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