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More Stress

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Today is monday. I find out that when mum was shouting about how ill she had been sitting worrying about me yesterday whilst I was at the concert she was actually out visiting a friend and shopping!

Not much I can say about that is it…. however all that guilt i was feeling and being upset was for nothing!. Im pretty cross that she obviously lied – If there is something I do not do is lie to her… I cant lie i always end up laughing infront the person anyway or giving the game away but to lie to me about that so I would feel guilty about going out? thats not right. 
Well We agreed a truths yesterday so Im not going to say anything – inside though im saddened. 
The arguments are starting up about band tonight now… if its not one thing its another. I went to go down to my studio but then got told no… when questioned i got the well i will have to come down there ! this was not the idea… I have a buzzer system for down there so why is that suddenly not useful? basically I cant do anything unless she is watching – i am going mad.

Anyway I went to band and despite a struggle I managed it.
I will say im suffering for it a bit today but I have also been to the dentist today to have my “real” tooth put in rather than the temporary ! (remember a few blogs before my holiday when I smashed tooth during seizure). anyway nice new shinny tooth now in. it was a bit of a trauma though so no surprising my head aches.

I will leave you with this poem. 

A friend like me. 


Please don’t be afraid of me 
I want to be your friend.
and if you get to know me
your rigid thoughts might bend
Thoughts that i am different
from others that you know.
I really am no different 
and this id like to show. 
I live and breathe and laugh and cry 
i love to play and learn .
I sometimes do things differently 
which can cause some concern.
You see, some say I’m special, 
i guess this much is true
but if you were to ask me 
i’d say your special too.
We’re all  little different
no two are just the same. 
Its really something wonderful 
there is no one to blame
When things don’t go perfectly 
and people get confused
they say things like “poor girl”
and other terms they use. 
Its ok if you look at me
and may not understand.
Its ok if you touch me
and even hold my hand
My like has many obsticals
More than the epilepsy that you know
but thats not what i dwell on
Im me, thats all and so….
I know that things may not
always go to plan you see
Sometimes i may fall down 
but I’m not just the beast you see
Please don’t be afraid of me
or tell me not to do 
the things that make me feel normal
and make life worth living so…
Please learn to be accepting
i want you just to see
how truly great and wonderful 
a friend like me can be.

Hospital again.

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Saturday morning I woke up and the pain was yet again intense. I went straight into multiple seizures.
Drs say that Status epilepticus is the most dangerous state for epilepsy sufferes. It takes so many lives. A person with epilepsy may experiance this once or twice in their lifetime with the disease… So far Ive been in status over 20 times and now 3 times in 3 days. life is getting scary.

I ended up having the paramedic and ambulance out and remember waking up with a IV line in which is very unusual as people normally cant get a line in. I was in and out of seizures for over an hour and I woke up in Kent and Canterbury hospital. It felt safer to be at home hospital though. somehow I cant explain. When the seizures stopped I was taken to a ward and had to wait to make sure the meds were working. I was given lots of extra meds and then claire and her dad came to get us to bring us home.
I was supoesto do a gig that morning but obviousley had to cancel. However it was the ball tonight and I was not going to not go. I had determined face on! My friends were down and I had the dress, the tickets and the will power I was going to go.

My best friend Lara came round early and helped me get ready, she managed to turn my palor complection into a 1900’s lady! without her doing my hair and makeup i really dont think i would have got there it was exhausting and i wasnt doing anything.  We were all ready I couldnt wear my heels as i was having issues anyway but my dress was so long no one could see my sandal flats ha ha.

We went to the ball and had a fab time… I done some dancing with mark and the girls and we all had a good time. we even had official pics taken. The night went on and i started getting hotter than normal. My eye kept watering. We had just been given an award for best costume and i needed to sit down. 
I went and tried to find a seat, feeling weak and wobbly my head was pounding and i was all a bit blurred. I can remember Abi saying lets go outside and I felt cooler. I thought i started to recover a little and then that little sensation that I dread. I woke up on the grass. I can remember being told to squeeze hands and I think i did. i hope i did. Claire had honed pauline as arranged and we managed to get home. I knew I was in for trouble and I was right. That night when I got home and everyone had gone all hell broke loose and I was in so so much trouble. I just wanted to enjoy myself. I got the “you could have killed yourself for pushing it” well maybe i could but then If i dont do things im stuck indoors and then what is the point of living? none. Id rather die doing something I enjoy and love. 

Home & drs.

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I woke up friday morning with the most painful headache once again. My body ached from all the seizures and I was in and out of consciousness alot. I dosed up on medication and managed to get dressed and downstairs. I didn’t know but mum had asked the taxi driver to come earlier to get me home and he did. He was there at 11am.
I didn’t want to go but I did. I wanted to be around my own hospitals and Drs because I knew i was in trouble. The pain was so bad I was literally crying like a baby… it rarely makes me cry as ive a huge pain tolerance. I said goodbye to linda which was horrible, I love her like my sister and we have become so close… i hated to leave on this note where i couldn’t say or articulate words properly. I got in the taxi, surrounded by my pillows and slept as much as i could as that was the only time the pain was at ease… I say slept yet you never really “sleep” when in cluster phase… I was half awake and could hear a few things and could feel the pain but had almost put myself in a coma state to make the pain less (if this makes sense – cluster heads will understand).
We arrived home and all i wanted was to get my pussycat magick back from cattery.
I was still in so much pain but wanted to make sure magick was ok first. We went to the cattery.. i called his name and I was surprised he jumped up immediately and came to the door and started meowing… in fact he was constantly meowing until i gave him a cuddle… it was the perfect reunion.

On the way home I said to mum, I think I need to go to the drs.. We dropped magick off and got him settled and went to the drs (injections in hand) although given them mum has not been trained to administer and I was in too much pain to focus and hold a steady hand. we got to the drs but I collapsed in the waiting area and had a seizure. I was taken to a room and I had several seizures within the 3 hour time span we were there. My own dr was there (not that I knew at the time) but she was happy she had seen what happens as had not ever seen seizure and cluster headache before. (great dr i have!!!).

I was given an injection but it didnt work so the dr gave me morphine. I was still having seizures but when the meds kicked in they slowed. i started regaining consciousness in between and i managed to sit up. we got home somehow.

Great times and bad times

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The morning of Jades Prom arrived. We had fat club in the morning (well I was visiting with Linda and Jade – before I get any of you curse me for trying to loose weight – IM NOT)
I woke up that morning knowing the day was going to be a struggle. I took my extra meds and kept my fingers crossed. I dont know how many seizures I had before we went that morning but I was close to a big one before we left I know. Thankfully It didnt happen.
We arrived at fat club and i recognised alot of faces from facebook and people Id spoken to via Linda. It was Lovely and really friendly.
There was a display going on and I took a look.

2lbs of fat !

jelly and cream (or a pint?)

One of the ladys whom I talk to on facebook Pat gave me some harribo… Linda and I were going to try vodka harribo at some point but these ones were to eat too. I had some hoping the sugar would help. 

everyone was lovely. 
During the meeting I started to struggle – I had to result to oxygen but it was running out. We got home and I felt my head start to feel really bad. I took pills, my oxygen and headed to the sofa for a rest. 
Jade was due to have her hair done at 2pm. I wanted to document her prom for her… I had 1 hour to rest and get rid of this headache. Well I did rest but the headache didnt go. 
The next few hours were preperation for jades prom. I took so many photos just of her hair being done.. 
I then went and rested and I really dont know for how long…. when the pain and strange feelings get to this point time passes that is all. I think I slept a little but I dont know.

Jade came down… I was awake and she looked stunning. I grabbed all the energy I could and my cameras and started snapping. We went outside and took some beautiful pictures and then I was honoured to travel to the prom with her… I took more pictures too. I was struggling the whole way but I love taking photos and it was Jades big day and she was so pretty.
When we got home however I dropped the camera and tried to edit some pics. In the end I had to resort to bed but I never got there. I went into status epilepticus and dont remember much I remember waking uo between a couple of seizures and Linda holding my hand, she will never know how much that helped. It was weird cos normally I can hear alot more than i could this time… everything was too distant and too scrambled. I struggled as much as I could to get up and stop but the seizures kept coming. I was taken by ambulance to Grantham hospital and I woke up again in resus at Grantham General Hospital. I couldnt undersand the dr, and what I could understand he wasnt listening…. my case is quite complex and they never seemed to understand. There was one really nice nurse who helped. I had a few tests and they gave me some medication and i was told to sleep…. yeah right ok so i slept, and they would wake me up for blood pressure,.. so id sleep again and the bin would bang down so loud i ended up having another seizure. In the end once id recovered from that seizure I self discharged myself. we called linda and she came and got us. (THANK YOU SO MUCH).

in Grantham hospital

living in a bungalow !

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The next day was saturday, this was a chill out day really as we had a important show to go to…. jades! 

We did however open our pressies we’d brought each other and dyed my hair… purple ! yes i know bit crazy? but hey it was something off my bucket list so why not ! 
Anyway we dyed my hair, it went how I wanted it to in the end… it was a bit traumatic really as i had to have it bleached first….. i have a hell of a lot of hair. By the near end my head was pounding and I was getting tired but we finished it and the result? amazing ! 
me and linda, the pink and purple girls!
During and after hair dying we opened our pressies,…. I found out this was not just going to be the only thing i ticked off my bucket list ! 

there was also one more (picture cannot be found yet!) 
anyway all pressies were put to one side as we had a show to prepare for ! 
Jade was red riding hood in the play into the woods in the GAPA variety performance, I’m proud to say she stole the show.

The first half to be honest could have done with more work and it was only jades group dance that saved it. The second half was excellent but then im biased as Jade was in the second half alot. It was great to finally see her perform and do her stuff. One talented lady is going to come out of that girl and even more so now she is starting college. 
We came home (or rather we sat on a street wall for half a hour as James came to rescue us from our flat tyre).
James did rescue us and we went home. I sorted a entire 64gb worth of photos out and then woke up under the table ! Yeah seizure hard concrete floor but lovely people thankfully caught me… or so im told ha ha…. i didn’t have too many bruises anyway! That was the first sudden seizure Linda had seen… It was really horrible waking up on someone else’s floor not knowing what they just saw. Linda is one of my bestest friends in the world but it didn’t make it any easier until I felt that hand. Somehow when someone isn’t afraid to hold your hand you know its going to be ok. 
Yes this seizure may have been caused by tiredness, exhaustion, and lots of music light and a headache but it could have happened anyway. I always think that unless i fall and drop there and then at the point of the lights camera action or whatever… it could be anything. 
After I recovered we went to bed… Stairs after a seizure Very new concept of trying to tell my legs, feet and body to move in a upward direction before I can rest (i live in a bungalow and im so glad!). 

Worries, Happiness & Prayers

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My last post was about sci-fi weekend. well the next day I had band.
I managed to get enough rest to go to band. I love band but with Epilepsy there are a lot of things, worries, situations that I have to prepare for that many people do not see. Monday night my friend was not there.. It meant that before hand I had to deal with mum who was in a small state of panic as to what would happen and how would I deal. I got over this by mums phone number on a piece of paper being given to the conductor… I really hate all this but its safety I guess plus no one would have known what to do really. The next problem was that the gig the band are doing this weekend is at the East Kent Airshow. its a huge event and we are playing.. however to get in you need a ticket. The band get in for free however tickets are about £20 ! thats alot in our world. Money we cant afford for a gig that mum really didnt want to come to apart from to make sure that if I were to have a seizure I could be safe and she could help me and get me home, administer my pills and oxygen. Anyway we got given a wristband each at band and i was praying there would be spare ones… i dont know if there were or were not because they disappeared quickly. They were very coveted. Some people knew my situation and one extremely nice band member who already had brought a family ticket gave me their wristband. I am so so thankful I dont think they can ever know how much that meant to me. Mum hates planes and noise but knows how much i wanted to do this gig. I am so so happy to have the oppertunity to go.
Of course it will all depend on if the beast lets me have a good day but fingers are crossed.

Its not just the gig and the beast I have to worry about saturday. I have a appointment with my consultant on Saturday morning before the concert. Im really worried about this appointment as I get news of what next. Having this news prior to a important concert is not really how Id like it. I worry that if it is band news I will not play well. Then again if it is good news im going to be so so bouncy!

All I can do until the morning is have faith and pray.

Hospital again and drug trial

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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.

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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.




I will not give up

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When I was diagnosed with epilepsy all those years ago we were told the things that I could and couldn’t do, the things that needed to be watched and what I should and shouldn’t stay away from. Some of these made seance, others didn’t. Some because of my age then (4) didn’t apply anyway. When I was re-diagnosed as a teen some of these started to play a part whereas they hasn’t before one including not having a bath or shower without someone being about. Outside the door. This is one of the most frustrating things I think because having a relaxing bath isn’t as relaxing when your constantly aware that someone is sitting outside the door waiting for me to get out so they can continue doing whatever it was they were doing. I have only had one seizure jn the bath and i was startkng to get complacent again recently until However I realised once again how important this was. Tuesday night when I was relaxing after a long day I woke suddenly in the bath to find the water drained and my head hurting and me in the bath surrounded by soaking  towels. The feeling of pain from having a seizure in such a hard and restricted place my nose and throat sore from swallowing water and my contact lenses still in but really sore and hard in my eyes. I was lucky though… So many others have been where I am and not made it, the beast taking them to heaven. Just three months ago another angel was taken this same way. The risk of drowning in epilepsy is higher than you think. 



The next day I had another seizure and another and another. My head was hurting so bad and my painkillers weren’t working. I had oxygen on and there was not much else we could do for now. The dr wouldn’t come until it was worse. Well it got worse I can’t remember much of the next few hours. Mum had called the dr in panic and tears that if they didn’t come out and administer the emergency drugs now then we would end up in hospital which is useless for me now as my veins are so bad iv access is impossible with light going to theatre and the hospital staff get grumpy even though I cannot ho my veins being difficult to access! 



The dr came about a hour and a half later. I was given a series of injections one in my bum and two in my arm. All having a different purpose and all combined making me really sleepy and woozy. This is not an uncommon syndrome for me. So many times I end up in this situation of pain from the cluster headaches and the epilepsy seizures all at once fighting inside my body and trying to take over, they succeed and I end up poorly and bedridden for a few days recovering from the aches which my tensing muscles cause, the bruises and scrapes where I’ve hit something or knocked something down, and the wooziness nausea and anxiety this beast and the drugs cause. 



I eventually do recover. Able to move freely not in pain… Then another seizure strikes. Is it to remind me that my body isn’t actually mine anymore?  That it belongs to the beast of epilepsy? No because I will not give up! I will not let the beast take my body just yet…. I’ve too much I want to do. 

It’s taken part of my vision some of my teeth have been broken, It’s given me sprained ankles, dislocated shoulders, serious cuts and scars and that’s just physical. The beast still hasn’t broken me  yet. I will not give in. 

I’m really Tired and still feel unwell but I’m still positive too. 


I have epilepsy…. It does NOT have me 

Looking fine on the outside

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Sometimes I wish you could see epilepsy on the outside. The trouble I have when I get asked things like, What job do you do or where do you work….. well at the moment my answer has to be I don’t….. Everyone because of that thinks im one of these lazy bums who live off the state and don’t deserve to breathe or be part of the same airspace. They look at me as if im dirty, a scumbag who should be out earning a wage. 

Well Its not for lack of trying.  For 3 years I fought to get back to work. I went through assessment after assessment after assessment. I went to interviews with the hospital for work (i was a nurse) I went to assessments at the benefits place as I was told to go there by my dr…. whereas other people were there to try and get signed off for work and get benefit, I wanted them to tell me I could go back to work that I had made my life for the past 6 years including training ! It didn’t work. I did however get a little benefit… not much to live on especially compared to what I was receiving working but It was a conciliation and helped me with transport costs and things like the things I could do. To get to this point though there were forms and forms and forms. How anyone gets away with the benefit fraud that you see on TV astounds me.

Now things have changed (for the worse) with my health since the beginning I dont apply for jobs anymore… not until I can get a Drs letter saying I can work. I have tried to volunteer at charity shops (thrift stores for you USA readers) and places such like yet they wont allow it as they are worried Id sue them if i fell and hit my head on something in their shop. The world has gone mad. As Im at the point where I have been told I shouldnt be on my own at all I guess work in most places is out of the question but doesn’t stop me wanting it. My dream job would be somewhere I would be helping others. Probably something craft wise now Im really into craft. I wish I could work somewhere like the craft box… Crafting all day and all that it comes with doesnt bother me. To see peoples happy face when they create something is amazing and lovely. 

Just today I had my cousin round and I set her up and taught her how to bling her own phone case…. the outcome is amazing which I will post when its dry ! 



So anyway looking  “normal” on the outside can be difficult 

Just the other day someone said to me “your looks don’t give you any sympathy” meaning well you look fine! I just stood there…. In my head I was saying “if you could see my insides, the pain I have and the struggles I’m going through I would be the ugliest thing you have ever seen, if seizures had a physical form what would they look like? if the pain and joints could speak what would they say?” I will never know those answers.

.. Lots of people out there think of epilepsy as having a seizure and getting back up and that’s it. Well it is and it isn’t… My seizure count last week was 12 and that’s just the big ones…. It’s difficult to count the small ones as sometimes I don’t know about them but the ones I know about ….. The count is about 80. I’ve gone through 1 portable cylinder and one large cylinder of oxygen and about 185 tablets.

I’m sitting here and my back hurts alot, I can feel twinges of pain on my ankles and my wrists. In fact if I move my wrist.. It cracks. My neck is sore and I’m tired. This is because the seizures really do take a toll on my joints, my muscles and me.
When i have a seizure i do try to just get up and start again sometimes i can sometimes i cant…. its not as easy as it may sound or look. tiredness is like a black heavy blanket that covers me and sometimes I can and sometimes I cant fight it. Now Seizures and epilepsy… There is no fighting with the Beast of epilepsy. – once a seizure decides its going to happen , that spark from one neuron missing the other one and landing somewhere it shouldn’t well that I can’t fight, I cant stop it, that is it. Sometimes I know its on its way and it gives me signs and sometimes it creeps up from behind and I have no idea until I wake up on the floor or in some hospital somewhere, friends sometimes strangers peering over me.
Just think of living life knowing that any second your body could be taken over and the next thing you know you could be in a hospital bed somewhere. Im NOT over exaggerating. on 19th July 2009 I came home from work and went to lay on the bed…. the next thing i knew it was a week later and I was in intensive care. That is the not knowing- the uncertaintuy of epilepsy.
I take a photo every day to remind me of that day….. why? because I don’t want to forget. – Epilepsy takes memory sometimes too. I lost a couple of weeks here and there and I don’t want that to happen again. My photos are my “insurance policy” so next time you tell me I take to many photos….. just think that I can’t rely on my brain to remember the good times like you can.

I’ve been fighting this fight for 22 coming up to 23 years in July. Not because I want to, or because I can, but because I don’t have a choice. Im not unhappy with my life though in fact I feel stronger for still being here today.