Limbo

I haven't blogged for a while as I was embracing my 'good days'! I had quite a few and so of course I went mad and did as much as I could. Now I'm experiencing the crash! Last night i thought, should I, or should I not play Netball... it was a battle between knowing exercise was good for me but also knowing, exhaustion wasn't. Anyway, I decided to go and had a fun time until the last 5-10 mins. After playing with this lovely group of girls since June and avoiding the topic of epilepsy entirely, I had my first 'twinge' on court. Grrrrrr. Not fun. I asked for a hand and explained I had epilepsy .... I was almost escorted of court until i said 'it's fine, I'm totally back to Normal' and ran back to play. They were laughing. They thought it was unreal. You see the thing is, I would resent my illness so much more if I had sat off court for the last 10 mins. I would have ended on a low. I can't be dealing with that. I'm so used to losing the feeling in my limbs and then just quickly going back to normal. It's hard for people to understand....

It took me years to find out that regular exercise was actually amazing; not just my general health, but to control seizure frequency. At nineteen I was a daily gym goer and running amateur. Life was so much rosier with the release of a few endorphins. That and the powerful vitamin D, which being majorly deficient in, meant holidays were essential, not a luxury - it isn't all bad, hey.

I was at a point where when I was good, I was really good. But when I was sick, it was just horrific. This put me in a strange unknowing position; limbo. I had this fear about my future, career, leaving home. I was still dependant on my parents, my family. The drugs I was on still slowed me down a lot, and I didn't know whether I would be able to cope if I did decide to go away to university, which was what all my friends were doing, and of course, I wanted to be the same. I spoke to my Neurologist (the best Doctor in the World - remember him?) and he wasn't wonderfully enthused about me going to university, but for years we had been discussing this operation to investigate and possibly cure my epilepsy.  I had been on the waiting list for 2 years now, with the assurance that I could pull out at anytime.

I never experienced a 'stupor of thought' about having my surgery. I was quite strong minded, and with the hope of a brighter future, it was what I wanted to do. My Dad, who had had successful brain surgery to remove a tumour the size of a pear on his pituitary gland (wow), used to talk to me about what was coming, but he was very supportive. My mum who had to watch him go through it, was very concerned. But she knew it was my decision and she knew my life was at a halt and I needed to see if these genius' could do anything.

Something that I had to learn, a really big lesson for me, was acceptance. I had to accept that I was epileptic, and that that was what I had been given. I had to accept that the surgery may not work, and that I may just be the same after,  if not worse. But this was my life, and it was still a beautiful one. There was so much I could still do in life even though I had a medical label! And I think I needed to realise this before having the reassurance that I was doing the right thing

‘God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.’

I decided that despite having a physical condition, I had a mental barrier to overcome. Whenever anyone asked what I was doing with my life I was always 'still on the waiting list.' It was time to get off the waiting list and onto that operating table. Even if the operation didn't cure me, at least then I could move forward knowing that I had done everything I was capable of, without any what if's. 

Nothing could have prepared me for reading that letter I received one Tuesday morning. For something I had waited for for so long, I don't know why I felt sick to the stomach.

So, what else than to make a bucket list. Every day up till then I was going to make the most of my family, friends, food, freedom. We went on holiday, i paraglided, the height of all Liberty! I was a bird. The kind of bird that has seizures landing, and taking off. Rather irresponsibly it had slipped my mind to tell them I had 'epilepsia'. They must have thought I was a complete nutter when 'cramp' knocked me to the floor, smack bang on top of the Italian instructor who had accompanied me. Still, the outcome was pretty sensational.

(You can see here how my body isn't completely back to normal, trying to keep my balance)

My friends and I had some fun during this time. Sometimes I wish everyone could live how I lived those few months, I have never felt so much love and happiness in all my life. I know that a lot of people just felt sorry for me and didn't wanna be in my bad books if I died or whatever (haha) but seriously, I know I was watched, and I lived every moment to it's fullest.

On the last day of freedom all my family were gathered together for my sister in laws baby Shower. I remember feeling so overwhelmed, I was really trying not to think about my surgery but it's amazing how powerful the subconscious can be. I had to keep going into the bathroom, crying, taking long deep 'cleansing breaths' (hypnosis technique), cleaning up my blotchy face and then going back out, smiling and laughing. I really didn't want to be feel like that. I wanted to enjoy that time but the fear and nerves were getting to me and I was very restless and on edge. My suitcase for hospital was half packed, and I remember my family members trying to help me get organised. I received presents and cards, and my friend made me a 'Survival Kit' with pretty much everything in it. Too cute for words. The charity overpowered me, and instead of self pity, all I felt was love and gratitude. Over those past weeks the kindness that had been shown to me by my friends and family was so powerful; it was truly what gave me the support I needed to get to get to the hospital on the 18th of July.

I remember the drive.
I remember the smell of the hospital, I can smell it now.
I remember the familiar faces of the nurses, welcoming me back into the Telemetry Ward.
I remember the revolting Macaroni and Cheese I ate the night before.
I remember my parents waiting around, twidling their thumbs.
I remember washing my hair for the last time, with special shampoo to fight off infection.
I remember them putting the granny stockings on - in complete ignorance at how long they would stay on for!
I remember being visited by my anethesist's and my surgeon.
I remember crying when they told me I was going to lose more hair than I had been prepared to lose.
I remember my parents leaving me, reassuring me they'd be back soon.
I remember going to bed and everything feeling so surreal.



I got woken up ridiculously early. I was handed these hideous disposable knickers. These, along with the stockings, the gown and the prospect of being bald in a few hours - I could basically win Britain and Ireland's Next Top Model.

The walk from the ward down to Theatre was so daughnting. As I stepped into the lift, floods of tears started running down my cheeks. I clung to my mum's hand. At this moment I was petrified. Then everything started happening so quickly. I was taken into a small square, clinical room, and layed down on the bed. My parents squeezed into the corner of the room too, looking apprehensive and worried. My Dad was trying to be his usual jokey self, to calm me down, not quite working.
'You've got a lovely tan, have you been somewhere nice?'
'Sicily' I sobbed
'Mads paraglided in Sicily' Dad pitched in.
And him and the anethesist started talking about the wonders of extreme sports to distract me from what was about to happen. It worked.
'Okay injection in your arm Madeline....'
'I love you' I said to my parents, I was quickly becoming drowsy.
'I love you too Madeline' my mum said.
'I love you' I said again.

Remembering this makes my heart ache a little.

Xx