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Planning a Fundraiser

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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 

Nothingness and everything.

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This is a hard blog but it had to be done. If you feel like this know you are not alone… I am there too. 
Xxx



“I don’t want to see anyone. I lie in the bedroom with the curtains drawn and nothingness washing over me like a sluggish wave. Whatever is happening to me is my own fault. have done something wrong, something so huge,  I can’t even see it, something that’s drowning me. I am inadequate and stupid, without worth. I might as well be dead.” 

― Margaret Atwood, Cat’s Eye




This pretty much sums it up at the moment. In the last week I have been through so many emotions. Happiness at living life and enjoying things on Monday to totally down and in trouble for the rest of the week. Yesterday I felt I was on the up again and today Im even further down than I’ve been all week. This time i feel I’m not mentally strong enough I’m loosing control of myself, my body, my worth I’m sitting here feeling like my heart and soul for life is not strong enough to battle this beast. I’ve felt this way before… Many years ago. I promised myself I wouldn’t go there again but it may be a promise I can’t keep. Even my promises to myself are empty. 

It’s harder because I thought I was crawling out of this ditch yesterday…. It was a “good as can be day”. I was happy… I went out in the car and it was lovely. Exhausting but lovely.
Today I am in the depts of depression because the beast is starting to leave its marks on me. Never did I think my seizures would impact on me like this… Ive been tough, strong, a tigger that always bounces back…. not at the moment. The beast is making marks.Maybe not so people can see when I put my mask of happiness on but to me the marks are like hard heavy dirty footprints in soft mud. 

* Medication has weakened my teeth and bones.
* Seizures have damaged muscles and ligaments.
* Headaches from seizures and the amount of seizures mean I’m taking more and more medication. 
* Seizures cause bruising, scrapes, cuts and scars. 
* Bad seizures that make my jaw tense and clench hard have broken teeth. 


Im loosing more and more confidence of my own body every day…. Wondering when and where it will let me down next. Always looking for somewhere to run and hide if I need to. The world being split in two… one that is the lovely world where I am normal and my mask protects me from everything and then the real world… where my mask is just a face I put on and sometimes this will fail like today.

I see mum struggle with things. She has her own problems with things but she struggles with me and the beast too. It’s impacting on her which I hate to see. It’s not fair on her. Would it be better if I want here? It’s got it’s grip into me, the beast of epilepsy will not let go at the moment. I want  to live life not be stuck in limbo where I feel at the mo. Mum struggles with grumpy being just that.. grumpy. Just last night there were problems – not to be discussed here but just that he acts as he does and makes life difficult for others. 

I am made to feel that this is something I have done wrong, something that I am making happen. Its not –  I know but sometimes it feels like I’m brainwashed by the end of the day to believe that the beast is here for a reason, I have done something bad and I am being punished with having epilepsy. I get minutes where I think Its not my fault but then he will say something and Its my fault again, and I believe it.
 I am “ruining the family” (his words not mine). I have “split the family – made his life bad and he doesnt have a life” ? 

Well I know in reality that this is not true.. He definitely has a better life than I do… at least grumpy has had 67 years of good health, friends, travel, two marriages – three children. Not that he has made right decisions or valued any of the above but he has had the chance to do this. 

I am 26  – had two serious partners one ended quite abusive and was apparently my fault again because of epilepsy and the other just couldn’t cope with me not being able to do things all the time because Id had a seizure that morning and couldn’t walk round the city that afternoon. I probably will never have children due to the pure amount of medication Ive been on since age 4. One Dr even sat me down and severely told me not to get pregnant. 
As for travel and just life well I had plans, they got eaten by epilepsy. Career? I had one…. That got eaten too. Friends? well I have some awesome friends but many have left because Im probably not the friend that they want – I cant go nightclubbing, drinking till pissed and all that stuff…. In fact Ive not been in a nightclub. 

So as for not having a life… maybe he should think again because from where I am right now I would love that life. Not only has he had one but he is now waited on hand and foot by a wife who despite all the shit she gets from him with nothing in return – not even just a civil conversation or thank you. 

Im not going crazy but I do feel depressed. Depression hurts, Its a pain deep inside the body, heart and stomach. It affects everything – I will stay strong. 


So here I am writing this depressing blog which no-one probably reads but at least if you are someone searching the web feeling like I do or have in the past… you may stumble upon me and this blog and realise you are NOT alone. This may be a depressing blog but life is not all smiles and sunshine. There are clouds too. Im in the dark black clouds trying to fight my way out. Hopefully I will. I am getting dragged to a place I don’t want to go again. 

Remember I love you all and appreciate everything.




Looking fine on the outside

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Sometimes I wish you could see epilepsy on the outside. The trouble I have when I get asked things like, What job do you do or where do you work….. well at the moment my answer has to be I don’t….. Everyone because of that thinks im one of these lazy bums who live off the state and don’t deserve to breathe or be part of the same airspace. They look at me as if im dirty, a scumbag who should be out earning a wage. 

Well Its not for lack of trying.  For 3 years I fought to get back to work. I went through assessment after assessment after assessment. I went to interviews with the hospital for work (i was a nurse) I went to assessments at the benefits place as I was told to go there by my dr…. whereas other people were there to try and get signed off for work and get benefit, I wanted them to tell me I could go back to work that I had made my life for the past 6 years including training ! It didn’t work. I did however get a little benefit… not much to live on especially compared to what I was receiving working but It was a conciliation and helped me with transport costs and things like the things I could do. To get to this point though there were forms and forms and forms. How anyone gets away with the benefit fraud that you see on TV astounds me.

Now things have changed (for the worse) with my health since the beginning I dont apply for jobs anymore… not until I can get a Drs letter saying I can work. I have tried to volunteer at charity shops (thrift stores for you USA readers) and places such like yet they wont allow it as they are worried Id sue them if i fell and hit my head on something in their shop. The world has gone mad. As Im at the point where I have been told I shouldnt be on my own at all I guess work in most places is out of the question but doesn’t stop me wanting it. My dream job would be somewhere I would be helping others. Probably something craft wise now Im really into craft. I wish I could work somewhere like the craft box… Crafting all day and all that it comes with doesnt bother me. To see peoples happy face when they create something is amazing and lovely. 

Just today I had my cousin round and I set her up and taught her how to bling her own phone case…. the outcome is amazing which I will post when its dry ! 



So anyway looking  “normal” on the outside can be difficult 

Just the other day someone said to me “your looks don’t give you any sympathy” meaning well you look fine! I just stood there…. In my head I was saying “if you could see my insides, the pain I have and the struggles I’m going through I would be the ugliest thing you have ever seen, if seizures had a physical form what would they look like? if the pain and joints could speak what would they say?” I will never know those answers.

.. Lots of people out there think of epilepsy as having a seizure and getting back up and that’s it. Well it is and it isn’t… My seizure count last week was 12 and that’s just the big ones…. It’s difficult to count the small ones as sometimes I don’t know about them but the ones I know about ….. The count is about 80. I’ve gone through 1 portable cylinder and one large cylinder of oxygen and about 185 tablets.

I’m sitting here and my back hurts alot, I can feel twinges of pain on my ankles and my wrists. In fact if I move my wrist.. It cracks. My neck is sore and I’m tired. This is because the seizures really do take a toll on my joints, my muscles and me.
When i have a seizure i do try to just get up and start again sometimes i can sometimes i cant…. its not as easy as it may sound or look. tiredness is like a black heavy blanket that covers me and sometimes I can and sometimes I cant fight it. Now Seizures and epilepsy… There is no fighting with the Beast of epilepsy. – once a seizure decides its going to happen , that spark from one neuron missing the other one and landing somewhere it shouldn’t well that I can’t fight, I cant stop it, that is it. Sometimes I know its on its way and it gives me signs and sometimes it creeps up from behind and I have no idea until I wake up on the floor or in some hospital somewhere, friends sometimes strangers peering over me.
Just think of living life knowing that any second your body could be taken over and the next thing you know you could be in a hospital bed somewhere. Im NOT over exaggerating. on 19th July 2009 I came home from work and went to lay on the bed…. the next thing i knew it was a week later and I was in intensive care. That is the not knowing- the uncertaintuy of epilepsy.
I take a photo every day to remind me of that day….. why? because I don’t want to forget. – Epilepsy takes memory sometimes too. I lost a couple of weeks here and there and I don’t want that to happen again. My photos are my “insurance policy” so next time you tell me I take to many photos….. just think that I can’t rely on my brain to remember the good times like you can.

I’ve been fighting this fight for 22 coming up to 23 years in July. Not because I want to, or because I can, but because I don’t have a choice. Im not unhappy with my life though in fact I feel stronger for still being here today. 

Yes ! and apologies.

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Tuesday and we had a knock at the door. it was the builders to come and have a look at the white shed to see if the studio could be built.
They had a look and we told them what was needed and WHOOP! yes it can be done.!
and the best bit….. the builders are larry and jamiee.

for a few weeks the blog is slow… 
this is because 

1) grumpy has ben more than just grumpy…. we’ve had lots of issues which will be gone through in another post when im in a mood to bother talking about him.
2) seizures have not been great but we cope. and i got a new toy which will also be gone through in another post.
3) my building of the studio has started…. pictures will go up in a min,
4) ive gone back to band practice which i totally am loving but is another thing draining my little energy, but itss so worth it.

anyway these are my excuses and apoligies for being away for so long.
Normal service and blogs going through each of the above will be going up soon.

xxxx ttfn x x x x

Finding my feet unexpectedly

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Over the next few days I got stronger and have found my feet again. Ive still had not gone out and I honestly didnt want to at that moment… I feared of having seizures while out again much more so than while at home… home comforts make such a difference and it’s now i realise that more than ever.

My eye was still black and my veins were still hard… the bruises still there though fading and I felt a little better despite the constant pounding headache and feeling like a weak, wobbly ticking time bomb!
life goes on and mum suggested or asked me if i want to do something. Like what I asked? how do you mean do something? Mum realised i couldn’t go back to nursing for a while and maybe not even want to or will ever be able to at this rate. After all of this was the NHS somewhere I really wanted to work? not sure.

Anyway mum was laying on the bed with me and started talking… I was shocked… I had just  been offered all the help i need to set up my own craf business. jewellery making, glass painting (she knew I always wanted to have a go at), painting, blinging, craft. I didnt know what to say or do I was still pretty shocked… mums not the crafty type (I wasn’t until I moved to where I am and Kara kinda introduced me to this world of glitter, glue and wire and beads!) 

 Anyway the end of this conversation it was decided that I’m going to be helped to set it all up and even have my own space built in the back garden ! i am so so excited… there is a lot to do and sort first but i have already started looking up different projects to start on.

I have a project… I’m finding my feet. I have a reason to get up every morning.

Life is beautiful its the silver lining in the dark clouds.


Lightning strikes twice

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JUNE 26th 2012


Today was another really terrible day in my book.
Despite waking up feeling positive and happy (well why wouldn’t i?)
dad was going to work… I was seeing nan and grandad Then  Kara and I were going to the craft box I was finishing my teapot and Kara had a pot to complete for a wedding pressie. A good day was planned.
I relaxed and was loving my painting. Kara and I were having a laugh and Tory was chatting away too. She had a work experience boy starting that day and it he was fab too. All was good.


I’d nearly finished the rim of the teapot. it was a detailed bit. I started to feel a bit yucky and put it down to the concentration. I took my pills and continued to paint. I had to stop for a bit though as it was getting a bit much…. i felt my body tense… i felt a rising feeling and a wave of fear came over me. I knew what was happening. I tried to talk to let someone know but nothing was happening. I heard Tory ask if i was ok… i don’t know if i answered or not. i can remember hearing ‘floor’ but i couldn’t move…. the moment passed and i woke up on the floor, Tory right there and purple blanket about. Increasing pain in my head and aching from head to toe… I felt like i needed to get up but i can’t remember if i did or not.
Mum must have been called and when she arrived she didn’t look happy… I guess thats my fault. Mum took me home and I went to bed. 4 hours later I woke up realising the aftermath that must have happened. id text’s and calls missed on my mobile from Kara. I text her back and told her i was fine. She was worried about the pamper eve and if id be there… i couldn’t answer that right then but i said id try.
I had had a bit of a infection previously this month id felt a lot better since finishing the antibiotics but still not great, i pushed it aside  putting it down to my normal aches and pains from the seizures but now i made an appointment with the Dr.

The next day i went and had my appointment. temperature, blood pressure the lot. My temperature was 39 so quite high and my blood pressure low but i normally have a little bit of a lower blood pressure. a couple of tests showed infection. my blood results would come back on friday.  We later found out that they could not get enough blood to test… since the repetitive hospital admissions and IV drugs my veins were hard and unable to cope with much more.  From the other tests It looks like another kidney infection so back on the antibiotics i went. 🙁
Tory had sent me an article on caffeine and seizures. I asked the dr but he didn’t remark much.
I did start the no caffeine that morning though.

Loss of Confidence

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If theres something I’ve learnt and thats life is precious. Epilepsy does scare me sometimes and so do the cluster headaches. I try not to show it, i don’t like to and I hope that people wouldn’t know unless they know me wouldn’t know what my life is about just by looking at me… why would they unless they spend enough time with me.   This time really did scare me. I had taken a picture half an hour previous to my fits and the next day when i was out of hospital i looked at it and there is no sign of what was to come. Like a time bomb waiting to go off? 

Painting before my seizure at the craft box


The next few days I rested and watched so many films that I would be great on a tv quiz show!
Monday I was due to go to art class. I really wanted to go as not only was I bored but I wanted to start on my big canvas. The problem was the art class was at the craft box where i had last been and ended up in hospital. I was embarrassed and scared to go back. Being the stubborn person I am (even to myself) i thought it was something i had to do… I thought if i didn’t i would never go back. I Picked up some flowers on route as I felt that Tory really deserved them she helped me that day more than I think she realises.

Mum dropped me off outside and I went in I was shaking, not only because I felt awful but I was so embarrassed. I met the other lady who was there that day but I had no idea how much she saw, if she knew or what as I was too out of it that day to know. She said Tory wasn’t there… My heart sank. I immediately started to feel scared as I knew Tory better and I was so unsure in my own body at the moment. I felt so alone.

I was given a task to do from the art teacher and just sat down and done it… i was shaking inside and my head was pounding. The infection had started to take its toll and my kidney was a constant pain in my side. I finished the task and was actually quite pleased with it. Now for the big canvas.

I started on the work but was so tired i was nearly in tears. I was scared and I felt I had to leave and quick. I made my excuses and left.
I walked up the road, stood alone, still and was in tears what had I done I should have phoned mum before I left. Now I was alone in the street and no help or security. I called mum straight away and she came down to get me.. I when home and cried. What a baby I though… yet now I felt It would be more difficult to go back.

Life was bad again and I was so so upset and tired.
The next day I got up and brushed myself off and told me not to be stupid I went to the craft box. I had to finnish dads plaque I was shaking when mum took me down. I wish mum would go but mum said no and made me do it alone. So i did. I went in and Tory was there. Relief yet embarrassment and I still couldn’t stop shaking.
I done half of dads plaque but was too tired to do the rest. Kara needed to come down that afternoon so i went home, had lunch and slept. 3:30 claire and i went back and  finished the plaques.

 


WHOOP finally happy!

Pills, craft and disney

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I came home from London with relief and sorrow.
I had the ok for oxygen, but i also had more pills to take. I was now on a total of 19 a day. If they help i don’t care i said.
A few weeks on and a little improvement was seen on the seizures. I had to up the dose of the medication and they meant 22 pills a day but who cares little improvement is better than none.
I was still getting a few absence seizures but i didn’t even bother to say about those any more.
When i was on my menstral cycle the generalised would be worse. The oxygen however meant that my headaches were able to be controlled a little. Sometimes the oxygen got rid of the headache totally. Was i about to get back to work and have a life?
Although i knew deep down a normal life was still far ahead i was getting braver. I went out down the street and posted letters by myself. I went in shops on my own knowing mum was just in the nearby area. I  done craft fairs in public, went shopping and as long as someone was about life was good.
The medication wasn’t perfect as i did have breakthroughs but i went from 5-10 seizures a week to 2-3 big seizures a week. Thats a big improvement.
The oxygen also meant that recovery was quicker. Mum use to grab the mask and give me oxygen when i had a seizure and we found this helped this too. We both started to relax.


February 11th 2012.
After a lovely but difficult christmas came the new year. My friend Matt had become my boyfriend on New years eve and I couldn’t have been happier. I was going out and really living life. He knew me from school (total of 16 years) and he had grown up with my seizures so all was good.
Over the christmas period i had a few blips and had to spend a couple of days in bed as i was too bad after the seizures but i bounced back. Febuary was different though.
Matt and I were dating and our first valentines day was planned to be great. However 11th february 2012 i was taken into hospital. The seizures wouldn’t stop and  again hospital was the only option. I went through the same process as always, anticonvulsants in a drip over night and a couple of days in hospital. i got out of hospital on the morning of 14th february (valentines day) this wasn’t going to be the day we planned as i was too weak but Matt came over nevertheless and we had a lovely evening watching a film. I was happy.
I was a bit disheartened by this blip as i thought we’d cracked it as the seizures had reduced  little and i thought i’d just up the medication and that would be it, but I didn’t give up.


As soon as i was well enough matt and I were off doing things and Kara and i started crafting again. I Started to craft more seriously and sell a few bits too.
Id stopped going to WI as it was getting the same and mum wasn’t fussed so we chose to spend the joining fee on some show tickets throughout the year instead.
Kara and i were still best buds and soul sisters and she introduced me to a amazing craft place. the craft box . You paint pottery then the lady puts it in the kiln and it comes out shiny and looking amazing. We went there often and i started to go there  solo too as Kara could not always do it as she had so many other commitments to clubs and social groups such as drama and craft.

We didn’t always craft. we went to the cinema and shopping and other places too. We even went to the o2 arena and watched disney on ice. It was great Kara was becoming as mad on disney as i was. I felt sorry for her mum as she had the job of taking us but she seemed to love it too. it was a really good day.