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.