Who Am I

Memory problems are a big issue with epilepsy and epilepsy medications. There is also a common problem for people with fibromyalgia called "Fibro Fog". Put them together and a lot of the time I have a case of the light is on but there is nobody home. Contrary to popular belief I do have a fully working brain occasionally! Those times are few and far between at the moment though.

Last week I took my tea out of the freezer, put it on my plate and tried to eat it. Completely forgetting most important part of cooking it.

On Wednesday I text Chris to remind him about something but I had no idea what it was, I've had friends come round that I've completely forgotten I've invited. I've put cereal in the fridge, milk in the cupboards. I have no idea where I put things.

I can remember the date of my holiday in 1988 but my short term memory has gone. Chris can tell me something and I'll immediately forget. It's amusing and frustrating in equal measures.

A big shout out to Sam boy who tried to teach me how to do a Rubik's cube yesterday in these circumstances. I think I must have been your most challenging student!

Also big thanks to my lovely friends who took such good care of me yesterday. Especially Laura who stuck her foot out to protect my head when I fell!

Leanne

A year ago today I attended the funeral of my good friend Leanne. She was 36 and died from a brain tumour, leaving behind a husband and three young children. I think about Leanne a lot while i'm dealing with all these problems. She dealt with her illness and prognosis with such dignity. I'll never forget when she told me her tumour was stage 4 and she was dying. She was so matter of fact about it, she could have been telling me what she'd had for tea. She never complained, never made a song and dance about it. She just got on with it. When my symptoms first started getting worse in February my main fear was a brain tumour. It was such a relief that it was "just" epilepsy. I'm not sure I would have handled it with as much grace as Leanne did. As always my thougts are with her family today. She is very much missed by us all.

Emily's Story

As I have written a story for Emily she decided she wanted to write one for me. She dictated it and I wrote it. This is the mind of a four year old girl...

Once upon a time there were little girls called Emily and Annie and they went to the park. When they went to the park they lost their wellies and when they found their wellies they wanted to buy some ice cream and chocolate. When they went to buy some they went home to get their lunch and tea and then it was bed time. When they went to bed it was morning time again and they went all over again. They went to see the ducks and saw the clouds when they had a picnic and it was so beautiful and there were so many flowers. 

They went to pick some flowers because it was Mother's Day and they made their mothers breakfast in bed. They went back downstairs and watched telly and when they watched telly the mummy had a baby born and he was called James. They went back to daddy and mummy and said "Chris, Katy" but meant mummy and daddy and said "hmm I'm tired" so went to bed. They went to sleep again. When the dad said its morning time again Emily said "it's time to watch telly" but they couldn't find the switch so they cried. Dad found it and they said "wahahaha" in the beds and asked if James could watch telly too. 

They wanted to make a cake and dad said "look how much you've grown". 

I'm quite impressed to be honest. It's better than most of my stories.

Mummy Went Splat

I've been trying to find different ways to help the kids deal with my seizures and one thing they find hilarious is when I go "splat" on the floor. I decided to use this to write a book/poem for Emily to read before bed. I wrote it last night so it's very much a work in progress but she loves it. Even James laughed and he's a pretty harsh critic.


"Mummy Went Splat"

My mummy thinks she is a superhero
I don't know why she thinks that
Because every time she tries to walk
My mummy goes splat

My mummy pretends she's in the circus
Doing moves like an acrobat
She wibbles and wobbles, tries to stay up
But mummy still went splat

My mummy sits with me in the sunshine
But I don't want to wear my hat
She tries to come and chase me
Oh dear, mummy's gone splat

My mummy tries to cook my tea
And carries it onto the mat
I can see where this is going, uh oh
My mummy went splat

My mummy takes me to bed at night
Tucks me in with Kitty Cat
She leans over to give me a kiss
Oh mummy you went splat

My mummy says she's a superhero
Now I know why she thinks that
Because she still tries to look after me
Even when she goes splat

A Gold Star/Sleepy Sunday

So proud of myself because I got a gold star woo hoo! I have an app on my phone to track my seizures. If I have a seizure free day then it pops up with a gold star. If only I got a real gold star sticker to wear all day. That would be amazing.

I'm calling today Sleepy Sunday as I only managed to stay awake for half an hour this afternoon. Just long enough to eat a sandwich. I woke up again late this afternoon to a full roast dinner cooked my wonderful husband. Life's not so bad! A couple of falls along the way but can't complain too much. I had to be rescued from the bathroom floor but that's pretty standard these days. Maybe a gold star tomorrow, we will see.

Mann Down

I really should have called this blog Mann down. Three more falls last night. James tried to pick me up and declared I was "heavier than I looked" so left me on the floor. I also had a weird head spin thing going on. It's never happened before my head flew from side to side in a circle. It was so fast I thought I was going to get whiplash. Chris was very disappointed to miss it and sadly for him it never happened again.

Things have been a bit better today although I didn't get up until 1.30pm and then back asleep by 2.45pm so I suppose it depends what your definition of better is. Emily had her first ballet show so I had to make sure I was rested for that. I'm not sure they would have appreciated me shouting out random swear words. All went well and she was a little star.

My blue badge should arrive next week which is not a milestone you expect at 36. It will make life easier but I'm most looking forward to the day I can give it back. I also can't wait to read this blog back in a year and see how far I've come. One day this will all be just a blip in my life and we'll look back and laugh at how crazy it was.

Mann down but not for long.

Yesterday was a very difficult day. It was my first (and probably last!) day home alone with the kids. All was going well and we were having fun. James wrote a song about Minecraft and Emily performed a routine. Then mid afternoon I went into the kitchen, did a double wobble and crashed on to the floor. No husband around to catch me (or punch me) this time so I went splat. I sat on my office chair for a bit and tried to come round but ended up having to get my mum to come round to help.

I went outside to get some air and once I felt a bit better I came back inside with my mum holding me. As we walked inside it happened again and due to way I was holding on I ended up flat on my back on the floor. Really regretting wearing a dress yesterday.

Things didn't impove much in the evening and I fell several times before bed. I tried to self medicate with chocolate but it didn't help much. Worth a try though! So all in all a pretty rubbish day and not a great start to the holidays. Back to the neurologist next week so hopefully he'll have a plan.

I had some bad falls last night so a few more bruises to add to my collection. Chris is pretty good at catching me although at the weekend he missed and punched me in the stomach. So mean! I do get a little warning before I fall, just enough for Chris to see out of the corner of his eye and run over to catch. 

The kids are quite used to me being randomly on the floor. They just think it's funny and do impressions of me falling and shouting. 

If I'm in the wheelchair when it happens or sitting down my head just falls down and I look like one of those nodding dogs in cars. 

The epilepsy nurse has referred me to a care team so I'll be getting an alarm to wear round my neck. If I'm home alone and fall I'll be able to press the button and someone will come and help me. 

I've been banned from driving which as I don't have a license anyway doesn't make much difference to me! I get a free bus pass but I can't go out on my own at the moment. One day...I can dream of days going out by myself on the bus! Dream big. 

It's been an exciting day today...I left the house twice! I got an unexpected trip to the doctors with an infected finger. I'm on immune suppressants for my arthritis so I went from mild pain to chop this finger off now very quickly. I'm now sporting a fetching bandage on my middle finger so I can accidentally stick my finger up at people while swearing at them. Nice! 

Obviously this played havoc with my nap routine and lack of sleep means more seizures. I had three falls before I even left the house this morning. 

Last time I went to the doctors I was having a bad verbal tic day and my word was "no". I have no control over the words, they just come out. The doctor was asking me questions to which I replied "yes" but then shouted "no". Most confusing for everyone involved! 

This afternoon I was wheeled out again by my lovely in-laws who took me to Emily's nursery for a goodbye picnic. It was her last day at nursery today. It was also the hottest day of the year and we all melted into a big puddle. 

I now have almost seven weeks to entertain the kids whilst housebound and disabled. Oh and I can't drink. Thank goodness for grandparents! 

Slug life

So the purpose of this blog is to see the funny side of life. Life may be very difficult right now but I still have my sense of humour. I can only compare my life at the moment to one of a slug. I spend most of my time horizontal and moving slowly from room to room. The difference is I have arms so while I may feel as useless as a slug right now I still have the ability to type.

It all started when I decided to buy some trainers for Christmas. That was a big mistake. Then in January we booked trips for the summer (first time to take both kids abroad). I tempted fate and by the end of February I was in a wheelchair. That's karma for you.

Countless hospital appointments, vials of bloods taken, every test the NHS does and finally I was diagnosed with epilepsy. Atonic and myoclonic seizures. Atonic literally means loss of muscle tone so at any given moment my body becomes like jelly and collapses. I have knees like a three year old with grazes and bruises all over. Myoclonic seizures are jerks, shakes, twitches, verbal tics and physical tics. Think Tourette's style for the verbal tics.

A couple of weeks ago I was also diagnosed with fibromyalgia. Add in my previous psoriatic arthritis diagnosis and I collect chronic illnesses like kids collect football cards. Fibromyalgia means I don't get into the final sleep stage so I don't get restful sleep. I can (and do) sleep all night and day and still feel constantly knackered.

So now i'm on epilepsy medication for life. I take Keppra which is most famous for "Keppra Rage" yes that is a real thing. Imagine a toddler tantrum in a adult's body with the odd bout of tourette's swearing and movement disorder. It's not pretty. Thankfully i'm getting over the Keppra rage as my body gets used to the drug. Keppra also knocks me out as I'm on a very high dose. The chances of me being awake at any given point at the moment? Slim to none.

Cooking - well that is fun. Bearing in mind my previous cooking method was wait until the smoke alarm went off and then remember I had something on the grill. My current cooking methods are rolling around the kitchen on an office chair so I don't fall and putting a meal in the microwave.

I see many posts on facebook about people who achieve amazing things like 5k runs, tough mudder etc. I'm over here like yep I walked to the kitchen and got my own drink *takes a bow* My goal is to be able to walk to the local shop and buy a loaf of bread. Maybe a magazine too! Life goals right there.

So pretty much the only thing I can do at the moment is write and if it can raise some awareness of chronic conditions then all the better. At least it gives me a bit of focus. I'll throw in some kid-isms along the way as they are far funnier than me.

For more information about epilepsy, go to www.epilepsysociety.org.uk
If you would like to talk to someone about epilepsy, call their confidential helpline for information and emotional support.
Epilepsy Society Helpline 01494 601 400 Mon and Tues 9am-4.30pm, Wed 9am-7.30pm