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Thursday Thought

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I was really surprised this morning when I woke up to a link I was mentioned in on twitter. I am still relatively new to twitter and don’t know many people on there I don’t have many tweeters? or followers? It really is all a big adventure at the moment. Anyway I followed the link to find that what Myself and the lovely reporter were talking about last night was already done and live online! 

I had been asked to do the Thursday thought for the this is kent online column, Its part of the Herne bay, whitstable and faversham times newspaper group. I was really touched when Liz said my writing was good. I still find it hard to believe that anyone does read my blog. So this was very touching. 

Anyway the entry “stop and smell the roses” was used for this particular column. 

Its something that I think everyone will take something from wether you are a high flying businessman with no health problems or someone like me who doesn’t have their health and is struggling. This is an article I like because it gets over the point that we are all special. 

If you want to have a look at the column online please Click Here.

Also if you go on twitter, drop me a line. I dont bite and will talk to anyone if they want to talk about anything that my blog mentions. Whatever your situation, however bad you think things are… you are NOT alone. 



"Epilepsy never makes me shy away from life"

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A few days ago I got contacted by a lovely lady called Liz. She is a reporter and done the previous articles on me  and my awareness videos and doing my abseil (if you’ve not read them they can be found by clicking here Abseil article and here Awareness video articles).

In our paper there is a section about people in the town. I always thought people in this section were prominent people of the town though now i have been asked i’m not so sure what their criteria is.
Anyway I was asked and I agreed. I got sent some questions and replied and this is the result.

Click here to read the article online

Pushing boundaries

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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

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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. 





Speaking out.

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Over the weeks running up to the abseil I started speaking out about epilepsy more. I was never the type to tell the world about my problems… It just wasn’t me. However after meeting people online and looking back at the people I have met in this world that were rude, nasty and had not any idea about epilepsy I realised that my new friends were right and that more awareness needed to be raised about epilepsy. If you say the word cancer to someone they instantly understand and know what you mean… try saying the word epilepsy and watch the persons expression as they try and analyse you to see if you are mental, or can understand them or are going to attack them at any given moment… its not right. 

I looked about on the internet and I relaised that although there are many more things about than when I was a teen there was nothing to really help them or infact the rest of the world know they are not alone. 

I then created this video. 


This tells the truth about living with epilepsy and tells people about my epilepsy. 

Epilepsy is about having seizures but it is more severe than you think and 1000 people in the UK alone die every year from epilepsy. 

I Wanted to show people with epilepsy they are not alone and that everyone has down days but life is still worth living. After the struggles I have had in life I nearly didnt make it, not because I have been in intensive care a total of 3 times due to seizure but because I tried to end it all when I was a teen and felt so alone.  Anyway this has a positive end of that  it is hard but it does get better and it is worth the struggle. 

I have since made a few more videos about my fundraising and about epilepsy. There will be more in the future to they can be viewed on my youtube channel. link below. 
(please subscribe to me… its totally free and you will get updates when I post more videos)


Ive also done a interview with a online paper and the Local media and I hope when I figure out what im going to do next re fundraising they will help me cover it and raise even more awareness. 

Link to the online article below 


The News paper article about my abseil


Halloween

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Halloween is one of my most favourite times of the year. I love the spookiness, the food and autumn nights and it gives us adults a chance to make up and dress up without getting funny looks ! Just the last couple of years Halloween has been fab in our town. There is a group of people who have got together and organise a Zombie craw and this year (the 2nd year) we are also having a zombie ball.


I this year I was going as a zombie sleeping beauty, Kara as a zombie teacher and Mark and his daughter a zombie man and zombie school girl. 

The run up to the even was great I loved dressing up and making up and it was a real buzz. The crawl was to be longer this year and i was also asked to shake one of those buckets where people put money (the events these people do always raise money for some charity). Anyway the night came and we were all made up and ready to go. 

It was FREEEZING ! oh boy it was cold. Mark, nic, kara and I all went and and after many photos the crawl begun. by the time we got 3/4’s round i felt it was literally a crawl i knew it was supoesto be longer than last year but compared to last year it was a hike! 
We all returned to the hall where the ball was to be held safely, exhausted and freezing but the night was young and we soon warmed up. 
The event was a disco and a dj with all the gear was on the stage, the music was loud and fab. I hadnt gone to an even like this since a ball about 7 years ago. I had checkedd before booking that there would be no strobes that would set my seizures off  and  there wasnt… the night went really well and we all had a good time. 
For once I felt normal 

  

One year ago.

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The next 2 days I had night fits and so sleep wasn’t great… dad was being his normal self and so i was a little stressed.
I needed to get out. emails/fb messages and texts had been going between Tory and I so to save me running round doing jobs with mum I went to the activity box. I was scared at first but took my oxygen and had phone off lock and Tory new everything. The day went great. i was exhausted at the end but i did some painting on the floor when i started to ache in the chair….  but still it was great. The work experience boy was a drummer so i tried to get him into coastal band…. i think he may be interested.
Pat, Tory and i spoke a lot over the last few days about my interest in art and the craftbox…I was asked to do the disney side, and to paint a few pieces. 

A few weeks passed and then another blip..
One Monday I was at the craftbox on my art class course… I felt ok’ish… my head was pounding but id taken pills and i was doing my painting. Well i obviously looked ill as Tory managed to get me downstairs… I had a seizure and another and another.. luckily we had oxygen and i was able to come round in between but then that stopped… no more coming round. The ambulance was called and I was taken to the local hospital but different from the one i normally go to. I hate this hospital. I was given oxygen as the fits had stopped and had neuro obs done in a fashion… I can remember being pulled and poked and shouted at while i was struggling to sit and keep upright and stay awake.. I’ve never struggled so so much to keep awake as a dr was shouting. He finished and asked how i felt.
I told him i still had my aura of a funny feeling in my stomach and like i was going to have another seizure.. He told me that stomach pain is nothing to do with epilepsy and i was discharged and out the cubicle in 5 minutes… i guess they wanted the bed !

I can’t remember much apart from the struggle to walk.. I didn’t really know where I was and mum told me she was literally dragging me out the hospital. The next thing I know I was waking up on the cold floor of the outside of the hospital… id had 3 more seizures. There was a couple of nurses i think and i was taken back to A&E. Mum had called dad to come get us earlier on and now he came and I was back… I’m not sure he was happy about having a wasted journey but then he saw a fit and realised this was probability where i needed to be. I was kept overnight and discharged on the tuesday morning.
I was stressed and pissed off and wanted to be anywhere but on this plannet but here I was. Wednesday I was determined that this teapot was going to get done. I went to the craftbox with mum. we had a lovely morning and id nearly got it done. I had a appt with my dr consultant in the afternoon so After a lovely morning of watching Tory and Pat sorting shelves, eating brownies and scones and strawberries, and me painting my teapot and minnie mouse i went to the appt. the consultant was helpful yet disappointed as i was but didn’t say as much i i had hoped… I came back to the craftbox to collect some bits and finnish off as Kara was there now too. Tory had given me a lot of bisque to paint for disney style so she can sell them too.
Kara offered me a lift home which i agreed to but then felt odd… i text mum straight away to come and get me but by the time she came i was out again. I can’t remember much from here on but mum said she came and then Tory called Pat to come down to help. I can remember Pat’s hand and voice at times. Then mum called Grumpy off the bus cos this was the wost she’d seen me.
He came I was taken to the city hospital and stuck onto Phenytoin drips and saline as my bp very very low….. 40/38 ! ! ! 

anyway the next 2 days were awful… I did however meet my ex mentor who was lovely on one of the wards. It was a bit embarrassing though having seizures in front of someone who helped train me to be a nurse.
I had to move from there to the neuro ward and thats when it all went wrong…. The drugs by this time had racked my system and i was not me.. i cannot remember a thing but being in a very small room and dr’s and nurses in the room crowding me trying to explain about brain scarring. I asked if i could have just a couple as i was feeling very claustrophobic and sick but they refused to leave… i apparently became very agitated sat on the floor…. i guess to get out of all the heads and tried to get out the hospital. bloody locked wards !

Kara was there and had gone to the lounge so i went there and i panicked. I phoned the only person i knew understood what was going on and may be able to help me so i wasn’t so crowded with people… Tory.  I now know I probably shouldn’t have but i needed a friend who could talk hospital language and help me stop these people all talking to me at once… I had asked to talk to one person and that didnt work. Tory was my only thought to help… I thought she was a good friend.

She is a friend but at that moment not in the situation on that day….. The drugs had caused me to not know what had really happened that day. I felt back at square one. Alone with no one understanding what epilepsy and these drugs do to my body. I am still doing commissions. I still feel very unhappy and disappointed  that this happened though. I had lost control over my body once again.

I finally got out of hospital on the saturday and received (mum received) a call from my consultant. As we are at the moment we are still waiting to hear and get an appointment for help and talk about london.

Im still having the seizures much worse than i was although i am coming out of them so that is good!
i don’t want to go back to hospital as I’m so so sore . my veins are hard as rock again and all very painful… phenytoin and diazepam and all the other drugs that I get given are  nasty drugs but good as they work.

Magick keept me company in the three weeks i was in bed.
my best friend in the shape of a cat !



I stayed in bed for about 3 weeks after coming out of hospital. The seizures had racked my body. Sore joints and muscle weakness, My left eye had also gone black and i was unable to see out of it. This had happened before but this time it seemed worse Normally it was blurry but this time it was black. 

This was about a year ago….. more has happened since then. 


Race for life 2012

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There two things in life that scare. me…  loosing those people who are precious to me… And  the uncertainty of how/ when/ the beast is going to strike and the uncertainty of what will happen because of it.
It’s a fear i deal with daily and yet it never gets easier.
Today is friday. The day after tomorrow (sunday) I’m supoesto be in the race for life.. ok my whole world seems a race for life at the mo but this is special. Race for lfe raises money for those with cancer especially breast cancer. thousands of women all over the country come together and walk/run a 5K course and get sponsored for doing so. It’s a wonderful atmosphere and I’ve done it for 10 years. This year in my mind is no different…. the will i do it won’t i isn’t a option… i have to do it. 
Too many people have been taken away from me by this cruel disease for me not to fight back and this is how i do it. When i run the race i feel energy, adrenaline serge through my body… then I feel pain and the aches that go with running or walking that distance. yet this is all part of it. I look back of how my family have suffered with cancer… the struggles they went through. The struggle that i have been through and then i feel silence as i remember those who didn’t make it.
There are so so so many people who i could run for but i have 2. These 2 because they were the most inspirational people I know and have known. My nan has battled cancer twice. The first time she had a maceotcmy then came all the trauma after of drugs, appointments, uncertainty, fear and pain. She took it all in her stride never looking to what could happen. I really admire her for that. I couldn’t have braved it as well. Then 18 months ago nan was diagnosed with stage 4 lymphoma in her other breast. The chances in it happening were crazy but yet here we were back in the same routine. Being such a aggressive cancer an operation was no use, She went through months or radiotherapy and so far so good… but we are still having that fight. If there is something I’ve now learnt and thats it mostly is never over completely.
The other person I do the race for life for specifically is Suzie . She made such a impression on me in such a short time its hard to think of a world without her… but we have to. Suzie lost her fight with cancer and this will be the 2nd year i’ve raced for her. I met susie at band practice and although the band is friendly and i love it Suzie was always the one with the smily. She was the lightbulb in the room, the sunshine in the sky and the wind in the trees. She was the sort of person that she didn’t have to say a word to make a problem go away. She meant such a lot to so many people. Its wrong she was taken away but her pain and suffering is over and I race for life to help make a difference in what could happen in the future. A future with new drugs, new promises and a
place where cancer doesn’t win.
The last couple of weeks have been really tough. If felt like my body is no longer my own, but Sunday it will be. Sunday i must win.
Crossing the finishing line

UPDATE
well i did manage the race for life… all be it with one hell of a struggle and a lot of oxygen on board! the last few days have been difficult as I’ve ached so much and i paid for the race with a seizure that night. At least i got through it and raised the money and thats what i wanted to do.
Mum and I in the local Paper

                   
Yay
With our medals 

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!

Popped bubbles

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I was trying to still have a life despite the seizures however i could no longer go to my band practice that id been doing for over 11 years as it was late night and i got tired. Id had a seizure on the way there and it made me think of how close i was to total embarasment… I was so scared of it happening again while sitting in practice or while on stage at a gig…. in fact I still am. 
Mum and i did start going to Womens institute with kara and her mum. This was ok it was once a month and was a sit down affair and some of the talks interesting.
kara would also come round to mine and we would chat and do crafts… life wasn’t great but it was ok. kara and i loved similar things and had a understanding. unfortunately i couldn’t go round to hers much as he dog jack had taken a dislike to me and tried to eat me on too many occasions for my liking but we still had mine to meet up at.
The results of the telemetry were in. As far as i could understand this was to see if there was a way out via surgery. There wasn’t. The tests showed where it was probably coming from but it stemmed from too deep down and to operate would be too life threatening. So we needed to look somewhere else.
During this time my new consultant had thought about my headaches. He asked me some (what i thought) random questions including did i have a runny nose when i had a headache did i tear. I hadn’t really thought about it before but yes my nose did run and yes i did tear but only from my left eye. Mum and some of my friends had mentioned previously that it looked like id had a stroke when i was having a really bad one. The Dr took one look and said at once he thought it was cluster headaches. Aparently it fit with all my symptoms and he has heard of a increase of people with epilepsy also had cluster headaches. Excellent i thought we know what it is now we can cure it.
POP ! there goes that bubble of thought. There is no cure he said, only treatment. The drug is a heart drug so he needed another ECG report. the other option is Oxygen but we needed london to sign this off as i was still under them.
I went to my gp who done a ECG and i took that back on the next appointment. POP there goes another bubble….. I wasn’t suitable for the drug. My heart results were not normal and so  now oxygen was my only hope. 2 Months later I went to london.
This time the hospital transport system had changed. Meaning unless you physically couldn’t walk it didn’t matter where you came from you needed to get there on your own. I was still having seizures that were violent and unpredictable. A friend offered to take us and mum jumped as she hated London and wouldn’t cope on her own with me in a strange city.
We went to london and after 2 and a half hours in the office we came out. our friend had coffees waiting which was a relief beyond reliefs and we went home.