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.

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