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

Let's go back in time.

After my first post, I had a phone call from my Grandmother (Nonna). She said that I'd 'held it in for so long and now it's all coming out.' I mean, she's right I guess! Either that or I've only just found the guts to post. This was never meant to be a moan. I know there are people all over there world suffering so much more than I am! But what I do believe is that just because I don't have cancer, i still have the right to recognise what I am going through, and that, even though most of the time I don't feel it, I am strong too.

I also figured that my friends are both old and new, some of you guys know all the itsy bitsy details, and some of you not so much. I want you to know that this isn't about brain surgery. Brain surgery was just an event, an operation, one that thousands of people have. It's a trauma that effected me and left me with scars and really horrible memories. But in the grand scheme of things, this is about the chronic condition, epilepsy. [Now there's an interesting topic.] Living with it, dealing with it, enduring well... And somewhere along the line, finding happiness.

Have you ever watched Finding Neverland with Johnny Depp and Kate Winslet? It reminded me that when there is an event, a story must be told. If not for our children, then for our own freaky therapy. 

So, let's go back in time.

I was eleven, and late starting secondary school due to 2 weeks of non stop vomiting. We never were sure if it was just food poisoning or a more serious virus. After finally settling down, making a couple of friends and finding my way around a school that felt so huge to me, things were progressing. Then one day as I was waiting for the school bus to come, my right leg suddenly stopped working, and i couldn't move to hop on the coach. I remember holding onto my friend as this paralysis wore off, we just assumed it was cramp or something not too dissimilar and forgot all about it...

The second time effected me more, it was the end of one of those tedious assembly's; row by row we had to uncross our legs, get up, and depart. I got as far as getting up, but instantly fell back down - quite the embarrassment. Naturally the hormones started flying and I burst into tears - I was so confused as to why my body wasn't responding to my commands. This control, this lack of control. One second you have complete control of your body, then it's taken from you, like the flick of a light switch. You're in the dark, and you have to live in precaution, because at anytime, you could lose it. My parents took me to the paediatric doctor, but they were just as confused, and told me it was psychological, just an 11 year old who wanted to skive off school perhaps.

The 'episodes' continued, on an unpredictable basis. I remember doing high jump for athletics, and everytime I landed, I would have to lie there for a few moments until the paralysis wore off, and all the other children would have to wait for me, cringe. Netball was also a thing, if I tripped or someone stepped on my foot, 'my leg would go' - what does that even mean? But that was exactly what was happening, and that was the only way I could explain it. It was just a quirky funnyism that all my friends and family adjusted to. I used to say 'I've lost my leg' and someone would have to hold me for a few seconds while the paralysis wore off and then we would carry on as if nothing had even happened. I wish I knew what you were all thinking...

I had no idea at that time that I had this disease. I had no idea how much it would effect my future. I just thought i was having some kind of freak growing pains. It's weird, i guess I enjoyed attention as a child, I was loud and loved to have fun... But when you finally have this huge reason to get lots of special attention, you really do just want to be one of the invisibles. 

I like this picture of me and my big brothers. I can't help but think, why me and not them? (It's a pointless thought, but an interesting one nonetheless). I would never want them to be sick, and I would never trade my illness with anybody. But I aways wonder from a genetic point of view, and considering our environmental factors during childhood would have been virtually the same, why was I the weak one? Was i more accident prone? What happened to my brain cells.

I guess this all sounds kind of over dramatised. <why is she moaning about a twinge in her leg?>

Well the plot did thicken.

Christmas 2001 I was very poorly. I was having more episodes than usual and sleeping in my mum and dads bed because the pain was impossible to bare alone. I didn't want to be alone, I suppose I had some kind of aura, in that I felt as though something was going to go very wrong, and I just shouldn't be by myself. Instead of simply losing the feeling in my leg, my body was stiffening and jerking all down one side. At about 5am, I remember as my body jerked so intensely, it took over my brain as well as body; I felt this fading motion... I was zoning out, I genuinely thought the confusion was so strong I was just falling off the bed... into a deep dark hole... Like Alice in wonderland as she chased the white rabbit... I was Alice... and there were books falling on top of me, but for some reason I also heard Harry Potters mum - yes Harry's mum - screaming hysterically in my head, and to top off the freak show, a low voiced countdown... Which made me know, positively, when that countdown got to one, my life would be over.

- I may be partially unaware, but I'm well aware of how actually mental this sounds to you.

My life was not over. This is the power of the subconscious. This is real. This is actually what my mind did when it shut down. 

I remember thinking, this does not concurr with my religious beliefs!! I remember thinking, death isn't supposed to be like this, it's supposed to be peaceful, comforting and familiar. Where are the pearly gates, I thought. That was my first generalised seizure. It is a hellish experience, one that no description can do justice.

 I woke up to a paramedic putting an oxygen mask on my mouth - I gave her a good whacking. I was crying and confused, shaking a little still, lips still blue, bitten Tongue, wet the bed. I was taken to our local hospital where I got drugged up and slept. After this, my health got taken seriously, and I was referred to a paediatric neurologist in Oxford, who decided my leg episodes were In no way epileptic seizures, and they believed the fit I did have to have been a 'one off.' 

I wish.

It's bedtime so I have to put my tale on hold (because I'm epileptic and can't do all-nighters) but you just have to know, this is real, guys. This happens to some people thousands of times a day. They are in and out of consciousness and have to accept that as their lives. Our lives. I am one of them. Let's raise some awareness. 65 million people worldwide currently live with epilepsy. Each year at least 200,000 people are diagnosed with epilepsy. In two-thirds of patients diagnosed with epilepsy, the cause is unknown. This is crazy to me, and I know I can't change the stats... But I can try to help you understand what it's actually like, to be in my head, to live this way. N'night xx

Accept today.

It's been five whole years since I had open brain surgery! It was a summer so vivid, yet so blurry. Words can't describe it, but when I close my eyes, I can remember so many different sensations: voices of visitors, the taste of oramorph, how uncomfortable my skull felt against the pillow & the smell of the recovery unit. Waking up and seeing my parents, always a comfort - my eyes were like slits - so puffy, I could barely see. Then falling asleep, and hearing them creep out ... There's so much loneliness in hospital, I was one of the lucky ones. It's a lot for a 20 year old to go through. Some experiences were so terrifying they often actually haunt my dreams. 

The other day when I realised it had been five years, I was suddenly swamped with emotion. Present emotion and past emotion are so very different. At the time I felt so strong minded, I felt like my spiritual and emotional 'strength' could over power the intentions of my body. This was not to be. The operation did not work. My surgeon came to me very early in the morning and told me, there was nothing that he could do to help me, and that if they tampered with my brain anymore I could have a stroke, be left paralysed, lose my memory - and the list goes on. I never liked the man much, but in that moment he was so sincere, and so sorry. At that point, I understood, but I was too physically sick to move, let alone grieve. That came later. The crazy thing, though (and I put it down to immense love, prayer, and a mother who is a true guardian angel) was that I somehow stayed strong; when my dreams of being and feeling normal were shattered into a million pieces, I held onto this hope that things would be normal, one day. After you go through a traumatic experience, counselling is necessary, however my arrogance and immaturity wrote it off quite quickly; I just kept telling them that I knew I would be OK, one day. 

What I did not know was, that me being 'ok' or 'normal' or 'cured', didn't mean that I would be sickness-free. It didn't mean that I would ever be free from pain. It meant that I would take on and ACCEPT my trials and heart break just like all of you do. It meant that even though it is often raining in my little life, I would somehow learn to dance in the rain. <Look at me now.>

I have managed to work with what I have, and that is the healing process that I never understood when I was too busy thinking up ways to change what God had given me. And God has given me so much. 

Am i saying it's easy, heck no. I am sick more than I'm healthy and I cry too much about that. Even though my body appears to work, most days I am in chronic pain, that's the truth. I have come to ACCEPT that even though I take a nap when my baby does, instead of doing chores, that doesn't make me less of a mum or a wife, It just means I am taking responsibility- otherwise I can't function. If I ever seem unadventurous, overly structured and routined, there are many reasons why;

Tonight we went to the New Forest water park. We had such fun with family jumping in and out of the lake, on and off inflatables. I was in a lot of on and off pain, and most of the time I was in the water I couldn't feel half of my body. I don't regret doing it, it was my dancing in the rain moment, and I probably won't be that silly or reckless for a very long time. Sometimes I have to do these things to have special moments with my husband, do you understand? Whilst feeling abnormal among my fit and healthy relatives, I would have felt more left out had I not participated. Even though it's frustrating, I am trying not to let this thing rule me; accept it, laugh at it, one day I hope I can even be grateful for it. Not sure when that day will come....

With hindsight, knowing it would fail, would I have surgery on my brain again? Of course. We always had to know. Never live life thinking 'what if' - my sister in law once told me, at the end of the day, 'hair grows.' There had to come a point where I was told, you are Madeline Langston, and you have epilepsy. Deal with it. So that I could stop living in a world where I was merely epilepsy Langston, disintegrating gradually. Now I have a point, a purpose, a vocation, a family. Even though it's so much harder than sleeping all day, and feeling numb, I'm a mamma and there's more to me than just additional electricity in my brain. 

Even though I've accepted the sick life, it does not mean that I am comfortable with it <I am eagerly awaiting a cannabis trial!>. I just feel today, and tomorrow and every daily challenge I face is a battle between self acceptance and denial, and today I choose to accept. Because, what else. 

Be understanding to those around you who might be suffering, smiling doesn't mean they are ok. If you know anyone that suffers with epilepsy, or any other chronic condition, please share this post. I don't know why I decided to write this today... But I felt it. I have had this blog for ages and never once shared with my own social group, not even my husband. It's been 5 years, enough time to know that I don't mind talking about it, and I want people all over the Internet who are about to go under the knife to know the true extent of it... Or even just to relate to someone else a far who is suffering with their condition. We'll be going on a journey back in time. More to come x