Tag Archives: jo mumford

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 

Pain.

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Well the last few weeks have been a struggle. Ive gone through many emotions a few different drs and hospitals. The news on all fronts have not been great and ive not been feeling great on top of that. Basically life seems a viscious circle in many ways. The seizures cause joint pain, headaches and stress of family, friends and in turn make things difficult. I want to do things but I get limited by people thinking they know what is best for me when in fact they are making life worse… more stressful because I still want to try being “normal” whataever that is. Its not like i want to be like everyone else… thats never been my style However I want to live life, Enjoy what I can. Yes sometimes I push things to the limit but life is for adventure and for living. Not sitting on the sidelines wondering what is out there. Ive also been having worse cluster headaches. I haven’t spoken about cluster headaches much in this blog I know but yes I have cluster headaches too. Diagnosed when i was sitting with my epilepsy consultant one time and my Dr asked me some (what I thought) odd questions on my next appointment after reading my hospital notes. I answered them and bang – another diagnosis, lot of pills and other things to learn/ understand. Well i’ve been reasonably coping until recently. My episodic clusters have turned into chronic meaning they are several times a day. This does not help the seizures either.
We have also found that my seizures occur when i’m in pain and my oxygen levels drop – hence alot of the time im hooked up to oxygen trying to quench a headache and stop seizures. Sometimes it works – sometimes it doesn’t. Either way its another thing in the way of life. Ive not had a seizure free day (grandmal becasue I dont really count the absence ones) in 5 weeks. Before this I maybe got one ever 2 weeks. Im getting tired now, my joints are suffering badly and Ive damaged my neck. Im now at the stage where Ive got some things in order and now its time to fight or run and damn the consequences. Im not going to run im going to fight for as long as I can and for as hard as I can.

Fight for fun
Fight for life
Fight for a seizure free day 
Fight for a pain free Day
Fight for epilepsy awareness.

 Im waiting for an appointment go go back to london for more treatment of some sort – we dont know what yet. I know surgery is not an option unless they find something new as my seizure focus (where the epilepsy is and starts) is no longer in just one side of the brain but both. its not just in the one lobe anymore but in 3. time will tell but for now I dont know what the answer is. 


A poem edited for epilepsy: 
“What Epilepsy Cannot Do”
Epilepsy is so limited…
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot reduce eternal life.
It cannot quench the Spirit.


Even if just for a moment it does any of the things above… epilepsy and everything else will not win I have epilepsy – it does NOT have me.It is not Who I am – it is only part of me. I am not defined by it – i dont want to be.If I die tomorrow I want to be remembered as the bubbly crazy wacky purple, glittery disney loving girl  who was fighting for epilepsy awareness. Fighting for funding for people to help find the cure we all need. I want to leave my mark on the world. Help and inspire people – that is my wish.

Night night. xxx

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!

Embarrassment is never far away!

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After the blip i had started living again.
I went to the craft box more and I went out with matt more, I was more confident and was going out with some other friends too.  I started planning things further away and life was good. I was still having the seizures but they were less severe and I was at about 2 a week and I knew to avoid my period time. I started brushing up on my nursing skills by redoing my online training and had passed them all. I was getting ready to go back and I was treating every day as a bit of a holiday. I still went through bad weeks where my cluster headaches would be bad and i would need the oxygen but i thought that iId still be able to go back to work even with that. 
To bring myself into the real world again I started taking my little cousin milly out for day trips. Things were good i was living, making plans yet this time still being reserved.

June 16th 2012

Things were good !  the last 2 mondays I’ve been going to a art class at the craft box as well and I’m still taking Milly out on the occasional weekend.
The last week i have been painting a plaque for dads fathers day pressie. Ive designed it with both his loves in mind. On one side I’ve got his regiment details and badge and on the other his own personal bus stop. On and off I’ve been going in and doing a little.
Last Thursday I was in the activity box with Kara (she was doing a similar thing for her dad but a gardening design).
Over the few days leading up to last thursday I had been feeling a little under the weather I had noticed my headaches were stronger and I had been having a lot of absence seizures. I hadn’t told mum how bad i was feeling as she had been unwell the last few months and I was done with worrying her about me. She done that way too much. Things were on the up so I thought I could cope.

Thursday was going to be our finishing off day. We went in at 10am and painted away and chatting about the usual rubbish we chit chat about. My head was getting worse so i took a couple of my stronger pills and then kara and I took a break to go and get a cake from the nearby cake shop. We came back and had a cuppa to go with it and continued to paint. Half an hour in and i felt strange, My head was bad and i was getting hot I went outside to get some air and as i went down the steps i knew something wasn’t right. I got to the door and it all went blank. I woke up laying on gravel feeling very cold. The lady who owned the craft box (luckily a ex nurse so wasn’t to badly freaked) was holding me telling me where i was. I felt awful and so so embarrassed. Why, How not again were my thoughts. I knew i wasn’t free from the beast but i felt I had gained a little control and here i was being proved wrong. (life with epilepsy is always unpredictable)

The next few hours are really blurry as from what I’ve been told i was in and out of seizures a lot.
I remember getting up and going back into the warm as sitting on a stool. My trousers were covered in mud as was my feet and hands. tory (the lady at the activity box) washed my trouser leg with a cloth and I was holding onto a roll of bubble wrap. I felt really ill and the sensations i were getting were odd as I didn’t normally feel them this strong once the seizure had passed.
The next thing I knew I was on the floor again. this was seizure 2. this apparently continued. I can’t remember what was happening yet i know people were there I could hear Tory’s voice and then mums. I could tell the difference between Tory’s hand and mums as Tory’s was smooth with short nails and mum had boney hands with long nails. Voices were distand and under water. i felt so so cold. I cuddled in a blanket and can remember mum passing me the oxygen. I was trying so hard to stay awake yet i was so tired. I wanted to go home and so tried to get up and get up the stairs. This failed as every time i got up I had a seizure. I can’t remember this part but this is what I’m told.
The next 2 hours are blank as I got taken to hospital and woke up in the resuscitation room with a needle in my arm wires on my body and a drip hung in position. There was a nurse and doctor  asking me what happened… fit? i said groggily?  the drugs kicked in pretty quick and it turned out i had a kidney infection which probably caused the flare up, it didn’t make me feel any better though i couldn’t believe id had a fit while out, this hadnt happened in a couple of months (ok i rarely went out too much nut hey) . i was so so embarrassed.
My head was pounding but the oxygen helped a little.
I was desperate to get home and our friend was there as huge support to mum. Persuasion meant they did let me home later that evening with a large dose of antibiotics and instructions. I was so relieved. I got straight in bed and cuddled in my blanket with magick and the oxygen. It seemed that too long of the oxygen and i would start feeling really rubbish again.

                                  


Dancing Queen V’s Karate Kid

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sorry couldn’t resist the post title! 

It seemed that the next few years flew by.  school life was back on track and social life too. Yes there were restrictions but I still had fun and my childhood was pretty good really! Family life was difficult at times but who’s wasn’t right !So I went throughout the next two years pretty steadily with regular hospital check ups and changes to medication level as I grew. When I was 9  I was taken ill again. It had happened over a few weeks but I ended up again in hospital but this time not for too long.I had appointments to go back for tests which i did. The tests were quite nasty and now at age 9 i had learnt that hospital were not good nice places to be as i always came out with holes in me somewhere and hurting for the things they did. I did always had some soft disney toy or other that was great for distraction. I didn’t care that most kids thought 9 was too old for toys such as disney and soft bears… i embraced the lot disney and sparkles all the way. There were lots of tests that they done on this round of my MOT.  The one i remember vividy was one that provoked my seizures. It was an E.E.G but they made me stop all my medication. Then when i was all hooked up they flashed a light in my eyes…. i can’t remember anything beyond that point !Becoming older I understood more and more which was not necessarily a good thing! When the results of the tests came back it was revealed that my epilepsy was generalised but originated from the temporal lobe. There were lots of medication available at that point so i was put on some different pills and life carried on.After 4 weeks i was the liveliest i’d been in years… we didn’t realise it at the time but the previous medications had obviously made me more tired than i should have been. I was happy real happy. I had always loved dancing and i’d joined the local dance school at 6, but i was now dancing better and enjoying it more. Age 10 i also joined the local karate class. Here i met lots of new friends and thrived at being a little karate kid. I zoomed through the first grades and was taken to all the local competitions. age 11 i went to regionals and won! the next 6 months were run up for the semi finals. I loved the lot and had a fab day despite getting up at 4 am! i came 2nd in the combat sparing and 1st in kata. Mum and my instructor could not have been happier as we were not expecting it after getting up so early and the long journey ! My next appointment at the hospital i proudly put on dr terri’s desk my trophy and medal with a photo of me and the rest of the team. Dr terri replaced the old regional phot with the new semi final photo and was also thrilled. No medication change was needed and once again life continued on a upward roller coaster.I was full throttle in with my karate and was loving every minute of it… I was going to competitions every week and even went to a big competition in London, this one didn’t go too well as i was 3 times smaller than my opponent and ended up in the ambulance corner where i got patched up ready to do my next competition entry: kata. Despite the cuts and bruises from the fighting i came 3rd in the kata class so it was worth going especially as it was such a huge competition.My love at the moment was dancing. id only recently started competing but was doing ok. In fact I had a dancing partner, he was 2 years older than me but we were a good match. We both done really well with our routine and thrived in rock and roll. Competed in many competitions School was also great. Apart from seizures when I was poorly with cold, flu or had an infection. Anyway school went well and from 5th year on I had no more seizures… the new medication had worked ! I was delighted as were my family. I got to do things I hadn’t in a while and I was slowly weaned off the tablets that I had been taking for over 6 years!. Life was great, and I going off with my friends on our own…I was getting a bit of independence. A happy ending? 



Welcome, & my decision to go public !

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This Blog is about my life and ride with Epilepsy. Through my own personal journey with epilepsy I want to help other people and let them know they are not alone. So many times i have felt alone…. even in a crowded room, vulnerable… never knowing when a seizure will strike.Ive been writing long before blogs were invented but it is only recently I discovered the impact that a web journal or “blog”  can have on the areas i cover in my writing. Especially on subjects close to my heart that need help to be published and awareness raised. I entered the world of “internet and epilepsy awareness” about a year ago and discovered truly that I wasnt alone. There are other people out there thinking the same as me. Struggling like me. This writing has previosuley only been my personal Journal, however through gaining confidence from the people i’ve met online and with the urge to raise more and much needed awareness of the condition I want to make my words public. This includes the non-edited raw truth about my life.I thought one day i would edit it and make it all nice and fluffy as i call it… but why? life isn’t like that and my aim is to show the truth out there so here we are. I started blogging on another site a few years ago but left all entries private… since deciding to “go public” I decided to move to blogger as they seem to have more features which I like…. so here it goes. (please bear with me while i move my blog over as this may take some time) Through going public I hope I will be able to raise awareness but also raise money in the aid of research for more treatments of the condition. so far this year my total is £720. Please give me feedback on my words and donate to my just giving page if you are able.