Tag Archives: headaches

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. 

Nothingness and everything.


This is a hard blog but it had to be done. If you feel like this know you are not alone… I am there too. 
Xxx



“I don’t want to see anyone. I lie in the bedroom with the curtains drawn and nothingness washing over me like a sluggish wave. Whatever is happening to me is my own fault. have done something wrong, something so huge,  I can’t even see it, something that’s drowning me. I am inadequate and stupid, without worth. I might as well be dead.” 

― Margaret Atwood, Cat’s Eye




This pretty much sums it up at the moment. In the last week I have been through so many emotions. Happiness at living life and enjoying things on Monday to totally down and in trouble for the rest of the week. Yesterday I felt I was on the up again and today Im even further down than I’ve been all week. This time i feel I’m not mentally strong enough I’m loosing control of myself, my body, my worth I’m sitting here feeling like my heart and soul for life is not strong enough to battle this beast. I’ve felt this way before… Many years ago. I promised myself I wouldn’t go there again but it may be a promise I can’t keep. Even my promises to myself are empty. 


It’s harder because I thought I was crawling out of this ditch yesterday…. It was a “good as can be day”. I was happy… I went out in the car and it was lovely. Exhausting but lovely.
Today I am in the depts of depression because the beast is starting to leave its marks on me. Never did I think my seizures would impact on me like this… Ive been tough, strong, a tigger that always bounces back…. not at the moment. The beast is making marks.Maybe not so people can see when I put my mask of happiness on but to me the marks are like hard heavy dirty footprints in soft mud. 

* Medication has weakened my teeth and bones.
* Seizures have damaged muscles and ligaments.
* Headaches from seizures and the amount of seizures mean I’m taking more and more medication. 
* Seizures cause bruising, scrapes, cuts and scars. 
* Bad seizures that make my jaw tense and clench hard have broken teeth. 


Im loosing more and more confidence of my own body every day…. Wondering when and where it will let me down next. Always looking for somewhere to run and hide if I need to. The world being split in two… one that is the lovely world where I am normal and my mask protects me from everything and then the real world… where my mask is just a face I put on and sometimes this will fail like today.

I see mum struggle with things. She has her own problems with things but she struggles with me and the beast too. It’s impacting on her which I hate to see. It’s not fair on her. Would it be better if I want here? It’s got it’s grip into me, the beast of epilepsy will not let go at the moment. I want  to live life not be stuck in limbo where I feel at the mo. Mum struggles with grumpy being just that.. grumpy. Just last night there were problems – not to be discussed here but just that he acts as he does and makes life difficult for others. 

I am made to feel that this is something I have done wrong, something that I am making happen. Its not –  I know but sometimes it feels like I’m brainwashed by the end of the day to believe that the beast is here for a reason, I have done something bad and I am being punished with having epilepsy. I get minutes where I think Its not my fault but then he will say something and Its my fault again, and I believe it.
 I am “ruining the family” (his words not mine). I have “split the family – made his life bad and he doesnt have a life” ? 

Well I know in reality that this is not true.. He definitely has a better life than I do… at least grumpy has had 67 years of good health, friends, travel, two marriages – three children. Not that he has made right decisions or valued any of the above but he has had the chance to do this. 

I am 26  – had two serious partners one ended quite abusive and was apparently my fault again because of epilepsy and the other just couldn’t cope with me not being able to do things all the time because Id had a seizure that morning and couldn’t walk round the city that afternoon. I probably will never have children due to the pure amount of medication Ive been on since age 4. One Dr even sat me down and severely told me not to get pregnant. 
As for travel and just life well I had plans, they got eaten by epilepsy. Career? I had one…. That got eaten too. Friends? well I have some awesome friends but many have left because Im probably not the friend that they want – I cant go nightclubbing, drinking till pissed and all that stuff…. In fact Ive not been in a nightclub. 

So as for not having a life… maybe he should think again because from where I am right now I would love that life. Not only has he had one but he is now waited on hand and foot by a wife who despite all the shit she gets from him with nothing in return – not even just a civil conversation or thank you. 

Im not going crazy but I do feel depressed. Depression hurts, Its a pain deep inside the body, heart and stomach. It affects everything – I will stay strong. 


So here I am writing this depressing blog which no-one probably reads but at least if you are someone searching the web feeling like I do or have in the past… you may stumble upon me and this blog and realise you are NOT alone. This may be a depressing blog but life is not all smiles and sunshine. There are clouds too. Im in the dark black clouds trying to fight my way out. Hopefully I will. I am getting dragged to a place I don’t want to go again. 

Remember I love you all and appreciate everything.




Christmas & New Year

Christmas and new year is always a time I love and dread at the same time. Its very often full of arguments and walking on eggshells with my dad. However I do love the run up to christmas this year was going to be even more special as i was back at band and we had gigs which are always good but the christmas one is amazing. its the best concert of the year and this year I was going to be part of it!. 

The gig went really well as I always does, Kara and family came, mum came and brought my uncle and my cousins came I really enjoyed having my special people there supporting me. It was great. 







You can find videos of the band at  www.youtube.com/tiggerifficjem 


The gig ended and I felt sad… not only cos of that but because christmas was nearly over for me… I love the run up to christmas, not necessarily the actual day. Christmas afternoon is great as I spend it with my nan with my family but the day up to then is tough. 

This year was ok Well not too bad, Dad drank and he got moody but we survived.  Unfortunately half way through the morning I had a seizure. Epilepsy does not even let me rest on Christmas day ! mum was worried as we had to go to nans and have the traditional dinner. I wasn’t really very bothered with dinner but i managed it after a sleep. Another little rest and a read of my book that i got for Christmas and I was ready for nans. This also went well. This is the tradition I love, Going round nans and grandads and opening parcels, playing with crackers and the traditional who can get the streamers from the poppers over the living room light game. I love both my grandparents to bits. They are 89 and 90 years old so every moment is precious. 


Nanny and grandad Christmas 2012



NEW YEAR and new start? or not. 


New year we were invited over to Kara’s. Well it was the 2nd of January as our new year but to us it was new year. All day I had been feeling grotty, my head was hurting so bad, I stayed calm all day and kept taking the pills as I was allowed and prescribed. I still felt awful. 

The evening came and I selected my clothes, sat on the edge of the bed and knew that If I went out it would be a mistake. I said to mum how bad I felt but she said it was too late… we cant let Kara down this late notice. So I got my clothes on, downed some more medication and kept my fingers crossed. 

Our new years wasn’t the type that your probably thinking… we played monopoly ! The food was lovely although I only had a little and the games and company were good but as the night went on I felt even worse. We left. 
I braced myself as I walked home, and as soon as I got there I grabbed my Injection and pressed it into my upper thigh. This was a full blown cluster and I was about to go into a seizure too…. I was very poorly. The cluster headache died down after about a hour however the seizures didn’t. There isn’t much research into cluster headaches and epilepsy as cluster headaches are quite rare however one of the consultants I have seen told me that a cluster headache inflames the brain and the inflammation causes the seizures. 
I blanked out with the seizures again. That night I ended up in hospital again. So much for a new year and new start. No matter how much you want the seizures to go away they wont. 
I came home and once again ended up with a few days in bed and My eye was black. I was weak but I recovered and The year began again for me just a little late!



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!

Embarrassment is never far away!


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


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. 


For the love of a country!

I had been given another medication the name of which i couldn’t remember but i now had that and the carbamazepine to take morning and night.
The last year (since becoming a woman properly!) id been getting headaches… these were headaches like no other and were excruciating. Id bang my head against the pillow crying as the pain was so bad. Mum couldn’t understand why I didn’t lay down and still but the pain was so so bad i couldn’t i felt i had to move. Nothing helped the pain. I was given paracetamol, Ibuprofen and then another painkiller from the dr. This helped a little but no were near enough so i could function. I was then given a stronger medication. I was at he end of a period and I had my headache come on…. i took the tablets and it went enough so i could function but the pain was still bad.
I still went to school but id changed. Again my schoolwork sufered. It was heartbreaking and i felt like a ticking time bomb with my seizures as they were still unpredictable. Despite this i got made  prefect and completed my life long dream of going to disneyland paris that year.
It was only a day trip but it was enough for me. My cousins took me out a lot so i thought nothing of a sleep over at theirs. At 6am i was woken up and we got into the car and they drove. I will never forget when we got to the channel tunnel and my cousin turned to me and asked where we were going? i said France? yes where to? i don’t know…….. long pause.
DISNEYLAND ! ! !!
Oh my word i have never been so happy!
the day was perfect. I was exhausted but i came back with a dream to live in france not only had i been disney’d but i had fallen in love with a country.
********
Id always liked french and id been out with the school before but in a month time I was due to go to a exhibition to represent the school in a capital of european culture as part of a uk and european pledge to become the next capital of european culture! it was a great weekend but the seizures took their toll. The french teacher was great and we had become quite close before hand as id often go and watch french tv in her class room if i felt too tired to stand in the playground for luch break. Most of my french was learnt this way so thank you to the french tv channels !
finally the medication started to work a little and i had  a few months grace. Only to be hit again.
A pattern started to emerge with my headaches and period and it all got too much at one point when i was rushed to hospital after non stop seizures.
I was in for 3 days while i was pumped full of drugs and then sent back into the open world again.