Tag Archives: Epilepsy Action

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. 


THANK YOU SO MUCH FOR HELPING ME RAISE MONEY AND AWARENESS FOR EPILEPSY 

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 !

Heartbeat

This is just a quick entry to explain what happened today and why I’ve not really spoken to anyone and said yeah drs fine, 1) because i’m too exhausted and 2) because I don’t know whats what yet. 


Well today after a night of head pain and added noise of a cold and windy night and out back gate banging in the wind and hence very little sleep I toke to a day at the dr.’s…. little did I know this at the time. The 1hour job ended up taking 4 hours! A lot of waiting was involved and Im now typing this after having a sleep and I still feel exhausted!
I left the house at 8:45 and managed to get my appointment with the dr, We just went over what had happened over the past couple of weeks and made some minor medication adjustments and then was sent for a ECG. Last time I had a ECG my heart rate was slow and as I am now on the new drug which can cause problems with the heart they are keeping and eye on it. I was really pleased when I asked the nurse from behind the curtain if my heart rate had gone up and she said yes… I thought this was going to be far better than my last appointment. How wrong could I be. 
I got dressed and the nurse said she would show the dr. Well it turns out there was something wrong with the ECG this time… I was ready for it though as Id been given a copy of the ECG which read “abnormal ECG”. I was tired, cold, my head and feet hurt and I was fed up with waiting ! 
An hour nearly passed in which time all things wonder through your head. Finally the nurse came back and blurted some stuff which I have no idea what it meant “A Junctional rhythm with non-specific ST and T wave abnormality – Abnormal ECG”which was pointed out to me on this paper followed by a the doctor wants you to book another ECG friday afternoon with an appointment to see her afterwards. Well i though i’d never get an appointment for that soon and for both at the same time… well actually I did which is unheard of at our surgery… normally I’ve been booking my ECG’s a week and a half beforehand. So mum was standing looking kinda freaked out… to be honest Im not overtly worried, Yes I’ve had some chest pain but this isn’t anything new from my last ECG and nothing bad has happened yet so why worry what a few lines on a bit of paper say!. Friday is just 2 days away so we will find out more then. For now i’m not thinking about it. 
Needless to say being at the dr’s for that long was exhausting, I’ve had a little sleep and now plan a long hot soak in the bath. 

Other than the escapades of today things have been slowing down a bit. The headaches are easing although still getting on average 3 attacks a day. Im now able to concentrate a bit more on the fundraiser and am making awareness ribbons and other things ready for 19th October. Its all quite exciting as i’ve never done anything this big and organised the lot before. Its going to be really good though and Im really hoping people turn up so we can raise lots! 

Well Friday I had my repeat ECG. It was a bit of a nightmare and I’m putting it down to being Friday 13th even though I’m not really supersticious. The surgery computers had crashed and that included 
the ECG machine. They finally got half of it up and running so I was able to have the test done. The dr came in while I was having it done as she wanted to see it. It turns out that the on previously had shown I had first degree heart block. The dr was hoping that the heart would recover and only do this occasionally and recover in between which it looks like it does. At least I know know why I get my chest pain every now and then however good news is that so far I can still stay on the pills but need close monitoring. 


"Epilepsy never makes me shy away from life"

A few days ago I got contacted by a lovely lady called Liz. She is a reporter and done the previous articles on me  and my awareness videos and doing my abseil (if you’ve not read them they can be found by clicking here Abseil article and here Awareness video articles).

In our paper there is a section about people in the town. I always thought people in this section were prominent people of the town though now i have been asked i’m not so sure what their criteria is.
Anyway I was asked and I agreed. I got sent some questions and replied and this is the result.

Click here to read the article online

Planning a Fundraiser

While I lay awake with pain from the tip of my toes to my head after a severe seizure, what do you think I think about? how unfair life is? how I wish things were different? oh boy how depressed am I?

No … I think about what Im going to do next. I think about what I can do to make a difference. How can I raise more money for epilepsy action next. I think about events, ideas, purple things (the colour for epilepsy is purple). 
Well a couple of weeks ago I was doing just this. I had suffered 3 seizures that day and was laying in bed with a cat by my feet and I had a idea pop into my head. Id read the latest epilepsy action magazine which had a advert for the “epilepsy tea break” I decided I would do a fundraiser around this idea but expand it. I wasn’t content enough with just a plain ld coffee morning.. i needed something more, something that would need organisation and planning. A fundraiser was the perfect idea. 
I broached the subject to mum… knowing she hates events, crowds and anything that needs such organisation people I wasn’t expecting the positive reaction I got however that was it then… Note pad and pen out and I’d started planning. 

The plans  are still in the process of being organised but the event called:

“Jo’s Epilepsy Awareness Tea Party” 

will be taking place on Saturday 19th October 

between: 1pm – 5pm GMT

At: my house…. 4 Mill View Road, Herne, Herne Bay. CT6 7JE

Please come along 

There will be craft stalls including “dream a little dream”: by Lara Simpson
who makes stunning dream catchers 

Epilepsy awareness stall

Crafts by Claire 

Glitter Lining crafts 

Tombola

Refreshments and Cake 

Competitions 

A quiz

Glitter Tattoo’s 

Nail art 

and more. 


More details will be given in due course 

Epilepsy Today Issue 19, September 2013.

Today I became a published epilepsy advocate. After an interview I gave to epilepsy action they wrote an article and it is published in this months issue 



Epilepsy Today Magazine, Issue 19, September 2013, Page 20 & 21.


Holding my magazine ! 
I am so proud of myself for getting this far in the world of epilepsy awareness in 6 short months of actually speaking out about it. There is a lot further I want to go but for now I leave you with some happy images of me and my magazine article. 


FRONT COVER 



Page 20
                                        
Page 21 
                                       


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.