While I lay awake with pain from the tip of my toes to my head after a severe seizure, what do you think I think about? how unfair life is? how I wish things were different? oh boy how depressed am I?
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.
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 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.
Remember I love you all and appreciate everything.
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.
1) grumpy has ben more than just grumpy…. we’ve had lots of issues which will be gone through in another post when im in a mood to bother talking about him.
2) seizures have not been great but we cope. and i got a new toy which will also be gone through in another post.
3) my building of the studio has started…. pictures will go up in a min,
4) ive gone back to band practice which i totally am loving but is another thing draining my little energy, but itss so worth it.
anyway these are my excuses and apoligies for being away for so long.
Normal service and blogs going through each of the above will be going up soon.
JUNE 26th 2012
Despite waking up feeling positive and happy (well why wouldn’t i?)
If theres something I’ve learnt and thats life is precious. Epilepsy does scare me sometimes and so do the cluster headaches. I try not to show it, i don’t like to and I hope that people wouldn’t know unless they know me wouldn’t know what my life is about just by looking at me… why would they unless they spend enough time with me. This time really did scare me. I had taken a picture half an hour previous to my fits and the next day when i was out of hospital i looked at it and there is no sign of what was to come. Like a time bomb waiting to go off?
|Painting before my seizure at the craft box|
I started on the work but was so tired i was nearly in tears. I was scared and I felt I had to leave and quick. I made my excuses and left.
I done half of dads plaque but was too tired to do the rest. Kara needed to come down that afternoon so i went home, had lunch and slept. 3:30 claire and i went back and finished the plaques.
I had the ok for oxygen, but i also had more pills to take. I was now on a total of 19 a day. If they help i don’t care i said.
A few weeks on and a little improvement was seen on the seizures. I had to up the dose of the medication and they meant 22 pills a day but who cares little improvement is better than none.
I was still getting a few absence seizures but i didn’t even bother to say about those any more.
When i was on my menstral cycle the generalised would be worse. The oxygen however meant that my headaches were able to be controlled a little. Sometimes the oxygen got rid of the headache totally. Was i about to get back to work and have a life?
The oxygen also meant that recovery was quicker. Mum use to grab the mask and give me oxygen when i had a seizure and we found this helped this too. We both started to relax.
February 11th 2012.
After a lovely but difficult christmas came the new year. My friend Matt had become my boyfriend on New years eve and I couldn’t have been happier. I was going out and really living life. He knew me from school (total of 16 years) and he had grown up with my seizures so all was good.
Over the christmas period i had a few blips and had to spend a couple of days in bed as i was too bad after the seizures but i bounced back. Febuary was different though.
Matt and I were dating and our first valentines day was planned to be great. However 11th february 2012 i was taken into hospital. The seizures wouldn’t stop and again hospital was the only option. I went through the same process as always, anticonvulsants in a drip over night and a couple of days in hospital. i got out of hospital on the morning of 14th february (valentines day) this wasn’t going to be the day we planned as i was too weak but Matt came over nevertheless and we had a lovely evening watching a film. I was happy.
I was a bit disheartened by this blip as i thought we’d cracked it as the seizures had reduced little and i thought i’d just up the medication and that would be it, but I didn’t give up.
As soon as i was well enough matt and I were off doing things and Kara and i started crafting again. I Started to craft more seriously and sell a few bits too.
Id stopped going to WI as it was getting the same and mum wasn’t fussed so we chose to spend the joining fee on some show tickets throughout the year instead.
Kara and i were still best buds and soul sisters and she introduced me to a amazing craft place. the craft box . You paint pottery then the lady puts it in the kiln and it comes out shiny and looking amazing. We went there often and i started to go there solo too as Kara could not always do it as she had so many other commitments to clubs and social groups such as drama and craft.
We didn’t always craft. we went to the cinema and shopping and other places too. We even went to the o2 arena and watched disney on ice. It was great Kara was becoming as mad on disney as i was. I felt sorry for her mum as she had the job of taking us but she seemed to love it too. it was a really good day.