Tag Archives: tests

Looking fine on the outside

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. 

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!

Lightning strikes twice

JUNE 26th 2012

Today was another really terrible day in my book.
Despite waking up feeling positive and happy (well why wouldn’t i?)
dad was going to work… I was seeing nan and grandad Then  Kara and I were going to the craft box I was finishing my teapot and Kara had a pot to complete for a wedding pressie. A good day was planned.
I relaxed and was loving my painting. Kara and I were having a laugh and Tory was chatting away too. She had a work experience boy starting that day and it he was fab too. All was good.

I’d nearly finished the rim of the teapot. it was a detailed bit. I started to feel a bit yucky and put it down to the concentration. I took my pills and continued to paint. I had to stop for a bit though as it was getting a bit much…. i felt my body tense… i felt a rising feeling and a wave of fear came over me. I knew what was happening. I tried to talk to let someone know but nothing was happening. I heard Tory ask if i was ok… i don’t know if i answered or not. i can remember hearing ‘floor’ but i couldn’t move…. the moment passed and i woke up on the floor, Tory right there and purple blanket about. Increasing pain in my head and aching from head to toe… I felt like i needed to get up but i can’t remember if i did or not.
Mum must have been called and when she arrived she didn’t look happy… I guess thats my fault. Mum took me home and I went to bed. 4 hours later I woke up realising the aftermath that must have happened. id text’s and calls missed on my mobile from Kara. I text her back and told her i was fine. She was worried about the pamper eve and if id be there… i couldn’t answer that right then but i said id try.
I had had a bit of a infection previously this month id felt a lot better since finishing the antibiotics but still not great, i pushed it aside  putting it down to my normal aches and pains from the seizures but now i made an appointment with the Dr.

The next day i went and had my appointment. temperature, blood pressure the lot. My temperature was 39 so quite high and my blood pressure low but i normally have a little bit of a lower blood pressure. a couple of tests showed infection. my blood results would come back on friday.  We later found out that they could not get enough blood to test… since the repetitive hospital admissions and IV drugs my veins were hard and unable to cope with much more.  From the other tests It looks like another kidney infection so back on the antibiotics i went. 🙁
Tory had sent me an article on caffeine and seizures. I asked the dr but he didn’t remark much.
I did start the no caffeine that morning though.