Tag Archives: bad

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. 





One year ago.

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. 


Loss of Confidence

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!

You can’t die


A week later we went back to the consultant.
I had written a list of questions I wanted to ask as i had been researching like i use to for my coursework to try and find answers to something that may help me.
The consultant was obviously in a bad mood that day he was slumped in his chair. one leg over the other with a book on his knee. He waved his pen and beckoned us to sit. I started to feel uneasy as i started to ask my questions, It felt like he wasn’t listening. When he started to answer my questions my fears were confirmed, He hadn’t listened to the question. I tried to ask him in a different way yet still nope. I started to get upset and he said “we can’t do anything for you but i wouldn’t worry you can’t die from epilepsy” At that i burst into tears, I excused myself and he stopped me, “why are you leaving” he said. I answered because I’ve been trying to ask you questions for 20 minutes and you haven’t listened or answered one of them. You have dismissed all my problems with saying i can’t die from epilepsy when last week you gave me a leaflet about S.U.D.E.P. (sudden unexpected death in epilepsy) With that i left the room.
I sat outside in the lobby waiting area and had a coffee. One of the receptionists came over and said “you had a appointment with dr boo didn’t you?” yes i said. “Do you wish to make a complaint?”
No i said. With that she gave me a tissue and left.
For a receptionist to say that I’m guessing this guy must have had a lot of complaints against him, since that day I never went back to him and have since found out that many people think his bedside manner a lot to be desired for.