Epilepsy and Coping…

Coping. What’s the alternative? Is there one? Right now, this precise moment in time, I’m coping with epilepsy and all that it spawns, because there aren’t any other options that I can see.

Coping. Such a mediocre word that goes no where near to describe the Herculean effort involved. To cope; a verb . A doing word, meaning to deal effectively with. Coping, to me, means I’m managing to keep my head above water and deal with the fact I have epilepsy, knowing that there is nothing I can do about it. Coping, to me, means trying to come up with some way of accepting that the medical profession appear to have bowed out and left me to it. Coping, to me, means trying to endure without giving cause to worry to others. Coping, to me, is giving the impression I’m in control and that epilepsy is not winning.

Can epilepsy win? Epilepsy is part of me, a part of my brain and its active, apparently, constantly. My brain, as my consultant put it, is constantly shedding excess electricity. I can’t separate epilepsy out from my brain. I can’t just put it in a little box, put the lid on and forget about it. It doesn’t work like that. I have to find a mechanism that allows me to deal with having epilepsy and its entourage of groupies playing with the electrics of my brain. If I can’t find a strategy that works then yes, epilepsy will win and I’ll have to try to live with the fireworks. Over the years, I’ve managed. I’ve had to. So why does it feel like that’s changing?

I have an anger in me at the moment. I can feel it behind my sternum. It’s preventing me from taking a deep breath. I’m angry at me, I’m angry at some others and I’m angry at epilepsy. Anger, allowed to fester unabated, will serve no other purpose than to strengthen the strangle hold of epilepsy and undermine every single coping mechanism I’ve ever garnered over the years. If epilepsy wins, then anger will share the podium. I don’t know how I turned into an angry person. My anger mostly manifests itself inwardly and is a destructive force in my soul, but sometimes it takes control of my vocal chords and it strums out sounds that I give form to and the words give hurt and bitterness a voice that’s often pointed in the wrong direction.

I’m struggling and I don’t know what to do. I’m weary and I’m weak. And I hate just how pathetic that sounds. How whiny. How self-indulgent. How full of self-pity.

How selfish I am. Why on earth should I feel sorry for myself? What do I have to be angry about? I have epilepsy; so what? It’s just one of a million chronic diseases that people every where deal with constantly. I should have been in London this weekend, but a stomach bug put paid to that. I seem to have bugs, colds, illnesses more or less constantly at the moment and I have to wonder how much of that is down to me only just coping. Weakened physically as well as mentally.

Coping isn’t an easy option. It’s draining physically and mentally. Energy is something I once had but I’ve kinda forgotten what it feels like. What’s the alternative to coping? Giving up? Pushing all responsibility onto another? Relinquishing control? No, that sounds just a bit too selfish to me. Tempting, but selfish. But what else is there? Truthfully, I do not know.

Today may well be a duvet day. A day I hide in bed and pretend that everything is ok. But tomorrow? The next day? I have no choice. I have to get up, get dressed and show up to work. It pays the bills. Do I want to? Well, that doesn’t matter.

At the moment, coping is the only option I have.


Epilepsy and Depression…

Well, this one is not so much Epilepsy and Depression, more Depression and Depression…please stick with me though….

It occurred to me last night that some people who opened their eyes in the morning, wouldn’t be opening their eyes again. If I was to be one of them, would I be proud of the life I’ve led?

My friends mean the world to me. I’ve led some of them a merry dance and I’ve pushed them away more times than I care to even think about. But, as I’ve talked about before, they come back. No, not all of them, that’s true, but enough of them to reassure me that whatever this life chooses to fling at me and no matter how hard I push them away, they won’t let me fall. My inner-circle never leave. The friends I have in my life make me proud. Each of them has battled a demon or several in their time and each of them has allowed me to draw from their courage, love and support so that I could battle mine. I don’t tell my friends this often enough, but I cherish every single one of you and I’m proud to have you standing by my side and I’m proud to stand at yours.

Being a good friend, a true friend is not easy. Recently, I watched in wonder as a friend pulled another friend back from the brink. I supported from afar and marvelled at her courage, strength and the depth of her soul. Our friend is in the hell that is believing you’re worthless. That friend has one of the gentlest souls I know of and he tears that soul apart with feelings of worthlessness and despair. I wish with all my heart that he could see what I see when I look at him.

I have faith in him that he will be able to fight this battle. I believe in his ability to channel the energy he is currently using to focus on everything negative in his life and point that towards concentrating on the positives. He can not see them at the moment, but I know he will. There is no quick fix with depression. It is an illness like any other. There is no shame in it. Thankfully the stigmas associated with it, as with those attached to epilepsy, are becoming less.

Sometimes, when the depression is bad, the very act of opening your eyes is the hardest part of the day. After all, what’s the point? It takes a person suffering from depression a tremendous amount of strength to open their eyes and get out of bed, or up off the floor. The darkness is a shade of black that is hard to comprehend and there is such a desire too for the suffering just to end. For every person who has felt that level of despair, there are those who just cannot understand how hard it can be to function. We’re not talking a case of the blues here or feeling sorry for yourself. This isn’t a bad day, it’s an illness. Would you tell a person suffering from meningitis just to pull themselves together? Of course not.

There are many different reasons why a person may not be opening their eyes tomorrow. But for those of us who do physically open our eyes tomorrow, perhaps we should make the effort to metaphorically open them too. My friend is in so much pain at the moment and all his friends want to do is help him find a way through the despair. He is not alone in this battle. We can not fight it for him, but we sure as hell will fight it with him.

Am I proud of the life I’ve lived so far? Hmm. I’m enormously proud of the friendship choices I’ve made. I’m enormously proud that I’ve seen as much of the world as I have. I’ve made some pretty dodgy decisions in my life, it’s added to the colour but I’m not overly proud of some of the things I’ve done or said. On the whole I’m proud, but if this is to be an appraisal, then there are quite a few “could try harder” footnotes. When I open my eyes tomorrow, I’m going to make a conscious effort to really look at what’s going on around me and listen to what’s being said. Not listen so that I can just answer, but listen so that I can comprehend. I want to show the kind of compassion, companionship, love and belonging that my friends show to me.

When the day comes when I don’t open my eyes, I want to be able to answer the question “are you proud of what you’ve left behind?” with a firm “Hell yeah!”.


Epilepsy and Choices…

As suspected, the blood tests revealed nothing. So, I’ve had to give more of my blood for more tests. These ones basically just to confirm the last ones. I feel fobbed off.

Options though. I have options. We’ve always got choices. That’s true. So, no-one is bothering to explain what my options are, so I guess I’ll have to work out what they are for myself and then make some choices. Epilepsy has not robbed me of my ability to make a decision. Although, Epilepsy has never been a factor in how good a decision I make!

I’ve done the right things. I’ve been through the medical profession and have got not very far. The biggest issues are: epilepsy (doh), headaches, depression and sleep issues.

Well, let’s see. They’re obviously all linked. I don’t have 4 individual problems, that can be sorted with 4 different sets of meds. I have a inextricably linked set of health problems that need to be regarded as a whole. My initial feeling is to go back to basics. Strip myself clean and start over with the knowledge that I have.

AEDs. Anti-Epilepsy Drugs. Anti-convulsants. Choice: keep taking them or stop taking them. What are they currently doing for me? Well. No-one knows. Are they preventing the excess electricity physically manifesting into a full blown seizure more often than I currently do? No-one knows.

Lack of sleep, to me, is the biggest issue. I’m so very tired all the time. It certainly doesn’t help with the headaches and I suspect it’s a pretty big contributing factor to my depression. It’s also a contributor to my epilepsy. When I’m tired, I’m always more prone to fitting. I’m tired all the time at the moment. What choice do I have here? Sleeping pills? Are they a choice? They’re a consideration. Truthfully, they’re not a road I want to travel again. They scare me. What else can I do though? What alternative is there to drugs when it comes to sleep? I need to do more study. I need to do more investigation. There has to be alternatives to a drug induced sleep. I don’t know if it will be dietary, but that’s definitely a route I need to investigate.

To my mind, even in its broken state, lack of sleep, good quality sleep, is my biggest problem. Everything else is linked and would be more manageable if I could get a handle on my sleep. But how? How do I do that? Nutrition? Exercise? Drugs?

I’m exhausted and exasperated. I don’t know what to do next and I can’t think clearly in order to make a decision. Helpless is how I feel. Helpless. That makes me feel pathetic and that’s a feeling I don’t like one little bit.

So, I’ve got some decisions to make. Decisions that could affect the rest of my life. They can’t be taken lightly. I’m scared.


Epilepsy and my Brain…

More tests. More waiting. More anxiety. Less hope.

They took a lot of blood. Nothing to do now, but wait. Part of me hopes the tests will reveal I’m deficient in some mineral that promotes sleep, I’ll take a few supplements and everything will be better. The rest of me just knows it won’t be that straightforward.

The brain-fog is more-or-less a constant now. The headaches are dull but I almost feel I could hold them in my hand. The depression is deepening again and I know this one is going to be a big battle. Depression. Even the word is cold and heartless. It crawls over me, leaving blackness in its wake. How much of the despondency can be attributed to epilepsy though? Having epilepsy doesn’t automatically consign you to living a life of depression. Not at all. Having epilepsy is not the root of my depression. Episodes drain me to the point where I can’t fight the darkness, that’s true but it doesn’t cause my depressions. It just robs me of the ability to deal with what does.

Right now, I’m feeling abandoned by the medical profession. I don’t understand why they are unwilling to further investigate the problems I’m having with tiredness. It’s not normal to be this fatigued. It’s not normal to be so tired that I’ve lost interest in anything, everything. I don’t understand why I just don’t seem to be taken seriously. This is real for me. True, I don’t have an immediately life-threatening condition, but surely that doesn’t mean I don’t deserve some help?!

Epilepsy has both made me and broken me. I’ve done so much to spite the epilepsy, to prove that it doesn’t own me. It has a weapon though. It strips away energy and replaces it with a blanket of fatigue. It leaves me defenceless against the inner-demons. It’s this fatigue that I desperately need help to combat and it’s the aspect of my condition I’m being left to fight alone. So much more makes sense now that the tiredness and the epilepsy have been linked. I don’t understand why there is such reticence to take the next steps to help me understand the link and deal with it. I’m looking at the bruises on my arm where they took blood. The colours seem to be reflecting my mood. Black, angry blue.

My brain is wonderful. It’s complex. It’s constant. Despite malfunctioning it’s got me through life to this point. If the medical profession don’t want to, or don’t know how to, help me further then maybe it’s time I set my brain the task of working out the best way to help itself.

Is it possible? Probably.