Is your battle my battle?

I agree. Fatigue is a big part of this post. I’m tired. I’m emotional not hormonal. I’m grateful for what I have, but feel short-changed. I feel guilty for feeling that way.

I read about a lady battling to get her husband the support he needs to live with his mental health problems. He’s homeless because he can’t be around his kids, he is being over-looked by an over-whelmed healthcare system. His kids know he’s homeless but don’t understand why he isn’t being helped. He doesn’t tick the right boxes so he isn’t a priority. He is deteriorating on a daily basis, his wife is desperate to help him but is being blocked at every turn. Yet, she keeps fighting. She fights every day.

People like her give me hope for a future that I struggle to see. She’s doing it for her kids. She’s doing it for her husband. The side effect of that, is that she is doing it for me and for you too. What society as a whole, I think, tends to forget, is that we are are ALL a single, unexpected event away from the situation this lady finds herself in. She didn’t marry a man with obvious mental health issues. She didn’t have children with a man with obvious mental health issues. Yet a single circumstance sees her on a 9-year battle to get help for him. I feel humbled by her battle and in awe of her strength.

And yet.

I, like so many of us, can’t comprehend her situation. Can’t see past our own circumstances. Is this wrong? On so many levels it feels like it is. I feel guilty because I can’t give the wider issue that she raises the due attention it deserves because I’m wrapped up in my own. Aren’t we all? On another level, I feel grateful. I feel such a sense of relief that I don’t have to live everyday raising small humans to be decent citizens while trying to explain to them how society, as a whole dare I say, is letting their father down. Is it enough to think “that’s terrible, I wish there was something I could do” and move on to the next story? Well we all know the answer to that. At least I hope we do. Yet, it really isn’t that clear cut and simple, is it.

My issues, my mental health problems seem minor in comparison. I equally hate myself and commend myself for saying this. My situation is different. Completely different. Yet, the facts remain. I have epilepsy, I have MS, I have depression (& before the pedantic police pull me up, yes I know I’m supposed to say “suffer”), I have mental health issues and I struggle to see a way forward. I’m still functioning in society though and for this I feel grateful. Or am supposed to feel grateful.

I just don’t know that a society by which it’s ok to let a man and his family suffer for 9 years because the man doesn’t fit the right boxes to get him adequate help is the society I want to live in. It seems all I can do to try to change that is continue to help the lady raise awareness of her situation and to vote. Oh don’t get me wrong. A huge part, the vast majority indeed, of society are good people. People who are shocked and saddened when they hear of issues like this. That’s a good thing. Yet, I feel that we are gradually moving toward a time where this lady’s circumstances are the norm.

How very sad.

My own issues, when compared to this lady’s pale in comparison. But they are still valid. They are my day-to-day. And I suppose that’s what we all have to remember. It’s all relative. I can’t compare my situation to hers because it’s so very different. I can sympathise, but struggle to empathise. Perhaps because I really, simply just don’t want to imagine what it must be like to walk in her shoes.

I feel tired. I bet she does too. I feel emotional. I bet she does too. I’m battling my own demons, I bet she is too. I am utterly fatigued. I wonder if she is too. Her kids are suffering more than a child should. I don’t have to deal with that. Her husband is suffering more than a husband should. I don’t have to deal with that. She is battling hard to raise awareness. I wonder if I do enough of that. She is battling every day. I wonder if I have the strength to do that. Her pleas for assistance from the relative bodies are, effectively, being ignored. I struggle to raise to the relevant bodies my pleas.

The differences are pronounced, but the similarities can be found.

The moral of the story, in my eyes at least, are epically biblical. “There, but for the grace of “xxx”, go I”.

Another disjointed outpouring from a fatigued and emotional mind.


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 False nails….

Well, in my experience the two just don’t go together.  Especially if you’re of the male persuasion.

My nails aren’t naturally gorgeous.  They split, break and generally look like I’ve spent a lifetime chewing them.  Hmm, stands to reason being as I have…Anyway, I’d spent a fortune getting my nails done for a special occasion.  I can’t recall what that occasion was now, but I do remember they looked beautiful. A couple of days later, I’d been shopping in town and I was standing at the bus stop waiting for the No1 to go home.  I had a fit right there in the bus stand apparently.  The paramedics were called and, true to form, I found myself in the hospital. Minus my beautiful nails.  Now, according to the nurses, I’d left most of my nails in one of the paramedics, who had tried to sweet talk me into the ambulance.  I’m guessing he won’t be doing that again in a hurry….I’ve met a lot of paramedics in my time.  An awful lot.  They’re the ones who generally have to bear the brunt of my lack of desire to enter an ambulance, be strapped in and they don’t see me at my best.  I’ve questioned the parentage of almost every single one of them and yet I remember none of them.

In my experience, paramedics, nurses, ward assistants and hospital staff in general, are amazing. They put up with me, patch me up, feed me (I don’t like being in hospital, but my favourite part is having rice krispies with sugar for breakfast ) and send me on my way in a far better shape than that in which I arrived.  Consultants.  They are a completely different breed, but I guess I’ll get to that.

I don’t remember too much about being diagnosed with epilepsy to be honest.  I’ve said I had my first fit at 15yrs and I was diagnosed 2 years later after I had a fit when I was supposed to be at a job interview.  I suppose I didn’t want to be a checkout girl at Morrisons supermarket.  My Dad had come home early from his work to find out how the interview had gone, to find me lying on the couch and talking rubbish.  He wasn’t happy.  I turned my face to look at him and gave him a mouthful of obscenities and that’s when he saw the bruising down my face from where I’d been banging my head off the wooden armrests of the couch.  The doctor was called and he trailed his finger along the sole of my foot and I felt like it was being ripped open and doused with acid.  He said that it was a sure-fire sign that I’d had another seizure.  Cue more hospital visits and this time a diagnosis of epilepsy and the beginning of the battle of the meds.  Something else I’ll get to!

As I’ve said, I didn’t know much about epilepsy when I was diagnosed back in the 80s.  I certainly didn’t want to talk about it and I was in a constant bad mood, partly down to the fact I was a teenager and partly because I was terrified.  What did it all mean?  Did I have a mental disorder?  Was I going to have to live in some kind of facility?  Could I work?  Could I get married?  Could I have children?  Was I safe to be around?  I had so many questions and fears.  I didn’t voice any of them.  I was too scared of the answers so I chose not to find out.  20+ years later and I can see the error of my ways.  Maybe someone should have pushed me to ask questions and talk about it, but I don’t remember anyone doing that and I probably wouldn’t have been receptive anyway.  Now, I ask questions.  I don’t give a second thought to how daft they might sound.  They’re not daft to me and if asking the question means I don’t spend the next 20 years wondering, then I’m going to ask it. To date, no-one has made me feel stupid for asking a question.  I have, on occasion, been spoken to as if I’m small child or a silly girl, but I’ve got the answers and the discomfort of asking has been short-lived  I still get a bit nervous going to see the medical profession of my own accord.  Arriving in an ambulance and lacking control is one thing, but pitching up at the neurology department after a summons still makes me uneasy.  So, I write down what I want to ask.  That way, I remember to ask it.  Epilepsy can be frightening and is definitely still misunderstood, but the epileptic’s lot is improving.  For instance, in the Dark Ages we would have been burned alive accused of being involved with witchcraft; in the Middle Ages we would have been referred to a saint to receive treatment for the “falling sickness”; today there is information, support and a wider-acknowledgement of the condition and its (many) treatments. Oh, and it’s not politically correct to describe yourself as epileptic anymore.  I still do refer to myself that way, same way as I describe myself as female and as brunette.  It doesn’t define me, it just is what it is.

As I’ve said, having a seizure for me is always followed by a bout of depression.  Some depressions go deeper than others and some I can shake pretty quickly.  The depression that I felt after the fits before Christmas is lingering.  It’s not as dark as it was, but it’s still hanging around.  I’m feeling depression and I’m fearful of depression, far more scared of that than the physical side of epilepsy.  Although, I quite happily advertise my epilepsy to anyone who will listen for a variety of reasons that I’ll get to later, it’s not until relatively recently that I’ve been more open about the depression I suffer.  Depression, for me, brings back memories of how others in my life “coped” with and were “treated” for their depression when I was much much younger than I am today.  It invokes a feeling of dread.  I was talking to a friend about dread a couple of days ago. He was telling me how his wife is dreading a long-haul flight with their two very young children.  The flight is inevitable, so he just accepts there will be some pain involved, but for his wife she is actively dreading it even though there is nothing she can do about it.  It’s an interesting concept.  I don’t dread physical pain.  Emotional pain?  Well that I dread, and rather than accept it as inevitable and not worry about it, the dread becomes a constant regardless of any action taken.  Problem is, in my experience, a depressed mind isn’t a rational mind and so the cycle continues.  Dread attracts dread and all of a sudden everything is frightening.  The only solution is to take action to break the cycle and of course that involves a great deal of dread…..viscious.

Today has been a strange day and I’ve spent most of it thinking about my jigsaw.  I’ve been thinking about how there is a sea of grey where my 30s should be.  I’ve been thinking about my life and what I’ve done with it so far and I realise that my 20s were the high point.  My 30s was a series of bad relationships, bad decisions, depression and a job which I thoroughly enjoyed but didn’t stretch me beyond my comfort zone.  My 30s were blah and if I’m not careful, my 40s will go a similar way.  So, it’s time to take control again. To accept the depression for what it is but to also accept that it will pass.  The trick is not to dwell and to not let it become all-encompassing.  I accept my epilepsy has consequences.

One of the advantages of having epilepsy is that I save a fortune not getting my nails done….