Tag Archives: hospital

Embarrassment is never far away!

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After the blip i had started living again.
I went to the craft box more and I went out with matt more, I was more confident and was going out with some other friends too.  I started planning things further away and life was good. I was still having the seizures but they were less severe and I was at about 2 a week and I knew to avoid my period time. I started brushing up on my nursing skills by redoing my online training and had passed them all. I was getting ready to go back and I was treating every day as a bit of a holiday. I still went through bad weeks where my cluster headaches would be bad and i would need the oxygen but i thought that iId still be able to go back to work even with that. 
To bring myself into the real world again I started taking my little cousin milly out for day trips. Things were good i was living, making plans yet this time still being reserved.

June 16th 2012

Things were good !  the last 2 mondays I’ve been going to a art class at the craft box as well and I’m still taking Milly out on the occasional weekend.
The last week i have been painting a plaque for dads fathers day pressie. Ive designed it with both his loves in mind. On one side I’ve got his regiment details and badge and on the other his own personal bus stop. On and off I’ve been going in and doing a little.
Last Thursday I was in the activity box with Kara (she was doing a similar thing for her dad but a gardening design).
Over the few days leading up to last thursday I had been feeling a little under the weather I had noticed my headaches were stronger and I had been having a lot of absence seizures. I hadn’t told mum how bad i was feeling as she had been unwell the last few months and I was done with worrying her about me. She done that way too much. Things were on the up so I thought I could cope.

Thursday was going to be our finishing off day. We went in at 10am and painted away and chatting about the usual rubbish we chit chat about. My head was getting worse so i took a couple of my stronger pills and then kara and I took a break to go and get a cake from the nearby cake shop. We came back and had a cuppa to go with it and continued to paint. Half an hour in and i felt strange, My head was bad and i was getting hot I went outside to get some air and as i went down the steps i knew something wasn’t right. I got to the door and it all went blank. I woke up laying on gravel feeling very cold. The lady who owned the craft box (luckily a ex nurse so wasn’t to badly freaked) was holding me telling me where i was. I felt awful and so so embarrassed. Why, How not again were my thoughts. I knew i wasn’t free from the beast but i felt I had gained a little control and here i was being proved wrong. (life with epilepsy is always unpredictable)

The next few hours are really blurry as from what I’ve been told i was in and out of seizures a lot.
I remember getting up and going back into the warm as sitting on a stool. My trousers were covered in mud as was my feet and hands. tory (the lady at the activity box) washed my trouser leg with a cloth and I was holding onto a roll of bubble wrap. I felt really ill and the sensations i were getting were odd as I didn’t normally feel them this strong once the seizure had passed.
The next thing I knew I was on the floor again. this was seizure 2. this apparently continued. I can’t remember what was happening yet i know people were there I could hear Tory’s voice and then mums. I could tell the difference between Tory’s hand and mums as Tory’s was smooth with short nails and mum had boney hands with long nails. Voices were distand and under water. i felt so so cold. I cuddled in a blanket and can remember mum passing me the oxygen. I was trying so hard to stay awake yet i was so tired. I wanted to go home and so tried to get up and get up the stairs. This failed as every time i got up I had a seizure. I can’t remember this part but this is what I’m told.
The next 2 hours are blank as I got taken to hospital and woke up in the resuscitation room with a needle in my arm wires on my body and a drip hung in position. There was a nurse and doctor  asking me what happened… fit? i said groggily?  the drugs kicked in pretty quick and it turned out i had a kidney infection which probably caused the flare up, it didn’t make me feel any better though i couldn’t believe id had a fit while out, this hadnt happened in a couple of months (ok i rarely went out too much nut hey) . i was so so embarrassed.
My head was pounding but the oxygen helped a little.
I was desperate to get home and our friend was there as huge support to mum. Persuasion meant they did let me home later that evening with a large dose of antibiotics and instructions. I was so relieved. I got straight in bed and cuddled in my blanket with magick and the oxygen. It seemed that too long of the oxygen and i would start feeling really rubbish again.

                                  


Pills, craft and disney

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I came home from London with relief and sorrow.
I had the ok for oxygen, but i also had more pills to take. I was now on a total of 19 a day. If they help i don’t care i said.
A few weeks on and a little improvement was seen on the seizures. I had to up the dose of the medication and they meant 22 pills a day but who cares little improvement is better than none.
I was still getting a few absence seizures but i didn’t even bother to say about those any more.
When i was on my menstral cycle the generalised would be worse. The oxygen however meant that my headaches were able to be controlled a little. Sometimes the oxygen got rid of the headache totally. Was i about to get back to work and have a life?
Although i knew deep down a normal life was still far ahead i was getting braver. I went out down the street and posted letters by myself. I went in shops on my own knowing mum was just in the nearby area. I  done craft fairs in public, went shopping and as long as someone was about life was good.
The medication wasn’t perfect as i did have breakthroughs but i went from 5-10 seizures a week to 2-3 big seizures a week. Thats a big improvement.
The oxygen also meant that recovery was quicker. Mum use to grab the mask and give me oxygen when i had a seizure and we found this helped this too. We both started to relax.


February 11th 2012.
After a lovely but difficult christmas came the new year. My friend Matt had become my boyfriend on New years eve and I couldn’t have been happier. I was going out and really living life. He knew me from school (total of 16 years) and he had grown up with my seizures so all was good.
Over the christmas period i had a few blips and had to spend a couple of days in bed as i was too bad after the seizures but i bounced back. Febuary was different though.
Matt and I were dating and our first valentines day was planned to be great. However 11th february 2012 i was taken into hospital. The seizures wouldn’t stop and  again hospital was the only option. I went through the same process as always, anticonvulsants in a drip over night and a couple of days in hospital. i got out of hospital on the morning of 14th february (valentines day) this wasn’t going to be the day we planned as i was too weak but Matt came over nevertheless and we had a lovely evening watching a film. I was happy.
I was a bit disheartened by this blip as i thought we’d cracked it as the seizures had reduced  little and i thought i’d just up the medication and that would be it, but I didn’t give up.


As soon as i was well enough matt and I were off doing things and Kara and i started crafting again. I Started to craft more seriously and sell a few bits too.
Id stopped going to WI as it was getting the same and mum wasn’t fussed so we chose to spend the joining fee on some show tickets throughout the year instead.
Kara and i were still best buds and soul sisters and she introduced me to a amazing craft place. the craft box . You paint pottery then the lady puts it in the kiln and it comes out shiny and looking amazing. We went there often and i started to go there  solo too as Kara could not always do it as she had so many other commitments to clubs and social groups such as drama and craft.

We didn’t always craft. we went to the cinema and shopping and other places too. We even went to the o2 arena and watched disney on ice. It was great Kara was becoming as mad on disney as i was. I felt sorry for her mum as she had the job of taking us but she seemed to love it too. it was a really good day. 


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.

Telemetry

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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.

Wires!


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. 

New life but same hospital

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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.

Splitting & Moving

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I was discharged home to my home with mum. Gavin was having to work so being in an hour and a half away on my own was not a good idea till i got on my feet. Although Gav was good in the hospital when i got home things changed. He became grumpy and wanted me to do things and go places and I knew I didn’t have the energy for . I still couldn’t see and i was scared. How would i be a nurse if i couldn’t see? 

Mum had phoned the university and had my course suspended until i could return they said it wasn’t a problem and all would be ok. This put my mind at rest. 
It took a couple of months before my sight returned, It was still blurry and i i get re-occurent blindness after a big seizure. but i got stronger and stronger. I was able to walk and finally i could see too. 

I went back to life with Gavin yet things were not the same. I was not prepared to do the things that would push me as i was scared of ending back in hospital. Where as once we would travel for hours i was now scared to go more than an hour away from places i knew. 
The relationship ended and we went our separate ways. 
I returned home to mum who was more than happy to have her little girl back. She was far from happy with me moving out in the first place and to have me back at home also meant she had backup with my dad. 

Dad is a whole new story, We have had a off relationship for as long as i can remember. The first memories i have of dad are of me being shut in a dark room with him holding the door closed. The memories that followed were not good ones either. I dont dwell on dad too much. i can’t change him, and i don’t think anyone could. Life is a fight without trying to win one i know won’t happen. We live our separate lives and thats how things work. 
So anyway mum was glad to have me home. 


On 28th August we were due to move. I wasnt going to be moving with mum and dad but overall I’m glad I did. Since moving I met new people, friends and had good times I would never have done if I hadnt moved.
Moving day was difficult for me despite this. Not knowing that good things would come of it I was moving to somewhere I knew little about and didn’t want to be.
I had made friends where I was, I’d grown up partly where I was and I felt comfortable. My house was lovely and I like it I was not keen on changing to somewhere else that was not homely yet. I’d moved from home to be with gavin and now I was packing boxes ready to go again.
Now I’m a Kind of person that would think nothing of going backpacking if my health was different so at the same time moving and packing boxes was an adventure that I also used to de-clutter and clear out. I threw out loads though my Disney collection stayed.
Moving day was difficult. I was not feeling great and I had already had a seizure that morning. Yet as I la on the last remaining piece of furniture I watched the removal men carry out our belongings and bundle them into a white lorry. I moved and the last piece went. As I sat on the floor looking around I was engulfed by sadness, I was overwhelmed as I remembered the happy times I’d spent in this house,

                 
Old House
New House


Intensive care

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I can remember opening my eyes and being wheeled into a big space. This was the hospitals A&E. My seances were all distorted, i could hear but it felt like everyone was distant and muffled. i could barely see and i felt awful. i drifted in and out of consciousness, i didn’t even realise i was fitting. 
I could feel needles being pushed into my veins and i felt like a couldn’t move… yet i was fitting. I can remember seeing mum come up to my head she then faded away as i felt a pressure of something being pushed into my hand and a cold rush up my arm. 
I woke 3 days later in Intensive care. I had no idea where i was or what was happening. Gavin was sitting by the bed and i could hear mums voice. I tried to speak but i couldn’t my throat felt stiff and i tried to move my hand. This was also covered in tubes and wires. My eyes looked up and i saw drip blurry bags hanging and tubes coming from machines i then drifted.  All these machines i now know to be the machines that they were keeping me alive and sedated with. 
I woke up properly 2 days later. I saw dr’s nurses and mum. I was scared and the first thing i can remember saying was about work. I was so scared i was missing work as this was the start of the rest of my life. My career. Id worked 3 years for this… i was embarking on my first work palce and… what was going to happen , what would they say if i didnt turn up?
Mum put my mind at rest and slowly i was told what had happened. The reason i was in itu was because the seizures wouldn’t stop and i stopped breathing in the middle of a major seizure. The drugs i was being given also suppressed breathing and the only way to keep me breathing was to resuscitate and intubate (put me on a machine) until the body rested enough to breath alone.

I spent another 3 days on Intensive care. I was awake yet the drugs were so strong my memories are blurry and i remember very little of what happened. I was still having seizures yet they were not as violent. The drugs relaxed the muscles and the nerves to them meaning when i had a seizure it was happening in my brain and eyes and only the very small muscles would twitch. This was tryngt to help my body rest… my brain still had other ideas. The seizures had taken a toll on my body and I was still weak. The most scary moment was when i realised that i couldn’t see. Close up everything was blurry, it had been for the days i remember yet here i was laying in a hospital gown looking around and i could see nothing. It was all a blue white haze. My heart sank and i burst into tears. With physio i started to move my muscles again yet i didn’t have the strength to walk more than 5 steps .

I was transferred to a ward where i spent a week or so working on it and was then allowed home. I had enough medication to sink the Q.E 2 !



The Beast take 2

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At the hospital surprise hit me…. It was dr teri ! ! !!
does nothing change in these places i thought! i was happy to see a familiar face though as i felt silly, scared and like my world had come crashing down, and i was back to stage 1.
Dr terri looked at the report the school nurse had put in and listened to what mum said and asked about my feelings…. He decided that it would be best to send me to a specialist (more so that him) the carbamazepine were not working very well and it had all come on quite quick. On the way out i had to go for another EEG, ECG, MRI scan and blood tests. God how i hated blood tests. 
i was referred to Dr Mick at a specialist centre. This centre was a weird place, like a old victorian house with a long thin stair case leading unto a landing and a couple of rooms then another staircase leading up to where we needed to go. i booked in and sat down with mum in the waiting area. The centre was used for ill and disadvantage kids on certain days and the room was filled with toys…. i remember thinking how stupid it is to have a building like this for disabled children when they had to climb 2 lots of stairs and squeeze down corridors…. not a place easy for a wheelchair and no lift! the place has been re-located now but at the time it must have been a logistical nightmare for staff and parents!
Dr Mike was lovely. He was a very large man who looked quite scary but his manor was impeccable. he went through the results of the EEG, and MRI and blood work with mum and I.
The blood tests showed that the level of drug in my blood was not very high so thats probably why it wasn’t having much effect. The MRI showed some darkening over the left side of my brain which added up with the EEG results which showed most spikes over the same area and then a few in the rest of the brain. He concluded i had absence seizures (id been daydreaming a lot but the nurse had reported a couple of spells of this (that i was totally unaware of) in the day after the seizure at school. and also complex partial of the left temporal lobe with secondary generalisation.
This meant nothing to us at that point but i got on the computer and with a few leaflets that dr mike gave us i done my research with mum. We were both pretty horrified as i two types of seizures but tried to stay positive as we’d got settled on medication before so surly we could do it again.

My Label

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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.


Funny feelings

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Age 14 and in the end of year 9 i started to get some strange feelings. I put them down to growing up and womanly changes. (we had all had the talk). Somehow i thought these feelings felt familiar yet i wasn’t sure how so put them to the back of my mind and continued enjoying school, karate, and dancing.
We often had presentations and talks in school assembly sometimes science, or music or drama. any type you could waste 15 minutes of assembly with.
I had been paying more attention to music class in the last 2 years. Last year with a lot of help from my class music teacher I had persuaded mum to buy me a clarinet. I loved this clarinet it was old, second hand and all the writing has rubbed off but i loved it and played for hours. I’d even met a boy in the school library who took me to a band practice.
I couldn’t afford proper music lessons so i sat in front the mirror with my book. I then went to the band practice and sat next to the first persition and watched his fingers and the dots on the page and followed. When he stopped i took note of what the marking was and when he went quicker or slower the same thing. This is how i learnt, It worked.
This assembly myself and a few other students were playing a tune for assembly. I had these funny feeling but put them down to nerves as despite all the academic side i hated being centre of attention or on stage. I hated speaking in public or in groups and was pretty much a solo behind the scenes type a gal and thats how i liked it….. the clarinet changed part of that and i came out from behind the curtain.
We played beautifully and took our bow and then i followed the other students off the stage.

As i got near the steps i felt ill. I couldn’t describe the feeling but i didn’t feel good. I took a step down the stage steps to join my tutor group in the ranks and it all went blank.
Im a teenager… this can’t happen to me I’m invincible (well ok not quite but we all think we are at that age!)


As a kid i had many embarrassing times…. everyone does. However as i woke blurry eyes with my head of year and tutor next to me, hearing the rest of the school file out of the hall i was mortified. I’d fainted…. or so i thought. the school nurse was also there and she took me back to the office.
she asked me questions and asked me about my epilepsy history. When my mum arrived she was told that they think i had a seizure. The roller coaster took a loop the loop and headed into oblivion!
I was taken home and i rested…. i was tired. The next day i awoke on the floor.
What, how, hu ! were the questions running through my brain at lightning speed.  what is happening to me.
3 days later Mum took me to the drs as id had 3 more episodes and from what mum remembered of my childhood they were fits.
the dr put my straight back onto carbamazepine, the school was informed and i had an appointment at the hospital.

In two days my life had gone from exciting, fun filled and independent to crazy, end of world (in teenage eyes), embarrassing and not wanting to go to school which I loved and normally craved. I was back on the roller coaster of epilepsy.


At school