Tag Archives: beast

organising under stress

Life can be stressful. But this week proved to be more stress that even I could have bargained for. 
Ive been manically organising and preparing for the fundraiser I am doing for Epilepsy Action. 
Its called Jo’s Epilepsy Awareness tea party. I am doing it as part of epilepsy actions tea break however I thought the idea of a coffee morning was too boring and while I was laying in my hospital bed in July thinking what I could do I came up with what ive ended up with!  

I am having craft stalls bric a brac and sales tables, tombola, glitter tattoos, name the bear, quiz, sweepstake, tea coffee refreshments and cake and live music. its all a lot to organise and plan. Despite it all being written on a piece of paper looking all neat and tidy with coloured pencils I have a conservatory full of untidy boxes, tables, epilepsy table, raffle prizes, tickets and all sorts of things i didn’t plan for!. 
Ive been working so so hard i’m exhausted which makes emotions run ragged and then the events that have happened this week were just enough to make the tears run. Anyway let me tell you about the fundraiser. 
My friends and family and neighbours have been amazing. They have been turning out their draws and cupboards to find things for me to sell and raffle and use that is why I  have boxes everywhere ! when we started mum said to me… we don’t have enough to sell ( id started collecting things and i knew we would have enough) however by the end of sorting through bags of stuff from my lovely neighbours we had plenty… in fact we had 2 tables, one book case and a clothes rail full of things to sell ! 

My other neighbour was doing the tombola and her mum the teas and coffees. My friend Sue from band was lovely enough to offer her glitter tattoo services and make all the willing crowds be glittered for the occasion ! i ended up having three myself ! 
Unfortunately my other friend couldnt make it as she was unwell.. that was one reason my emotions were high. Shes my best friend and i miss her loads. Get Well soon T XXX 

It was all worth it in the end though all the hard work, preparations and organising. We had crowds of people turn up despite the yucky weather and it was a happy day had by all. I was literally run ragged by the end of it feeling quite unwell but I enjoyed every minute.

I thank everyone who came and everyone who helped out. 


The whole reason i started fundraising and raising awareness was I went to America in May – June 2009 and out there my life was totally different. Everyone knew what epilepsy was and how to deal with it. they all knew i wasn’t drunk or a lunatic and they helped instead of running away. 
This is what awareness can do. 

I want to keep raising awareness of epilepsy until everyone in England knows what it is. I want people not to be afraid of me if i fall. I will not stop raising awareness. I want to make a difference in the world of epilepsy awareness. I also want to help find a cure and to do that research they need money. This is why I’m fundraising Im fundraising for a cure. 

At the fundraiser there was also a epilepsy awareness stall. it had information, photos and info on from when i was in hospital. it had teddy bears with EEG wires and all sorts of info and leaflets for people to read, take and learn. 

I really hope that on Saturday I made a difference to a few people, the way they think of epilepsy and maybe taught people something. I hope i raised a little more awareness. I know I raised some more money for the cure…. so far we are nearly at £300  ! and im still counting. 

So was there anything I was disappointed about? just one.  The people who I support in whatever they do did not come. not even a sorry couldn’t make it on my FB page. Also my mums side of the family didn’t support, not one of them. it just shows that there is so much more work to do ! 

for now id like to just leave you with 2 words. 

Thank You !

hospital again & Miracle Dr

The pain got too bad 

monday morning and I woke up after the night that i thought would never end. The pain was so bad i hadn’t got much sleep all night. mum wrote in her diary “you can see her holding her head and making groaning noises even when asleep”. 
I woke pleading for help I couldn’t go on like this I can cope with alot of pain but this was beyond that. 
I feel so so sorry for mum – she feels helpless like she cant do anything. She doesn’t realise her cuddles and just being there is all I need from her. Just like all my friends. I feel so bad that I cant do stuff with them and that we had so much planned this summer that couldn’t be done but they come over and spend time and they don’t ever say a bad word. I love them so much – they all give me strength.
sometimes though nothing can beat the security of medical staff and sometimes the pain get so so bad and this is where i was now… the pain was where I could no longer cope. 
Mum called the ambulance and I ended up in margate hospital. We waited in A&E an hour before being spoken to by a dr we went through the whole story again. An attack came on and luckily the oxygen helped take the pain down a bit this time. They said they were going to admit me and get me to see the pain team in the next day. After a almost sign of relief that we were going to get some help  1/2 hour later they came and told me i was being discharged…. basically there was no bed space. They said I have an appointment in Dover for the pain team on wednesday. 

I was so so concerned and that was it i was at breaking point. I couldn’t take it much longer. How could i possibly get to dover being in the pain I was in? 
We were sitting outside the hospital now – we had to wait for a friend to come and pick us up as they were not even concerned with how we were going to get home with me in t he stat i was.. I thought the NHS was a caring service…. How wrong i was. 
We eventually got home and the next couple of days nothing really changed. 
Then the day of the Dover appointment came. It was about 1 and 1/2 hours drive from us and I was not even strong enough to be out of bed. We packed the car with pillows blankets and morphine syringes and my other pills and the oxygen and off we went. I needed two syringes on the way there but survived without a seizure. 

Well what can I say I am glad we went. The dr (tim) was lovely. we spoke to him for an hour and he is the first dr to truly believe the amount of pain im going through and understand it. He was not phased by the answers I was giving him to his questions and diagnosed or sure Cluster headache. (google it, and it will say – “the most painful condition known to man” by medical definition.) I was so relieved that someone understood and took notice of what I was saying and experiencing. The verapamil was put up over the next 2 weeks and told to go up a subsequent three times with two week breaks. He also said I could go back onto my old painkillers as well as the stuff I was on now. He also said that in the future he would like to end me to a guy in London called Chong who is a renowned specialist and the top in the country on cluster headaches. He understood that it not practical I go to London now.

We celebrated with a quick stop at macdonads where I had a iced frappe coffee (i love cold coffee – its definitely my fuel) When we got home I was exhausted and the cycle of headaches and seizures continued. 

My epilepsy consultant phoned us that same evening as we couldn’t go to the appointment as it was the same time as this pain specialist… he wants me to see a specialist in London too – a different one who knows about epilepsy in the regions I have mine. he is trying for an appointment ASAP – (joke as recently we have had a letter stating we are on the waiting list for the waiting list – we should receive an appointment in “several months”). 

My epilepsy consultant was really happy of the cluster headache diagnosis though – it was him that first said about it however was getting no back up from my previous consultant. This dr tim who i saw over-rides them so he is really happy that is getting sorted. despite being a slow process. 

Just knowing what we are fighting helps. 

I will not give up

When I was diagnosed with epilepsy all those years ago we were told the things that I could and couldn’t do, the things that needed to be watched and what I should and shouldn’t stay away from. Some of these made seance, others didn’t. Some because of my age then (4) didn’t apply anyway. When I was re-diagnosed as a teen some of these started to play a part whereas they hasn’t before one including not having a bath or shower without someone being about. Outside the door. This is one of the most frustrating things I think because having a relaxing bath isn’t as relaxing when your constantly aware that someone is sitting outside the door waiting for me to get out so they can continue doing whatever it was they were doing. I have only had one seizure jn the bath and i was startkng to get complacent again recently until However I realised once again how important this was. Tuesday night when I was relaxing after a long day I woke suddenly in the bath to find the water drained and my head hurting and me in the bath surrounded by soaking  towels. The feeling of pain from having a seizure in such a hard and restricted place my nose and throat sore from swallowing water and my contact lenses still in but really sore and hard in my eyes. I was lucky though… So many others have been where I am and not made it, the beast taking them to heaven. Just three months ago another angel was taken this same way. The risk of drowning in epilepsy is higher than you think. 

The next day I had another seizure and another and another. My head was hurting so bad and my painkillers weren’t working. I had oxygen on and there was not much else we could do for now. The dr wouldn’t come until it was worse. Well it got worse I can’t remember much of the next few hours. Mum had called the dr in panic and tears that if they didn’t come out and administer the emergency drugs now then we would end up in hospital which is useless for me now as my veins are so bad iv access is impossible with light going to theatre and the hospital staff get grumpy even though I cannot ho my veins being difficult to access! 

The dr came about a hour and a half later. I was given a series of injections one in my bum and two in my arm. All having a different purpose and all combined making me really sleepy and woozy. This is not an uncommon syndrome for me. So many times I end up in this situation of pain from the cluster headaches and the epilepsy seizures all at once fighting inside my body and trying to take over, they succeed and I end up poorly and bedridden for a few days recovering from the aches which my tensing muscles cause, the bruises and scrapes where I’ve hit something or knocked something down, and the wooziness nausea and anxiety this beast and the drugs cause. 

I eventually do recover. Able to move freely not in pain… Then another seizure strikes. Is it to remind me that my body isn’t actually mine anymore?  That it belongs to the beast of epilepsy? No because I will not give up! I will not let the beast take my body just yet…. I’ve too much I want to do. 

It’s taken part of my vision some of my teeth have been broken, It’s given me sprained ankles, dislocated shoulders, serious cuts and scars and that’s just physical. The beast still hasn’t broken me  yet. I will not give in. 

I’m really Tired and still feel unwell but I’m still positive too. 

I have epilepsy…. It does NOT have me