Tag Archives: pills

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.




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.