This Blog is just to say a massive “THANK YOU” to all my friends and family for their kindness.
For all those people who are sending messages and prayers of get well soon, and for my close friends and family who are looking after me through this tough time.
I have so many messages and I do read every single one of them even if i dont reply to all.
Here are a few of the things i’ve been sent and messages and thoughts. Every single one of them im thankful for. There are far more than what is in this blog so please dont get offended if yours isnt here. I cant possible put every message or picture up but maybe I will start to do videos when I get better or something, I dont know. I have alot Im planning at the moment so keep you posted.
for now all I can say is thank you to you all.
|Picture Taken from when I had sleepover
In the studio. I made this fish to keep
swimming out of a sparkler!
|Thank you to my Bestie Lara for this beautiful card. xxx
|A chant from a special lady I know xxx
|Lots of special wishes from special people xxxx
This picture was made for me by Lara.
So so cleaver.
|Balloon and fluffy from my bestie Claire
|these are from my best friend Linda
the necklace is of a hand holding a sparklie ball.
we both have one cos we hold each others hand and both like sparkles.
I also got nail tips, nail decorations, Sellotape pretty bits for scrapbook,
magnet, tinkerbel necklace and some sparklie tights!
|More beautiful cards
This is a case I designed and mum got printed for me
|Beautiful bracelet made for me by a lovely lady
It says “jo, Just keep swimming”
|A lovely lady I know from a band brought me these bits back from
her holiday on the Disney cruise line. She knows I love disney.
I can not get over how thoughtful the gifts were but also that they
were presented so lovely. Wrapped in purple tissue paper and minnie mouse
paper and then put into a pretty box with sparkles on.
XXX THANK YOU HELEN XXX
|Pirate bandana from Helen “oo ah!”
This photo is of a lovely Necklace that arrived, as complete surprise and was from my best friend Lara.
I know ive said thank you already but thank you again… he is so cute!.
It was amazing to see my friends from Australia yesterday. I really enjoyed the catching up we did and it was lovely to see them well and hear all about their travels. However I am paying for having a good fun day yesterday. I didn’t go mad yesterday, I was really very slow in what I did as my head was still in quite alot of pain as were my joints. However I pushed a little and made it to talk and have a cuppa coffee.
Despite this and being careful and mum doing the preparations and still taking my medication today I am in agony. The pain in my head is much worse, i ache from head to toe and Ive already had 2 seizures today and I think its pain induced. The cluster attacks are more than yesterday and the day before. Im really struggling. Im tired too as last night I was woken many times in pain. After taking my pain meds the sleep is not what I call real – its forced and drug induced and i can still feel the odd stabbing of pain despite being asleep. Its hard to describe.
However was it worth it? Yes. I cannot stay locked away in a darkened room all my life. If i have to live the next however many years of my life like this then Id rather push the boundaries every now and then to do something great than not.
Fun in my life seems to have a price. No matter if it be having a seizure at the titanic ball or being in more pain than usual because I did more walking or more of whatever. The price is normally paid by mum moaning about how I shouldn’t have done (fill in the blank here) and me saying I would rather live my life and push the limits and pay the price than not have the life or experiences at all.
I think mum can see both sides of the story – or I hope she can. I hope she knows that I don’t do any of these things to annoy her or cause her trouble and Just because I do something she doesn’t agree with it doesn’t mean I think any less of her or do not love her. its not. It because i want to try to be “normal” (whatever that is). I want to live life rather than spend it locked away.
I love mum dearly.
You only get one chance at life though and I plan to live it to the fullest I can, and yes I will push the boundaries the next time I want to experience life.
Don’t loose out on life, you only get one chance and it’s too short for if’s, but’s and maybe’s.
go enjoy what life has to offer.
We arrived home. that night pain levels were obviously still high. Higher i think as I’m sure the morphine i had was not as strong as the hospitals however i was home.. i was happier.
In the end i think its things like comfort, family and friends that help the healing process. My friends are amazing – they come to my hospital bed and they come to my home but when I’m at home its so much nicer and for my friends who are far away I can FaceTime them at home and seeing them makes me happy. basically life was really bad but better at home.
The next morning I woke to severe pain. I had the morphine and we managed to see the GP. It was a real struggle to get up there but we needed to. The GP prescribed something called M.S.T and was told to take one straight away and then use the oramorph when the pain was really bad.
I continued to do this for the next 24 hours – i began to itch though – it must be a side effect of the medicine. i managed to sleep again but it was restless sleep.
I dont know if anyone else has felt like this but i was asleep yet i could still feel the pain – i tried to wake up but couldn’t. i call this Kruger sleep cos its a nightmare !
The next few days this all continued – with one change of the GP swapping the MST and oramorph for oxycontin and oxynorm.
This wasn’t a good change though. The new meds made me feel terrible ill and sick and we had to get the GP to come out again – gave me an injection and we went back to just the oramorph as the other meds were not agreeing with me. Shame as the pain had been less on the oxynorm.
The next few days I slept on and off – my oxygen levels occasionally dropping and me still having seizures almost every day on top of this.
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
What girl does not want to go to cadbury world, the place where chocolate is made! and in my case dreams !
Ive always wanted to see the world of chocolate, to be in the biggest chocolate shop in the UK and to smell chocolate being made. It was a 2 hour trip to Birmingham – I really didnt realise it was so far. When My bestie said about going I never thought it would be so far. We arrived after the journey and entered Cadbury world.
there is so so much to say about cadbury world but if i did then it would ruin the surprise for you going yourself. There are alot of talks, lots of lessons about chocolate and a chocolate bean ride,
We were bombarded with chocolate bars at the beginning and then little pots of heaven… i mean to say little pots of melted chocolate around the course of the tour.
Then you get to write your name in chocolate and watch chocolate being made the new way and the old fashioned way. I could never work in a chocolate factory it would be far too tempting.
There were lots of shapes made from chocolate,… i even found a chocolate clarinet and saxophone !
Sadly these were not for sale.
the day was fab, very tiring and i was struggling that day but totally loved the experience.
I am just going to say that the holiday blogs are going to be just that until the thursday. Yes I had seizures during the week. some big ones, lots of little ones but for once I want a little bit normal stuff on here just a week.
So It is Sunday and sherwood forest was calling… Well not literally but we were off to sherwood forrest. This is something Ive wanted to do for more years than you can imagine.. It was on my bucket list and something that i read as a child and said then “i want to go there” ive said it with ashdown forrest too (the 100 acre wood for those of you that do not read winnie the pooh novels).
Anyway we were all ready (ralph, Linda, Mum and me. Jade couldnt come which was a shame but we all piled in the car). Ralph I now know is a ex chauffeur which makes total sence now as he took us the long way round to show us the beautiful sights of the area. I was literally stunned when we came across sights such as this:
We arrived at Sherwood forrest… somehow it was not how I imagined. This is not a good or bad way just completely different than my pictures I had in my head. It was also alot bigger. It seemed ages before we got to the car-park and then we had to walk a long long way to the Major oak. The major oak was stunning, though tainted by supports that kept the branches from falling down in storms. It seemed so sad that something so naturally beautiful was now subject to being held up by man made structures. However it was still beauty, Just like everything, beauty lies within.
There were other trees round the forrest that were “quirky” too
This was my favourite
on the way home we had a picnic in the grounds of a beautiful abby, It was like a dream, I had just visited the major oak and was now on the grass picnic and blankets and calm, peace, no grr’s nothing. seriously amazing all I can do is thank the people who made it happen because you will never know how much that meant.
|Mum and I
|Me and my best friend
By the time we got home I was exhausted, I ached all over from lots of walking but It was one of the most amazing days ever.
Well last week I was on the verge of breaking down, this week I hope things are on the up. My weekend started Friday when I had an appointment with my Dr about my ECG and the probability of me going on the new pills… Well Due to the ECG and the “unlicensed” meds The answer was a No – However he will prescribe them if my London consultant says yes. I have an appointment with him on 22nd. Fingers crossed once again.
For now Im stuck with the situation im in. Medication making me tired and sleepy if I take it – having seizures and being in pain if I dont. Its a conflicting situation. I have no choice with the seizure meds but I try and hold off on the pain killers as long as I can. The likes of Codeine, ibuprofen, Diclofenac and some other injection that I cant spell and morphine are not nice meds to take.
After the recent events Ive been really like a recluse an not wanted to go out much for fear of seizures as they have been quite bad… except the drs of course.
However This weekend My weekend started friday.
1) My Grandad is out of hospital. Its a long story but he went in for a knee replacement last year which went teribly wrong. His leg had to be straightened, a year later and the work they had done had broken and crumbled and so he needed another op to repair his crumbling bone. He is now out of hospital with a straightened leg and two rods and bolts through it and in plaster however it is fab to have him out as he normally ends up really poorly in hospital with infection…this time, so far so good all is ok. This also means mum and i do not have to live up there to be with nan. Not that I mind but it is one less hassle of taking all the necessary things up there. And they are both happier now they are back together.
2) My Camera arrived. Ive been asked to do alot of blogs and vlogs recently and my video camera I previously had (the Flip HD) was not up to the job, plus its hard to video yourself when you cant see what your video’ing. Now I hate videoing myself, moving picture is fine but if I have to talk im not so happy however I do it for Epilepsy awareness so Im trying to get over my fear and improve my self confidence by doing this. Also I need it for the next piece of good news.
3) Friday I got the news that I am reviewing things for this new company IWBYE which stands for “I will beat you epilepsy”. I am honoured in being the first person ever to receive one of their tshirts designed by them and I will be doing reviews of their products via this blog and my youtube channel (tiggerifficjem) please go take a look at my channel and subscribe. It is totally free to do so and you will get a email when I upload a new video. Also the more subscriptions I receive the more knowledge gets out there and the more I will be doing.
|You can visit them at this address
Click here for IWBYE
4) This weekend was Sci-Fi weekend. Saturday Lara came over and we chilled out, she visited me at studio Tigz (my little craft and relaxation room) and we had a good time. I re sealed her dreadlocks and we done nail art In preparation of sci fi day. I may look into making some dreadlocks as apparently Lara thinks I would be able to do it and there are few people to get them from. So I will be looking into that when I get back off holidays. Ive got too much to do until I get back.
5) SCI-FI DAY: Yes today Is sunday. I am sitting on the sofa, in my pj’s totally exhausted. I have been here since 2 o’clock this afternoon! Today was the first time I’d been out properly since being poorly again. I wasn’t feeling my best when we left but I took meds and felt I could do it. With Lara by my side I always feel happier. She is one of my true best friends who Ive known for many years and It doesn’t matter where in the world/country we are we will always make time for each other Anyway so Im exhausted but it was all worth it. Lara came over early and we got ready, Hair and last touches of make up – not that mine was anything spectacular but we both felt better – I wore the Superman (girl) tshirt that lara had brought me and we were off. We arrived at 11am and had a look round, From the outset we could see many characters and costumes and stalls and music and people – there were hundreds of people ! We handed over our tickets in exchange for a hand stamp
The Giant Ghost buster marsh mellow was hard to miss, There were lots of lovely people there including those that helped organise and set this extravaganza of sci- fi up. We walked around the first few stalls and then came to the Activity box stall. It was really good to see Abi and Barbs as I’d not seen them for so long. Lots of hugs all round and I felt happy to be out. My confidence was growing. I left my oxygen behind the stall as It is really heavy. We looked round a few more stalls until my legs couldnt carry me anymore so we went back to the activity box tent for a reset and chat. It was great to introduce lara to other people in my life. I like it when everyone knows everyone – I guess thats the country person (as my grandad would say) coming out in me. I went to another stall on the next look round that done face painting/temorary tattoos’ I chose a nemo design an had it on my cheek. I love the Finding Nemo film – especially the quote “just keep swimming” i really believe that if i just keep swimming in life I will get through this.
The day went on and we took lots of photos and video (i tried to do a scilent VLOG for my first one to get my confidence up so I will be sorting and editing that in the next few days and it will be up on you tube.
My head started to get worse and at 1:15 I called mum to come and get lara and I . Lara had to go home to Essex too so she had a long trip ahead. I came home and apart from editing a little video and photos I have been resting. I face timed with my other bestie Linda which was fun… I love facetime. We are both getting really excited now about me going up to visit soon. I cant wait. Lots ot do and fun to be had… Of course I will be bloggin!
Nite Nite for now and Thank you to all those people who made today possible and to those who made me feel more “normal”
A year on i went to the local high school. I knew i wanted to go to there for years as both mum and dad and my aunties and cousins had gone there…. i’d heard all sorts of stories and wanted to go there and see, feel and have the same as they had years previously.
I was going out with friends, riding my bike, going to parties and discos and having all the fun a normal kid should have.
!!!Life was great and I had only just begun to realise its full potential!!!
The roller coaster was speeding off into a distance filled of disney and sparkles.
I loved school. there was no other word for it. I would stay to clubs, do extra homework. I was in science club, tennis club, languages club and history club. Whatever knowledge that school had i couldn’t wait to soak it up. The science teacher brought in work from the years above so i could do it when i finished our programmed work. My homework was pages instead of paragraphs and i even got told by the history teacher that it wasn’t necessary…. yet my only reply was i know but i enjoy it! so i was the class Boffin and i didn’t care.
For the first time in my school life I was able to enjoy school and catch up on learning which I found i loved as i didn’t miss a single day of school due to seizures.
My attendance was 100% for year 7,8 and 9 and my merits were always rewarded at the presentation evening. Life was fab as far as me went.
Family was difficult at times. My father and I never have got on since well… ever to be honest. There are many stories I could tell about my younger years and the “jealousy” “childish” behaviour my father showed towards me however to a certain extent I do have to edit the “family” part of the blog… because It is family stuff. Maybe one day i’ll be brave enough to fill in the gaps! for now I will say this… things were difficult at times. One story I can tell because, well, it was pretty public for me at the time was My prize presentation in year 8. I had just been awarded with 100% attendance, merit certificate, a science award and the history cup prize. I wanted to go back to one of the other halls where all my friends were with their parents and chat like you do. I went back while mum and dad were working their way there through another door. I didn’t know at the time but my dad had already had some “drink” and he and mum were having a bit of words for some reason that i still dont know. Consequently by the time we all met up in the other hall and there was wine and juice available there too my father ended up having a huge row at myself and mum which included drink and a few other matters. there I was in the middle of the hall making my way back across from talking to my friend and getting a juice drink when i could feel everybody watching my family un-fold in front of my very eyes! its not something I wanted to repeat. Therefore on future prize evenings of which there were 3 I didn’t let dad be present to them, and if there is anything that I want to go really well up to this day I use the same method of him not being present. Its really sad and I do feel I am missing out when I see other girls with their fathers of whom they are proud of and visa vera but that is life. My mum is more than enough to make up for the lack of father figure!