Thursday, 15 December 2016

Holiday to Stoke

It's been a rather eventful couple of weeks here. I posted on Facebook that I made it to school without my wheelchair one day. Oh how the universe laughed at me. It's all been downhill ever since. My seizures have been terrible the past two weeks. My shouting has progressed from cocks to ducks. Well not duck but you get the idea. James is shocked yet slightly excited by my swearing.

On Tuesday I had the mother of all seizures. The full blown body shaking, eyes rolling, everything you imagine epilepsy to be. Being me though I didn't just have one, i had several all in a row. We weren't counting but we estimated 10-15 seizures with about 30 seconds in between each one. Emily said i looked like I was dancing and James said I looked like I was possessed! So we took a trip to Stoke A&E which was a lovely evening out. I highly recommend it. Everyone calls you duck so I can get away with my swearing there. After a four hour wait I was pretty much back to normal so I got to come home. I start new medication very shortly so there wasn't much else they could do.

It's really shaken me up physically and mentally. Physically it felt like I'd been on a spin cycle in a washing machine and my brain was rattling around. Mentally I'm scared it will happen again. It wasn't a pleasant experience and not one I'd want outside of the house. For now I'm taking it very easy and getting my strength back. They took ten vials of blood from me this morning at hospital which I think is a personal record!

Is it 2017 yet??

Tuesday, 29 November 2016

An Update

I haven't blogged for a while due to feeling a little uninspired. I'm waiting for some scary test results to come back so that has been on my mind a lot.

I've also managed to give myself whiplash from a nasty exorcist style head spin. We had Emily's birthday party on Saturday and my legs have been wobbling ever since. I've been asleep for days to try and recover. It's not too dissimilar to having a hangover but not as much fun.

So all in all things are going well!

I had two splats at Emily's party, no cocks though thank goodness. They seem to have gone now although I occasionally shout "no" at people. I'm due to start new medication very shortly depending on these test results. Either way I will be starting something new. The neurologist believes there may be something more than "just" epilepsy going on. We just have to try and get to the bottom of it.

Monday, 17 October 2016

37

I don't know about you but I'm feeling 37. Not so catchy but it's my birthday! I never thought about 37 being a milestone but after this year it feels like an achievement. Bring on the Prosecco and smarties because I'm celebrating!

According to my presents I am a Poldark loving, inhaler losing, mermaid. Sums me up pretty well! I've had a great few days with family and friends and more to come this week.

37 is going to be a great year...I can feel it in my achy bones!

Wednesday, 12 October 2016

Maximum Dose

So I'm officially on the maximum dose of my medication now. All 3000mg of it. I had several falls at the weekend but I've had a bug and antibiotics so I'm putting it down to that. I'm still optimistic that the maximum dose will work and I'll be back to a fully functioning human being soon. I should be back to the neurologist soon but their idea of soon and my idea of soon are quite different. I think they work in dog years. I've walked to school with the wheelchair a couple of times so that's nothing short of a miracle.

Emily is busy planning her spectacular birthday party which is a Cinderella and My Little Pony mash up. She's invited most of the school and if you didn't see it earlier she has decided to put a lock of her own hair into each party bag. Genius! She has list of invitees, a reserves list and a list of those not invited. On the not invited list is anyone else called Emily. Apparently she is the only Emily allowed at Emily's birthday party!

Speaking of birthdays the celebrations of my birth are beginning this weekend with a nice meal out on Sunday. Basically we are celebrating the miracle of me still being alive and making it through 12 years of untreated epilepsy. That's if I make it until Monday, better not speak too soon. Don't want to jinx it!

Monday, 10 October 2016

October is a bit crap

I see so many posts about how wonderful October is and how lovely Autumn can be. This is my post to tell you how crap October is...

Bugs, germs and anything else to make you feel like crap - thanks school!

I get a year older, more wrinkles and more grey hairs

Anniversary of Charlie's death - nuff said

It's hot, It's cold, It's warm, It's freezing - let's wear our entire wardrobe in one day

I feel the need to start buying Christmas presents

I forget I've already started buying Christmas presents until I hide the new lot

We have to pay out for two birthday meals because annoyingly me and Chris were born two weeks apart

I have to put up with constant mocking that I'm older for two weeks - if you had arrived on time Christopher we wouldn't have this problem!!

Leaves fall off the trees and make me sad

My flowers pretend to die and make me sad

It goes dark early and that makes me sad

I feel the need to redecorate - no I don't know why either

It's cold, dark and miserable for NO REASON

Did I mention I'm a summer person?

Christmas is quite good too

So let's skip October...deal??

Wednesday, 5 October 2016

Birthday Cards

As I am writing a birthday card I thought this was a good time to explain why you may not get one and why. It's a long process for me to get a card in the post. Here's a brief run down of what has to happen...

I have to remember it is your birthday
I have to remember to ask Chris to buy you a card next time he is at the shop
Chris has to remember to buy the card next time he is at the shop
Chris has to remember to tell me he has bought the card
I have to remember he has bought a card and where I have put it
I have to remember to write it
I have to remember to give it to him to post
He has to remember to take it and post it

As you can see there are many steps of remembering and frequently I fail to do so. If by some miracle you do receive a card from me then I would frame it and bring out each year just in case! Please don't be offended if you don't get one as somewhere the process has failed. I have many cards that have been bought and not sent or ones that have been sent to the wrong people! My Dad was thrilled to get a "New Baby" card at the age of 65! Just know that somewhere in my brain I did at some point remember it was your birthday so Happy Birthday!

Sunday, 2 October 2016

10 Reasons to Love Facebook

There's so much negativity about Facebook and social media and how it stops you having "proper" relationships. I couldn't disagree more so here is some Facebook love. Ten good reasons why we should love Facebook...

1) As someone who is unable to get out and about much social media is my lifeline. I can chat to my friends on the sofa and have a good laugh. I can have drinking competitions while watching Strictly and put the world to rights without leaving my bedroom. It has saved my sanity on many occasions this year.

2) I have 366 friends with 366 different opinions. Instead of deleting people for having a different opinion to you why don't we take the time and listen to what they have to say? Failing that spam them with a passive aggressive meme.

3) I have friends in Japan, Hong Kong, Australia, New Zealand, France, Switzerland, Belgium, USA, Canada and one travelling the world in a camper van! I've learnt so much about different cultures from them and love to see their photos of different parts of the world. I can chat to people all over the world and not lose touch just because they are in a different country.

4) I can update everyone i know in one easy status. Frankly I'm just lazy and if i can just post it on Facebook I will.

5) I can say things I wouldn't be able to say in person. Yesterday I read about the death of a baby boy and was able to offer my condolences. If it wasn't for Facebook I wouldn't have been able to reach out and offer support. It helped me hugely after losing Charlie and it gives me the opportunity to do the same for others.

6) My kids are hilarious and where else would I share my anecdotes??

7) As above but with pictures. Print them off and put them in frames?? Who has time for that?? If I take a selfie it's because it's the first time in weeks I have looked vaguely human. We must celebrate this miracle.

8) Memories - the good, the bad and the ugly. They usually give me a good laugh and that's what it's all about.

9) I'm nosey. I admit it. I want to know if you have split up with your boyfriend, moved house, pregnant etc etc. Even if I haven't seen you for 30 years.

10) Facebook debates are my all time favourite sport. Whether it's Brexit, Strictly or Americanisms I enjoy a good banter. It keeps my brain working and I'm open to changing my mind on issues. Well apart from Brexit, guns and Aidan Turner.

So there you go, ten reasons to love Facebook. I'll be writing for Buzzfeed before you know it ;)

Friday, 30 September 2016

Parenting Expert

It's been a very exciting week this week. I got my hair did (as my American friends would say) so I look fabulous around the house. Well I did briefly, normal service has now been resumed. I got a new armchair...whoop! All ready for my stream of visitors so they can have a nice comfy seat next to the fire.

Also rather randomly I was contacted by a producer from Key 103 to say she had read my blog and could I contact her. She wanted some comments for a parenting chat they were having on the Late Show. Now obviously my parenting skills are renowned across the North West but even I was a little surprised. Still I am one step closer to getting on Strictly Come Dancing which is the ultimate goal. I'm pretty sure I could get on Celeb Big Brother with these credentials.

I was having a great week until it all went a bit pear shaped last night. I think I've picked up some school germs (thanks kids) and it set my seizures off. Still a bit off today so I've the spent the day horizontally trying not to mess my hair up.

Ooh nearly forgot the most exciting bit...it's new cardigan week! My mum took me shopping on Monday and we got my annual new cardigan. This has been ongoing for many years and I know people start getting excited from August onwards and wonder what I'm going to buy. Last year I went crazy and bought a purple one which looking back was the beginning of the end. I'm not sure I can blame being ill entirely on the cardigan but the signs were definitely there. This year I calmed down a bit and went for grey. Let's try and rein it in and see if it helps. Might have to go back to beige next year if I'm still ill.

Saturday, 24 September 2016

Being Profound

I was thinking in bed this afternoon before my nap about how people see people with disabilities. The two types I see are that they are fakers, scrounging off the government or the second that they are some kind of superheroes who can do anything they put their mind to. The reality is I am none of these. I can't just do anything I put my mind to, I wish I could! I don't want to be stuck like this. I couldn't run before I got ill but I did enjoy a good walk and a night out here and there and I'm looking forward to getting back to being that person. I'm not a superhuman, inspirational person. I'm just trying to deal with the crappy hand I've been dealt. I worry that I will die without doing some amazing that I'll be remembered for but that's because i read too many books about incredible people! I love reading about people who have escaped adversity and changed the world. If I don't change the world before I die I'll feel I've failed. We put too much pressure on ourselves to be out of the ordinary when just being ordinary is very underrated.

I just want my children to grow up to be contented and happy with their lives in whatever they chose to do. They don't have to be anything spectacular for me to be proud of them. I know they struggle with me being ill and for their sakes as much as mine I hope I get back to normal quickly. Losing their brother was bad enough and it's hard for them when I can't do things with them.

So I'm not going to be an inspirational, superhuman. I'm just going to focus on being normal. A normal person who just has a bit of bad luck and is damn good at dancing! ;)

Wednesday, 21 September 2016

Operation Sociable

Operation sociable is going well so far and I had a lovely coffee with Rachel yesterday. It was all going well until she left me stuck in the doorway in the wheelchair and I had to shout for help! Other than that we had a lovely afternoon and good company. I'm getting quite good at manoeuvering in my wheelchair but training for the paralympics is slow. I've got four years so you never know!

I was at hospital today to see the epilepsy nurse. I tried to walk into the hospital but ended up splat on the floor so that was a big fat fail. I like to give it a go though, A lady in the lift told me to keep smiling which I would say I'm pretty good at. The nurse has upped my meds to the maximum dose so I'll be very tired again for the next month. What do you mean there will be no difference?? Life and soul of the party that I am. It was probably all the partying that got me in this mess!

I've managed to get to school twice this week (with the help of friends) so I can be there when Emily gets out of school. I'm very grateful to everyone who has helped me in the past few months. I couldn't do it without you so a big thank you.

Friday, 16 September 2016

A Cock Free Week

The good news is I have gone a whole week without shouting anything! No cocks all week! The bad news I tried to walk to school today (hanging on to the wheelchair) but ended up falling when I got home. I really want to make that journey without any falls so it was a bit disappointing. As long as I stay in the wheelchair I seem to be ok but once I start pushing myself I fall. It's so frustrating.

I've been out for breakfast this week which was lovely. Still trying to get out a bit more and see people. Always open to offers! I can only do one thing per day so as long as I don't have any appointments I can go out for a bit.

The kids have done brilliant impressions of me wobbling and falling today. Do you remember the book "Mrs Wobble the Waitress"? It was a bit like that. Actually anyone that knew me at uni probably wouldn't notice much difference! Bit unsteady on my feet, slurred speech etc. Just without the fun bits!

Next week I have an epilepsy appointment so another trip out of the house. How exciting! This time last year I was on a beach in Majorca sunning myself and now I look forward to hospital appointments! I'm determined to get my life back and start walking properly again. At least we've cured the shouting so that's a good start. Onwards and upwards.

Saturday, 10 September 2016

Alarmed and Dangerous

I've been slacking on this blogging business this week. I had social services round on Wednesday to talk about alarms and on Friday they came to fit them. I have one round my wrist which connects to a central system so if I have a fall I can press it and somebody will come to help or send an ambulance. They also fitted smoke alarms which connect to the same system. I did point out that my method of cooking usually involves the smoke alarm going off but apparently this isn't a problem! Also slightly concerning is the big red button now attached to my wrist. I have a nine year old, a four year old and a husband obsessed with pressing buttons so I can see this being a problem! The kids have had a practise so they know what to do in an emergency.

I've managed to go out for a coffee and have lunch out this week. Had a few cocks and nos but can't complain really, I would say overall my shouting has improved. I had six falls on Friday morning so gave up for the day and went back to bed. Emily has absolutely loved school and is desperate to go back next week. One more week of half days and then she can go full days which will make things easier.

I reached 5,000 hits to this blog this week so i'm really happy with that! With Charlie's blog I spend a lot of time promoting it so it gets lots of hits. I'm really pleased my new little blog is getting lots of visitors too so thank you for reading!

Tuesday, 6 September 2016

Where's the Washing Machine?

Have you ever walked into a room and forgotten what you came in for? That's what happens to normal people. Have you ever forgotten where you keep the washing machine? That's what happens to me! I get lost in my own house and forget where I am. Chris is quite used to me shouting him and asking where I am and where I should be going. We don't know if it's the epilepsy or side effects of the medication. Either way hopefully it is temporary. My Granny suffered with dementia in her later life so we call it my Granny moments. It's a temporary loss of memory and then a bit later i'll be fine. I find it difficult to type at times too and quite often miss words out or put the wrong word in. My brain gets very confused at the moment so if i don't make sense you know why. That's my excuse anyway!

Lots going on this week with people coming to assess my house for alarms etc. Plus my baby started school today. I'm sure she's had a wonderful time but I can't believe she's old enough for school. She fell asleep on my chest last nightt like the baby she still is. I may have had a few tears dropping her off. I'm just glad I got out of hospital in time to be there for her first day. Can't wait to go and pick her up!

Wednesday, 31 August 2016

Falls 8 - Cocks 10

So I've been out of hospital over a week now and on new medication for ten days. My count for the past week is....drum roll please.......

Falls - 8
Cocks - 10 ish

That's not too bad for me. Plus I had three days of absolutely nothing. Most of these were in clusters so overall I'm pretty pleased with how things are going. I've reduced the new medication to one a day to get rid of the side effects and so far so good.

I've been trying to recover at home since I came out of hospital but yesterday afternoon we went to the Scout Camp. It was great fun and I didn't move. I just sat there and shouted "cock" while people brought me food and looked after my kids. Win! We sat round the fire and watched the stars. It really was the perfect evening with great company.

My new (school) years resolution is to try and be more sociable. If anyone is up for taking a slightly sweary, part crazy lady out for a coffee please get in touch. My only requirements are a lift because nobody in their right mind would let me drive. I guarantee you will be entertained!

Friday, 26 August 2016

Guest Blogger



Waiting for a diagnosis of any condition can be frustrating, especially when you are experiencing symptoms and you are unable to treat them…
Katy tells her story of how she waited 12 years before she was diagnosed with epilepsy.

I was finally diagnosed with epilepsy in April, after 12 long years of not knowing what was wrong with me…
My falls, twitches, jerks and tics were later diagnosed as atonic and myoclonic seizures.
In February, my health took a severe turn for the worse and I spent weeks having test after test. I think I’ve been to pretty much every department in the hospital now!
Eventually, I saw a neurologist who arranged for me to have an EEG. Thankfully, they managed to provoke a seizure – by having me breathe in and out very deeply – during the EEG and they could immediately see it was epilepsy.
Finally, I had the answer I had been waiting for.
Of course, I expected a miraculous recovery and by the weekend I would be back to my old self. Sadly, it doesn’t work like that and epilepsy medication is a tricky thing…

Finding the right medication

It takes months to get to the right dose and be fully effective. Sometimes you may need more than one type of medication or to gradually increase the dose until the seizures are under control.
Nobody told me how exhausted I would be, how I wouldn’t be able to get out of bed some days. The levels of medication were so high that I felt like a zombie and was still having some seizures.
I’m still very much a work in progress and I speak to my neurologist and epilepsy nurse on a regular basis.

Keeping myself safe

I use an app on my phone to track my seizures, which I find really useful. I can add triggers and side effects to my medication. I can also print it off and take it to my appointments.
I have been referred to a care team to have an alarm to wear around my neck for when I am home alone. It will give me peace of mind that I won’t be stranded on the floor all day while everybody is out.
Nobody wants to be diagnosed with epilepsy but these are the first steps to getting my life back. At the moment I am housebound, in a wheelchair and unable to do even simple things alone.
With the right help and support I will be back to being independent again and living, instead of just surviving.
To anybody looking for a diagnosis…I would say keep pushing, don’t give up and make sure you get heard.
Many professionals will try and dismiss you and I was told many times it was anxiety or stress. Keep going back until somebody listens to you.

Thursday, 25 August 2016

Hospital Laughs

So I met some amazing characters while I was in hospital. I will change their names for privacy.

There was Susan who swore blind she was 182 and sang "Oh dear what can the matter be" on a continual loop.

Margaret who had an exploding bowel and repeated the story several times daily. A fabulous lady who wasn't fazed by continuous shouting of cock!

Linda who had celluitis on her leg which was due to burst at any moment. I was in the bed next to her and was in constant fear of it bursting all over me.

Mike who talked about nothing but pork pies for a whole week (apparently you can sell them for a fortune in Malta)

Karen who wasn't even in my bay but had the burps so loud you could hear her down the other end of the ward.

Sarah and her weird food combinations - cottage pie in bread?? Weirdo! :P She kept me going and we had a great laugh together during our time on the ward. It was a sad day when she escaped.

Lilian's husband (age 93) who wanted to take me home and looked just like the man from Up. Lilian could walk much better than I could and she was 90. Lilian's husband wanted to race me down the corridor, him with his walking stick and me on my wheelchair!

Sharon who wanted to keep me as a pet in her garden. She was a bad influence on me and Sarah and we got told off for being too rowdy! She was encouraging my shouts and trying to get me into trouble! Great fun though.

Emma my sister in law who missed me so much she got pneumonia so she could join me in hospital! Sadly (for me) she was only in for three nights but I appreciate the thought.

Finally a big shout out to the two ladies on my ward whose surnames ended in cock. It was unfortunate all round, what can I say?





Wednesday, 24 August 2016

What did you call me?

I genuinely don't know where to start with this post! Let's go back...way back...to a week last Sunday. I wasn't feeling too good when I woke up but we were due to go to my in-laws for Sunday lunch. I didn't want to miss it so Chris carried me to the car and wheeled me in to their house. When we there I got worse and worse, I couldn't even lift my arms to feed myself so Chris had to help me eat. I just slumped in the chair shouting random things at everyone. Eventually we decided I should i go to A&E so off we went. To cut a very long story short they kept me in, telling me I would see a neurologist the next day. Oh how we laugh about that now!

Monday came and went as did Tuesday. On Wednesday the doctor came to see me and said the neurologist would come and see me sometime after 6pm. As I hadn't seen James and Emily all week we arranged for them to come in at 5.30pm. I told the nurse I was popping to the cafe to see my kids and left my phone number with her in case he arrived early. Of course five minutes later I got a call on my phone to say he was on the ward. We rushed back and less than a minute later I was back but it was too late. He wouldn't wait for me. Not only that but he told the nurse he would come back later but had actually written in the book he wasn't coming back. We waited another two hours for him to come back that evening.

Thursday came and still no neurologist. On Friday I was told he was in the hospital and would call in when he could. My Dad came to be with me and Chris finished work early so I could have someone with me when he came. By 9pm we gave up hope. Yet again he wasn't coming. On Saturday we started complaining to everyone we could, it made no difference and there wasn't anything anyone would do. Chris managed to find his email address and by some miracle around an hour later he turned up! Yet again I was told he hadn't seen anyone like me (I feel so special!) but he was willing to try me on a new medication as a trial.

Four days later and I'm now home but sadly it doesn't look like this new medication is working either. I'm still twitching and falling and it's given me awful side effects. I'm going back to the doctors tomorrow and I've stopped taking it today. I can walk around a little so hopefully enough to keep me out of hospital for now.

So now the bit you've really been waiting for....did i shout at hospital? Of course I did! The highlight of my stay was when the lady in the next bed was complaining that the doctor had gone home without telling her as he was supposed to be checking on her blood work. The conversation went like this...

Sharon: Has the doctor gone home?
Nurse: Yes he has
Sharon: He was supposed to be doing my blood work so I can go home
Nurse: Well he's entitled to go home you know
Me; COCK!!!
Nurse: what did you call me?
Sharon: She called you a cock

I couldn't have timed it better if I'd tried! We all cracked up laughing while the Nurse looked very unimpressed. I promise i have no control over them but I'm not sure she believed me!

Friday, 12 August 2016

A Wonderful Holiday


I've just spent a lovely couple of weeks in France with friends. Thankfully friends who understand that I shout at them and their children. My current shout-ism is "cock" which we've managed to pretend is "cake", "cot" and "cod" amongst many others. I was also rated out of ten for clarity, volume, projection and pronunciation. I scored a few nines but missed out on a ten sadly. It was bit like the Tourettes Olympics!

I also had many falls on holiday so a few more scrapes to add to my collection. Charlie was very disappointed not to see me "turn to jelly" as he was really looking forward to it all holiday. I told him I would try and film it when we got home and send it to him. Most of the other kids saw them I think but didn't seem too bothered. As Gill put it I look like "a washing line folding down like a concertina"

I slept a lot so that meant missing out on a few trips out. I had a couple of days at friends houses which was really nice and I didn't have to worry what I was shouting. The kids did plenty of fun activities while I rested and we had nice days round the pool when I was up to it. I was able to have a glass of wine some evenings so that was all good! I've missed having a drink.

One of the perks to being a wheelchair (I haven't found many) is that you get to skip queues in airports. They literally whizz you right through. I was just worried I was going to swear at them or shout "bomb" so the quicker the better! It takes me days to recover from travelling so lots more sleeping today.

It was all worth it because we had a brilliant holiday. Lots of laughs and I think I provided much entertainment for everyone! I'll leave you with this highlight for me...

At the table in the restaurant. Waiter comes over to take our order. Me with a weird look on my face.
Gill: Are you ok?
Me: Yeah just trying not to let a cock out
*We all crack up laughing*

Monday, 1 August 2016

A Complicated Case

When a neurologist describes you as a "complicated case" that is never good news! Today I saw a different neurologist who was completely useless. He had no idea about me apart from that I was "complicated" and sent me away while he had a think about what to do next. So we wait and see. My referral to the care team has been sent so I should be getting my alarm soon fingers crossed. Other than that it's business as usual with my medication until they come up with a different plan.

At the moment I see the following health professionals on a regular basis...

Neurologist
Epilepsy Nurse
Rheumatologist
Rheumatology Nurse
Cardiology Clinic
GP
Occupational Therapist
Physio

It's a full time job just keeping up with hospital visits. There are probably more I've forgotten about.

The good news is that I had three days seizure free from Friday to Sunday. It must have been the kick to the head Laura gave me! Whatever it was it was just nice to have some respite. Back to some seizures today but can't complain really. I got three gold stars in a row on my app, I felt like I won the lottery!

We've got a busy few days coming up so I just hope I don't get really bad. I have to be really careful not to get giddy when I feel a bit better and do too much. It always comes back to bite me on the bum. I'm looking forward to some time with family and friends and hopefully not scaring small children!


Friday, 29 July 2016

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!

Wednesday, 27 July 2016

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.

Tuesday, 26 July 2016

Emily's Story

Monday, 25 July 2016

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

Sunday, 24 July 2016

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.

Saturday, 23 July 2016

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.

Friday, 22 July 2016

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.

Wednesday, 20 July 2016

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. 

Tuesday, 19 July 2016

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! 

Monday, 18 July 2016

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.

My personal favourite was shouting "cock" in the middle of the maternity unit at hospital while Chris was creasing up laughing next to me. That's where my sense of humour has to kick in or i'd never leave the house!

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