1

Epilepsy and Exiguity…

So Year-1 has been a tough one so far. This week, I’ve had to make some hard decisions. Whether they (or publicising them here!) will come back to bite me, remains to be seen.

Is it possible to miss what you’ve never had? I don’t think so. I think it’s possible to miss the idea of something, but if you’ve never actually experienced it, then how can you truly know what it’s like to miss it. For example, most who know me well, know that pretty much all I ever wanted from life was to be a mother. A combination of factors, maybe I’ll get to those later, have put paid to that. I don’t miss being a mum, I miss the factors that would have allowed me to become one. I have a niece that I don’t see. She’s just 3. I don’t miss her, how can I, I don’t know her? I have friends who don’t live near me that I miss desperately because I know what it was like when seeing them was just a case of a quick call, text, email to find out when they were free. With my niece, the exiguous relationship (and its a real stretch to even call it that) isn’t the one I thought we would have. I thought she would grow up and we’d be close. I thought we’d do the whole auntie/niece thing of days out, playing, fun, laughter all the things I’ve experienced with my god children and the kids of my friends. I didn’t bank on her parents not wanting the same thing.

I’m not a good role model apparently. I’m not a positive female role model. Let’s examine that. I work hard, everything I own is mine because I worked hard and earned it. I didn’t inherit money, a lifestyle or marry a rich man. I have a great job (whether I enjoy it is a completely different issue). I’ve travelled a lot of the world as an adult through choice. I wasn’t brought up in different places around the world that I couldn’t possibly appreciate because I was far too young. I love the idea of that kind of life, but it wasn’t mine. I chose where to go, how to pay for it and whether to fully experience it. I’ve had some fantastic travels with friends, lovers and by myself. I own my home. Yes, it’s mortgaged to the hilt, but that was the trade off I made as an adult and I’m not living beyond my means. My arrest record is non-existent, my drug intake is limited to those prescribed to me, and my alcohol consumption has never put me or anyone else in remote danger. I’ve never lied on an official document. I believe my friends would say I’m a good friend, they acknowledge my demons, but ultimately I’m not a bad friend. I contribute to children’s charities and animal charities. I’m a responsible cat-sitter and I’ve done more than my share of babysitting. I choose not be close to certain people in my life, but should I be asked, I will have a conversation to explain why. But you have to ask me to share my reasons for that and it has to be a one on one conversation. But, I’m not a positive role model. So, if I’m being judged as such, I can only think it’s because my judges have never bothered to ask me why I choose to have a scant relationship with certain people; or it’s because I have epilepsy.

I’m not perfect by any means. I hope those who chose me to God-parent, babysit for or look after their pets recognise that I’m just an adult. A good person, trying to get by in life, making mistakes (paying for them!) but that my imperfections are what makes me a unique individual. If my epilepsy is what makes me an unacceptable role model, then to be brutally honest, I don’t want those that believe that to be in my life anyway. Belief that such an affliction makes you a bad person is a reflection on the judge not those in the dock. If I’m a bad role model because of the relationships and depth of relationships with certain individuals, then please ask me about it before you condemn me because you have half a story from another party or because you just can’t understand it.

I don’t miss what I’ve never had. I wish I could. I wish I could change some circumstances, but it takes more than wishes and all parties need to actively involve themselves in that process. I’ve held my tongue for years now and I’ve reached a point where not putting it out there weighs more heavily on me than the potential consequences. There is not a single scenario I haven’t considered, but I will not be judged anymore.

0

Epilepsy and Clinomania…

The weird anxiety just won’t leave me alone. It’s kind of a mixture of that cold feeling of fear, the one that leaves you clammy despite the frigid blood creeping through your veins, a tightness across your chest as if you’re wearing an iron waistcoat that’s too small and a pulsing heart that’s beating too fast. I keep testing myself to try to make sure I’m compos mentis and to convince myself that a seizure isn’t waiting in the wings.

I just want to stay in bed.

I’m too scared to though. I have to keep pushing myself to make sure. Now, normally I don’t need much of an excuse to stay in bed, especially when it’s bloody freezing AND Sunday. But today, that felt sort of dangerous. So, I cooked. I cleaned. I cooked a bit more. I tried to study, but couldn’t settle to it. I tried to read, but couldn’t focus. I tried to write, but the words were too dark. I cooked some more. I tried to watch movies but couldn’t follow the plot. I tried to listen to music, but the sounds plucked incessantly on the wrong nerve. So, I cooked some more.

My fridge is full, my freezer is full. I’ve more soda bread than I know what to do with. Yet, there’s nothing I want to eat. We all have days when nothing sits right. I know that. I know there are those that think I’m just being daft and maybe I am. Those that think I’m just being dramatic and maybe I am. But I know that this feeling can precede a fit. And I know I’m not switched on enough to recognise the difference between this weirdness and the “real” weirdness.

I really just want to stay in bed!

Epilepsy can be such a sneaky little bugger! There are days when it feels like I could announce to the world that I’m going to have a fit, and nothing happens. Then there are days when I convince myself that I’m over-reacting, over-tired and then, bam!, I’m in hospital. There are days I get the feelings even more muddled and I want to package epilepsy up and mark it “return to sender” and take it to the post office. Where would it go?

Part of the anxiety, I know is down to an ongoing situation that I seem to be completely incapable of dealing with. It’s slowly coming to a head for me. Something has to give and I know it will be me that has to end the perpetuation. I feel like my hand is being forced and I don’t like it. It’s making me anxious because I know there isn’t going to be a good outcome. It’s a different kind of anxiety to the one that’s been invading my mind the past few days though. It’s sort of an acceptable anxiety because I know what it is and I know that I could do something about it, if I wasn’t so soft! But, this unease is different in nature. It’s darker and the core is invisible to me. I don’t know if the cause is epileptic in nature or if my terrors just feel the need to haunt me. To taunt me, knowing I can’t spot the telltale signs that a seizure is coming. It’s gang warfare in my brain. The acknowledged versus the unknown. Fear is hitching a ride with the unknown. It’s a terrible recipe.

Maybe I should have stayed in bed!

3

Epilepsy and Drilling…

My head turned to the left. I’m screaming. The chair scraped backwards. I’m on the floor. Contorting. My limbs are doing their own funky version of “should I stay or should I go?” and my brain’s confusion leads my muscles a merry little jig. The shooting stars and meteorite shower cascade from my cortex and then the light fades to grey.

Memory is fighting for position in my brain. The things I desperately want to forget are embedded deeply; the things I pray to remember leave a ghostly imprint but no detail.

Rock-bottom. Once you reach there, the only way is up. I’ve used the expression myself and I think I’ve only just realised what rubbish it is. Any driller will tell you there is no such place. But I suppose it’s a different metaphorical place for everyone. If you keep going through the rock, does that bring you closer to the light? To your source? To your essence?

It’s been a strange day. My legs are itchy. I don’t feel grounded. The anxiety is growing in my chest and the way forward is hidden in the weeds. Yet, there is an undeniable truth to it all. The life I’m playing out right now, is not the right life for me. Today there is a feeling of failure that I can’t quite trace. But, does having a reason for the feelings really matter? Shouldn’t we all just do what we want to do? Do we always have to have a reason? A reason why? A reason why not? I don’t know. I feel trapped between what was instilled in me growing up and the desire to open the cage door and fly free. The disappointment of those who brought me up versus the devastating disappointment of a life half-lived.

Maybe the universe depends on the fact that not everyone does exactly what they want to do, when they want to do it. Would that lead to anarchy? I’m not sure. Right now, this very present, I know that I’ve sat on the sidelines of my own life for fear of upsetting or disappointing those that I neither want to upset or disappoint. But, the feelings in my chest and the energy in my brain is pushing me to acknowledge that I’ve not chosen wisely. Many paths are closed off to me now. There are many more that are open, that can only be forged by courage. They are my paths and it really doesn’t matter if someone has trodden them before or not.

I’m not finding it easy to be a friend right now. I feel guilty about that. I feel guilty because this blog post is all “me, me, me”. (then I remembered it’s my blog and it actually is about me!) I’m finding it incredibly hard to be supportive of others when I’m struggling to be supportive to myself. My mouth is blurting out partially formed uncensored thoughts and my fingers are writing what my mouth is saying. There’s a foggy part of my brain that’s screaming at me to think before I speak, but I just don’t seem to be able to do it. That’s partly how I know that this feeling of unease, anxiety is not going to just get up and go, until I get up and go with it.

So, perceived pain of others versus a tiny death inside me daily. If I found it at all possible to communicate with those people then I would not be here, in this heightened state of anxiety, now. Yet, I tie myself in knots over how I think they will react, rather than have the gumption to have a difficult conversation. Fear. Fear of upsetting others. Which on the face of, there is nothing wrong with; but I’m slowly squeezing the life out of myself.

My health “issues” having been getting used as a reason why certain things in my life can not happen. Not by me though. By others. Having epilepsy is not the reason why I’m struggling to break free from these feelings. Having epilepsy is not a reason to do nothing. There is a jigsaw piece in my hand. I’m turning it every which way without placing it. I know it fits. It’s a tiny piece, but it’s possibilities are endless. Until it’s placed, the rest of the pieces will elude me. Was I playing truant when courage was handed out?? Was I in class but not listening??

By a bizarre quirk, Closer to Fine by the Indigo Girls is playing. I like the lyrics to that song. And they seem to be pertinent to how I’m feeling right now.

1

Epilepsy and Hope renewed…

I got a letter from the hospital today. When I saw the envelope I didn’t want to open it because I thought it was just going to be the written version of last week’s session. It wasn’t. It was an appointment with the person at the hospital who can perhaps help me find the link between my epilepsy and my sleeping problems! Yay!

Year-1. Renewed hope. A tweak in attitude. The continued support of those around me. New beginnings. In order to have the rainbow, you need to have the rain. I can’t quite remember who said that (memory issues are still abundant!), but I have the feeling it was Dolly Parton! Feel free to correct me if I’m wrong! The point being that, to truly appreciate joy, experience wonder, or find peace, then having endured the opposite is what makes that possible. Of course, you can feel all of those things anyway, but the experience is sweeter, sharper, and more potent if you’ve experienced the opposite. So, should we be actively looking for pain and problems??

I believe, in the course of living life, pain and problems present themselves naturally as time passes. How we choose to deal with the issues is up to the individual. That said, our own actions occasionally (often) exacerbate the issues that knock on the door to our life. I haven’t always viewed my life, life itself, that way. It’s often easier to push responsibility onto another, either actively or passively, rather than shoulder the consequences or confront the situation. I know I’ve done that in the past. I know there are certain situations in my present that I’m struggling to confront for fear of the consequences. But, this is Year-1. The past is gone, the future isn’t promised and all there is, is the present.

When I think about my childhood, I think about my Gran. Ever-giving. My brother and I would spend a few weeks in the summer with her during school holidays. She took us to Portobello beach, the zoo, the castle and gave us endless stories to laugh about well into our adulthood. She would knit us jerseys that implied she thought we had pea-sized heads and arms like an orangutan! We often talk about Wee-Eenie. She was hospitalised after a stroke in 1998. My brother and I visited her every single day the entire time she was in hospital. He would feed her, I would make sure she always had clean clothes to wear and would read to her. Towards the end, she didn’t really know who we were. There was not one day that one or other of us, or both of us were not there. It wasn’t easy. She had provided for us unconditionally; I had lived with her when I first moved to Scotland. It was the very least we could do. The nurses were amazing in the hospital, they got to know us and they pretty much allowed us to come and go as we pleased. I’m grateful for that. Her main source of nourishment was given to her through a tube. The day came when the decision had to be made as to whether food should be withdrawn. My Dad made the decision that it should be, over the phone with the hospital, and my brother and I went together to formally request that the feeding tubes be withdrawn. The hospital had assured my dad that there would be someone at the hospital, a nurse or doctor that we knew, who would be there to see us and who would explain the procedures. That’s not quite what happened.

When we arrived on the ward, there was not one nurse or doctor there who either of us had seen before. We had to explain who we were and why we were there at that time. We stood next to my Gran’s bed. Without a word of warning, the nurse pulled the tubes out of my Gran and just walked away. My brother said to me “I can’t be here” and bolted from the hospital. He never went back. We both felt like we killed her. I stayed, but I understand why he didn’t. That was a Tuesday evening. She wasn’t lucid very often, but she did have moments. She said to me one evening, that she would see her birthday, “but I’ll not see past it”. The following Saturday at 5.30am the hospital phoned me to say she’d had a bad night and I went straight to the hospital. Wee-Eenie died on October 17th 1998. Her 85th Birthday.

I often wonder if my Gran is looking down on me and is proud of what she sees. It is my Gran’s side of the family that possess the epilepsy gene. One of my cousins had a seizure when she was a teenager, but nothing since and 1 episode is not enough to be classified as epilepsy. To my knowledge, I’m the only one of my family that has/is displaying the telltale signs of epilepsy. I’m the special one…When I reflect on the time I knew my Gran, the lady I remember was one with a great sense of humour, a great giggle, a ready smile and a generous heart. The memories of her make my soul smile.

My Year-1 is going very well so far. I’ve made some tweaks. I feel hope. I feel a sense of connection to my present that has been absent a long time. I feel joy in my heart. We are each of us responsible for our own happiness. It is not the job of someone else to make me happy. It is up to me to actively seek out that which brings me joy and peace. I know what those things/people are likely to be because I’ve experienced the opposite. The pain and struggle of the past, will make the joy of the present and the plans for a future not promised, sweeter.

2

Epilepsy and Year-1

So, it begins again. 2015 will see the battle of the meds. Drugs fight dirty.

Today saw the first visit of the year to my consultant. Every time I see him, I leave feeling worse than when I arrived. He is an odious little man. He has no answers and he almost seems proud of that fact. I want answers, of course I do. Do I think there is an immediate answer for every ailment or symptom? Of course I don’t. What I do expect is a commitment to try to find answers and try to help me manage my condition successfully. Is that too much to ask? I left the hospital feeling despondent, hopeless and fearful. The tears began on the bus.

2015. What will it bring? Well, I know now it’s going to bring changes to medication. I know that the weaning off process will begin soon and the introduction of something different will begin. It’s not a short hop, it’s a long haul. It’s a battle I’ve fought many times and it’s a battle that’s brought me to my knees many times. But, who knows, maybe this time will be different. Maybe. It always looks like rain, especially if you look at the clouds. I heard this somewhere a while back It’s true though, don’t you think?

Epilepsy. It’s a piece of my jigsaw. It’s woven into the fabric of my life. It’s a special thread. All the other threads are bound to it. Sometimes the strand is thin and easily supported by the other threads and sometimes the strand is coarse and it’s hard to hold it in place. 2015 will be an exercise of pulling the threads of my life into position to support the rough battle that’s coming. I’ve done it before and I’ll do it again.

A new year should bring new hope. It doesn’t matter when that new year starts, it doesn’t have to be January 1st. After all, as I’ve said before time doesn’t exist, only timepieces. So, as the dark of what we call night deepens, it will without fail, be followed by a period of light. So it is with life. We only know joy because we’ve lived through pain. We know peace because we’ve experienced struggle. And so it will be in 2015.

My mind and body have been through a lot. It’s the same for most people. There are few of us in this life who have lived untouched by struggles of some description. I owe it to my mind and body to fight the best I can for them. I have spent a long time seemingly putting my life into the hands of others. Making them responsible for my health. I always thought that I was doing the best I could for myself, but perhaps that isn’t true. Perhaps I haven’t shouldered enough of the responsibility for the shape I’m in?

This isn’t 2015. This is year-1. It didn’t start 8 days ago, it begins right now. The medical profession aren’t responsible for my health, I am. Perhaps, he is a repulsive little man, but I don’t know what battles the consultant is fighting. I have no control over him, I can only steer myself. My brain is special. It malfunctions and yet it keeps going. It proves its power multiple times a day, every single day and I feel if the electricity could be harnessed I could probably light up the dark. Funny really, because that’s all I’ve ever wanted to do.

Year-1 is hope renewed. It’s accepting the inevitable while participating in the process. The battle is inevitable, but I can actively influence how I choose to feel about it. What is this thing called life if we consciously choose to let it unfold as it will without putting the rudder in the water and trying to steer it? Life. It’s an attitude. I want my year-1 to be a fresh start. My epilepsy is hard to control, I’ve always known that. The fatigue is something relatively new and just as I’ve had to learn to live side-by-side with the falling sickness, I have to learn to manage the fatigue. Simple.

I hope your year-1 is as special as I’m determined to make mine.

Love it
Instigate it
Feel it
Enjoy it

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