Tag Archives: medication

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. 

Weekend & Confidence boosting.

Well last week I was on the verge of breaking down, this week I hope things are on the up. My weekend started Friday when I had an appointment with my Dr about my ECG and the probability of me going on the new pills… Well Due to the ECG and the “unlicensed” meds The answer was a No – However he will prescribe them if my London consultant says yes. I have an appointment with him on  22nd. Fingers crossed once again. 
For now Im stuck with the situation im in. Medication making me tired and sleepy if I take it – having seizures and being in pain if I dont. Its a conflicting situation. I have no choice with the seizure meds but I try and hold off on the pain killers as long as I can. The likes of Codeine, ibuprofen, Diclofenac and some other injection that I cant spell and morphine are not nice meds to take.

After the recent events Ive been really like a recluse an not wanted to go out much for fear of seizures as they have been quite bad… except the drs of course. 


However This weekend My weekend started friday. 

1) My Grandad is out of hospital. Its a long story but he went in for a knee replacement last year which went teribly wrong. His leg had to be straightened, a year later and the work they had done had broken and crumbled and so he needed another op to repair his crumbling bone. He is now out of hospital with a straightened leg and two rods and bolts through it and in plaster however it is fab to have him out as he normally ends up really poorly in hospital with infection…this time, so far so good all is ok. This also means mum and i do not have to live up there to be with nan. Not that I mind but it is one less hassle of taking all the necessary things up there. And they are both happier now they are back together. 

2) My Camera arrived. Ive been asked to do alot of blogs and vlogs recently and my video camera I previously had (the Flip HD) was not up to the job, plus its hard to video yourself when you cant see what your video’ing. Now I hate videoing myself, moving picture is fine but if I have to talk im not so happy however I do it for Epilepsy awareness so Im trying to get over my fear and improve my self confidence by doing this. Also I need it for the next piece of good news. 

3) Friday I got the news that I am reviewing things for this new company IWBYE which stands for “I will beat you epilepsy”. I am honoured in being the first person ever to receive one of their tshirts designed by them and I will be doing reviews of their products via this blog and my youtube channel (tiggerifficjem) please go take a look at my channel and subscribe. It is totally free to do so and you will get a email when I upload a new video. Also the more subscriptions I receive the more knowledge gets out there and the more I will be doing. 


You can visit them at this address

Click here for IWBYE

4) This weekend was Sci-Fi weekend. Saturday Lara came over and we chilled out, she visited me at studio Tigz  (my little craft and relaxation room) and we had a good time. I re sealed her dreadlocks and we done nail art In preparation of sci fi day. I may look into making some dreadlocks as apparently Lara thinks I would be able to do it and there are few people to get them from. So I will be looking into that when I get back off holidays. Ive got too much to do until I get back.

5) SCI-FI DAY: Yes today Is sunday. I am sitting on the sofa, in my pj’s totally exhausted. I have been here since 2 o’clock this afternoon! Today was the first time I’d been out properly since being poorly again. I wasn’t feeling my best when we left but I took meds and felt I could do it. With Lara by my side I always feel happier. She is one of my true best friends who Ive known for many years and It doesn’t matter where in the world/country we are we will always make time for each other  Anyway so Im exhausted but it was all worth it. Lara came over early and we got ready, Hair and last touches of make up – not that mine was anything spectacular but we both felt better – I wore the Superman (girl) tshirt that lara had brought me and we were off. We arrived at 11am and had a look round, From the outset we could see many characters and costumes and stalls and music and people – there were hundreds of people ! We handed over our tickets in exchange for a hand stamp

The Giant Ghost buster marsh mellow was hard to miss, There were lots of lovely people there including those that helped organise and set this extravaganza of sci- fi up. We walked around the first few stalls and then came to the Activity box stall. It was really good to see Abi and Barbs as I’d not seen them for so long. Lots of hugs all round and I felt happy to be out. My confidence was growing. I left my oxygen behind the stall as It is really heavy. We looked round a few more stalls until my legs couldnt carry me anymore so we went back to the activity box tent for a reset and chat. It was great to introduce lara to other people in my life. I like it when everyone knows everyone – I guess thats the country person (as my grandad would say) coming out in me. I went to another stall on the next look round that done face painting/temorary tattoos’ I chose a nemo design an had it on my cheek. I love the Finding Nemo film – especially the quote “just keep swimming” i really believe that if i just keep swimming in life I will get through this. 
 The day went on and we took lots of photos and video (i tried to do a scilent VLOG for my first one to get my confidence up so I will be sorting and editing that in the next few days and it  will be up on you tube. 
My head started to get worse and at 1:15 I called mum to come and get lara and I . Lara had to go home to Essex too so she had a long trip ahead. I came home and apart from editing a little video and photos I have been resting. I face timed with my other bestie Linda which was fun… I love facetime. We are both getting really excited now about me going up to visit soon. I cant wait. Lots ot do and fun to be had… Of course I will be bloggin! 
Nite Nite for now and Thank you to all those people who made today possible and to those who made me feel more “normal” 
XXX

Hospital again and drug trial

Well things didn’t get better after the last blog. I ended up in the large hospital about half an hour away, my head pounding and the seizures not stopping. I’m limited into what can happen how as most the drs don’t want to take me to theatre to administer the drugs I could do with fast. So I end up with lots of muscular injections, oxygen and oral meds. I thought this had worked and we managed to get home Monday morning. Unfortunately this wasn’t the end.
 I ended up with one of my own dr’s coming out a few hours later as the hospital drugs wore off and I ended up in the worst pain known (cluster headache has really set in). Having epilepsy is one thing but add that to this disease called cluster headaches which is defined in medicine as “the most painful condition known to man” and life is somewhat harder. So here I was more injections and drugs. My neck was really giving me alot of pain too as Id hurt it in a previous seizure a few years ago and it is a recurrent thing which normally gets better after a few days…. this time it hadnt. It just added to the pain :-(. 

For the next 24 hours I lay in bed sleeping, waking intermittently and more sleeping. I was trying to keep awake but it wasn’t happening my body once again taking over.  

I did eventually manage to wake up and be more alert but the drugs were making me sleepy. I had to get an appointment for the dr that week so 3 days later (when I felt strong enough to get to the surgery I tried to get an appointment. Well like most Dr’s surgeries in the UK despite being told by the dr to make this appointment the guard dogs (AKA – drs receptionists) wont let you book an appointment unless you are dying which at this point I thought I was with my neck. 
The next day I tried again…. I managed to get an appointment with a dr I’d never heard of. 
This is normally a waste of time for me as not many Dr’s are willing to change any medication or do anything without my epilepsy and cluster consultant’s and London consultant being notified first. This Dr however was different. He was lovely. He even had a skill very far and few between Dr’s ……. he listened. 

After a chat and examination it looks like ive damaged my neck as Ive had years of seizures.The epilepsy medication damages the bones, nails, teeth and all things like that so with the combination of medication since i was 4 years old and the recurrent seizures slinging my neck in awkward positions it is not surprising. I received some pills for my neck and then he asked me many questions.. We now have some different injections for home as well and medication to help the seizures when Im going through a bad spell. I already had some but these ones are apparently stronger and the ones I normally have whist in hospital so should mean another step away from hospital. Great!. 

About a year ago now I was told that there was a new drug to help the pain I get from my head and seizures and cluster headache however it was strong and acts upon the heart. I was told to get a ECG heart trace which I did. This was given to my consultant and I was then told I couldn’t go on the new drug. I was not given much of an explanation to my satisfaction apart from it was not right. Therefore I asked this new GP what was wrong with my ECG. Apparently he couldn’t even find it so I am due for another trace on Tuesday. Fingers crossed I will get a better reading and be able to trial this drug and maybe get relief. 

In the mean time I am also staying at my nans during the day at weekends with my mum as my grandad went into have his leg straightened again on Monday. The week has been hard but Ive managed one hospital visit and im at nans as I type. I am so sleepy on the new drugs and feel like im under water. Everything I do is an effort but I am forcing myself to get back to normal. 

Yesterday (Saturday) I installed Laras Dreadlocks ! I had never installed dreadlocks in my life before but with the help of youtube (god I love youtube) I managed it… 
Im really pleased with the result and I think Tink is too.


Today Ive rested and Im on the strong meds again as my neck is pretty painful. It doesn’t seem to matter what I do or what position I am in it makes no difference so its just medication and grin and bare it. The seizures are still unpredictable as usual and I need to get my confidence back fast. 
A spell like this always makes me think about doing anything or going anywhere cos what if I had a seizure…. but if you live life like that you may as well not live at all. Grab the bull with both horns and have faith no fear. 


Tomorrow is monday and I so want to go to band practice. I am going to see how I go and maybe even if I sit out for a bit I will at least get to play something. 
I love my music and could really do with chilling out at band and not thinking about much while I play. I miss everybody too. Strange really as you rarely get to talk to many people while there but Its nice to be with people who I do class as really good friends. 


Kent Coastal Concert Band is an amazing band.


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.




Double consultant

Well the last couple of months have been full of ups and downs.
The ups being good days and playing music, meeting friends and the bad being hospital visits, consultant meetings, results and I still cant see out my left eye !

A few weeks ago now I met with my consultant, and another consultant from a high up place in the care of epilepsy in the whole of kent who was lovely but this meeting totally confused me as It was a surprise not to be just my normal consultant. I always have questions to ask my consultant but it all went out the window when I went in and the other man was there, therefore I didnt get chance to say hardly any of what I wanted to ask. In fact I left with more questions.

The man was there to talk about my situation and the posibility of doing something more invasive like surgery. This has been spoken about in the past and I was told a few months previous it looks like it may be possible…. it turns now that this isnt a option yet as my seizures dont just originate from my temporal lobe like they have done all my life but now have also spread to the occipital (explaining the loss of vision from my left eye). This for me was a complete kick in the stomach yet good news as well as at least I knew why my eye had been on and off and now pretty much off for the duration of time. 

I liked the extra consultant yet It was a really difficult meeting being told that the end of the line as to what they can do is very near. If surgery isnt a option and the drugs are not working then at the moment we are at a standstill. However there are a couple of other options being looked into as I type so for now all is not lost… its close but we’re not there yet. 

The other issue we spoke about in the meeting was my cluster headaches. It makes things more difficult that I have these as well as medication reacts and all sorts of things which I dont really understand myself yet they just said its a little more complicated and they tread carefully. Anyway there was this drug I was told I could try a few months ago. I had to have a ECG though to check my heart as it reacts with the heart. I had the ECG done and I wanted to now start the drug so I brought the subject up. This too was not a option as the ECG came back with a problem…. yet they didnt say what, and that was one of the questions I forgot to ask as they went into a different subject before I could really finnish what I was about to say. 

I left the appointment a bit grumpy and down. It was hard being told the end of the road is neigh, but i had a few answers and I knew not to panic about my eye too much and I knew they were now working hard to find me some answers and help. 

Still, got to keep going, have faith and “just keep swimming, Just keep swimming” ! 

Now to wait for the reply and answers. 

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!



WRITTEN ON FATHERS DAY 2012


Today is fathers day 2012 . A day for celebrating dads everywhere. 


Yesterday Mum and I had gone to view our picture on a photo mosaic of the queen at the turner contemporary art gallery, this was part of the queens diamond jubilee. Months before i’d sent in pictures of us all and written stories to go with them (the story had to be about why the picture was special to you) for one of the pictures I sent in a picture of mum and i on the race for life, this is a cause close to our heart as my nan has survived breast cancer twice. The last one she had was the most severe yet it was caught early and thanks to cancer research she is alive to this day. Anyway we went to see it in the flesh and it looks great. We are on the old queen on the crown… very apt i think!


It was the first time i’d been out properly after going into hospital. It was the furthest too. We packed the oxygen and I took it slow, i still feel very delicate and Im almost scared of my own shadow…. this bout has really knocked me. Anyway I got round and then on our way back we stopped of in our town. Mum wanted some things from busy bees and I needed to pick up dads pressie from the craft box. I was so so excited to see it but also worried as i wasn’t sure how it was going to turn out…not only had i done it in 4 sessions but id tried a new technique called etching. I needn’t have worried, The plaque was fab and I was so so excited to see dads face. The plaque was double sided and id put a bus stop on one side and his regiment and details on the other. This was a fab pressie and i was excited already. At home I put the ribbon on and a few beads so i could be hung up. I wrapped the plaque and decorated the bag and wrote the card. Everything was ready.




Dad was working all day tomorrow and was going really early in the morning. As a family in these situations we have always done the occasion the night before so mum said to go get it and we all sat down. Dad was playing on the computer, like he does a lot… i think the solitaire game must have a hypnotic effect cos he can play it for hours without blinking! when he came and sat down he had a spat with mum about having whisky in (which we didn’t) its my fult because i was too tired to go round the supermarket and be able to pick up his pressie so we were planning on doing the shopping tomorrow. Anyway he made some rude comments as is usual for him and said he thought we would have been nice! (charming) anyway pressie was pointed out and happy fathers day exchanged and he had the look of thunder on his face. Oh boy!
he took the bag and opened it… didnt really seem interested but smilied and then put it down. 
well not the result i was hoping for. My heart sank to the floor and I went back to the front room. I put the plaque on the dining room table and sat down. I felt dreadful anyway why didnt he say anything? didn’t he like it? i knew the answer to my thoughts and questions. but it didn’t help as i already felt depressed without him adding more reasons why I should end up on antidepressants.

Anti-depressents were not a route i wanted to go down. Im not totally against them but I take enough medication already and I’m not even sure how they would react with my epilepsy drugs and I’ve enough problems with that already. I like to try my approach… the disney sparklie smile on the outside even if it hurts approach first. I look back on the years and remember my dark days…. i survived them surely i can survive now. Only time will tell i guess but at the moment I feel depressed. I went to bed and thats where I stayed till this morning.

I woke this morning with crust eyes where i fell asleep crying last night. It wasn’t the first time i cried myself to sleep because of family but I wish it didn’t get to me so much. I say I don’t care but the truth is no matter how much he hurts me i will still try and be nice…. what really gets me is when he gets to mum, that i really can’t stand. Last night mum was upset and that made me more upset.

Hey today is another day so maybe things are different.
Mum had put the plaque on the wall and dad was at work. I needed to go visit our friend today, at least i can talk to him. What we really needed to do is  go shopping, If not for anything else but to avoid another evening like last night.
We went to asda. On the way I was on the iPad looking at emails and checking Facebook. our friend had made meringues and asked us round for a coffee! bonus i thought we were popping up anyway :-)
We finished the asda shopping and went round. We stayed for about an hour and it was nice to give bill his card and pressie and actually see a smile. At least he appreciated it.
We then popped round nan and granddads as it was mums turn to play postman. she had brought grandad some ginger wine and chocolate… he favourites. she also got a smile.
It ended up a good day  but the roller coaster isn’t on a high by any means

I look at other people with their fathers and I do feel a bit jealous sometimes. someone to go and talk to … I wonder what its like to be a daddys girl? I will never know. 

Intensive care

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 !



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.

The Beast take 2

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.