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.
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.
