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 ! |
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
Holding my magazine ! |
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.
The pain got too bad
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
So a couple of posts ago I spoke about my wish not to be resuscitated if anything should happen to me in a seizure. Well the deed is done so to speak. I have made my advanced directive and am working through making a will which also includes writing letters to people to read when i’m gone which to me seemed a bit weird but im doing it…. its hard and almost have no idea what to say… do i add jokes or do i make it all sombre? well if you know me you will no that yes i’ve added jokes!.
Being that Im so young and the situation would be an emergency It would be very unlikely in an emergency situation that a paramedic would know what not to do. By contacting legal advice I have been given a card to cary… it looks like a credit card but says ive an advanced directive. The card came from the same people who are helping me make a will and finalise any other details with regards to what I would like to happen. For example my funeral. (oh what a happy blog this is ha ha)
It is difficult and emotional but its the right thing to do. I want to make my own decisions and i want to be prepared. I do not want to end up like a cabbage.
I spoke with a friend the other day only briefly but enough to make me think i was definitely doing the right thing. It helped to say it out loud I guess… I explained that I didnt want to be in a useless body with a sound mind, or the other way round. I know that many people do not get the choice (those born with disabilities) however as my friend pointed out… They dont know any different. I will. I will know about the life that I could have had or I will know that its hard on the people who would have to look after me like my mum. I would know all these things and not be able to do anything about it.
That is the difference and that is what I could not bare. Now see me as a coward if you will but Id rather not be resuscitated.
Lots of people have said im brave. or its a brave decision. I dont think so. I think its the right decision, a difficult decision that has not been taken lightly. Yes ive had sleepless nights, ive had nightmares of what could happen and ive woken up and sat bolt upright thinking that i have to do this to stop my worst fear from coming true. I guess its scary but life is always scary but for different reasons for different people.
Dont think im giving up on life though because im not. I will neaver willingly give up my fight. Every day i cherish, every minute of seizure free activity is a bonus and every minute off oxygen makes me feel free.
Life is amazing but I must plan for the future.
Anthony David King 24/07/1981 – 29/01/2004 |
In his life Anthony was a happy baby, a happy boy, his epilepsy started age 10 months old. It took a long time to get his seizures under control but with the support of his family he finally gained that control. When Anthony was 18 he like most people wanted to do what his friends were doing. He started going out with his friends, playing snooker and having a drink. He also stopped taking his medication*. Anythony came home one night and went to bed at 3am on the morning of January 29th 2004… 9am the next morning his mother found him dead. It was the worst time of her life. Its the worst thing for any parent. No parent should have to attend their childs funeral.
Anthony shouldn’t have stopped his medication, neither should he have probably been drinking but he was young. His life like any young person was about testing boundaries, having fun. I know I have before. The point is that no -one should have to deal with the struggles of life that epilepsy brings.
At the age of 23 Anthony had the world in front of him. Opportunities, jobs, relationships, fun and everything young life holds. Sadly on 29th January 2004 Anthony was killed by a seizure. Epilepsy is very misunderstood. People think it cannot kill. IT CAN! Young people should be allowed to live their life, have fun. not be restricted by this horrible condition epilepsy! Sadly Anthony is no longer with us to do the things he loved however his spirit will live on in his mum,sister and older brother.
This blog is nothing more than a tribute to the life Anthony led up until the beast took his life.
This is a tribute to the many hearts and lives Anthony touched. He left his footprints on this world, and continues to do so through his mum. Now he is with the angels in heaven saving the best seats for his mum Kay, sister Jo and brother Michael.
Anthonys Grave, lovingly tendered by his mum Kay King. HAPPY BIRTHDAY ANTHONY |
(*please consult a dr before stopping any medication).