3 months passed and i was struggling. I was depressed and upset and each and every seizure brought with it emotional pain as well as physical some seizures would mean dislocated shoulders, bruises and sprained ankles. I carried on best as i could and then an appointment. It came out of the blue but i went. I met the most wonderful Dr id seen since dr terri, surprisingly this dr new terri too. We got down to trying to work things out. I went through my history, my tests. Id brought all my letters and reports from previous consultants and mum was there and explained the seizures.
We also said about my headaches which were more and more violent than ever and becoming more frequent. We started by a change of medication and i was sent to kings college hospital in the city for a telemetry EEG. i was scared as the thought of being in a hospital in the city but on 3rd december 2010 i got picked up by a hospital car and mum and i went to kings college hospital.
|Telemetry in Kings
When we got there i sat in this waiting room and well….. waited. While there i met a girl who had come in for the same thing. her name was ashley. she was knitting on a hat loom which interested me as i liked to do craft too and had brought in some craft bits. We talked and then I got called in. We agreed that we would meet up later.
I got taken into this room and asked to remove my top half of clothes and put on the front opening clothes id brought. I only had a corset type vest to that opened up at the front so i changed into that and then the man got to work. He combed pieces of my hair out the way and shaved a tiny bit in places as my hair was thick and then rubbed on some glue he then took an electrode and placed it on the scalp. the rubbing motion really gave me a headache as he had to press hard for them to take…. 53 times this was done and eventually i was complete.
I looked like medusa the lady with snakes coming out of her head. i was given a jacket which i had to put on and i was then hooked up to a battery pack. This was then put into the computer and i was taken to a room.
In the room there was a bed, big reclining chair lots of blankets and tv as well as all the normal hospital equipment on the walls like oxygen/suction etc. also in the room was a monitor and a cctv camera pointing at the bed.
I kinda found this creepy at first but surprisingly got use to it quick.
I had to stay in the bed for as much as possible and only go out of the room to the toilet which was just next door. I sat on the bed and the man attached the wires to a long thicker wire. Thats it i can only go as far as the wire would let me.
I tested it out once he had gone and as i walked out the room for a quick test i saw ashley she had been hooked up to and we could only meet from one end of the nurses station to the other. She was in the room next door so she would walk up to one end (as far as her wire would let her) and id walk to the other end (as far as my wire would let me) we exchanged craft ideas and gossip and slid things up and down the nurses station for a week and we became good friends.
She lives quite far but we text and email and call now and then.
After 24 hours of being off my medication id had one absence and one big seizure. I was getting a bit freaked out as the nurses ran in and put the cot sides up before i even knew i was going to have a seizure… i didn’t like this as it was weird them knowing before me!
Kara had made me up a parcel a day to take to hospital. I opened them each day and often found something to do in each parcel which was great and well needed as hospital was boring without not being able to walk any distance as i was hooked up.
I watched many disney movies and talked to the nurses and time did pass.
ashley had been discharged a few days previous to me as her seizures didn’t show up on screen so she would be having another type of treatment as hers wasnt down to epilepsy. I was stuck. When they got all the information they wanted i went home. Tired and relieved to be back on full medication i hoped the seizures would slow down a little now.
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.
We all settled into our new home quicker than i personally thought. I was good though.
I hadn’t realised how cold our old house was, it was a 150 year old timber framed building that had wooden floorboards and a 2 foot hole under and the house stood on plinths. we would get drafts coming from everywhere. Here we were now in a lovely brick build house and no drafts. I went from flannelette pjamers to strappy tops and thin bottoms overnight!
The seizures didn’t stop and the hospital appointments kept coming with medication changes at nearly every turn. My headaches were also getting worse and the hospital consultant was worried. I was sent for more tests.
I first had a MRI and CT scans, a EEG and blood tests. We waited the results anxiously. During this time i was admitted to hospital. It was 2 am and the pain from my headache was so bad i was screaming and pacing the floor. No medication that we tried made any difference. I was having atonic, tonic clonic seizures where i would just drop and seize every half hour and there was no other option left but hospital.
On the way to the hospital i had several more seizures and then when we got to the a and e department they were still happening, I was put on a drip full of anticonvulsants and given an oxygen mask. I was very tired and must have drifted off. I woke to find people around me as id had another seizure. An hour later i had stopped seizing and I managed to sleep properly. The next morning i was groggy and sick and the medication had made me feel like i was under water. Everyones voices sounded muffled and my ears were sizzling.
I went about a normal day on the ward and then mum took me home later the next evening.
This was not my first and it wouldn’t be my last hospital admission.
Life continued and we received the results of the scans and tests. I already knew my blood results were fine as while i was in hospital i had many blood tests.
We went in and the consultant explained that the mri scan showed that i had several leisions on my brain and they were mostly but not all in the left temporal lobe. This means scaring. It was probably caused by the brain not receiving enough oxygen at some point and the fact I’ve been having seizures for many years. The headaches make these areas inflamed which causes more seizures and the seizures inflame it causing headaches. There really was no winning situation here and it was a lot to take in.
we went home and decided we would wait for a week and then go and talk to him again.
When we arrived at our new house I walked onto the drive… I could hear yapping lots of yapping. I glanced over as I watched the back of a lady go into the house next door. A old lady and her corgies I surmised? (the area was majority of older people in retirement so it wasn’t a surprise)
I moved a few boxes and found the kettle things were put in rooms and the place started to look something like it belonged to us! I was not feeling well though and the seizures broke through.
During the next few days of sorting we met our neighbours that lived down the bottom of the garden. They were lovely and later that day we also met the neighbours to the left.
One afternoon mum called me out to the garden to meet our other neighbours.(the lady and her corgies neighbour) Or not !
The ladies that stood there and talking over the fence welcomed us to our new home. Kara was 5 years older than me and Perl was a few years older than mum but we all hit off straight away. We stood chatting for ages and they were both lovely.
I heard a dog yapping and it turned out to be a jack Russell come collie…. A large dog whom I’ve grown to have a love hate relationship with! Kara was lovely she was at home as well as she has a health condition. We found many similarities of what we liked to do and so became really good friends. She lived with her mum and dad, a cat and the dog and a menagerie of birds.
We arranged coffee and a chat and the girl and me became soul sisters and are to this very day.
A medical bracelet or pendant is a little metal disc, that encloses information and labels the wearer. If you look you will see i wear a pendant. I used to wear a bracelet but it got in the way alot and it was eassier for people to see, they used to stare and back away and so now i wear a pendant so i can hide it under my T-shirt if i feel the need. It’s not the “Allergic to Dihydrocodeine or Keppera and that causes the strange response, its the “epilepsey”.
When people see my label they usually say Oh you have somthing wrong with you dont you? And when they ask to see what it is all about and they see what it says they say “EWE you can swallow your toungue when you go off on one” or “you go crazy and stuff with that don’t you?” . I really don’t know how to respond, because im not like some mad girl with a psyco disorder, and i’ts impossible to swallow your toungue, it’s just when you have a fit there is a possibility of you biting it, and yes that has happened but its nothing crazy. Sometimes if its a bad fit it continues for ages and i get hurt as i fall and bite my toungue and so there can be blood and so i supose thats what scares people but its not contagious.
Once when i was away from my friends and family in a shopping centre and ended up in a major epileptic fit.The people around me didn’t know what was going on and understandably got scared. An ambulance was called and on arrival after regaining consciousness they told me i was having an epileptic fit. I told them that i know that as i’ve had epilepsy for years. After much confusion, they contacted my mum who explained what was going on. When i got home we decided it was time to get a medi-alert, in case that happened again while i was on the road again (que the song!!!).
I wear the pendant because it makes things easier in an emergency, not because i want to advertise that i’m different. It has helped me several times having the label, and it’s saved alot of confusion in times when i’m unable to explain myself. Unfortunatly there are still alot of people around who don’t understand Epilepsy and are scared of me when they find out. I just ask that i be treated the same as anyone else.
And if there is an inseance where i need help, don’t back away when you read my label.
This Blog is about my life and ride with Epilepsy. Through my own personal journey with epilepsy I want to help other people and let them know they are not alone. So many times i have felt alone…. even in a crowded room, vulnerable… never knowing when a seizure will strike.Ive been writing long before blogs were invented but it is only recently I discovered the impact that a web journal or “blog” can have on the areas i cover in my writing. Especially on subjects close to my heart that need help to be published and awareness raised. I entered the world of “internet and epilepsy awareness” about a year ago and discovered truly that I wasnt alone. There are other people out there thinking the same as me. Struggling like me. This writing has previosuley only been my personal Journal, however through gaining confidence from the people i’ve met online and with the urge to raise more and much needed awareness of the condition I want to make my words public. This includes the non-edited raw truth about my life.I thought one day i would edit it and make it all nice and fluffy as i call it… but why? life isn’t like that and my aim is to show the truth out there so here we are. I started blogging on another site a few years ago but left all entries private… since deciding to “go public” I decided to move to blogger as they seem to have more features which I like…. so here it goes. (please bear with me while i move my blog over as this may take some time) Through going public I hope I will be able to raise awareness but also raise money in the aid of research for more treatments of the condition. so far this year my total is £720. Please give me feedback on my words and donate to my just giving page if you are able.