Epilepsy and Truth…

You look fine! You look great! Are you feeling better? Some of the comments and questions I’ve had this week. It’s nice that people care. I look ok, bruises have gone, scratches are healing and make-up is wonderful! Do I feel better? Hmm. Physically, I feel ok. Yay! Mentally, I’m struggling. People don’t really want to hear that. It’s hard to know how to respond. They just want the “yeah, I feel better thanks”. I can understand that. Like I say, it’s lovely that people care enough to even ask the question.

I’m not feeling better though. I’m scared and I’m worried and I’m still trying to shake the disjointed feeling that’s been bugging me for the last few weeks. I feel like I’ve fallen apart and been put back together again, but the wrong way. It feels like there is a piece of me in the wrong place, or a bit missing. The fatigue is all encompassing .My brain is trying its best and I give it so much credit for its ability to act practically and tell my body to do the things it’s meant to be doing. So, I can work, I can write, I can do things that I would normally do and I can do them fairly well, pretty quickly after an episode. So, the physical side of things is doing not bad at all. The metaphysical side though, well its taking a bit of time to sort through the feelings.

A friend said to me a few days ago, that I have to tell the truth about what happened and how it makes me feel so that people have a chance to really try to understand what I’m going through. He is right. It’s not that I’ve lied about what happened, it’s just that I’ve given a sanitised version, probably as a means of self-preservation for me and so that others don’t worry about me so much. Having to come up with a system whereby a friend has permission to contact various people if they don’t hear from me within a certain timeframe, is particularly hard for me. I know it’s for my benefit, but it feels like an imposition on my friend, even though they assure me it isn’t. It feels like I’m being constantly watched and I find that so very very difficult to deal with. Oh, I know the logic, I understand the logic, but it doesn’t mean I have to like it. Why do I tone down how I really feel? Well, there are a few reasons. I find it makes it easier for others, they’re less inclined to worry if they think I’m ok and not concerned about my condition. Secondly, it’s a means of me retaining an element of control over my own life. The emotions are complex. Hell, I don’t understand them so I’m not entirely sure how I’m supposed to explain them!

When I initially became aware that something was wrong and something had happened, I was lying on my bed. Face down, in a pool of vomit. I got up and went to the bathroom where I saw I’d also vomited. I went from there to the front room where I noticed I’d also vomited on the sofa. My thought process was to unzip the sofa covering and put it in to the washing machine. A good move, my sofa covering is washable, so a perfectly reasonable thing to do. After I set the washing machine off, I went back to bed and I lay back down in the pool of vomit. It would probably have been the more sensible thing to strip the bed and wash the linen first, no? I’m always sick after a seizure. The difference is there was no one around to hold my hair back and make sure I didn’t lie face down in it. I can remember thinking while I was putting the sofa covers in the washing machine that I really wanted a cup of tea. There was no-one there to make one for me, and I couldn’t really remember how to do it. So, I went without. I don’t know why I knew how to work the washer, but I didn’t know how to make a cup of tea.

I’m still trying, in vain, to put together the jigsaw. I know I spoke to my brother on the Friday night and I know I came to on the Sunday morning. I know I must have moved around after the initial fit, because the sickness always comes afterwards and I was sick in several different places. What I don’t know, is exactly when the first seizure occurred, how long it lasted or where it happened. And I have no idea how many seizures I had. I don’t know how long I was unconscious for. I know I was present enough on Sunday to be able to get myself from my house to my parents place. I know that I behaved appropriately in the company at my parents’ house. I know I didn’t go to the hospital, but said I did. I know that after knowingly living with epilepsy for 26 years, this is the first time I remember having felt so horribly disjointed for so long after an episode. When my brother dropped me off at my home after being at my parents place, I walked off in the wrong direction because I couldn’t think where my house was. I did eventually turn around and go in the right direction, after yelling at my brother for letting me go the wrong way! He said he thought I was going to the shop – aye, right!

I’ve talked before about feeling more afraid of what comes after the seizures, than the physical act of seizing. The depressions after the episodes are deep and what feels like a tear in my soul takes a while to heal. I fear those feelings. Why? I know they change me. They change my personality. They chip away my self-esteem and they hack away my self-confidence. I fear the part of my epilepsy that I can’t see, but can only feel. Now, I find myself in the position of trying to deal with the intangible, while battling hard a terror that I’ve never felt before.

I accepted a long time ago, a very long time ago, that I have epilepsy. I made a conscious decision to live alongside the condition and to not let it consume me or dictate to me how I live my life. I firmly believe that having epilepsy is not the end of the world. Life could be considerably worse. I find myself trying to maintain this belief while coming to terms with a feeling of fear that I’ve never had before. I’m scared to leave my house. I’m scared to be among people. And no, the irony of that isn’t lost on me. I was alone, in my house when this episode happened. Yet, I don’t want to be with people and I don’t want to leave my home. It’s an effort to do anything. My workplace aswell as my friends, have been amazing. I’m not sure how other people who suffer chronic, unpredictable illnesses manage if they have a less-than supportive workplace. I’m very lucky.

I feel like giving in to the feelings. I feel like just staying in the house and getting my GP to sign me off work, so that I can just stay home. I have no need to leave it. I can do virtually everything I need to do, well, virtually. Every day I persuade myself that I must leave the house. That I must continue to fight. Every day I have to remind myself that I’m still Kirsty. I remind myself of the promise I made to me, not to let epilepsy win. The battle is constant. I know others that don’t suffer, find it hard to empathise. There are no physical signs anymore that I’ve had a seizure. Yes, I look fine. I look “normal”. I don’t feel it though.

I was telling my friend that someone had said to me that they’d noticed a real change in my personality a couple of days before the fits. He was saying that if I told more people the cold, hard truth about how epilepsy affects me, then they would be more switched on to the signs that an episode is coming. That’s not to say that the episode could be prevented, that would never be the case for me, but it would maybe mean that I could make sure that I was going to be in a safer environment in terms of me not being alone for such a length of time. It’s hard to know with me though, as I’m such a moody person, whether it’s a sign or whether it’s just me with my knickers in a twist over something! I asked him if he would be prepared to take that chance and his response was that he would rather piss me off, than have me go through what I’m going through. I thought a lot about what he said to me.

Although relatives have died through having epilepsy, it isn’t something that preyed on my mind or something I dwelled on; until now. I believed that just because it happened to them, didn’t mean that it was going to happen to me. I’m trying to persuade myself that to believe anything other than that would be a bit silly and ultimately detrimental to my overall health. Yet, there it is. It does happen.

So, the truth of this episode for me, is that it’s brought with it a whole range of feelings that I’ve never had to deal with and don’t know how to. I’m scared. Yes, I’ll smile with you. Yes, I’ll laugh. Yes, it will seem to you that everything is normal with me. It’s not. The battle lines have been redrawn and until I can come to terms with that and find a way to deal with it, life is going to be a little different.

There has to be positives in this though. When I find a way through it, and I will, surely I will emerge a stronger person with a new arsenal of weapons to tackle everyday life with. That’s the first thing. Secondly, I’ve been reminded again how much people care. Support comes from the most unexpected and far-flung places and I’m grateful for that.


Epilepsy and Plans…

Three weeks ago, I woke up lying in a pool of my own vomit. I’d been in and out of consciousness and alone. I have no memory of it. I’m struggling, really struggling, to process this.
I don’t even know where to start. It’s been 3 weeks and I’m still not firing on all cylinders. I hate that. My head is full of cottonwool, my mind is muddled and my thoughts are dark.

I keep thinking back to GGG Agnes who died because of a seizure. Did she choke on her own vomit? I make no apologies for the graphic nature of this post. I don’t know how to put it politely and to be honest, I just want to get the thoughts out of my head and onto paper. Writing helps me, it doesn’t make my feelings less intense, but it does allow me to process them a bit better.

I was alone. No-one missed me. That sounds dramatic doesn’t it, but it isn’t. I like my own space, I like my own company and it isn’t unusual for me to go a few days without speaking to or seeing anyone. I’m ok with that. Several people, some good friends, some acquaintances, have suggested, understandably, that I check-in with someone at least every day. For my own safety and, maybe, for the sake of others’ peace of mind too? That just doesn’t work for me. Does that make me selfish? No, it doesn’t. I’ve had a diagnosis of epilepsy for over 20 years and no-one has bothered before to suggest I check-in. I know the suggestion is currently borne of genuine concern for me, but it doesn’t take into account “me” and how I like to live my life. And it is my life and that means I get to make the decisions that affect it.

This is the first time in my epilepsy career, that I’ve not been able to piece together the jigsaw and account for the time between the lead up to the physical seizure and the coming to. To suddenly start changing my life to check-in everyday with someone, to me, feels like an imposition and pressure on the recipient of the check-in, and an infringement of my human rights! It feels like an Epilepsy ASBO if you will. It’s bad enough that I get electronically tagged as a potential flight risk when I go into hospital! I don’t want to start having to account for every single hour of my day to someone else. However, I do accept that this was a potentially dangerous, dare I say life-threatening, situation and I recognise that it is the responsible thing to do, to have some kind of plan.

So, my very good friend, the lady who persuaded me to write this blog, has agreed to be my buddy as well as a my friend. The theory is, we are in touch virtually every day by electronic communication anyway, so it doesn’t feel intrusive to get a message from her. Our agreement is, if she doesn’t hear from me for a period of 48 hours, she has permission to contact family members and/or the medical profession to flag that I’ve gone off radar. I’m comfortable with this arrangement and it’s gone some way to alleviating the worries of some others. The suggestion that I have a panic button installed was dismissed very quickly, given that I would be in no state to recognise that I needed to “panic” and press the button!!

So, future plan is in place; present pickle persists. I simply can not get my head around this episode. I can’t forget about it and move on; I can’t compartmentalise it; I can’t stop turning it over and over and over and over again. I’m a little lost.

Actually, I’m more than a little lost. I know it. I can persuade others quite easily that this will pass, but I find myself questioning whether it will. I’m the first person to shout from the rooftops that an epilepsy diagnosis is not the end of the world; I stand by that. I firmly believe that it’s simply an obstacle that can be overcome often more easily than other illnesses. That said, I don’t take epilepsy lightly. It’s a seriously misunderstood, under-advertised condition that affects a not insignificant proportion of the population. It is often a life sentence and it’s rarely an openly discussed topic.

What happened to me 3 weeks ago, happens to someone every single day through misuse of drugs and/or alcohol. That scenario is often discussed, laughed about, advertised on social media and occasionally worn as some kind of bizarre badge of honour. I never have understood, and never will, why some people choose to see waking up in a pool of vomit as something to be proud of. Maybe I’m missing something?


Epilepsy and Fairy tales…

I’ve spent the last couple of weeks going over and over and over again what has happened. I need answers, it’s just my nature. The issue is, I don’t know what happened and unless the cat decides to talk, I won’t know. So, turning over and over the after-effects of what’s happened, is closer to the truth of what I’m doing.

But what’s the point in doing that? Is it going to change anything or will I just wind myself up tighter? There are a few facts when it comes to my particular brand of epilepsy and how it affects me. Firstly, I remind myself that I’m lucky. I don’t have episodes as regularly as others do. Secondly, I have to remind myself that though I don’t fit as often as some, when I do, it hits me hard. It takes a while for me to recover and I’m not able to just get up, stand up and carry on as if nothing has happened. I often berate myself and see this as a weakness, but, well, it is what it is. I’ve learned the hard way that when I pretend to myself that I feel better than I do, I end up feeling worse for longer because I don’t allow myself the time that I need. And, I desperately need to be able to piece together what’s happened. What I did, who I saw, what the time line has been. I don’t fully understand why I need to do this. Actually I don’t understand it at all. But, I know that I do.
I’ve been alone when I’ve had episodes many times. The difference this time, is the length of time I went between seeing people. On other occasions, I’ve been able to work out the whats and whens because I’ve known I was a certain place, at a certain time and that there have been others to confirm when and where I subsequently turn up. I usually plague people to tell me what’s happened. I’ve written about that before. This gnawing need to know. I can’t know this time and I’m struggling to deal with that.
How many seizures did I have? Where was I when they happened? What caused the bruising and scratching? 
Someone said to me just to forget about it and move on. That’s the sensible thing to do isn’t it? For me, it’s also the hardest. I’ve been telling people the outcome of an appointment I never went to, for crying out loud!! What else have I done and said that’s just been utter rubbish? I believed I’d been. Granted, I have no recollection of going (obviously!), but I believed I did. I don’t know how to deal with that. I’m not sure how to square that away. My glorious brain. It took my imagination and made it real. Maybe I have a new career ahead of me writing modern fairy tales?! 
I have to see the humour in what’s happened. It is kinda funny. I knew what I wanted to happen, so my brain granted my wish and made it so. My sleep issues can be resolved by a healthier, cleaner lifestyle. Hoorah! And the ironic thing is, it is most probably true! And there’s the humour. Dark though it may be. Yet, I can’t help but feel afraid. I’m capable of this kind of deceit. Oh, I know, I know; the deceit isn’t deliberate, but it’s there and it’s real. What other tall tales have I told? This one was uncovered because it was a clinical appointment, registered with various bodies and its a bit of a big deal when you just don’t turn up. But what’s out there that’s hidden? Not even necessarily from this episode, but from others? Now that thought, that really could push the limits of what I can cope with!
So, what is the point of turning it round and round in my mind? Well, rational Kirsty says there isn’t one. My rational side knows that I won’t ever know what happened, how often it’s happened or, indeed, why it happens. Yet, I can’t stop thinking about it. I’m sure I will eventually, when my day-to-day shifts back in to gear, but at the moment I just can’t. Maybe that’s one of the reasons why I always try to get back to “normal” before I’m really ready? It’s my way of pushing the thoughts that I don’t want to think, because I can’t process them, to the recesses of my mind. Maybe that makes a modicum of sense. But, when I push myself back to quickly, I end up worse for longer. There is a lesson in there I think.
But please, if I may beg a favour of you, if we happen to be talking about it and I’m trying to make sense of it, please don’t just tell me to forget about it and that it doesn’t matter and it’s not important. It is to me.