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.


What next…?

It gets to the stage when you seriously question just how many times you can pick yourself back up.

10 days ago I was travelling home after spending the weekend with my oldest friend. My parents had kindly picked me up and we were driving north. A few miles outside of Edinburgh, I started to have a seizure in the back seat of the car. My head banged hard multiple times off the car door. I was taken straight to A&E where it took some time to persuade me to leave the car and when I finally did I started the second of the seizures. This time I thrashed on the gurney. Truthfully, I don’t remember any of this. I suspect the story I’ve been told has been softened up a little. I did spend 3 days in hospital. I did have 3 seizures and I did give myself a small bleed in my brain as proved by a CT Scan that I don’t remember having.

I was discharged from hospital a week ago. I don’t remember too much about any of that, but I do remember starting to feel really unwell as time was going on. When it became a bit more apparent to me that there was something not quite right with my face, I called NHS24 & was given an appointment at a hospital.

Long story, short. I have been diagnosed with Bell’s Palsy. Half my face is paralysed; one eye doesn’t close; my ears are constantly ringing and yet there is a sense of deafness in my right ear. I can’t speak very well. I can’t eat very well. And without putting too fine a point on it, I’m pretty scared.

Apparently, there isn’t really anything that can be done for Bell’s Palsy. There is a small chance that steroids can help if they are given soon enough after initial diagnosis, so I am currently on a high dose of them, but there are no guarantees. I’ve been told that it’s hard to go out with my face looking the way it does – reassuring! I’ve also been told to try to do it as soon as possible – terrifying! I’ve been for more scans, so perhaps that counts as being in public?! I’ve also got another appointment tomorrow, so maybe that is good enough to reinforce the “get out there” mentality?

A few weeks ago, I wrote about wondering whether I’d done any of “this” to myself. Here I am again. Where to go from here? At what point do I get to feel sorry for myself without inviting the comments about being a victim? Surely, it’s ok to feel a bit hard done by, no?

Epilepsy. MS. Depression. Bell’s Palsy.

Can that not please be enough? Please! Apart from the headaches and the pain, I feel a bizarre kind of emptiness. A sort of “what’s the point”? I don’t quite know the purpose of these struggles. What am I supposed to be learning? Isn’t there an Idiots Guide to… I can read instead? Who the hell have I upset so much that these afflictions are my punishment?

Ah, here they come. The tears. I can blink them away from one eye, but the other just streams. I know it’s going to leave my eye red, sore and swollen. Yet, there is nothing I can do about it. Just something else, that I have no option but to put up with. When does it end? When will it end? What can I do to make this all go away?

Yep, feeling sorry for myself now. Who cares? I’m not strong enough to take this and if I want to dissolve into buckets of tears then where is the harm in that? I’m not hurting anyone by doing that and maybe I just need to know that it’s ok not to be ok. Right? We get told that don’t we? That we don’t have to be strong all the time and that it’s ok to be scared sometimes?

So, here I am. Another affliction I can’t control. Another solitary journey. Another route I can’t explain to another and more feelings of inadequacy.

I don’t know how many more times I can pick myself back up.


The Dark Days of Summer…

I’m finding it hard to write at the moment. It’s not that I don’t want to; it’s just I don’t know how far I can go before I lose myself to the darkness again.

It’s ironic that the beauty of this UK summer is coinciding with the darkest depression I’ve had in a very long time. It seems that everything is coming together at once and the relentless waves I usually feel my depressions to be, have grown into an almighty tsunami. But I don’t know which metaphorical earthquake has triggered it.

I can’t lay the cause at one door. I’m not sure why I’m trying to. But I can’t just do the whole “acknowledge and accept and let it pass” thing. Forgive me if you will, but I just find that a little bit too touchy feely for my current raw state. My regularly burning skin is just far too sensitive to take any kind of manipulation and I really don’t want to explore what’s in the recess of my mind. I find myself scared of it.

I used to suffer a recurring dream when I was little. It involved the wardrobe in my brother’s room, the non-existent basement to our house and a carpet of writhing, hissing, spitting snakes. I believed that if I stood on the brass makers-plate on the floor of the wardrobe, it would open up and I would drop into the snake pit. I would scream and scream but no one came to help me. I never ever found out what happened to me because my screaming was real and I’d wake myself up. You’d think I’d have a problem with snakes given that nightmare, but I feel neither one way nor another about them. A certain fascination is there, in that I want to learn about them, but beyond that they hold no fear for me. I still think about that dream, a good 30 years since I last had it. I think the snakes were a representation of my thoughts and the basement is just the all-encompassing darkness of the mind. I spent the whole time we lived in that house terrified of a brass plate. It’s now the snakelike tendrils of the thoughts and processes of my mind that occupy my thoughts.

My soul isn’t doing somersaults at the moment, Rumi. Depression came to tea and appears to be staying for dinner. The heart sitting on my sleeve is telling blatant lies through rose-tinted lenses and I’m carrying a shroud of fear and hopelessness that I’m praying is invisible. Bit daft really, when I’m penning a post about how depressing depression is.

And yet, I still get up and function. Traditional descriptions of depression would say that the darkness is all encompassing, there is no functioning, there’s just black. However, this is the 21st century. Most of us who suffer don’t fit this traditional assumption of what depression is. There are just too many facets to it, to adequately pigeonhole all of us who live it.

Why am I able to go to a job and successfully do it if I’m apparently suffering from depression? Well, there are a few reasons. Firstly, it makes me feel more “normal”. Secondly, it’s a distraction. Thirdly, it’s my way of fighting back. These are the highlights for me. Many others don’t have the luxury of sick benefits – they don’t work, they don’t get paid. Many others are simply unable to get out of bed, get out of the house, get on public transport, deal with those so-called simple things that many don’t even think about, they don’t need to.

Depression isn’t a one size fits all illness. It strikes everybody slightly differently. Everybody deals with it slightly differently. We do what we have to do to get through each day. I make no apology for that.


If sleep is for the weak…

No sleep for me again. My levels of fatigue at the moment are incredible but not in a good way. I want to sleep all the time and not because I’ve been burning the candle at both ends. I have a visit to the MS nurse this week and I’m really hoping she can suggest something that doesn’t come in a pill form to help me. I’m terrified of sleeping tablets and I’ve been on the losing side before, of a drug that was just meant to invoke mild drowsiness as a side-effect to dulling the effect of some of my MS symptoms. Coffee is my best friend at the moment.

Apparently though, I’m “strong”. I get that a lot. It sometimes makes me inwardly laugh as it seems my highly strung out, totally stressed and complete terror manifests itself as strength…in the eyes of others anyway. I wonder if my complete inability to acknowledge my fear and ask for help comes across as strength? Surely not. Perhaps it’s the fun I poke at myself and my epilepsy that makes people think I feel the same about my MS? I don’t.

God knows, when all this kicked off I tried really hard to be positive. Really hard. I changed my lifestyle to try to give myself a better chance of beating the odds, it didn’t last. I think the fatigue plays a massive part in this game. The more tired I am, the less convinced I am that I can scupper the negativity and regain the rosy view.

So that all got me to thinking invention and reinvention.

Invention, I suppose, is best described as the creation of something that didn’t exist. Then reinvention is taking something that exists and changing it to create something new. But, if necessity is the mother of invention, then what is the mother of reinvention? Evolution?

Take the wheel. We are often told that we should not try to reinvent the wheel, but was the wheel ever actually invented or rather did it evolve from something else? Around 5000 years BC there wasn’t any knowledge of a wheel per se. People – think Egyptians – used other methods to move objects. Logs for example. Logs are round(ish); wheels are round. So did the use of logs precipitate the evolution into wheels? The invention of the wheel can not be attributed to a single person. Around 3500 BC, across several cultures there is evidence of a wooden wheel being attached to carts. Then the wheel evolved further into the multitude of different “wheels” that we have today. As populations grew, trade increased and with other developments, I guess the invention of new circular objects, for example cogs, was required. Evolution is then the mother of reinvention, yes?

How does this relate to me then? Well, my life is evolving. Rapidly. These changes mean I need to make adjustments too. Is it time for a reinvention of myself? I don’t know. I’m rambling. It’s the tiredness…

The last few weeks have seen a new set of challenges. My Mum is in hospital, my Dad is using a washing machine unsupervised and the shower has started shooting water from the wall instead of the shower head.

The camel is, once again, being stacked with straw.

Sleep is for the weak…coffee is for the strong!


MS and Pizza. Here we go again…

Two weeks ago I was back in hospital to have more tests and to take part in #msfuture. MS future is a clinical study that takes newly diagnosed MS patients that have not yet started medication and takes tests at the beginning of their journey and then repeats the tests after one year. 

The results of this study will not help me. However, if the scientists and doctors performing the trial can use the results to identify what is different in the way MS sufferers biologically and chemically present then it could help them find ways to manage (or even help prevent) the condition in the future. I am number 153 in the Scotland-wide study. For those that don’t know, Scotland has one of the highest levels of MS in the world! I found out at 45 I was affected, so it can happen to any person or one of their loved ones at any time. That’s not meant to scare, it’s a reality and one that I wasn’t aware of until about 6 weeks ago. Life can be brutal and beautiful at the same time. Yet, remarkably few people choose to take part in these trials. I know it can’t help me, but maybe it can help my niece, my cousin, my friend, my colleague or a complete stranger in the future. And all it took was my time, a bit of blood and a couple of cognitive tests. 

I can totally understand why people choose not to take part. Dealing with the diagnosis is enough to handle. Yet, the condition won’t just go away. I feel like I’m giving back in some way. I don’t want anyone else, let alone a relative or friend, to feel the way I’m feeling right now. It took a few hours and life is sacred and time is precious. I’d rather spend time helping a future sufferer than moping about my own situation.

All that said, I’m no saint and I am human, so when I went back to hospital last week for an appointment with the neuro-opthomologist to determine if I would need specialist equipment and if my vision was holding steady, the news I got floored me. Again.

The appointment I had was with the neuro-opthomologist, yet he chose not to see me, instead he sent “a colleague”. At first I thought maybe he was sick and not in the hospital that day until I found out he was actually in the consulting room next door and his “colleague” kept going to him and asking his opinion on certain things. I could even hear him telling his “colleague” what to ask and about what my responses had been! Surely it would have been far quicker and less likely to introduce error if the man had just chosen to be in the room with me?! Even if his “colleague” still did all the the testing and talking.

After he had picked up all the lenses he had dropped on the floor while examining my eyes, “colleague” then told me that they still didn’t fully believe that my visual problems are MS-related and in fact could be a completely different issue. I was shocked, floored, upset and confused. Hadn’t I waited months for them to rule out other conditions while I waited for the MS diagnosis? Are they now telling me that I don’t have MS or are they telling me that I do have MS but I also could have another condition. He wouldn’t be drawn on that question. By that I mean, he just didn’t know. It was at that point I shut down. I couldn’t take this in. He was telling me, I think, the condition that it could be but I can’t recall what that is. If there was a chance it was an eye condition that presents in a similar way to MS, but isn’t NMO, then why the heck didn’t they do these tests while I was being tested for everything else??? I don’t understand that. I mean they tested me for virtually everything under the sun, but not that?? I can’t help but think that if this neuro-opthomologist had seen me months ago when he was first asked to, then this might not be happening. Then I wouldn’t have been lulled into the false sense of security of an MS diagnosis. I feel like I’m back to square one. It’s probably MS, but it might be something else instead of, or as well as.

My experience of the NHS til this point has been wonderful. The nurses, the doctors, the consultants (one notable exception) have been exceptional. Then this. I was first sent for more blood tests, to a nurse who couldn’t have cared less. My blood was leaking out of me slowly and she obviously couldn’t be bothered to wait until the final vial was filled and she just decided “I suppose that will be enough”. If that amount is “enough” then why is the vial not that small??? No answer, just a shrug. Obviously 2 more minutes of her time, was too precious than the potential of me having to go back and have yet more blood taken. She then sent me on my way to go for a chest X-ray (the reason for this X-ray, is still not clear to me, but in trying to be fair to “colleague” he probably did tell me, he just didn’t appreciate that I’d shut down). Her directions were, “right, left, right and then go along the huge long corridor, then ask someone else. Needless to say I got lost. Several times. Eventually an orderly took pity on me and walked me to where I needed to be. Thank you kind stranger.

At the X-ray department the extraordinary staff of the NHS I’m used to, reappeared. Smiley, friendly, courteous, understanding and sympathetic. Yay. After a few attempts at the X-ray, accompanied with an explanation of why there was a few attempts, a few giggles and detailed instructions of how to leave(!), I went home. Gutted. Confused. In tears on the bus. Fearful of my future yet again. 

I wanted pizza. A message saying as much to Daniel my PT, gently convinced me otherwise. Again I have to thank Edinburgh Fitness Solutions for not only helping me turn my physical life around, but supporting me through my mental and emotional anguish. 

The tears continued for a while and eventually stopped and the resignation to this situation appeared. All I can do is focus on what I can control in terms of my health and fitness. Friends say the doctors are only trying to do the best by me and make sure that the diagnosis I have is the best one. On some level, I get that and am grateful for it. What I don’t understand is why it’s happening now and not months ago when I was going through all the other tests. Why have they waited until I’m about to embark on a pretty brutal drug regimen alongside my epilepsy control to decide to introduce this new complication. Why didn’t the so-called expert first see me when he was supposed to and secondly even deign to be in the same room as me?

I’m scared. Again. I’m confused. Again. I’m deflated and I’m worried. I want answers. I need answers. I deserve answers. 

But, I don’t want pizza. 


Jigsaws and New Beginnings…

Everyone is entitled to a second chance, right? A chance to pick back the pieces and build new connections? I think that has to be true. I don’t really know how I feel about that in the context of evil people, but right now, they don’t really concern me.

So this is the first kinda proper musing since I plucked up the courage to change what has worked for me – Epilepsy and … –  and turn it in a new direction. Those particular puzzle pieces worked beautifully for me, but now they aren’t so easy to push into place. It’s time to take a new chance in a new direction. This is something I’ve been procrastinating over for far too long.

Procrastination is something I do bloody brilliantly, even if I say so myself!! If I can put something off, I totally will. I’m not sure I even do it deliberately. I think all my latent fears and worries are so ingrained that they do it for me! So changing the way I write this blog, for example, it’s something I’ve turned over in my mind for a very long, long time. But I was worried about how it will be received? I mean, how could I go from writing about how one particular aspect of my life affects me, to writing about, well, how life affects me? That’s when it kinda dawned on me, that I’m being daft. Epilepsy is a part of my life, but it’s not my whole life and I was really writing about that anyway. So, what difference would it make to just change the titles of the blog posts?? That’s really it. Oh and spending hours trying to figure out how to make the new blog posts go on a different page! A tech-whizz, I am not! So, if you know how to keep the previous blog posts on one page and direct the new ones to the new page, please feel free to drop me a line – I’m clueless. What I did, finally, figure out is how to make the new posts go on a new page (categories rule!) but not how to stop them still appearing on the Epilepsy and … page. Heyho. Into each life, a little rain must pour – right?!

So, my jigsaw. I think most of the pieces are in the right place to date. Most of them. I know some of them aren’t sitting comfortably and so they will need to be unpicked. I don’t expect this to be something I find particularly easy to do, so I guess I’ll just have to take my time. The first thing I need to do is accept that they are in the wrong place. I can’t force it anymore. Forcing them, or rather forcing the actions that they represent, is becoming too draining. I know in my heart that they aren’t right, but making the changes seems too overwhelming, too hard and too downright scary! I do know, however, that those pieces need to be in a different part of my life. They need to be attached to the past. The pieces, I believe, are correct for my life, they have served a purpose, but they are not in the right place. Other elements in my jigsaw have built up around them and proved that, while at the time, it seemed like they were a perfect fit, they simply aren’t. I’ve spent a great deal of time and far too much energy pretending that they are.

There is a lot going on in the world right now. War, famine, new presidents, old leaderships, protests, acquiescence, ignorance and fear. The world seems like a more vulnerable place to me than it did even a just a couple of years ago. The feeling of a global hope is something that seems like a far-fetched fantasy right now. That’s my feeling. I watched the inauguration of the new President of the United States the other day. As I watched and tried to comprehend the speeches, I was struck by something entirely different. I don’t think it was my imagination, it very much seemed to me that there was a lady standing up there who simply did not want to be there. A lady who seemed completely terrified at the position she was occupying and one who firmly believed she shouldn’t be there and didn’t want to be associated with it. That lady finds herself standing next to POTUS. She stands next to her man, rightly, because she married him. But I kinda wonder if the reasons why she married him were running around her mind. Maybe she is waking up and thinking about her jigsaw and how the merry hell it ever came to this! She will forever now, be compared to the ladies that have come before her. And probably to the ones that come after her too. Her position, to me, seemed even more painful because of the speech the outgoing POTUS made about his lady wife taking a role she didn’t ask for and making it her own. I found myself wondering how the present FLOTUS is going to do that, or even if she will. I felt for that lady standing up there. That lady who is lying in the bed she made, but under the duvet she probably didn’t want. That lady is now bound by something more than a marriage vow. I thought she looked lonely and scared.

There are lots of sayings that sort of fit with how that lady is where she is. They apply to her and they apply to all of us. The first one that springs to mind is “you reap as you sow”. What you put out and lay the foundations for are what you will gain in return. Yet, it just isn’t as simple as that. We all know how it feels to put our heart and soul into something, only to find that it fails or isn’t reciprocated. (Reciprocated. One of my favourite words). What does that mean in real terms? Well, I can’t be 100% sure because god knows I’ve put my heart and soul into a lot of things and got, what feels like, nada in return. But what I think it means, is that if it’s the right action, at the right time and for the right reason, then the reward will be bountiful. But if it isn’t, then reward is in the form of a lesson learned. Those lessons are bloody difficult. It’s often nearly impossible to pick up all the scattered pieces of a broken heart and dream and accept that all the effort was merely for a lesson. My personal experience has been that its far easier to pick up the bits that are within reach, leave the other bits behind and retreat. Retreat and stay afraid of the same outcome and so not try again. Does that make sense? If I’m being honest, though, that approach hasn’t really got me far.

So my jigsaw. It’s a work in progress. That’s the best way I can describe it. There are some bloody lovely parts, there are some not so pleasant pieces and there are too many bits in the wrong place for my liking. I find I can no longer live comfortably with that knowledge. It’s time to pick them up, turn them over and around and have the courage to place them where they truly belong. Then thrust myself back into the box of pieces, there are millions of them, run my hand over a few of them and choose some new parts. I can do that. Life is full of chances and opportunities after all. If I’m not in that metaphorical box of pieces, then I can’t take advantage of those that are there for the taking.

Life is a choice. Life is a chance.



Epilepsy and Eccedentesiasts…

So, on Wednesday night my brother found my 4-year old niece, limp and unresponsive, in her bed. How utterly terrifying. He put her in the recovery position and they waited for an ambulance. He didn’t witness her having a seizure but she did have a prolonged episode where she had small twitches down her left side. I can’t imagine what must have been going through his mind. Today is Sunday and she is still in hospital. She has had CT scans and a heart trace and has been monitored carefully. She isn’t getting medication anymore and hopefully she will be allowed home today. Yesterday, she got a couple of hours out of the hospital, but unfortunately she was required to go back just for further observation. My brother described it as being like an open prison. This has been my niece’s first, and hopefully last, apparent seizure. As is right, her tests came back clear and she isn’t being diagnosed with epilepsy. Phew. But she is being sent for an MRI and her parents are meeting with a seizure nurse so they can know exactly what to do if it should happen again and they’re being given meds for her should she have a seizure and it lasts for longer than 5 minutes. The hospital has done everything they can, and more than I would have expected, to arm her parents with knowledge. My niece has been a trooper throughout the whole episode and taken all the needles and medication without complaint and recovered very quickly from the initial episode. What a little star. 

A frightening time for the family. The whole family. 

If you’ve been reading this blog for a while, you will know that there is a genetic link to epilepsy within the family. I have it (doh, obviously) and there are at least 2 other instances of it within the family tree that I’m aware of. My cousin had a seizure at 15 which proved to be a one-off and, currently, I’m the only family member that has a diagnosis of epilepsy, thankfully. I would wish it on no-one. 

It’s entirely likely that my niece’s episode was a one-off. I hope her parents treat it as such and don’t wrap her up in an extra layer of cottonwool on the off chance that it may happen again. Like Canut could not hold back the tide, no-one can prevent epilepsy from occurring. The trick is to try to live a life as close to normal as is possible within the confines of your own individual diagnosis. And if you haven’t had the diagnosis then don’t live as if you have or indeed as if you might. There is ultimately no point.

I’ve been a little quiet in this blog for a while now. I’ve been busy touring the darker recesses of my mind and I didn’t want to write about it. It felt too inky black. But my niece’s episode has brought me to the pad once again. Epilepsy comes with its challenges. So does depression and it’s depression that has been routing around in my wiring for the past couple of months. The trigger of this particular depression, I’m not 100% sure of, I often don’t know at all. It comes in waves for me and this current episode is rough waters and giant waves. I haven’t been able to get on a train or go on a plane since my last seizure in June last year. I’ve been going to Poland a couple of times a year for the past few years, by myself, very happily. But not since I came to in a pool of vomit last year. Much as I usually try not to dwell on my episodes, I don’t usually see the point, I’ve been in a depression for pretty much the entire time since it happened. I’m scared to travel. I’m scared to travel on my own. I’ve missed a retirement party, I’ve missed holidays, I’ve even booked flights and train tickets thinking I’d get over myself and my desire to go away would kick in, but no. It’s not so bad if I’m travelling with someone. It feels different, but by myself? Not a chance. 

What do I do? I’m struggling to make people understand my terror. I’m struggling to understand it myself. Am I reverting to a time when I was scared of everything except my own four walls? I don’t know. Depression is one thing, but the fear of being on a bus, train, plane by myself and having another episode is consuming me. The thought of never again wandering the streets of Krakow myself is paralysing me rather than shaking me out of my fear. The thought of being alone is just too much for me to process. I don’t know why. 

One friend has been trying to get me to go visit her in Ireland. I want to, I truly do, but I’m terrified of travelling there alone. I’ve booked flights in the hope I would man-up as it were, but no, I can’t do it. Another friend wants me to spend time with her in London. Same country, yep, but the thought of the train journey is too overwhelming. All I can do is hope they understand. I don’t know if they do. I pray they don’t think I’m making excuses. I haven’t seen my oldest friend in almost a year because of this ridiculous fear. She is a 2-hour train ride away. 2-hours. It seems like 2-months to me at the moment. 

I have to admit that I’m struggling at the moment. I haven’t wandered in this level of darkness for this length of time in an age. Yes, I have tried to talk to someone about this. I can’t articulate it. When I give a voice to my fear, it sounds ludicrous even to me, but I can’t contain it. I can’t tighten the leash and bring it back under control. I’m becoming the recluse again. The tears come before the words and I find myself lost and unable to adequately describe what’s going on internally without it bordering on the ridiculous. 

At work, the smile is plastered on and like the eccedentesiast that I am, the fear is pushed back to behind that smile and my loudness tries to drown out the chattering of the fear and depression within. 

Haunted by my own spirit. My strength is waning and I know this depression is getting deeper. 


Epilepsy and a Blot on the Landscape…

Over the past few days, I’ve been reminded again (as if I needed to be) as to just how much daily medication changes me. Due to a mix up that’s just too farcical to go into, I didn’t have my proper dosage of either meds that I take for a just a couple of days. Just to be clear, I take daily anti-epileptic drugs and daily anti-depressants. Anti-everything in order to live a pro-life! Maybe I’ll get to how that makes me feel later. I know medication changes me. Those of you who have been on this blogging journey with me for a while, will know that I struggle with being constantly medicated. 

After just 2 days of less drugs than I normally take; this is how I feel. Remember this was a forced withdrawal, if you like, this is not a gradual, doctor-sponsored reduction in medication. Cold turkey.

  • Disorientated
  • Unable to make a decision
  • Upset & weepy
  • Headachy
  • Weak
  • Scared

I’m functioning on the periphery of my capabilities. I know what to do and I know how to do it, but I’m terrified that I’m doing something wrong. The world around me has slowed down and I feel hyper-sensitive to everything. The fear of fitting is so much worse than a seizure itself, in my opinion.

When I woke yesterday morning, I felt OK. Lying in bed, posting on FB and basically ok. Then I got up. Then the world shifted ever so slightly out of focus. I knew that I was going to the chemist to sort some meds, but I also knew that this was not going to be a quick “take a few pills you’ll be fine” situation. That’s the rub. So, went through the morning routine, went to the chemist, became irked at the assistant’s inane chatter and hyper-enthusiasm, but squashed the frustration down deep so he didn’t see it. I got on the bus to head to work. The weirdness spreading through my veins reached a new height. I didn’t want to be on the bus, I was scared I wouldn’t know when to get off it. I got to the office and explained to my boss that I didn’t feel right and I explained why (my work are good about my epilepsy, can’t fault them for the support they give). My boss asked me if I wanted to just go home. I didn’t know. I couldn’t decide whether to stay or go. I didn’t know what was going to be better and the frustration at that was bubbling up. I told him I didn’t know and couldn’t decide. He asked me if it was ok if he made that decision for me and he sent me home. I’m grateful for him for doing that. I took my laptop and I went home. The bus journey home held the same fears as the bus journey to work had. I don’t know why I didn’t get a taxi. I knew I probably wasn’t going to fit, I was too aware for that, but I also knew I wasn’t making the best decisions of my life. 

I spent the rest of the day doing little bits and pieces of work that weren’t particularly taxing. I went to bed early and, of course, I didn’t sleep well at all.

So, how do I feel today? Well, I’ve had my meds, but I still have a weirdness (wish I had a better description of that feeling) that’s hanging around. The world has speeded up a fraction and I’m probably a bit more on the ball than I was yesterday. Fear is there and there is also a bizarre sort of throbbing heaviness in some of my muscles.

Think I’m in for another rough day.


Epilepsy and Travel…

I’ve travelled to some far-flung places in my life so far. I’ve seen a lot, done a lot and met a host of superb people. All while living with epilepsy.I’ve never had a seizure while I’ve been travelling. Maybe it’s just coincidence, but I think it’s because I’m happy. I’m not the most confident of people, but I push myself out of my comfort zone so that I can experience the incredible. Having epilepsy doesn’t have to mean giving up on life. Having epilepsy doesn’t have to mean shelving all hopes and dreams. For me, experiencing the incredible is made all the sweeter because it means my epilepsy hasn’t beaten me down and taken over my life.

My life. My choices. My decisions. My brain. My body. My hopes. My dreams. 

In a way, epilepsy has made me a stronger person. I could have chosen to let it be the major deciding factor in all my options, but instead it’s a consideration and no more. Yes, of course there are days, sometimes longer, when I’m scared. I don’t love having epilepsy. The scars I have are real and some are a bit more than just skin deep. Sometimes the fear is overwhelming. Sometimes I’m scared to leave my house. But in the years that I have lived with this life-altering condition, I can honestly say that the good times have far far outweighed the bad. It isn’t always easy to face your fears, swallow the panic and put a smile on your face, but it is worthwhile.

Gansbaai. I’m living my dream. I’m about to go cage diving with Great White sharks. Sharks have fascinated me since I was little. I don’t really know why and I guess it doesn’t really matter, but for as long as I can remember I wanted to dive with them. Having epilepsy meant that it was not really going to be a viable option to deep sea dive, I wasn’t able to find a dive centre that would take me and my epilepsy on. It’s dangerous for multiple reasons. I could have lied in order to get my PADI, but I won’t put someone else’s life in danger just so I can get my own way. But, as it turned out, I was able to do a surface-cage dive. 

The water was murky, the weather, moody. The perfect day, in my opinion, to be in the domain of an apex predator and the subject of years of fascination. I was not disappointed. Steel grey body, white underbelly and coal black eyes. The first of the Great Whites was gliding past the cage, idly eyeing us behind our bars. Sleek, graceful and 4 metres of pure power. I was barely able to contain my excitement at being within inches of a shark in his natural habitat. My attempts at underwater photography were woeful, but in my mind I can still see every detail. Was I thinking about epilepsy? Hell no. 

I’ve just returned from 5 days in Moscow. Five wonderful days. I’ve seen some of the sights I wasn’t sure I’d ever get to see in person. St Basil’s Cathedral and Red Square to put a name to just two. I saw them with some of the fantastic people I met in Moscow, who gave up their personal time so I could experience just a smidgen of the city. Was I thinking about epilepsy as I wandered the streets with my new friends? Hell no. I was immersing myself in the sights and sounds of a vibrant, pulsating city of contradictions. The magnificent architecture of Lenin’s Library just along the road from the huge, gaudy, glass-fronted modern hotels. The fairytale splendour of St Basil’s opposite the massive, modern, GUM shopping centre. Did I think about my epilepsy whilst marvelling at what I’m seeing? Hell no.

Having epilepsy and travelling are not mutually exclusive. In the same way as having epilepsy doesn’t exclude a person from being a productive member of society. One life is given to us and it is up to us what we choose to do with it. I live alongside my epilepsy every single day. Sometimes it taunts and torments me. Sometimes it beats me up and leaves me bruised and bleeding. Often, it lies dormant. I’m lucky. I’m going to suffer seizures my whole life, whether I live with that or whether I just exist, is my choice. 

I choose life. I choose the incredible. I choose experiences. I choose vibrancy. I choose laughter. I choose joy. I choose.


Epilepsy and November…

You are not alone. 
It doesn’t always seem like that though. When that little bubble of fear is swirling in the pit of my stomach and I can’t explain it away to myself, let alone someone else. When I don’t know if I just feel a little under the weather or if it’s the pre-cursor to an episode. When my head is pounding like a jackhammer and I don’t know if I have a headache or if it’s something more sinister. When I wake up feeling a little bit confused and a wave of panic courses through me because the first thought isn’t that I’m just waking from a really deep slumber but is “I’ve had a fit”. When I simply just don’t feel right. These are some of the times I feel really alone.
It’s because I can’t explain the feelings. I can’t put them in to words that make the slightest bit of sense. If it’s my automatic thought that I must be going to fit, then it stands to reason that it will be someone else’s too. So, I usually say nothing. Sometimes I’ll tell someone that I just don’t feel “right” and that maybe they could just keep an eye out for me. Sometimes I say that and, to date, every time I have said that, nothing has happened. Weird. Maybe I should say it every day! So, generally, I try to swallow the feelings down. I try to change the road my thoughts are going down and I try to ignore how I’m feeling.
It’s isolating though. A lot of the time I don’t tell anyone else how I’m feeling because I don’t want them to worry. Because I know that 9-times out of 10, if I say I’m not feeling ok then I will be fine. Then there are the times that I feel like I’m making a big deal out of nothing and that the fleeting expression that just crossed the face of the person I’m telling is proof of that. Sometimes I’m trying so hard to suppress the feelings that I forget I’m actually allowed to have them! 
Sometimes I think about all the feelings inside me that are left unexpressed. The little bundle of hope trying to clamber its way through the maze of fear, helplessness and isolation. Every now and then it stands on top of the negative and yells “I’m here” so loud that it’s impossible not to feel hopeful. Then, it’s as if that sneaky, writhing, mass of darkness just grabs it by the ankle and pulls it down again. Hope gets buried, but it’s always there.
Lately, the feelings I’ve long suppressed have been bursting out. Usually accompanied by floods of tears, usually at completely inappropriate times and never anything to do with my epilepsy! It’s like the feelings and thoughts that I’ve worked so hard to hide for so long have got together, merged into one and are tumbling out the only way they know how. If I won’t consciously release them, then they’re going to stage a mass breakout type thing!
It’s draining. It’s confusing. The flow can’t be stemmed and I’m haemorrhaging feelings! I was told when I was in my teens that I felt nothing, that ice water flowed through my veins. Oh, how I wish that were true. I was told early on in my epilepsy journey that I was “pathetic” when I expressed fear regarding my condition. The tears that had accompanied the confession were belittled. So, I suppressed them. That made me an ice-queen apparently. The whole damned if you do, damned if you don’t scenario. Now, decades later the ice has seemingly melted and is leaking out through my tear ducts! 
I guess the issue is, the fear, anxiety and untold pain regarding my epilepsy that was pushed in, isn’t exactly what’s coming out! In order to escape the confines of my mind, the feelings are latching on to any piece of negativity that finds its way into my head, however fleeting, and are working my mouth like a master puppeteer in order to be expressed. My feelings of isolation as a teen and young adult surrounding my epilepsy, long buried, are beginning to make themselves known, albeit they’ve morphed into something that seems unrecognisable to me.
Perhaps if I’d known I wasn’t alone all those years ago, then I’d be more in control of myself now. I sometimes feel like a hormonal teenager all over again because I can not rein in the tears of frustration and anger that are rampaging through me. I can not seem to find the appropriate words to express myself properly in situations that demand propriety. I keep hoping that today will be the day that I can get through without tears.
Epilepsy is experienced differently by each person who lives with it. But there are some elements to it that bind us together. Fear, hope, anxiety, helplessness and bruising are just some of the parts that can bring us together. I might not experience these the same way as you, but I do experience them and much more. I know now that I’m not alone. I know now that there are individuals, associations, forums, groups and societies out there that are standing with me. In my adult state, I know that for me, I just need someone to listen. They don’t need to say anything, they just need to listen. So I can say, out loud, that I don’t feel right without worrying how they are going to respond. For you, it might be different. It doesn’t matter if you need something different. What’s important, is knowing that you are not alone.
November is Epilepsy Awareness Month. So, wear a splash of purple and know you’re not alone.