Day 187.

I'd like to share something with you. Something for you all to read. Something to maybe inspire, encourage or educate you. Something for someone, somewhere.

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Today was the kind of day where you are overwhelmed with relief but, at the same time, shattered by an almost life changing realisation. Today I was given news of which I'd known for years but not been 100% sure of. Today I found out what was about to catapult my world in to a new dimension.

It was time for my hospital appointment. I've never been one for the doctors or hospitals. Of course, I admire the incredible work they do and will forever be grateful to every person who, in this sector, has helped me throughout my life. I don't particularly like going to see these people because usually they bring with them not so great news. My appointment today was one I had been waiting for my whole adult life. At 11 years old I went through this and at 24 it's all to happen again.

I can remember the first time it happened to me. I was standing in the kitchen talking to my mum and suddenly it hit. This huge wave of numbness. I felt as though I was out of my body looking in at the situation that played out. I felt out of control. I couldn't feel my hands, my head was hazy and no matter how much I held on to my head, it didn't stop. A few minutes later and this sensation had disappeared to nowhere. I felt tired, heavy, panicky. I asked my mum what was wrong with me. She didn't understand what I was trying to explain. I couldn't explain it. I didn't have the words to fully explain to someone what it was like. I still don't. 

After being taken to the doctors I was referred to a neurologist where I was then taken away for an EEG. At such a young age it was a scary procedure. A nervous, shy young girl connected to machines, wires falling lazily from her head whilst flashing lights irritated her eyes. It didn't make me have an 'episode' though and it worried me. What if they couldn't find out what was wrong with me? What if I was just abnormal? The test results came back and they were certain I had epilepsy. That scary word no one particularly ever wants to hear. That horrible, terrifying realisation that something is wrong. In your head. No one wants that.

13 years later and I pluck the courage up to return to my doctor to finally put an end to years of what I'd describe as suffering. Hand on heart my 'episodes' can be some of the scariest moments I've ever experienced. 

I went to see a neurologist today who's overly laid back and almost accusing nature took me by surprise. I expected him to be friendlier, less aggressive, less blunt. I sat down and he merely said 'so what's wrong with you?' In my head I was screaming 'WELL THAT'S FOR YOU TO TELL ME ISN'T IT?!' The panic set in and I knew, as I got hotter and hotter, that an 'episode' was on it's way. I covered it up well. That had become a common practice for me nowadays. I blag my way through them. Not well mind. I tried as hard as I could to explain what happened. I was struggling as much as I had done when I was 11. The words were still muddled. Just pointless words falling from my lips without being completely coherent. I panicked more and more. He told me it was stress. He said I must be having a really stressful time to which I replied 'maybe now and again but not solidly for 13 years.' He understood me from then. I found the word he was desperate to hear. Vacant. With a click of his fingers he looked at me and nodded. That was what he wanted. From there he told me that I did, indeed have epilepsy. Temporal Lobe Epilepsy to be precise. (After a mass text to friend's and family my iPhone corrected it to Temporal Love Epilepsy and I quite like it). Just click the link if you want to know more about it.

On leaving the consultation room I was on cloud 9. He'd asked if I wanted to have tests to which I agreed quickly. As much as they scared me, I wanted full, complete, concrete evidence that this was the condition I was going to be battling for years to come. He had diagnosed me within 5 minutes and was more concerned with why I wasn't aware that I have been noted as a sufferer of epilepsy for so long. It was always explained to me as something I would grow out of, something hormonal. Little did I know. So for all these years I have described my condition as 'like Epilepsy', I can now be bold and say 'I suffer with Epilepsy'. 

From leaving the room I could no longer drive, I could no longer be home alone and doing simple tasks such as having a shower or cooking. I had to be with someone all the time for tasks that once seemed so simple. The main reason for this is, because with this type of epilepsy, I could have full on seizures (Grand Mal)at any time which could result in me drowning if I fall unconscious in the shower. It's really scary.

I want to be fully honest with you all about this because it is something that has been part of me for over half of my existence on this beautiful planet.

My cloud 9 moment only lasted until I got home. I was back in my 'space', my things scattered on the floor of my bedroom, my letters strewn over the bed where I had been hunting for my appointment slip earlier in the day. Everything was as it was when I'd left but in some ways everything had changed. From leaving my house to returning I had become, almost, a different person.

I have been promoting the positive mind set for some time now and this 'revelation' had come as a shock (despite me knowing, in some way, already). Back in my room, I sat. I tried to watch vlogs of my favourite beauty/fashion bloggers, I tried to read, I flicked through my fashion magazines. Nothing was shaking the dread in the pit of my stomach. For some reason I was worried people would treat me differently. I was scared I'd be labelled. 'Hannah who can't keep her head together'. 

For those of you who don't know me well my memory is usually something of amusement. My terrible memory has gotten me in trouble before but it's never been something I could do anything about. At least now I know it's part of my symptoms, it's all joined in, along with my constant tiredness. Everything had fallen in to place yet I was still scared.

The fear was irrational really. Nothing dramatic had happened. I have been living with this for so long and now I finally had a name. The name I had been waiting for. Praying for. Hoping for. Now it had a name it scared me more. Usually it's the things that aren't familiar that scare us more. Now I was staring at it straight in the eye. I knew it's name. 

I am still trying to be positive. Not only was my car on it's last legs anyway, I also loved getting the train. Now I won't have to pay tax, insurance or for petrol, I will have more money for shoes. And lots of them.

If you or someone you know has anything similar and you'd like to know more about my condition, my symptoms or anything related to this blog please feel free to contact me. Your comments are always loved and welcomed on my blog or you can find me on Twitter and we can have a chinwag.

Today has re-enforced my determination to get the most out of life though. This condition will not be my defining feature. I will not let it take over my life in the same way I haven't let it for these last 13 years. I may be afraid, I may be worrying but ultimately I have something to offer this world and I'm sure as hell going to give it.

Hannah xox

To everyone who knows me personally, I'd really appreciate it if you could pay attention to what I next write. By knowing some of this you may be able to help me if I have an 'episode' in your company.

If I do have an 'episode' when I am with you I really urge you not to panic. Please don't flap around worrying about calling an ambulance. I will be fine. If my 'episode' lasts hours then perhaps think about getting me help but if I seem to slip away, having you panicking around me is only going to make it last longer. I tend to either hold my head or put my hand to my head as it either starts or comes to an end. I zone out. Become unresponsive and appear dazed. I slip off in to my own little world where everything that is real becomes hard to believe. All I ask of you is to please be calm, keep talking to me and remember that I know what is best for me. Generally if I speak when I am feeling unwell it is a load of rubbish. Gobbledegook. Jibberish. So don't take offense. I appreciate everyone that has put up with me when I've been having an 'episode' in the past. You have all been amazing, I just hope I can still count on you now to ensure I don't end up in any serious trouble or in a terrible situation. All I ask is that you keep an eye on me.