My epilepsy and me; past & present.

'Trust you to get tonsilitis in the middle of summer' said my Dad (he's been dying for a mention). I have had tonsilitis 20 times within 20 months. The thing people don't get is, being chronically sick doesn't mean I have seizures non stop. Sometimes I do, but most days I don't. The pain that affects me day by day is caused by the side effects of the drugs that I have to take, which I have been taking for about 15 years. When you take ridiculous cocktails like I do, over prolonged periods of time, the immune system starts to shred, and I become susceptible to everything. 

This week has been interesting. I have found since publishing my blog people are starting to ask questions, and understand a bit more just after only two posts. I'm so happy about this. I also think I am starting to understand myself a bit more. Somebody asked why, if I had been feeling this way the whole time, did I never speak up? Apart from the fact that you can't get a word in edge ways in this crazy family of mine, the truth is, saying 'I don't feel great today' or 'I'm really tired' becomes just as boring for you as it does for me. There is nothing you can say, or do that can take the pain away, so why not distract me instead? I can put a brave smile on and grin and bare the pain, while we have some fun! I have become so used to doing this. As long as we have a mutual understanding of my capacities, and you are perhaps aware... I won't feel so guilty if I have to say 'I can't come tonight I'm too sick.' 

I got talking to an old friend at a bridal shower on Saturday, 'I was so naive.' She said 'I just thought epileptics had their fits and got over it. I didn't realise there was so much pain in between' Hannah Bain, Acupuncturist. I was fortunate enough to spend a sunny morning with Hannah (aka the witch doctor) jabbing me with needles with some hope that acupuncture treatment would relieve some of the intense pressure in my head, which is a daily occurrence and an accumulation of both post surgery migraine and side effects from heavy medication namely, eslicarbazephine, my staple. Initially I didn't feel very different, however during the week I noticed a slight increase in energy which was interesting. Hannah is incredibly talented; she was able to pin point organs in my body ie my bladder which were not processing as they should be, without me even mentioning the fact that my bladder got messed up when I was pregnant. I have a lot of faith in Hannah, but we also discussed the fact that my liver is processing this medication on a daily basis, and it is tricky to counteract, she believes acupuncture will still relieve some of the pain; I'm interested in any form of treatment that will lighten the load, so bring it on.

Check out Hannah's website for more info: http://acupuncturebyhannah.com/

So enough of this week, back to the beginning. I was telling you about these 'episodes' in my leg, and how the doctors thought it was all in my head. I finally had an MRI scan, they found a 'legion in my cerebellum', causing another uproar of worry. The plan was to keep an eye on it, as the doctors believed it was too deep within the brain to remove, and possibly some scarring or bleeding i've always had, completely unrelated to epilepsy or the attacks I was experiencing in my leg. I find that a very strange coincidence, but I guess if you gave everyone in the world an MRI, you'd find some weird and wonderful marks you might never have even known was there. They could not tell I was epileptic from the MRI, so I had to undergo more tedious tests that I will write about next week. 

I was worried about this legion; I had watched my dad survive a brain tumour and remembered the trauma it caused our family. But because I still felt so normal and alive, I think it made me go into subconscious denial about the possibility that this was happening to me. As a teenager I was blessed with a positive attitude, I didn't let my leg affect my daily life. However it got to the point where I was oblivious to the fact that there could be anything wrong with me - because you never think it will be you, do you. My parents were well aware things weren't 'normal' but they kept their fears and concerns private and I'm grateful for that. 

So we still did stupid things that kids do like go to the beach in the winter. This is my friend posing while I'm having a seizure. This is how frequent and normal it was. This is real, but it is not normal.

Back then, sickness wasn't as much of a chore because I didn't have the same responsibility as I do now. However, epilepsy taught me to take responsibilty at a young age. I couldn't party like they did, even though I tried. I went through school as normally as I could - spent a lot of time with my head on the table or resting my eyes! But I somehow thought everyone felt as shattered as me! My friends were, and still are brilliant about my condition. They would come visit me in hospital, and really bent over backwards for me. They actually gave my leg it's own name, i don't remember the circumstances but my leg was reffered to as 'Sally' for some reason.

As the years went on, my condition worsened; I acquired an unbelievable fear of generalized seizures. Later we found out that this terror that caused me to have 'pre seizure panic attacks', was because the epilepsy is in the trauma department of the brain - where all nightmares and fearful thoughts are stored. Hence why Alice in wonderland and all these freaky fictional characters come to mind, mid seizure. Not the most ideal place for my epilepsy to be hanging out.

Despite all this, I somehow managed to keep strong. I wish I was as strong now, as I was then! What's with that?! By the time I was 16, I had this crazily immense faith... I just had to believe... I was so scared whilst having an attack, who else could I scream it out with, but God? I had to know that I was not by myself during those dark and lonely hospital nights, the ones where pleading with God to take away my pain and fear was all that was left to do. And yep, i do still have epilepsy, but i don't think Gods forgotten me just yet. This is real. Past and present. Stay tuned. X