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