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Epilepsy Today Issue 19, September 2013.

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 ! 
I am so proud of myself for getting this far in the world of epilepsy awareness in 6 short months of actually speaking out about it. There is a lot further I want to go but for now I leave you with some happy images of me and my magazine article. 

FRONT COVER 


Page 20
                                        
Page 21 
                                       


Pushing boundaries

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. 


hospital again & Miracle Dr

The pain got too bad 

monday morning and I woke up after the night that i thought would never end. The pain was so bad i hadn’t got much sleep all night. mum wrote in her diary “you can see her holding her head and making groaning noises even when asleep”. 
I woke pleading for help I couldn’t go on like this I can cope with alot of pain but this was beyond that. 
I feel so so sorry for mum – she feels helpless like she cant do anything. She doesn’t realise her cuddles and just being there is all I need from her. Just like all my friends. I feel so bad that I cant do stuff with them and that we had so much planned this summer that couldn’t be done but they come over and spend time and they don’t ever say a bad word. I love them so much – they all give me strength.
sometimes though nothing can beat the security of medical staff and sometimes the pain get so so bad and this is where i was now… the pain was where I could no longer cope. 
Mum called the ambulance and I ended up in margate hospital. We waited in A&E an hour before being spoken to by a dr we went through the whole story again. An attack came on and luckily the oxygen helped take the pain down a bit this time. They said they were going to admit me and get me to see the pain team in the next day. After a almost sign of relief that we were going to get some help  1/2 hour later they came and told me i was being discharged…. basically there was no bed space. They said I have an appointment in Dover for the pain team on wednesday. 

I was so so concerned and that was it i was at breaking point. I couldn’t take it much longer. How could i possibly get to dover being in the pain I was in? 
We were sitting outside the hospital now – we had to wait for a friend to come and pick us up as they were not even concerned with how we were going to get home with me in t he stat i was.. I thought the NHS was a caring service…. How wrong i was. 
We eventually got home and the next couple of days nothing really changed. 
Then the day of the Dover appointment came. It was about 1 and 1/2 hours drive from us and I was not even strong enough to be out of bed. We packed the car with pillows blankets and morphine syringes and my other pills and the oxygen and off we went. I needed two syringes on the way there but survived without a seizure. 

Well what can I say I am glad we went. The dr (tim) was lovely. we spoke to him for an hour and he is the first dr to truly believe the amount of pain im going through and understand it. He was not phased by the answers I was giving him to his questions and diagnosed or sure Cluster headache. (google it, and it will say – “the most painful condition known to man” by medical definition.) I was so relieved that someone understood and took notice of what I was saying and experiencing. The verapamil was put up over the next 2 weeks and told to go up a subsequent three times with two week breaks. He also said I could go back onto my old painkillers as well as the stuff I was on now. He also said that in the future he would like to end me to a guy in London called Chong who is a renowned specialist and the top in the country on cluster headaches. He understood that it not practical I go to London now.

We celebrated with a quick stop at macdonads where I had a iced frappe coffee (i love cold coffee – its definitely my fuel) When we got home I was exhausted and the cycle of headaches and seizures continued. 

My epilepsy consultant phoned us that same evening as we couldn’t go to the appointment as it was the same time as this pain specialist… he wants me to see a specialist in London too – a different one who knows about epilepsy in the regions I have mine. he is trying for an appointment ASAP – (joke as recently we have had a letter stating we are on the waiting list for the waiting list – we should receive an appointment in “several months”). 

My epilepsy consultant was really happy of the cluster headache diagnosis though – it was him that first said about it however was getting no back up from my previous consultant. This dr tim who i saw over-rides them so he is really happy that is getting sorted. despite being a slow process. 


Just knowing what we are fighting helps. 





Home at last.

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. 


Hospital hell.


Well Ive not blogged in a couple of weeks because Ive been in and out of hospital. It has not been a nice few weeks either… not that any time in hospital is nice but this couple of weeks experience has been exceedingly bad. Ive had everything from poor care to route staff and being discharged from hospital in severe (and i mean severe climbing walls pain!). Thats where I am at the moment. 


It all started Tuesday 29th July. I had a really bad day trying to keep my headache pain down, I had taken several doses of oramorph and had been on the oxygen a lot. It was helping to keep the pain down but the pain was not cope’able.  I finally managed to go to sleep in the late evening. I was so tired because pain is so draining. Id also had many seizures that day which in themselves are draining to a great degree. The next day (30th July) I woke with the pain again, Struggling through with the oramorph, oxygen and still having seizures I couldn’t go on any longer. The seizures got worse and mum called the ambulance. I was given morphine through a cannula in my hand and taken to hospital. By now the hour was late and we were into Thursday morning. 
The pain started to build up again, all i had done was move a couple of steps!. I was given more morphine through my drip. A nice Dr also managed to get blood from my other hand…. so this point I had 2 needles in ! 



I stayed in the CDU for a few hours where I was given drips to keep my blood pressure up and medication for the seizures and pain through the drip too. 
After I was moved to treble ward (the neurology ward). I was put in a side room and given oramorph when the pain was bad. However things were not all that easy. It was really difficult because the nurses were not all nice and happy and easy going.  The pain relief was also slow… Id have to wait up to half an hour in screaming pain before the nurse finally administered pain relief. It was hard. 
Friday the neuro team came and I was prescribes codeine. Varapamil (a strong heart drug that is supoes to help cluster headaches too) was discussed and prescribed. I was also put on the video telemetry for a few hours to see if they could see if the seizures came from a different area when I was in pain to not in pain…. I never did hear the result of that. 



The Next day the weekend dr came and he was lovely (really explained things and took his time to help). He prescribes Naproxin to try and sumatriptain. Id tried sumatriptain before and I wasn’t really happy about trying it again as It sent me into seizures but with the pain this bad I was out to try anything and everything. 
The naproxin was taking too long to kick in – i was spending up to one hour in severe pain before it would help by which time id either had to have oramorph or had started having seizures. 
Later the Dr came back and suggested I try a sumatriptain injection. I agreed. The nurse hadn’t done one of these injections before (i had) so I let her do it as I talked her through the self injecting gadget ! The drug kicked in pretty fast as I get a tingling sensation all over my head and my arms felt heavy…. But then it all went black as the seizures started. The drug made me feel very very ill. It was the exact same effect it had taken on me almost 10 months ago. The next day I just went from one attack to another. I was weak, not eating and very down. Pain is exhausting. 
Dr Wan had written on my notes that if i was having a bad attack oxygen was to be given and then Naproxin within 15 minutes then or if longer than 15 minutes…. Morphine was to be given. 3am in the morning and the nurse took such a long time (45minutes ) in administering the naproxin it had gone beyond that stage and I needed oramorph.  
I was in agony, I got angry that it was taking such a long time to get any pain relief and i demanded to see dr wan (who had said to call on him any time while he was on duty. The  nurse refused to call the dr and insisted on the night manager who never did come until 4am when the nurse did call Dr wan and he happily came. 
Naproxin was withdrawn as the benefits we nil because it didn’t kick in soon enough. Oxygen and morphine was all that was left. My notes now said oxygen for 15 minutes then if ineffective morphine to be given immediately. This way i was only enduring 30 minutes of pain rather than over 1 and a half hours. 


The next day i encountered a serious bad judgement of the staff of me and my condition. I suffered a cluster attack so grabbed the oxygen mask and started using the oxygen as dr wan had told me to. within 5 minutes the sister of the ward (who i had not even been introduced to) came into the room and told me to get off the oxygen. Shouting that its toxic and i shouldn’t be having oxygen. Not what you want to hear when your in screaming agony and doing exactly what the dr had told you too. I told the sister the treatment plan but it did not stop her. I was in tears as the pain was so bad and the situation was not good. Thank god for mum being with me. I love her to bits. 
The dr came at lunchtime and things were discussed. He admitted the treatments were trial and error due to the two conditions clashing. we were willing to go along with the plan  – we needed help.
Since being in hospital sleeping and rest was a big problem, i was getting very little and was exhausted. the noise levels we really high and 2 nights running a screaming patient had been put into the room next to me. 

One night I had a sudden pain in my chest. It was sharp and crushing. The nurse done my observations my oxygen level was 82%. My blood pressure 154/78 ! this for me was not normal yet they didn’t seem bothered. Mum and I were both concerned as i was on Verapamil (for my clusterheadaches yet was a heart drug). She did a ECG and sent for the on call dr to see. The dr then came up and suspected something called costrocondraditis – confirmed by an xray that i was sent for later that night. 
When I came back from xray the nurse was asked by the dr to take bloods. When the nurse came she looked at my arms. I asked her to go in the back of my hand as my veins in my arms were sore and rarely if at all in the past 4 years have managed to give blood. She refused and went in my arm. She kept prodding the needle in and out (it was extremely painful), still not able to get blood she kept trying… it had been over 10 minutes and i asked her to remove the needle – she refused. I was in too much pain asked a further 3 times and finally she did. I said try the back of my hand cos people can get blood from there…. the nurse threw the needle into the bowl and stormed out…. I never did get my blood test. 

The next day I had, had enough. I wanted to go home – i was exhausted , no sleep and staff being less than caring was not helping my situation. 
I have oxygen and morphine at home and could do the same care there and have sleep. we spoke to the dr who obviously didn’t want me to leave but understood it was the only way for me to rest.

I self discharged and came home – i felt like i could sleep for a week.
the dr had told me the treatment plan so i could continue that at home. 

my videos so far

This one was my lastest 
I was going through a really bad time when I made this video
I found it helped and also helped mum and me do something together as she helped film. 
XXX thanks mum XXX
This is my google doodle video to try and get us all a google doodle for epilepsy.
The first video I did to speak out about epilepsy. 

Pain.


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

Planning Ahead.

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. 

In Memory Of Anthony David King

Anthony David King
24/07/1981 – 29/01/2004
This is a sad post. Today is the birthday of a lovely young man Called Anthony David King. 



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



This post is for you Anthony In memory of you, your life and the love and spirit you left behind. 

Happy Birthday from Your mum, Sister ,brother & family  & happy birthday from me Jo at the epilepsy rollercoaster. 
I will be doing all in my power to raise awareness of epilepsy for as long as I am allowed on this earth. 



R.I.P Anthony

xxx




(*please consult a dr before stopping any medication).