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.

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

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!

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. 

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.

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

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

More News

I've had a an exciting week with my article being published by the Epilepsy Society. Writing keeps me sane when I can't get out and about.

I saw the consultant on Tuesday and I have been diagnosed with....deep breath...epilepsy, narcolepsy, cataplexy, tourettes and possibly postural orthostatic tachycardia syndrome! Not much then! He believes at some point in my life I had an infection which affected the membranes around the brain cells. This caused the cells to misfire and the result is all this crazy action in my brain. It's a lot to take in but now we can treat the symptoms. I always suspected I had a misfiring brain! Now we can crack on with treating it.

Thanks to everyone who shared my article yesterday. It feels great to know I can do some good while being stuck at home. I really appreciate your lovely comments too so a big thank you xx

Falling Downstairs

Last week James definitely...probably...possibly saved my life. Normally I go up and downstairs on my bum but I was chatting to James and got distracted. I didn't realise I was standing at the top of the stairs. I started to wobble and next thing I knew I was falling down. Thanks to some quick thinking from James he grabbed my hood and bumped me slowly down the stairs one by one. I was battered and bruised but it could have been so much worse.

Today I've been to see my neurologist. I start more medication next week as it's clear the one i started last year isn't working. Fingers crossed this is the one for me and i can get back to normal. The good news is the medication I started at Christmas has calmed my tics and jerks so at least something is working!

I've got a new facebook page for this blog which you can find here. My lovely hubby has even made me a logo for it.

Finally watch out next week for something special for International Women's Day :)

Tips for looking after children when you have Epilepsy

In my second post for Telmenow I wrote about looking after children when you have epilepsy.

I was diagnosed with epilepsy almost a year ago now and one of the toughest challenges for me has been looking after my two children, James (9) and Emily (5).
I have atonic seizures, which means I fall several times a day. I use a wheelchair most of the time and it isn’t easy chasing after two active children.



I’m lucky in that my in-laws and my parents live close-by and are on hand to help out. I need help with all aspects of parenting but mainly getting the children to school and back and to various activities. Also, having epilepsy means I can’t drive so I’m virtually housebound at the moment.
My children are fantastic and know that Mummy is limited in what she can do. I have an alarm around the house so if I do fall and hurt myself we can press that for help. Both my son and daughter know how to ring Daddy to come home if I have a bad seizure.
They’ve had to grow up faster than I would like but I’m proud of them both for knowing what to do in an emergency.
Juggling children and a long-term disability is a huge challenge and one we are taking day-by-day. I know I can call for help from family and friends and that is a huge weight off my shoulders.
I wish I could be a normal Mum and do activities with my children but I know they understand as much as they can. One day I hope my quality of life will improve and I can be fun Mum again.

Top tips for looking after young children when you have epilepsy

• Make sure you have family and friends numbers stored in all phones so your children can ring for help, if necessary
• Have an alarm fitted so you can press for help easily


• Get someone to batch make meals for you so you can just grab something from the freezer and defrost a meal
• I use an office chair on wheels around the house to get around
• Make sure school is aware of the situation so they can support your children
• Don’t be afraid to ask for help, most people are happy to help out with school runs or pop to the shops for you
• Online shopping is always useful when you are housebound
• Ask your partner’s employer for flexible working hours so they can be around at school-time. My husband works a late shift so he can take our children to school
• Teach children basic first aid (for falls in my case)
• Give neighbours a key so they can get in in an emergency
Ti

Wilson's Disease

It's been a quiet few months on the blogging front but there's been a lot going on behind the scenes. I mentioned before that I was being tested for horrible things. Last October my neurologist brought up the possibility of Wilson's Disease. WD is a genetic condition where the body can't get rid of copper and you end up with a toxic amount in your body. If untreated it is usually fatal before 40 but if found can be easily treated with medication.

So in October I did the copper test and anxiously awaited the results. I was told it would be mid November before the results came back but even by my next neurology appointment in December we still didn't have them. Then on 4th January I got a letter to say my copper is indeed high. It was and still is an extremely stressful time.

Although the neurologist referred me on we couldn't wait another six weeks so we booked to see a private consultant. WD is treated by a gastroenterologist. We saw him last week and his view was that the copper was only slightly high so probably wasn't WD but obviously can't say for certain. He wants to start the testing again and see what results we get next time.

In the meantime things have really gone downhill and I'm back in the wheelchair full time again. I'm falling daily and couldn't get upstairs last night. Everyone is looking after me but it is incredibly frustrating not to be able to do normal things.

Tomorrow is a trip to the cardiologist and then Wednesday is a liver scan. Don't say i don't get out! It's hard to be my usual cheery self when all this stress is hanging over me but normal service will be resumed soon. I'll get there.