My life has become a sequence of abbreviations and acronyms. When epilespy isn't enough, one can always count on DI, CPS, ME or SAD to liven up the party. You see, a few weeks ago I was in bed with my husband, and I turned to him and said 'I am so happy'. And then like lightning, I jinxed it. Why was I such a smug little wifey to even say that?! I have had a month of hellish pain and don't quite know what to do about it. Lots of blood tests (they are seriously running out of veins now, and blood in general) urine samples, and new drugs. Anti epileptics, antibiotics, anti inflammatories. Checking for kidney failure as I have been waking up 6 times per night, peeing. Have to wait until January to be seen in urology, but had an MRI scan today for my constant migraine and extreme photophobia. Hopefully we'll get some answers or reassurance that I am ok. I guess the biggest news is that I have started taking cannabis oil. It's only been a few days but let's hope it makes a difference.
I'm irrational and probably shouldn't be blogging but I want to carry on my story.
So, hopping back 5 years to intensive care, where I started to regain consciousness. I had never felt like this before. So heavy, so lifeless. I remember my head feeling bumpy on the pillow, I could feel every bone on my skull pressed against this large uncomfortable bandage. My first thoughts were, 'I haven't got hair anymore.' But this didn't matter - how I felt in that moment eliminated all sentimental dwelling. I couldn't really open my eyes, but as I attempted, I began to see sick people all around me. I was just gobsmacked and thought, 'Is that really what I look like?' This was the moment things got real.
Next I noticed my oxygen mask, catheter, drip, pulse and blood pressure on constant check. As soon as the nurses recognized movement in my eyes I heard, 'Madeline, Madeline, you're in the Intensive Care Unit. Can you tell me what date it is??'
I could not actually believe they wanted me to talk; the effort it took to process the information around me was exhausting, let alone open my mouth and articulate. It took along time for me to respond, but after a few minutes I muttered my cousins Birthday, '24th March.' I remember hearing my parents nervous laughter. They must have just been so relieved to hear me talk. They were sat by my bedside for hours until I woke up, apparently thinking 'what have we let our daughter do?'
My stay in ICU wasn't very pleasant. Luckily I don't remember much. I was having seizures by the second (which although uncomfortable, meant that the second surgery could take place quickly and they wouldn't have to provoke seizures through sleep deprivation). My observations and reflexes had to be checked every twenty mintues which meant me getting woken up constantly, I just wanted to sleep. The high dose of morphine was making me vomit constantly, defying all gravity as my body was not well enough to move, so the nurses had to lift me up in bed to help me puke without choking. The pain in my head was untellable.
My stay in ICU wasn't very pleasant. Luckily I don't remember much. I was having seizures by the second (which although uncomfortable, meant that the second surgery could take place quickly and they wouldn't have to provoke seizures through sleep deprivation). My observations and reflexes had to be checked every twenty mintues which meant me getting woken up constantly, I just wanted to sleep. The high dose of morphine was making me vomit constantly, defying all gravity as my body was not well enough to move, so the nurses had to lift me up in bed to help me puke without choking. The pain in my head was untellable.
The surgeon had performed a craniotomy, and put electodes on the surface of, and inside my brain as pictured below. He then wrapped my head up in bandage keeping my head open and accesable to infection. The electrodes connected to an EEG machine where they could monitor my brain waves directly every time I had a fit, and find out once and for all which part of my brain the Epilepsy was coming from, and then if it were in a convinient area, he would remove it.
After being in ICU, I was moved to the Telemetry ward so they could closely monitor my seizures. They were happening so frequently that they wanted to connect the probes that had been put on my brain in the first surgery to the EEG to get as many recordings as possible - then I would be operated on again. The objective was to find which area of the brain the epilepsy was coming from, and that would then be removed, providing it was not on the primary motor strip. Throughout my time in the telemetry unit, my body started reacting to the trauma it had been through; my face started bruising, my eyes were forced shut, my mouth could barely move. I slept the days away so I have little recollection of my time there, which is probably a good thing because I was having lots of seizures.
I remember my mum telling me people had been calling to see if they could visit but I literally didn't want anybody to see me at this point, I was so worn out, I just felt it would be pointless for them to come, as I wouldn't be on tip-top Mads form!! (I have never stopped being like this, and I hate it about myself. Even when I'm most sick, I still manage to fake being ok, which results in me being more sick.) However as the days went on I made a request to have my brother come and see me. It is a vague memory, I was still blind, eyes fused shut. But hearing his and his wife's familiar voices gave me a sense of home.
In telemetry, the doctors also provoked some seizures for their own clarity. It was like being given electric shocks. They tampered with different areas of my brain, pushed physical buttons, and in response my body would have violent convulsions. Eventually, my mum told them enough was enough as I was in complete agony.
The next morning I had a visit from my surgeon in the early hours. He gave me the devastating news that the resection was impossible, as the area of the brain the epileptic electricity was coming from is in actual fact on the primary motor strip, and if tampered with, I would end up blind, paralysed, my memory could have been wiped, or i could have had a stroke. The odds were not in my favour. At the time I was not upset, I literally felt no emotion, too tired to think. I wanted him to just go away so I could go back to sleep. My body was so overcome by pain and weakness that it shut even the deepest thoughts of my subconscious away. It's indescribable. But definitely a good thing, as at that time I didn't need to be grieving. I needed positive vibes to get me walking and talking again. I didn't have time to contemplate the grief that I should have been going through, that I had lost opportunity to be healed. Grief came later.
During my time at Queens Square, I met some crazy yet awesome people. I like to people watch, and guess people's stories. But I was too young and embarrassed really to connect with any of the patients at queens square.
Last week I visited my doctor at the Chalfont Epilepsy Centre. I am always overwhelmed when I sit in that waiting room. Waiting to see their neurologists were adults of all ages; not only with the condition I fight daily, but with many other conditions too. Clear turrets syndrome, special educational needs, younger mental age, paralysis, blindness, Down syndrome. I have to admit, I felt a bit uneasy with some of the patients around me, just because I took my daughter with me. Some of the patients were throwing toys towards her and you never know whether they will lash out or not. On a lighter note, one of the patients was making mooing noises, and my daughter was looking around everywhere and imitating 'the invisible cow'. I mean perhaps she shouldn't be coming to my appointments with me, I thought. I was in two minds; I didn't want her to be scared or in danger. But I also deeply want her to understand the reality of human life, we are all unique, we are important, we all deserve respect.
And then this happened:
We met a 32 year old lady called Nicole, who was loud and funny. She had two unbelievable carers with her - she has to have two in case she has a seizure in the car. She had carers because her mother had abandoned her. No contact. She actually called one of the carers 'Mum.' Broke my heart a little. They were true saints, and Nicole was the happiest 32 year old I've met. As soon as Nicole saw my little girl, she said 'I need a cuddle'. Totally maternal. I was a bit worried, but also mad at myself for being protective. I waited to get to know Nicole a little better. Nicole got on the floor and started playing with my daughter. She picked up a rabbit and said 'here's a rabbit, they rabbit rabbit rabbit, talk a lot like me.' She asked for a cuddle again. My daughter opened her arms to Nicole. That moment was special. Nicole will most probably never have children. I'm glad she had a little joy in that moment.
It's funny the people you meet on your journey. The people you forget. The people who impact you without even realising. So many of you impact me. I'm grateful for everyone who prayed for me, thought about me, visited me, send out good vibes- I felt the power and I still feel your support now.
Such an over share, wow. Goodnight x
