0

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.

2

What’s the difference?

I’ve always tried to be open and honest about my epilepsy and how it affects me and therefore, potentially you. There are several reasons for this, the main one I admit is for a selfish reason – it is better for me if you know that I have epilepsy and so if you see me having a seizure you are less likely to panic as you know its “normal” for me. Secondly, I always offer to talk about the disease, the effect it has on me, my family and my friends; this, I believe, helps to raise awareness and go some way toward dispelling the stigma that unfortunately still surrounds the disease. I’ve talked about my own experience with stigma before (Epilepsy and Stigma…) so I won’t labour the points here, but it saddens me that it is still something that we have to cope with along with everything else. I also, selfishly again, like people to know that a diagnosis of epilepsy doesn’t have to be the end of the world. Although, I admit, sometimes it can feel that way.

Often, one of the first pieces of information a newly-diagnosed epileptic (yes, I know that in this modern world “epileptic” is a label that we shouldn’t use, but as far as I’m concerned I am epileptic, in the same way, that I am brunette and that I am green-eyed. It’s a descriptor in my book and not a bad word) is given, is a list of the things they can no longer do. Driving, swimming, diving, etc. Few, in my experience anyway, are given a list of things they can do. I like to believe that this is because the list of cans far far outweighs the list of can’ts. Even then, what we are told we can’t do is often a slight misnomer. For example. I was told I couldn’t swim anymore. I virtually lived in the pool. I swam every day for my club, I also was a regular high board diver. Being told that I could no longer go to the pool was devastating to me. And, it wasn’t true. I emphasise here, that there are many people who suffer far worse than me from their seizures and for them, perhaps, it isn’t safe. What I wasn’t told, was that providing I was accompanied by someone who knew of my condition and how to help me and that I informed the lifeguards on duty, then there was no reason why I couldn’t continue to swim. I did lose my driving licence and I’ve never been able to get it back. This is because my seizures can be unpredictable and while I have gone the required 12 months (it used to be 24) and so I could apply to have it reinstated, it would not happen as I can’t demonstrate that I am controlled and my GP would not sign it off. I think I miss the freedom that being able to drive would bring on so many levels, however, I balance this with the knowledge that I will never cause an accident through having a fit at the wheel and so potentially ruin another life.

Telling people I have epilepsy usually elicits two responses. The first, the most common, is that there is simply no acknowledgement of the information. That’s totally fine with me. I recognise that while I’m comfortable talking about it, others perhaps aren’t and for a myriad of reasons. The second response, is generally, “thanks for telling me that, it’s useful to know. Perhaps you can tell me about it?” Yet, what I only very occasionally hear, is “I have a friend with epilepsy” or “my xx has epilepsy”. In the 20 years or so that I’ve been extremely open about my disease, I can count on one hand the number of times that response has come. My experience sharing my MS diagnosis has been vastly different.

Telling people I have been diagnosed with MS has been a completely different kettle of fish, to announcing I have epilepsy. Firstly, it took so long to get a diagnosis, that I couldn’t tell people what was wrong, all I could give them was a range of afflictions of varying severity that it could be. The medical debate as to whether my optic nerve issues are MS or something else still rages on, but for the purposes of this post (and my mental well-being) let us pretend that it’s all MS related.

The initial similarities between the reaction to the MS diagnosis and the one for Epilepsy are actually pretty similar. Although, I guess that’s not really much of a surprise. Shock, terror, panic, tears etc were all present on both occasions in the early months following diagnosis. My lack of knowledge about both diseases was a factor. Epilepsy when I was 17 simply wasn’t discussed, I didn’t have Google (this was 1988 people) and I dealt with everything by internalising it. If I didn’t acknowledge it, it wasn’t happening. The classic, as my brother often describes it, sticking your head in the sand and hence leaving your ass exposed. I knew nothing at all about epilepsy and my knowledge of MS started and ended with horror stories, Jacqueline du Pre’s death springs to mind as being the only real story I knew of where MS was the destruction of her career and life. She was younger than I am now when she died. The only other exposure I had to MS was hearing about other tragic stories in the media. So my complete lack of any factual knowledge of either disease was total. As an adult, I think that I dealt with my MS diagnosis in a bit more of a mature way. At 17 I didn’t know what to ask and of who. Being as I’d basically shut down, then chances are I wasn’t going to ask anyway, but perhaps if I’d been pointed in the direction of a support group, then it may have changed things for me. Who knows? At 45, I asked questions. Sometimes, I didn’t get answers, sometimes I didn’t want to hear the answers, but ultimately, I had/have to face up to the facts as they present themselves.

When I did start to tell people I had MS, it usually elicits two responses. The first is along the lines of “oh shit” or “chr*st” or words to that effect. These responders are generally the ones that had the same negative exposure to MS that I’d had. The other typical response was a complete surprise to me. It’s along the lines of “my xx has MS” or “I have MS too” or “I know a couple of people with MS”. I did not expect this. Perhaps I was vain to think I was the only one!! It’s estimated that about 100,000 people have MS in the UK in 2016, while the figure for epilepsy is 500,000. It’s mainly for that reason that I was so surprised just how many people who I know and see regularly, have firsthand experience of living with MS or know someone who does. Given there are 5-times as many people with epilepsy than with MS, I’d have thought I’d know more people with exposure to epilepsy.

Does this mean anything? Does it mean there is less stigma attached to MS and so people are more likely to admit they either have the disease or know someone who does? Or does it mean that people with epilepsy are less likely to acknowledge their condition, especially if it’s well controlled? I don’t know the answer. I find it fascinating though.

The first person to be “officially” diagnosed as having MS – albeit posthumously – was Augustus d’Este, the grandson of The Mad King, George III. Although he wasn’t diagnosed during his lifetime, the diaries that he kept detailing his symptoms allowed for the diagnosis to be made. He kept diaries of his condition for 22 years, with the final entry being made 2 years before his death in 1848. However, the disease can be traced back to the 14th century to Saint Lidwina of Schiedam Although she died in 1433, historical texts tell of difficulties in walking, pains in her teeth and terrible headaches. This gave rise to the probability she suffered from MS. However, epilepsy has been documented as far back as 400BC with Hippocrates, no less, dismissing epilepsy as being no more sacred than other diseases in response to the belief at the time that epilepsy or the falling sickness was some kind of supernatural affliction.

There are long lists of famous people who have lived or do live with epilepsy. Bonaparte, Julius Ceasar, Dostoyevsky, Alexander the Great, Lewis Carroll and Prince to name just a few. Yet, I can’t find a similar list stretching through the ages for MS. The lists for those suffering MS seems limited to those currently living with the disease or those, such as Ms du Pre who have passed relatively recently.

I find the differences and similarities between MS and Epilepsy absolutely fascinating. The stigmas, the discussions and the history of both diseases being a source of both wonderment and inspiration.

0

Epilepsy and Moments..

I sometimes forget to stop and smell the roses. This is not just because I have epilepsy, it’s something that the vast majority of us adults do. There’s nothing wrong with my olfactory system, my misfiring brain got that part right, but I have a tendency to leave my achievements unacknowledged and to forget the times that I did get up, get out and do something wonderful. I don’t think it’s so hard for most children to do. Every time they step outside the door a child can feel exhilaration. At least they would if they’d been encouraged to go out and play rather than be praised for their ability to use a smartphone!

I’ve had a lot of wonderful moments in my life. I know I should choose to remember them rather than dwell on something that is past and over. I’ve talked a fair bit about choice, so maybe it’s time to start practising what I preach! I chose to not let epilepsy stop me from doing anything. In some ways I’ve channelled the frustration at having epilepsy into an energy that’s caused me to get up,dress up and show up, as the saying goes. A bit like sticking two fingers up at epilepsy and saying “I can and I will. So there!”

Friends of mine got married last weekend. It was a small, intimate, beautiful occasion with the bride wearing flowers and ribbons in her hair. Most of the guests had travelled from overseas to be a part of their day. That’s how much they’re loved. I was included in that and count it as a time that I got up, got out and was part of something wonderful.

So, I resigned my job, packed a 75litre rucksack including wedding outfits for 2 different weddings in 2 different hemispheres and only 1 week apart, I took a pile of anti-convulsants, a letter explaining why I was carrying so many drugs and I went travelling with my boyfriend. We swam in the topaz blue waters of the South Pacific, we skydived over Lake Taupo, we kissed in the middle of a tropical downpour, we trekked across a treacherous ridge through a tropical jungle (I whinged a lot of the way until we got to the beautiful waterfalls at the end), we skied in Christchurch, we stood in a forest of Kauri trees on one continent and drove through the trunk of a redwood tree on another. We watched the sun rise over Lake Matheson and the sun set over the beach and surf of a South Pacific paradise.We touched a glacier and watched the All Blacks do the haka on home turf. We did the foxtrot at one wedding in Cambridge, New Zealand and the following weekend we swing-danced at a wedding in a vineyard in Northern California. We gambled in Las Vegas and flew over the Grand Canyon in a Cessna during a lightening storm. We toured the Hoover Dam and we marvelled at the colour of the blue of Lake Mead. Just a few of the wonderful moments I’ve had in my life. Moments, experiences I would never have had if I hadn’t chosen to accept epilepsy as part of my life, not for it to be my life. I’ve had many more wonderful experiences…but I guess I’ll get to them.

Some people have suggested to me that I’m being irresponsible doing some of these activities. That I’m putting myself and others in unnecessary danger. The choice (there’s that word again) to do something, anything is mine. Where others are involved, such as with the skydiving, then I ensure they know about my condition and they can make an informed decision as to whether that’s something they want to take a chance on. I’ve taken responsibility for my life, my actions. I don’t not cross roads in case I have a fit on the white line, I don’t not leave the house in case I have a fit al fresco. Why should I place limits on my life, because of something that may not happen? Once again, I recognise that some sufferers have it considerably worse than me, and that what I choose to do would be an inappropriate action for them.

Around 12 years ago, I was asked to be a bridesmaid to a very close friend. A friend who’d visited me in hospital and helped put me back together on more than one occasion. I was there when she chose her wedding dress and I was thrilled with the emerald green she went on to choose for her bridesmaids colour. I had a seizure the day before her hen weekend was to start. If the weekend had been in Edinburgh I would have been able to go for a part of it, but it wasn’t it was hours away in another city. I explained to her that I couldn’t go. I felt that it would be too much for me and I didn’t want her worrying about me the whole time she was meant to be partying as I knew she would. She seemed fine, disappointed but fine. A couple of weeks later, the week before the wedding she came to see me and said she didn’t want me to be her bridesmaid anymore. She didn’t want me to have a fit at her wedding. I accepted her decision with as much grace as I could muster, hugged her and said I understood. I didn’t. Apparently it was still ok for me to go to the wedding as a guest but just not as part of the bridal party. Obviously a guest being taken ill at her wedding was more acceptable. That makes me sound bitter and I’ve tried hard not to be, but I didn’t understand why my closest friend, who’d stood by me and my condition for many years could cut me out so brutally. That’s how I saw it. I guess she saw it as me letting her down at her pre-wedding drunken weekend. I didn’t go to her wedding. We didn’t see each other after that for a few years. I tried to get back into contact with her, but it was clear our friendship was over. I wonder if I was wrong not to go to her hen weekend. Probably? Possibly? I really don’t know, I felt I was doing the right thing because I was scared my sheer exhaustion and hence lack of enthusiasm to go clubbing and drink to the wee small hours would ruin her weekend. I have lost friends through having epilepsy but none have left such a hole as she did.

I’m glad to say I’ve been accepted at more weddings than I’ve been rejected from.

One day when she’s old enough to understand, I’d like to sit down with my friend’s little girl, S, and talk with her about all the ways she can live a wonderful life despite her “shakies”. Encourage her to live out her dreams and be inspired by the wonders of life around her. I’d actually like to sit down with my non-epileptic god-children, my niece and a whole host of other people, young and older alike, and have the same conversation! It’s ok to feel the fear that comes with having epilepsy. It’s not ok to feel controlled by that fear. And that’s not just true for epilepsy sufferers.

Turning my life into a mere existence because I have epilepsy is not a viable option. I have too long left to live just to exist. Vitality, vigour, energy, joy, wonder. Life.