it because I don’t want him to regret his decision to employ a) a woman in an extremely male dominated environment and b) a mother who needs to leave the office all the time. 

I remember I took a lot of time off with L being ill before going on mat leave.  Just coughs, colds and viruses, but still.

It might be hard to persuade OH that he will have to take over at least some of the responsibility for sick-care.

I also feel a bit like I haven’t had a chance to be happy or excited about the new job.  Mainy because I have been worrying myself extremely thin about L and her diagnosis.

Not really helping the anxiety.

Picking up the pieces

Today, as we try to return to normality, Monday seems so fucking far away.

The memories are there, but I’m blocking them.  I don’t want to see them any more.  I don’t want to be scared of her.

I don’t want to think of her as a ticking time bomb.

I feel unsettled. 

Something is bugging me about her diagnosis.  Forty minutes is a long time to fit.  A very long time.  And she was seizing before the paramedic got here.  When she couldn’t talk.  When she was absolutely terrified and no amount of cuddling could comfort her as her brain decided to take a jaunt off and leave her body to cope.

I hate it.

I hate that Monday happened.

I hate that I’m scared of the phone ringing when she’s not here.

I hate that I spend most evenings sending OH upstairs to check on her.

I hate that it will only take one thing to spark my own mind into a spiral of flashing images that I will never ever forget.

I’m so worried about her MRI and she hasn’t even had it yet.  So intensely worried that I can’t even begin to think about it.   I want it to all be over.

How the hell do I sort this mental mess out?

Things to do before 40

I’ve been tagged by Bessy from Bessy blogs. I’m a metaphorical ‘it’.

My list is:

1. Finish the “novel.” Ideally this should happen before the 30th of June as that is the cut off for the five free printed versions.

2. Complete the massage course and do some specialised training.

3. Fill my had with super geeky poop.

4. Take (teach) a lecture.

5. More children?

6. Pay off some of the mortgage.

7. Move to a bigger house in a better area.

8. Finish my to be finished knitting.

9. Get my house clean.

10. See the bottom of my laundry basket

I can see most of this happening bar the laundry thing.

Fluffy brain means tagging is too much effort but feel free to go for it if you feel inclined.

When a child has a seizure

I know people with epilepsy. I have seen someone have a fit from the sidelines and it was scary.

Now that is a possibility every day.

On Monday, just as I am writing the last post, I get a phone call.

“L has a rash and she’s unresponsive.” Preschool. “She told us she didn’t feel well.”

“Oh. OK.” Great. She’ll probably vomit and poo and curl up on the sofa. I prepare myself for a week of unpleasantness. I’m not too worried about the rash as both my children get rashes. They both had baby acne and L suffers with heat related rashes. She’ll also get a rash if she’s annoyed or tired so facial rashes don’t concern me too much.

“Do you want us to bring her to you?” Play leader asks.

“Oh that would be great.” I’m in the middle of trying to get O down for his nap so it would be easier if they came to me. I hang up and finish off the post.

A little while later there is a knock at the door.

“You need to phone an ambulance.” She says, stepping aside to reveal K carrying a limp, pale L. L is gurgling and drooling like she is trying to speak but her tongue is too big. She’s looking around but her eyes are dead. Her face looks swollen.

This is not my child.

I cry. I scream. I feel sick and fear and terror as a piece of my heart is ripped out.

Is she dying?

Can she breathe?


I pick up my mobile which chooses this fucking moment…this awful horrible moment to freeze and I hurl it across the room.

K and Play leader tell me to calm down

“There’s a landline.” I say. No time to piss around with shitty software.

I run to the phone in the dining room.

I’m holding it together as I dial 999 and ask for an ambulance.

One thing could tip me over the edge but I’m holding it together as I answer the important questions – address, telephone number, whats wrong.

K has taken L in the other room so I can’t see her but I can hear K cooing it’s OK.

I pretend this isn’t happening.

Yes, she’s breathing. No, she hasn’t had an accident. Send an ambulance.

“Madam, I need to ask you some questions.”

“She’s two, she’s in the other room, send an ambulance.”

“You need to be in the same room…”

K brings her through. She still cooing it’s OK. We’re all scared. L is clicking between the gurgles. What if she’s like this forever?

“Send an ambulance.”

“You need to answer some questions madam…”

“I know you get this all the time, but SEND AN AMBULANCE! SEND AN AMBULANCE! SEND AN AMMMMMMBUUUUUUUULAAAAANCE.” I scream down the phone at the dispatcher, his calming method failing. Fucking questions.

Play leader takes the phone and K hands L to me as I sit on the sofa.

Baby stay with us. Don’t go.

I hold her tight, the clicking and gurgling noise burning into my brain. It will stay with me forever. The left side of her face is slack, pulling her features down. Her eye begins twitching. Her stare is so empty I can see her brain short circuiting.

A solitary tear rolls down her right cheek. She’s scared. I can feel it. Every part of me holds on to her. She can’t talk to tell me but she’s trying to.

Stay with us. It’s OK baby. It’ll be OK.

What if she’s like this forever? What if each misfire is damaging her?

“She’s fitting.” I call through. They are still on the phone. “Tell him she’s fitting.”

A paramedic arrives and we lay her down on her side. Her left arm joins in the rhythmic movements. She’s put on oxygen. Her breathing is shallow but regular. The mask bunches up her face and closes her eyes and I hope she loses consciousness.

We strip her from the waist down and shes given rectal diazepam. Her whole body begins to jerk. Once a second, each muscle contracting in unison. Her eyes have rolled back in her head.

Come back. Make sure you come back.

“Talk to her mum, she can probably hear you.” The paramedic says.

I lean over her convulsing body and sing into her ear. Twinkle twinkle little star. Baa baa black sheep. Away in a manger. I tell her she’s a good girl, that mummy is here. I stroke her hair and her leg while they do her sats and blood sugar.

Why hasn’t it stopped? Why hasn’t the diazepam worked?

I’m told to get ready for the ambulance. I get my shoes and my coat on. O is put in his car seat.

I take a second to wander outside and ask myself where the fucking fuck is the ambulance?

OH arrives looking pale and sick.

“She’s having a fit.” I tell him. People crowd round her. She’s starting to come out of it. The jerking has stopped. Her lips are blue and puffy and she stops breathing for a few seconds. It feels like a few hours. I tell them she’s not breathing and we roll her over and call her name. They strip her clothes off so we can watch her chest move.

She opens her eyes.

She begins to respond when we call her.

Then the crying starts. She howls. Over and over and i scoop her up and hold her to me, tell her it’s OK. Tell her I’m here, she’s not alone.

The ambulance finally arrives and we climb in.

They tell me how brave and strong I am. They say she was fitting for forty minutes.

I’m not strong. I’m doing this for her. I want her back. I want my singing chatterbox back. I want the girl who annoys me so much with her toddler logic back. I want her back now.

I sing to her in the ambulance. I sing over her screams. I lull her into rest periods where she gains the energy to yell again.

At the hospital I stroke her hand and her hair.

“I’m going to leave the oxygen there are they sometimes fit again as the medication wears off.” A nurse says, leaving the hissing mask at the head of the bed.

OH and mum turn up and we take turns comforting her.

Finally the crying stops and she looks around.

“Mummy.” She whispers. I go over and she hugs me tight to her with her right arm. She’s yet to use her left arm.

But she’s back. That’s the important thing. She’s back.

I point out her left side weakness to the doctors and they make her stand up, which she does.

It’s normal.

She has Benign Rolandic Epilepsy in childhood