Coming Home

The last straw of this infection that was keeping me in hospital for longer than expected was one night when I had a high fever and the shivers. I buzzed for another blanket. The HCA came in and actually threw it at me and said most sarcastically, 'Anything else?' You do wonder why some of these people choose a service vocation. I mean, it's not like I was just buzzing for attention. I was the mouse of the ward compared to the nutters around me, one of whom would scream day and night - she just so desperately wanted to die. It was unnerving to listen too.

Another person - perhaps a patient or maybe a member of staff - stole my iPhone while I was in the bathroom. No mercy in central London hospitals.

After I recovered from the virus and weaned off the morphine, my Mum was determined to get fresh air into my lungs, she'd take me for walks around Russell Square - I mean, the looks when you're in a wheel chair AND you have no hair. Boy, they really felt sorry for me. Fresh air felt good.

It was the week of the London riots and the same week Amy Winehouse died, that after plenty of begging, my Surgeon said I was fine to go home. The reality of coming home was actually a lot scarier than I had anticipated. Sleeping In my own room, without a buzzer. What if I got sick again? I was fragile, having only just got out of my wheelchair, I could barely walk. But we did it, my Dad picked us up and I walked out of UCLH feeling emotional, nervous but also kind of free.

My hair was a state. About three quarters of it was shaved, but I had told them to try and keep as much as possible, so the rest was still long! So when I got home my brothers got the clippers out and shaved the rest of it off (against my mums will who is so sentimental, every scrap of hair counts!) 

The first time my family saw me in my bald headed glory was at my Brothers Birthday BBQ, which was a nice but difficult day. We had ordered a wig but it hadn't arrived in time so I looked like a convict/chemo patient. The worst part was when my nephew didn't recognise me properly. The shock on people's faces did genuinely pain me sometimes. The wig arrived but it was horrific, so we went and got a fabulous one that resembled my old hair. I wore it in the early stages.

The scar starts where my forehead meets my hairline (This is where it's most visible... it's like a little crater) Then it goes across to the across to the 'cowlick' where there's an even bigger crater. Then, it goes over to the left toward the ear as pictured.

I remember when I got my stitches taken out, and I had to go back there... oh it was horrible to be back there. People say they 'hate hospital' and I never really got that, like duh, no one likes going to hospital. But now I know it's about memories. I hate the nostalgia that comes back, reliving it. It all comes crashing back with the sound of a pager or the internationally distinguishable stench that is probably a combination of bodily fluids masked by bleach and of course sanitizer.

(here you can see the start of the scar)

Now this is the part no one tells you about. Recovery from brain surgery does not take 3-6 months like stated in the highly inaccurate neurosurgery leaflets. My Doctor did once tell me it would take a year for my brain to be 'fully recovered' and let me tell you how true this is.

It's an emotional trauma. Your life stops when you're recovering, you can't run, exercise or jump about like you were able too a few months ago. Which of course makes you feel slobbish and worthless, and like your life has no meaning. My mum was feeding me on average twenty build up drinks a day, heaven forbid if I lost a pound or two post surgery, surely I can reap some benefits😂🙈 I wanted to get active again but lifting a single weight caused my head tremendous strain, and still did even 2 years later. Eventually, I found my feet and began moving, running, swimming and even playing netball again which took a lot of confidence. Weights still remain a bit of a problem and irritate my head.

So life was happening, and apparently I looked like Halle Berry/Emma Watson/ Demi Moore/ Frankie Sandford/ any other celeb with short hair who doesn't actually look anything like me at all but ya know, coincidentally rocks short hair. And I took plenty of cringy progress pics on the old webcam; 

I was on this journey to recovery and had ups and downs. Tired days and ok days. Depressed periods, happier days. When I had my first seizure at home after surgery that was hard to take. Just a reminder that nothing had changed except the scars I had been left with. The following February, I woke up with a migraine. Now, I wake up with a migraine 99% of days. However this one was too much to plough through. It felt like my head had been opened again. I was in a lot of pain and slept for a long time. I was photophobic and the only thing that woke me up was to throw up. I was very sick and admitted to hospital and diagnosed with meningitis after another lumbar puncture. They treated me and released me eventually, and I went back to normal epileptic living.

A few months later following a date in London I hopped on a train from Marylebone only to have a seizure and fall off the train onto the platform. I was knocked out, handbag splattered over cobbled pavement. I could hear angry voices - someone had my phone. It was all a blur but I ended up in an ambulance and rushed to St Mary's hospital where I waited for my poor parents.

We picked up the pieces, but it's tiring. Starting again isn't something you get used too; it actually gets harder each time. You wouldn't think so. But the more you get knocked the more fragile the body becomes, and the more frightened the mind is about what's next. Now, 5-6 years later, I have anxiety but can ya blame me? I think I mentally prepare myself for what's next. But hey, I'm changing my drug routine tomorrow. Hoping to come of my staple anti epileptic because it is causing me too much damage. Let's hope the replacement does me some favours. Wish me luck! X

Ps; short hair is so underrated. It grows you know. 

6 year anni!

It's been too long since I last posted a blog entry, but to tell you the truth I've had a pretty poorly year. I was in both Bournemouth and Southampton hospital Feb-March having multiple uncontrolled attacks per minute, all day for weeks. It was a hard time, one where I felt like my body might give up on me. When your heart is racing that fast, all day and all night you do wonder, when it's going to end. I wondered why the medication wasn't working, why nothing was working and why all the doctors were looking at me, well, like an enigma. Living like that is no life at all, and my heart truly goes out to those who survive day by day with that amount of seizures. I was in a bad place, a dark place, somewhere hopeless. Then I realised that if what I profess to believe in is indeed true, then I will have an opportunity one day to live again, pain free. Which is all I really want. So hope has become an expectation and a need for me to get me through each day.

Now that we've reached summer my health is thankfully more stable and today we reached the 6 year anniversary of my operation today so I thought I might scribble down a few thoughts and feelings to add to this story which is essentially my personal record, but something that a few of you might be interested in.

So, time 6 years ago to the hour I was in theatre. It seems like just yesterday, but the 18th July just seems to come round so quickly from year to year. In previous posts I've written about the procedure but today I'm going to write about the after effects.

We were aware of the risks that were involved with this kind of operation; I could wake up paralysed, have my memory wiped, suffer with partial or complete blindness, have a stroke or infection of the brain. Thankfully I didn't get hit too hard. When I woke up I couldn't see properly for about 2 weeks, this came as a total surprise to me, I hadn't anticipated short term blindness. I couldn't walk for about 3-4 weeks, but this was partly due my body being attacked from head to toe by a nasty infection.

The physio-therapists were trying to get me to walk again but I just couldn't, I was continuously fainting and collapsing, basically not recovering like I should have been. I couldn't keep down food, I didn't want to eat and that which I did manage to swallow I puked up immediately despite having an anti-sickness drip. I didn't empty my bladder for two whole weeks, so they had to pump it out which was pretty painful. This has effected my bladder for the last six years, and I am still undergoing investigation in urology.

I also had problems with my heart, blood pressure, back problems, rash and migraine. All quite typical of post op infection. They tried to wean me off the morphine but I was so addicted I actually stole some from a nearby nurses trolley whilst being wheeled to the loo by my Mum. Apart from the fact that it took away the ridiculously noticeable feeling that my head had been ripped open, It gave me some pretty awesome hallucinations; elephants trotting up and down the ward just being one of the joyful distractions. Mainly the morphine made me numb and sleepy, and that was easier to face than pain, or failure.

At this point in my life, early twenties, the age where most young adults have so much to look forward to and plan for, well I wasn't in the same boat. I was just waiting each day to get better so that I could get on with normal life stuff. Waiting.... Instead of just doing it. Facing the idea that I had to now live with my disease forever was hard, and did make me feel like we had failed.

6 years later.... and well, it's amazing what a little time can buy.

I mean, I didn't get my miracle operation, but that's down to biology I cannot control. However over the last 6 years I've had countless blessings and miracles; mainly my healthy little girl. But also a husband who takes care of us, an incredibly supportive family, a driving license, a degree and a job. I never thought I would get all of these things in my lifetime. The miracle isn't so much abolishing epilepsy, it's living with it. 

Just a sequence of acronyms

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.

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

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

Not a bad mum, just a bad day

Today was simply one of those mornings where I woke up, and just didn't feel so great. My one year old (haven't mentioned her yet) and I had lots of cuddles, stories, beebies and snacks. Luckily she was pretty good and happy to play with her baby doll alone, so I could let my body do what it needed to; relax. I hate it. I hate when I can't give my all. I hate it when I can't be productive. I do like watching her play though. But she must think, 'come on mum?!' Either that or she's just used to it. I was beating myself up a bit this morning. Then i just thought, I'm not a bad mum, it's just a bad day. And I have loads of them. In fact, we all do! I finally got my shizzle together, got dressed, fixed us lunch and now we are about to nap. Ahhhh my bliss. The hour in the day I truly long for. I can close my eyes, think about nothing, and I know almost certainly that after that hour or so I'll feel so transformed that I'll be able to get through the afternoon. 

I haven't posted in a while as we've been busy with the new house, and well, life. But everytime i receive a message of encouragement, or a comment saying that I've touched one of you in some small way, I feel pushed to carry on.

I have been watching the BBC series, 'The doctor who gave up drugs'. I love alternative medicine. I would do anything to take away some of my pain. He spoke about how swimming in cold water treats depression, because of the huge rush of endorphins released. He also showed a woman suffering with chronic pain taking up Kung fu to relax her muscles. Maybe I should try it?! The thing is, while I love all of this, I exercise regularly, I try to eat clean, I take my vitamins, have had massage therapy, reflexology, physio, hypnotherapy and recently tried acupuncture, who am I kidding; as much as I resent them, I need those drugs. While they make my days torture, where would I be without them? Probably not writing this blog, that's for sure.

It still amazes me how powerful just a few mg's of this magic powder can be. How can a few little particles change and control the entire pattern of the human body? It's scary to me. It's scary when I think about my crappy life span. Scary when I think how contaminated I am, and that my body can't survive without them.

So, after the abandonment treatment I spoke about last time, i was handed over from Oxford's neurology department, to The National Epilepsy Society (NES) based in Queen's Sqaure in London. There's also a centre in Chalfont which I attend every few months. It was such a blessing after having bad treatment to receive an incredible new doctor. My Doctor is the most amazing Doctor in the world. Good looking, incredible bed side manner, well spoken, genius. Me and my mum are still slightly in love with him. (Sorry Luke, sorry Dad) hope he can't find my blog, secrets out! Anyway, he wanted me to stay in the Epilepsy centre for a couple of weeks for more specialised EEG's; great, more EEG's.

The epilepsy Centre really wasn't a nice place to be for me, Its the kind of place where you really feel labelled. They tried to make it really communal and homely, and un-clinical. Kind of retirement home esque. It may sound nice to you, but I just did not fancy attending epilepsy anonymous, or this strange youth club they were trying to create. I really didn't have the right attitude to surround myself with others who were in fact the same, if not worse off than me. I wanted to run away from it. I hadn't come to terms with the fact that it was part of me. Most people also had other conditions too, many were in wheelchairs, so when I saw them, i thought wow, is that my future??? It sounds so mean, but that really was how I felt. At this time I was having loadssss of seizures, so they put me on Lorazapam (a depressant) and it really affected me. I wouldn’t talk to people, I was scared of the other patients – mainly because their disability was so apparent, they all wore helmets or walked or talked with difficulty. I didn’t want to be categorized as ‘one of them’, another ‘epileptic’. But I was living in the home just as they were. I was so unnecessarily rude to the nurse and doctors; I didn’t eat – Incredibly out of character. I remember feeling like I was in a dark place and I couldn't come out. Everyone who tried to make an effort with me was just irritating and I just wanted to cry ALL the time. My life was the worst and I had no perspective on the world and general suffering. It was all very selfish but It was almost out of my hands. Everytime I take this drug it transforms me and makes me feel so very down. Once again, how can a tiny tablet control a person so much?

Back to now, thank goodness, I'm on a jollier cocktail of drugs. They still give killer side effects but I don't have to suffer with that feeling of darkness... And I'm pretty happy! I want to talk about last Sunday; I taught a lesson in church to the women, about how we can be 'nurturers' to ourselves and others. I'm pretty sure I get the most out of any lesson I teach, not sure anyone else does! It's a nice opportunity to learn and reflect. I was talking about how I got over my surgery by nurturing others. 5 years ago, after my operation, I went on a course with my mum and we became Barnado's volunteers, to help struggling mothers, and families. I was too sick to work, and I didn't really know what I wanted to do with my life. Pre op, lots of my hopes and dreams were pinned on the op working and me getting better and being able to travel, drive, go to uni or work like everyone else my age was. But obviously it wasn't to be so I had to form plan B. So in the meantime, for a few hours every week, maybe in the afternoon (so I could lie in), or in the morning (and then I'd come back for a nap), I would go and sit with these women who were really struggling. Women who were being abused. Women who were alone. Women who had children with special needs and were taught in their culture that this was a curse from God. One woman had newborn triplets and a husband overseas. Some needed a hand, some needed emotional support, most of them just needed a friend. The thing about this experience was it put everything into perspective for me; it made me realise how everyone has something going on... Losing myself through helping others made me realise i am not fighting this battle alone. Over the last few weeks, I have been enjoying chatting with people following my story on social media. I like the fact that I can talk about my epielspy, to anyone now. I don't mind wearing a bracelet that says that I have epielspy, I don't mind it being part of who I am. I like that I have changed in this way. It's amazing to hear stories from other #epilepticmoms please keep sending them to me.

Baby girl is still chatting in her cot, still not asleep after all that ramble...! Better go and make this nap happen x

MOVING WEEK

This week has been crazy! We got the keys to our new home and we have been renovating! So fun but of course SO exhausting! I wish I could be more my mothers daughter; my mum, Nina Langston is a workaholic. She can't stop. We both like to get things done perfectly, and immediately. So with the house renovation, I feel kind of bipolar. Like, my mind is telling me no, but my body... It's telling me yes (only in reverse.) My mums genetics are screaming 'WORK WORK WORK', and the sensible, responsible (epileptic) side of me is like, 'take your time or you'll get sick.' It's that same old frustration, knowing that you could be doing something in double the time, but having to be ultra careful.

I did over do it, and I suffered the consequences which was a couple of nights of painful twinges and extra meds. I rested for a bit, now I'm 'fine.'

(Feeling as rough as I look, but excited to be getting our DIY on.)

The thing that upsets me, is that yes this epilespy effects my everyday life, and no I don't get a break; nope, not even on moving day, or on my wedding day, or through pregnancy (another chapter, another time) but I think that is the core of why it sometimes gets to me and why I'm letting out all this emotion right now. Because it's tiring being tired.

Have you ever wondered how they measure epileptic electricity? Because, they can't always tell you have a condition from an MRI or CT scan. So throughout my childhood and youth I underwent some other testing; PET scans and CAT scans, but the one I had to have most frequently was the EEG. The test itself isn't the worst, but the circumstances they put you though kind of reminds me of old school medicine. You know when they used to give patients electric shocks. They don't do that, but they do glue electrodes all over the head and then sleep deprive you for a week to put your body under the most possible pressure to cause a huge seizure. As you can imagine I developed a fear of the EEG. As if the fact that the epilespy is in the fear department of the brain - excuse my non technical terms, but when I was 16 something traumatic happened to me.

(This is what an EEG screen looks like, the red being a minor seizure)

(Here you can see the probes - not very fun being like this for over a week! For some people even longer!)

It was summer in the Oxford John Radcliffe Neurology Department, having EEG testing to try and determine whether or not, the partial seizures I had been experiencing were in fact epileptic, and where abouts in the brain they were being triggered from. They put probes on my head which connected to a screen that showed my brain waves. I was monitored for a week in a room that I could not come out of, with a camera observing my every move. There was a nurse outside who had to watch it constantly. The point of it is to record what happens to my body and my brainwaves at the same time.

 I had a buzzer (you know the emergency buzzer you press when you're going into full labour etc) incase I felt a seizure coming, we call it an Aura. They told me to press it everytime I had an incident so they could track it on the recordings. It was embarrassing because it was SO loud, woke up the whole ward.

 They took me off my medication and sleep deprived me so the seizures would start. Naturally it was uncomfortable not being able to sleep, but nothing a few box sets couldn't help. The real discomfort was when the seizures began, I can describe it best as every ligament and muscle in your foot being pulled so tight, that it feels as though it's going to disconnect from the rest of your leg. Every 5, 4, 3, 2 minutes. Eventually it will happen several times per minute. Screaming until I get so used it that screaming doesn't give any kind of relief. So the night before I was due to be discharged, I was feeling pretty horrendous. I actually felt worse than I ever had done.

It's 12am and I am having bad seizure, I push the buzzer - nobody comes. I push the buzzer again - nobody comes. I get up and out of the bed - i crawl to the door to see if the camera is even following me. Nobody is watching. I go to my bathroom and look in the mirror. I remember thinking something really weird, I just didn't look like me. I looked so yellow and pale, my eyes bloodshot, heavy bags underneath.

I went back to my bed and called my brother. I told him that I was having constant seizures an no one was coming. I said I was petrified because I knew the generalised seizure was coming and I didn't want to be unconscious, alone and fall out of bed and hurt myself. I was a mess.

He read to me for hours and we said prayers over the phone, but no matter what comfort he gave me, I told him I thought I was going to die that night. He said I was going to fight, and when I got off the phone I was going to face my fear and if that meant having a generalized seizure I was going to have it and ask God for the strength to get through it. He told me he would get to the hospital as soon as possible. He didn't understand why the nurses weren't coming in when I was literally screaming out for them.

We hung up the phone and for about an hour I continuously prayed; 'please, God, if i'm going to have a fit just let me have it and don't let it be a scary one' ... 'please let me be strong enough to get through it' ... 'please father i'm scared' ... 'please let it happen now so i can sleep'. It was a moment in life where the pain was too much to bear; you never know how strong you are until being strong is the only choice you have left. 

 
At 5am my body was attacked by the most powerful tonic chlonic seizure i've ever had - my body spiralled completely out of control however somehow, I didn't feel a thing. It was a surreal experience. The nurses finally decided to come in. I was completely unconcious, couldn't say or do anything, however I could see them. I remember them shouting and fiddling with my IV. I remember them pushing the bed down flat. I could also see the dawn creeping through the night into my window. I didn't have any scary thoughts, just peace, comfort and relief that It was finally happening and I could then rest. Because it was happening so differently, I still kind of felt like I was dying... Because I went into dream land which has never happened before. Hours and hours later I awoke to my mum and my brother. Low blood pressure. Destroyed. But totally alive. God was on my team that morning. 

When my mother asked to watch the DVD of that night in hospital, they didn't let her. They said it was too horrific, too pitiful to possibly watch. The hospital staff were completely ashamed about what had happened. From that moment on, I lost all trust in the nurses that took care of me, and my mum slept by my bedside. 

To this day, we do not have a diagnosis for the sudden paralysis in my leg, after multiple tests. However when they develop into jerking, they are known as myclonic seizures. I haven't had an EEG in a while. I'm glad about that. I teared up whilst writing this, I think because this is one of the experiences that has scarred me so much, and left me with such terrible anxiety. I don't want to make you sad. But it's part of my story, and without the scary parts it's like a puzzle with missing pieces. Keep reading and sharing lovely people. X

My epilepsy and me; past & present.

'Trust you to get tonsilitis in the middle of summer' said my Dad (he's been dying for a mention). I have had tonsilitis 20 times within 20 months. The thing people don't get is, being chronically sick doesn't mean I have seizures non stop. Sometimes I do, but most days I don't. The pain that affects me day by day is caused by the side effects of the drugs that I have to take, which I have been taking for about 15 years. When you take ridiculous cocktails like I do, over prolonged periods of time, the immune system starts to shred, and I become susceptible to everything. 

This week has been interesting. I have found since publishing my blog people are starting to ask questions, and understand a bit more just after only two posts. I'm so happy about this. I also think I am starting to understand myself a bit more. Somebody asked why, if I had been feeling this way the whole time, did I never speak up? Apart from the fact that you can't get a word in edge ways in this crazy family of mine, the truth is, saying 'I don't feel great today' or 'I'm really tired' becomes just as boring for you as it does for me. There is nothing you can say, or do that can take the pain away, so why not distract me instead? I can put a brave smile on and grin and bare the pain, while we have some fun! I have become so used to doing this. As long as we have a mutual understanding of my capacities, and you are perhaps aware... I won't feel so guilty if I have to say 'I can't come tonight I'm too sick.' 

I got talking to an old friend at a bridal shower on Saturday, 'I was so naive.' She said 'I just thought epileptics had their fits and got over it. I didn't realise there was so much pain in between' Hannah Bain, Acupuncturist. I was fortunate enough to spend a sunny morning with Hannah (aka the witch doctor) jabbing me with needles with some hope that acupuncture treatment would relieve some of the intense pressure in my head, which is a daily occurrence and an accumulation of both post surgery migraine and side effects from heavy medication namely, eslicarbazephine, my staple. Initially I didn't feel very different, however during the week I noticed a slight increase in energy which was interesting. Hannah is incredibly talented; she was able to pin point organs in my body ie my bladder which were not processing as they should be, without me even mentioning the fact that my bladder got messed up when I was pregnant. I have a lot of faith in Hannah, but we also discussed the fact that my liver is processing this medication on a daily basis, and it is tricky to counteract, she believes acupuncture will still relieve some of the pain; I'm interested in any form of treatment that will lighten the load, so bring it on.

Check out Hannah's website for more info: http://acupuncturebyhannah.com/

So enough of this week, back to the beginning. I was telling you about these 'episodes' in my leg, and how the doctors thought it was all in my head. I finally had an MRI scan, they found a 'legion in my cerebellum', causing another uproar of worry. The plan was to keep an eye on it, as the doctors believed it was too deep within the brain to remove, and possibly some scarring or bleeding i've always had, completely unrelated to epilepsy or the attacks I was experiencing in my leg. I find that a very strange coincidence, but I guess if you gave everyone in the world an MRI, you'd find some weird and wonderful marks you might never have even known was there. They could not tell I was epileptic from the MRI, so I had to undergo more tedious tests that I will write about next week. 

I was worried about this legion; I had watched my dad survive a brain tumour and remembered the trauma it caused our family. But because I still felt so normal and alive, I think it made me go into subconscious denial about the possibility that this was happening to me. As a teenager I was blessed with a positive attitude, I didn't let my leg affect my daily life. However it got to the point where I was oblivious to the fact that there could be anything wrong with me - because you never think it will be you, do you. My parents were well aware things weren't 'normal' but they kept their fears and concerns private and I'm grateful for that. 

So we still did stupid things that kids do like go to the beach in the winter. This is my friend posing while I'm having a seizure. This is how frequent and normal it was. This is real, but it is not normal.

Back then, sickness wasn't as much of a chore because I didn't have the same responsibility as I do now. However, epilepsy taught me to take responsibilty at a young age. I couldn't party like they did, even though I tried. I went through school as normally as I could - spent a lot of time with my head on the table or resting my eyes! But I somehow thought everyone felt as shattered as me! My friends were, and still are brilliant about my condition. They would come visit me in hospital, and really bent over backwards for me. They actually gave my leg it's own name, i don't remember the circumstances but my leg was reffered to as 'Sally' for some reason.

As the years went on, my condition worsened; I acquired an unbelievable fear of generalized seizures. Later we found out that this terror that caused me to have 'pre seizure panic attacks', was because the epilepsy is in the trauma department of the brain - where all nightmares and fearful thoughts are stored. Hence why Alice in wonderland and all these freaky fictional characters come to mind, mid seizure. Not the most ideal place for my epilepsy to be hanging out.

Despite all this, I somehow managed to keep strong. I wish I was as strong now, as I was then! What's with that?! By the time I was 16, I had this crazily immense faith... I just had to believe... I was so scared whilst having an attack, who else could I scream it out with, but God? I had to know that I was not by myself during those dark and lonely hospital nights, the ones where pleading with God to take away my pain and fear was all that was left to do. And yep, i do still have epilepsy, but i don't think Gods forgotten me just yet. This is real. Past and present. Stay tuned. X