Tag Archives: fundraiser

Amazing things

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Well the last month has brought with it troubles, pain, worsening seizures yet some amazing thing too.  I will go over what other things have happened but I needed to blog about the good things first !

I managed to finally get the rings for mum and I resized and so we could both read them. I brought these rings back in September yet they were the wrong size. Due to stresses, strains and health it has taken me till January to get them resized. However the wait was worth it. Now mum and I have a reminder of the love we share as mother and daughter on our fingers. The best thing about these rings is I designed them – the little ring fits inside the bigger ring to make the heart whole. Just like us. I hope mum will have this reminder of how much she means to me forever.

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I met a lovely lady on Facebook who contacted me about writing a poem about me… She is a best selling author of amazing children’s books. Her first one is on Amazon and there are more to come.  Faye Beerling uses poetry in her books and when she makes amazing pieces for people who buy her personalised poems. Anyway I met this lady and I’m sure we will be life long friends.

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The poem can be viewed soon when I do a special blog for it.

 

Also I have been sorting out my next fundraising event “Epilepsy Awareness Spring Fair” on march 29th 11am – 3pm at St Bartholomew’s Church hall in Herne bay . For map please see Events Page.  Theres lots to organise but I’m enjoying the challenge. This event is the biggest yet but will be fun for all the family so please come along.

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My Nan Turned 90 Years old and is looking Fab for it ! she doesn’t act anywhere near that age. Still lives in her own home with my grandad (who is 91) and loves a bit of fun ! here she is on her birthday with her balloon & Badge which she loved opening pressies.

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I saw a friend who I’ve not seen in 6 years…. twice. He came down one week and then again 2 weeks after bringing with him pressies he brought back from his pilgrimage from mecca including prayer beads and water from the Zam Zam well in mecca which is said to bring with it healing properties. The stories were amazing and he always brings with him a new outlook on life and everything really so i had two really good days with him. Seizures were the same but it didn’t seem to matter as much as i was just so happy to see him.

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Also The “Epilepsy Awareness” & “Team Jo ” car stickers have been revealed which is quite exciting !  These will be able to be brought from us at the fundraiser on march 29th and hopefully from our shop which will be up and running as soon as details are sorted out.

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Epilepsy Awareness team jo Epilepsy awareness sticker (1)

 

And ….. this website ! which would not have happened if it wasn’t for Rolf Habing. A very good friend of mine and Team Jo member who I’m proud to have. Rolf you have been amazing over the last month not only with the website but learning about everything and my life enough to stay with me and just chill or play music when I can and know what to do if a seizure occurs. The clogs, cheese and peanut butter sauce & Sprinklets was good too ! I have very few friends with the guts to be with me alone & isn’t scared of me. So thank you for everything. The website Especially.

ROLF & PEBBLES

Fundraiser!

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Well I know I’ve been really lacking posts recently. It’s no secret that I had been planning big fundraiser at my house, but how big it turned out was a surprise even to the optimistic me!

I struggled but the planning and organising was worth it… There were lots of other background issues happening at the same time and at times I felt like I was being suffocated by my own ideas and no matter what my friends said at times I thought it was all going to be a big disaster. 
The morning of the fundraiser 19th October the heavens opened! I finished setting up and then looked out the window nearly turning to tears… Who was going to turn out in all of this? I continued to be busy and sort things out and friends who were helping and doing all sorts of things arrived and I was distracted from feelings of dismay. 
1pm arrived and people started to come through the doors… Wet neighbours poured in. Neighbours round here are supportive and know me so I expected this. I thought that was it as they all came at once yet people who I didn’t know started to come through the door one by one two by two! Then 8, 10, 12 and I stopped counting people were walking sideways through the house to get through the stalls and displays. It was a sigh of relief but utter panic as I tried to see to them all. 
The end of the day everyone was exhausted. We took only a couple of pictures that day because we were so busy.
The total raised was £450 ! 

Mum and I next to the epilepsy table 

organising under stress

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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

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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.