Friday, 28 July 2017

Two Boys Named Charlie

Today baby Charlie Gard passed away. I think we all felt a little of what his parents must have gone through. They fought so hard to keep him alive and for them every second counted. Every hour with their Charlie mattered and was worth fighting for. In our case we were told the day before that our Charlie needed his life support turned off. We were given the recommened option of doing it that day or waiting until the next day when everyone could come and say their goodbyes. The reason they recommened the same day was because they were worried one of his seizures would kill him but we insisted on waiting. Thankfully he survived long enough for him to have a peaceful death with the two people who loved him most in bed with him.

Our thoughts are with Charlie's parents and the long road ahead of them. We've just passed our Charlie's 7th birthday and although the grief is different it is still there. More of a loss of someone who should be here. We think about our Charlie every day and no doubt the Gard's will do too. We send them lots of love.

Wednesday, 21 June 2017

Things Can Only Get Better

I decided I would update today but I didn't realise how long it had been. The reason I've been so quiet is because I've been so bad. We had a fantastic holiday to Majorca in May although I was very limited in what I could do. That's why you have lilo's though! I lazed around the pool and slept a lot. The kids had a brilliant time and that's the main thing.

The trip almost killed me (perhaps slight exaggeration!) and I spent ten days in bed recovering. I'm still bad now and can barely walk. It's going to take me some time to recover and this heat doesn't help. Last week I had one night where I had seizures all night and neither of us got any sleep. Things were improving a little before I went on holiday so it's even more frustrating.

It was James's birthday last week. My first baby is ten! Chris's parents kindly offered to host his party which we were very grateful for. We had fantastic weather and the paddling pool out. Five very happy cousins!

Last week I also had two appointments in one day at the Royal Stoke hospital so we decided to set me a bed up in the back of the car. I'm sure that didn't look too dodgy at all!! Still it was better than travelling home just to come back.

Today I'm shaking so much I can't even use the touch screen on my phone. Typing on the computer is a little easier but I was struggling to text before.

To quote D:ream...things can only get better

Friday, 21 April 2017

Meningitis

Meningitis. It's a word you've heard me use many times but this time it's about me not Charlie. My Neurologist and my Neuropsychiatrist believe all my problems stem from an infection. My Neuropsychiatrist in particular believes it is from meningitis. Meningitis I hear you ask? The very same meningitis that killed your son? Well no not exactly. It was probably viral meningitis and I didn't even know I had it. How can you not know you had it? Are you stupid? Well it's probably best we don't answer that one but yes it's perfectly possible to have it and not know. What are the chances of two people in the same family having meningitis? Slim but hey we don't do things by halves in this family!

So how do you cope with having the after effects of something that killed your baby? Well the truth is I'm relieved. Firstly to have an indication why I'm so ill and secondly to feel just a little part of what Charlie went through. It bonds us even more and something else we share. I want to share his suffering as any mother would. There is something poetic in us both going through something similar. He will help me fight this and now I have several causes to fight. Bring them on!

Tuesday, 11 April 2017

Cuckoo

It all went a bit wrong last week. I became very bad Monday evening and couldn't get my words out. The only word I could say was Cuckoo! I go up a level on my tablets each Monday and it really affected me. I was like a drunk octopus and couldn't speak except nonsense. It did sound a little like I'd made my own language up! This happened on Tuesday too. I had my lovely friend Laura round who was helping me walk. As I started to fall she groped me! She says she was just trying to catch me but we both know the truth don't we Laura??

Laura's mum has got me a new chair to whizz about the house on. It's great and I can hang on to it when I'm falling although sometimes I fall off it. I have been really bad this week and have had several incidents where people have had to come and rescue me. I'm covered in bruises. We also enjoy playing charades when I can't speak. James is great at it but Chris is rubbish!!

On Wednesday Emily began wheezing and we got a call from school to pick her up. To cut a long story short she ended up spending two nights in hospital with a chest infection. Even worse I couldn't stay with her so my amazing mother in law slept with her for the two nights she was in. We're very lucky to have such good friends and family who offered to help.

Monday, 3 April 2017

My Mummy Uses A Wheelchair

My Mummy uses a wheelchair
Her legs don't work anymore
When she tries to stand up
She falls down on to the floor

My Mummy uses a wheelchair
When you see her say "hello"
Please don't ignore her
Because she's a little bit too low

My Mummy uses a wheelchair
She says "I'm still the same me"
"I'm silly, funny, grumpy"
All the things you normally see

My Mummy uses a wheelchair
She finds it hard to use
She wouldn't want to be in it
If anyone would let her choose

My Mummy uses a wheelchair
She just wants to join in
So don't forget she's down there
Just give her a special grin

My Mummy uses a wheelchair
It's not so bad you know
She can do spins, races and wheelies
Stand back and watch her go

My Mummy uses a wheelchair
I love her and I don't care
Because even when she's ill
She knows I will always be there

Wednesday, 22 March 2017

Narcolepsy

Well I'm not going to to run out of things to write about anytime soon!

Narcolepsy is the latest thing to give me trouble. We went out for lunch on Sunday as an early Mothers Day treat and I almost face planted my lunch. A coat on the table meant I could have a nap while eating. There's no choosing when I sleep, it's when my body allows me to stay awake.

Yesterday I fell backwards into the bath. Chris had left me sitting on the side and as he turned round to get a towel I fell backwards into the empty bath. Legs dangling and arms flailing he picked me up and put me back in place. It's a good job he's there.

I've had more falls than I can count this week. I've had a bad cold which made me worse and quite weak.

This Sunday is wear purple day for Epilepsy so I will be wearing purple to support my fellow epilepsy fighters!

For more information about epilepsy, go to www.epilepsysociety.org.uk

If you would like to talk to someone about epilepsy, call our confidential helpline for information and emotional support.

Epilepsy Society Helpline 01494 601 400 Mon and Tues 9am-4.30pm, Wed 9am-7.30pm

Monday, 13 March 2017

Gerald

Gerald is my new alter ego. I haven't been shouting much recently because the medication I'm on is working really well but when i do shout it's brutal. My voice changes to much deeper level and my language is appalling so we've named him Gerald and given him a whole story. He's an old man who lives by himself, has no family or friends and sits at the end of the bar in the pub swearing at people! Some examples of Gerald's work "F off" "F...ing men" "Guess Who" (that was because Emily had left her Guess Who game out). Of course "Cock" came out a lot. Gerald likes to say that a lot. Poor Chris was terrified. The highlight was when Chris asked me where his toothpaste was and I answered in my normal voice "I don't...." and then Gerald stepped in "...f'ing know" Chris just doesn't know who he's going to get!

As a non sweary person normally it's very hard to violently swear at people and I find it mortifying. Thankfully it only happens occasionally these days and Gerald stay away. If you hear me swearing you know Gerald is back!