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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.

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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.

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Epilepsy, Janet & KitKats…

I was supposed to be in Krakow last week. Instead, I was at home, hiding in my family tree where I made a discovery of another epilepsy-related death in the family. This time on my mother’s side of the family. The not travelling thing is something I’m going to have to deal with quite soon. My confidence is just shot to ribbons.

Anyway, I’ve written before about GGG Agnes, she died during a seizure in 1914. GGG Agnes was my Dad’s great-grandmother. Janet, my Mother’s second cousin, died during a seizure in hospital in 1933. I wonder just how different their deaths were. What was it like to die at home in 1914 compared to a hospital in 1933?

Today, I spent another long day at the hospital, thankfully courtesy of a scheduled appointment, rather than my usual drop-in-uninvited-via-an-ambulance visit. More scans, more blood tests, more eye examinations, more questions. No more answers. No reasons as to why my body attacks itself. Nothing to help my mind understand so that it stops attacking myself.

I wonder if answers are what its all about though. I mean, it only really matters if the answers enable a resolution? Understanding the why is only part of the story. The next chapter is fixing the why; the prequel is prevention. For me, though, I need to understand the why. I don’t mean the “why me?”; I just mean the why. It’s the only way that I can sort of come to terms with my situation, even if I may never be able to change it. I participate in clinical studies fully in the knowledge that any discoveries made are unlikely to be able to help me, but they could change the life of another human being.

The consultants went to great lengths to explain that I didn’t do anything to give myself MS. On an intellectual level, I kinda get that. I want to get that. But, there is a niggle. An itch that can’t be scratched. With my epilepsy, I spent a long time believing it was the solely the result of a terrible skiing accident. My brother spent a long time believing it was solely the result of him breaking a snooker cue on my head when we were kids. My parents never offered an opinion and it wasn’t until I found out they knew about GGG Agnes that I understood their lack of opinion. In actual fact, it turned out that I was genetically pre-disposed and that in all likelihood the near-death experience in the Alps had simply triggered the faulty gene. It is virtually impossible that the snooker cue incident was the cause.

There are at least two incidences in my family tree to confirm the genetic disposition to epilepsy. I wonder how common it is to have at least one incidence of death by epilepsy on both the maternal and the paternal side of a family? Of course, knowing these relatives died during a seizure is different from knowing how many of my kin suffered from epilepsy but died from an unrelated cause.  I find myself looking through the death certificates amassed for my family to see if I can find anything that may point toward MS. I know its probably a futile exercise and I know that it would be virtually impossible to prove a link, but I feel like I have to do it. It’s a kind of compulsion.

MS can be genetic. You’re apparently more likely to get MS if someone else in your family has it or had it. So, I wonder if I will find that link, whether the gene is inherited or whether I’m just bloody unlucky. If both conditions are inherited then perhaps it’s a good thing I can’t have kids.

It’s interesting, to me anyway, to look back and see what kind of medical research was going on throughout the ages. Given that 1914 and 1933 seem to be featuring heavily for me at the moment, this is part of what I found (paraphrased of course!).

Most of the interest of the day seems to centre around electroencephalography. In 1912, a Russian physiologist, noticed the electric changes in the brain during experimentally induced seizures. In the same year, Pravdich-Neminsky, a Ukrainian physiologist, published the first animal EEG and two years later the first photographs of electroencephalography of a dog were published. Important discoveries in electroencephalography were made during the 1920s and 1930s. In 1924, Berger, a German neurologist, recorded the first human electroencephalogram. His results brought controversy and scepticism within the scientific community, but he was not ignored and his results were confirmed later. In 1932, Berger reported sequential postictal EEG changes after a generalized tonic-clonic seizure, and in 1933 he published the first example of interictal changes and a minor epileptic seizure using an EEG. Also in 1912, Alfred Hauptmann was able to synthesize phenobarbital, one of the first anti-epileptic drugs. Fascinating times and great strides forward being made in the clinical side of epilepsy, unfortunately, the social side was still lacking far behind.

So far, in my family research, I’ve not been able to find any clues as to whether MS has played a part in any of my family history. Apart from those deaths during seizures, there has been a worrying amount of heart disease, one “burned to death” in 1834 (must investigate whether she was attached to a stake at the time – the dates would fit with epilepsy=witch!) and an unfortunate dock worker who was hit on the head by a falling wooden beam. Nothing suggestive of an MS symptom, but there is much out there still to research about my relatives…

So, I’m left knowing I need to spend more time in the hospital next week. More tests! I do wonder if its worth it sometimes. I wonder how things would be if I didn’t have MS in particular. I don’t know what “normal” should feel like anymore and I miss knowing myself. It feels like the questions are designed to catch me out. Yes, I’m so very very tired, but I don’t know how much of that is related to the MS, depression and epilepsy! Why aren’t the doctors able to answer that question? Why does it seem to be down to me to know that answer? It’s frustrating in the extreme. I didn’t go to med school. I don’t know the answers and whereas I’m fully aware there is very little definitive info that can be given to me, I want to hear the consultants’ opinions and reasonings as to what is going on. It’s hard to know there are no answers. Phrasing questions like “could it be that…?” – well, of course it bloody well could be anything, but I don’t know! That’s why I’m here asking you the questions!! It’s like saying to me “well, you’ve highlighted there is a problem here, but how would YOU fix it…”.

Ok, so I’ve established I’m frustrated. Tired and frustrated actually. Stressed out? Yep, tick. Burning red twice a day? Yep, tick. However, on the positive side, so far at least, I’ve not burned to death; I’ve not been crushed by a log (my bro tried that one, when we are kids – didn’t work then, won’t work now); and I’ve discovered the wonders of Dark Mint KitKats. I don’t think you’re supposed to eat as many as I have, but to date, my hand-to-mouth co-ordination has not been affected by either MS or Epilepsy, so I’m bloody well going to make the most of it!

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Ruminations with Rumi…

I feel like I’ve been fighting my whole life. There is a war that rages between my physical deterioration and my mental or emotional strength. The weapons used are cruel, there is little respite and the stakes are fricken enormous.

Rumi referred to emotions – all kinds of emotion – as “unexpected visitors”. Rumi thought we should let these callers in and let them visit with us for a while. Give them a cup of tea and get to know them type thing. This concept from the 13th century passed the stiff upper lipped British by. Why do we feel the need to be restrained and remain resolutely defiant when an emotion comes calling?

Rumi writes beautifully. Well, the way he has been translated from Persian to English is beautifully done anyway. I’ve only relatively recently been introduced to his writings and they resonate with me pretty deeply. I read all sorts for all sorts of reasons.

I read because I desire to understand. I read because I want to learn. I read because I need to get lost in a world that isn’t mine. I read because I long to escape. I read because I must. I read because I can. For now, reading is an ability that has escaped the tortures of my mind and body. Reading takes it all away. It’s my shelter and my comfort. It reaches into my soul and makes it laugh, makes it think, makes it feel invincible and makes it forget. Reading nourishes me. Language fascinates me. Evolving language, at once, gives me joy and makes me long for the days when Mr. Marshall taught me that “focussed” has a double s!

When I hear someone describing reading as boring, I can only think it’s because they haven’t found the right book yet. Going back to Mr. Marshall for a minute (he was one of my English teachers at school), he always said there was no such thing as a boring activity only boring people. I’ve turned that over in my mind a lot over the years between him first saying it (he said it a lot) when I was 14 and now when I’m 46. I came to the conclusion a few years ago, that what he was trying to say is that everyone is different and will feel differently about every activity, be it reading, playing football, singing…whatever. That means the activity in itself cannot be described as boring. Boring people, however, are those that choose not to engage in any activity at all. That’s what I think he meant. He’s dead now though, so I can’t ask him. I wish I had at the time. But, well, if wishes were horses, beggars would ride.

Anyway, I’ve digressed. I do that a lot. So, why do we find it so difficult to sit with our own emotions and acknowledge that we have them? Are we conditioned to believe that we should only feel positive emotions? Are we only allowed to feel happy, excited, thrilled, delighted, amused, loved, loving? Why do we feel its ok to acknowledge that we feel angry about something but not that we feel hurt by it? Why do we feel it is a weakness to be able to show vulnerability, but at the same time not be shocked when we get hurt? Why do we see it as inevitable that if we display an emotion that is not perceived as socially acceptable that we will somehow be thought of as a lesser person? Who decides what is socially acceptable??

My experience of showing emotion has not always been positive. I didn’t show my true feelings for years after I was told that my tears were pathetic and weren’t going to be put up with. I was 15. In order to swallow down the emotions I felt (& god knows at 15 I felt them ALL), I built some bloody fantastic walls. My grandad, a builder, would have been mighty proud of my structures. The wolves were not going to huff and puff and blow my house down! My house. There was no door. There didn’t need to be. I wasn’t coming out and you weren’t getting in. Simple. I was described as having ice water running through my veins. Apparently, it was discussed at length by people other than me, that I felt nothing. I felt baffled by this. If I showed that I was upset or hurt or confused or in pain then that was wrong, but if I showed nothing at all then that’s wrong too?

As a consequence of this inner conflict, when my emotions burst out of me as they are want to do, they were generally inappropriate. I couldn’t control them. I tried to channel them in the various sports I engaged in, although I didn’t know at the time that’s what I was doing. I was young, I was scared and I felt alone. So, I stuck everything in my solid house, climbed out the one window and tried to live a life that wasn’t full of anger and frustration. And I did.

I’ve had many, many wonderful adventures in my life. I’ve seen a lot of things others can only dream about. I’ve done a lot of things that others can only wonder about. My memory bank is full to brimming with wonderous colours, sights, sounds, people, noises, feelings, music and laughter. The flora and fauna of many a country are stored away to be brought out in writings or in musings or just to give a little colour to my day. All of this is juxtaposed with my house.

It’s only been in the last 10 years or so, that the window to my house has been cracked open. There is still no door. So if you want in, you have to really WANT it. One of Rumi’s most famous quotes is “the wound is the place where the Light enters you”. I liken that to the cracking open of that window and allowing someone other than me have a bit of a wander around. It surprises me to this day how hard I find it to let people into my life. This blog helps me immensely in my journey toward sorting through my house and throwing out old rubbish. I know now and acknowledge that I’ve been suffering from depression for most of my adult life. Acknowledging that was probably the hardest thing I’ve ever done, but liberating at the same time. For a few years, it was only me and my GP who knew. (When I think about this, it isn’t so. I suspect a lot of people knew that I was suffering, but god forbid they suggested it to me.) When I decided to go public, it was done so casually that when I think about it now it makes me giggle. I would just drop it into conversations. As an adult, I’m better at knowing when it is and is not appropriate to do certain things. So while I would throw out this comment about “my depression” it was always in the right place in the conversation. It had to be.

So, my mental state is on one side and the deterioration of my physical packaging is on the other. The MS diagnosis is still fresh and raw and I struggle every day to find positives in it. At the moment, most days, I don’t see any bright side at all. Well, other than the one that lets me say “it could be worse”. I was at the hospital a few days ago and tried to get answers to the muscle weakness, the internal inferno, the other changes that are happening to my body. There are none. No-one can tell me if the weakness is a relapse. They think it probably isn’t, but they can’t be certain. No-one can tell me if the weakness is the beginning of my MS getting worse. Right now, there is nothing to be done. There is nothing that can be done. Although I feel the time is right to start saving hard for whatever future is ahead and what kind of walking aid I may need. I contemplated building an extension to my metaphorical house. I decided not to. I can’t always articulate my feelings, but I no longer want to bury them. Mainly because I simply can’t be bothered anymore. Its hard work pretending to feel something that you don’t and it’s even more exhausting trying to deny a feeling that is pervading every cell in my body.

So, I know to expect my depression to be with me. I know that the medication I take for it allows me to deal with it, in the main. I know that the medication doesn’t make the depression go away, but it does give me a bit more of myself (if that makes sense) to be able to cope. I also know that, for me, I have to sit with it alone for a while so I can process it enough to share it. I’ve learned there are no hard and fast rules when it comes to dealing with depression. I know that what works for me, won’t work for everyone. I know that just because I’m willing to share my story, doesn’t mean that everyone wants to hear it. That’s ok. That’s actually how it should be. We aren’t all wired the same way. We aren’t all moved by the same things and we aren’t all disgusted by the same things.

Thank goodness!

So back to the words of Rumi…my body may seem meek, but my spirit does somersaults in the sky! At least it will when depression has finished it’s cup of tea and it’s visit is over.

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MS & Marionettes…

Today, I stepped off the bus and I didn’t know if my legs were going to support me. Tomorrow, I’m going back to the hospital.

As I write this, there is a red, angry rash covering my whole body. It’s caused by the medication I’m on and it happens twice a day. I know it’s the drugs and I know it will pass, but there is a tiny sliver of me that wonders if this will be the time when it doesn’t go away. The rash is accompanied by a burning sensation that radiates from my head downwards. It truly feels like I’m being incinerated from the inside out. The itchy feeling makes me want to claw at my skin. I just want it to stop. I try to see the funny side. I look like a tomato and feel like one that’s being grilled. I feel a bizarre empathy for griddled foods. But it isn’t funny and I’m not laughing. Quite the opposite.

I feel like a puppet and the marionettist hasn’t a clue what they’re doing. I walked from the bus stop to work and with every step, I felt a weakness in my legs. The only other time I really feel my muscles is after an intense burst of exercise. Then it’s generally pain. Today, finding words to describe it adequately is hard. My legs felt weak to the point it was almost funny. The sensation was that of overwhelming weakness but no pain at all. I’m fully aware that my gait is all over the place and I’m supremely conscious of every other person hurrying to get on with their day. I don’t hurry. I can’t hurry. I’m scared to hurry. The invisible puppeteer with his invisible wires is leading my legs on a merry little dance that has no rhythm and no grace.

I know where I want my legs to go. I see the path in front of me and I’m trying to walk in a straight line. I know I’m not. I’m lurching almost from side to side. An old ankle injury seems to be bearing the brunt of my weird walk and I can feel a yelp from the joint. Not an out and out scream, but more that it’s reminding me that it has a valid weakness and it can’t really cope with the extra weight that is being applied at a weird angle. I don’t know that I have ever been that completely conscious of any part of my body before. Other than my eyes. A year ago.

My eyes have been feeling a bit off kilter too. They seem to leak a lot more fluid these days than ever before. I think it’s what people generally call tears. I feel fairly certain that I’m losing more than my fair share of them and I wonder if tears form part of the myelin sheath that’s meant to be surrounding my nerves, but is, in actual fact, leaking out of my tear ducts at a sometimes alarming rate. I’ve always worn my heart on my sleeve, but I was never a great crier. Until recently. Well, I say recently, but I mean in the last year or so. Don’t get me wrong, I’ve never been adverse to the odd crying session. Thankfully I’m not a wailer when it comes to the expression of tearful emotions, rather they escape silently, steadily flowing down my cheeks. I want to go back to the days when I wore my emotions on my face, but they weren’t accompanied by these hot little tears that are born of frustration, anger and fear. The problem with my eyes isn’t the tears though. I feel a pressure behind my left eye that makes it seem like it will explode at any given second. The fear that this is the beginning of a repeat of those terrifying weeks a year ago is bubbling through me. I wonder (or maybe hope) that it could just be a sinus issue and that’s what I’m feeling. Nothing to do with MS, but instead, a fairly common affliction that the vast majority of us have felt at one time or another.

I also have a, sometimes overwhelming, feeling of sadness. I’m still working that one out.

The feelings of muscle weakness that I have so inadequately described are accompanied by a terror that I try to pretend isn’t there. What if. I’m scared I’m on the verge of a relapse. I’m terrified because I don’t know how that feels and so can’t be certain. I don’t know if the weakness is just because I’m so very tired. All the time. Tired. I don’t know if I’m so focussed on every little thing my body goes through, that I am making a mountain out of a molehill. If I’m being really honest, when I try to describe these feelings to people, the blank looks and the sometimes fleeting expressions of disbelief make me feel fraudulent.

I can’t describe it. Others can’t understand it.

I used to understand my body. Epilepsy is an almighty pain in the ass, but I knew what to expect. I knew how I would feel. I didn’t always see it coming, but compared to how I feel every day now, I’m glad of that. It would hit me like a ton of bricks, leave me battered, bruised and depressed and then bugger off until it stored up enough energy to electrocute my brain again. Of course, I’m describing that in the past tense, but it is ever-present. Always in the background. Always watchful for the next chance to become the puppeteer.

Through the whole “woe is me” and the tears, I try to find the positives. My legs did support me today. I felt like a newborn-Bambi on ice, but I did make the short trip from the bus stop to the office. And I also successfully completed the return journey. Some would say I was worried over nothing, Unfortunately, that couldn’t be said until after I’d achieved the short walk to the office and the subsequent activities of the day. It went through my mind every time I sat down, that the last time I have stood up under my own steam, may have passed. Then I remember that I’m a drama queen and get over myself. But it is stored away in the cupboard that houses the electrical circuits.

At age 45, I knew me. At age 46, I’m a stranger to myself. What is it they say about strangers? They’re just friends we don’t know yet. It would seem that this stranger is going to become a friend I will have a love/hate relationship with!

Perhaps though, that will give me more cheerful things to write about!!

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Soul Mining…

I sponsor a goat. Her name is Ellen and she was rescued, along with 2 little friends, from a life of agony because of a disability. Ellen is a Nigerian Dwarf goat. Her illness is not hidden, but she was all but abandoned because her front legs are deformed. Thankfully, the owner of the farm where the goats were, agreed to hand them over to the Barn Sanctuary and she is being well looked after and having braces fitted to help with her deformity. Ellen is a lucky little goat. Someone saw her life and knew it needed to change.

I also sponsor, through Marine CSI, a Great White shark. Seamus isn’t deformed, but if you get in his way, you very well may be. Such is the nature of a shark to have to bite to know if it can eat you. The water is his domain. You’ve been warned.

It has been a very strange few weeks. Things just don’t seem right. It’s hard to describe what I mean, it seems that nothing is sitting comfortably for me and my feet are getting itchy. For once, that’s nothing to do with the MS! As well as dealing with all that comes with MS and epilepsy, sufferers also have to deal with the everyday ailments the same as the rest of the population. For me, this week anyhow, that’s been the dreaded stomach bug. There is no need to go into detail here, but I know you all get it. Well not necessarily the stomach bug, although…Anyway that, the fatigue which has moved in, unpacked and shows no sign of leaving, and the general feeling of unease, has left me unsettled. I don’t know what is wrong.

I don’t know if anything is wrong! Perhaps that’s the issue. Maybe everything is just too darn familiar. Familiarity breeds contempt, right? That could well be it. I know that I can’t take a deep breath, I know that I can’t shift the fog and I know that I can’t put my finger on what the problem truly is. Or maybe I just don’t want to. I search my soul a lot. It seems to be never-ending, but I guess that’s the whole point of a soul right? I search and look and pry and dig deep. I turn things over and put things back and return to familiar hunting grounds and see the same things. My soul is where I go when I need to research. My soul is my personal Google. I’ve been here before. Many times. The aching chasm of my soul that’s shrouded in mystery and yet alive in glorious, unashamed technicolour. It’s rich and deep and yet can be mean and shallow. It is comforting and frightening in equal measure. It sits on my sleeve and gossips with my heart. Then it retreats after it’s whispered its fears and joys, leaving me with nothing to grasp.

My soul. The keeper of all my secrets. My friend, my conscience, my harshest critic, my biggest fan, my brightest light and my darkest shadow. There lie all the answers. I know that because I believe, our souls – yes, all living beings have one – encompass everything you can’t touch or see but just know instinctively is there. Every book, every article, every column ever written about so-called self-help, tells how it all starts within. And that’s all well and good, but the only way you can start that process then, is to know what is within. Know thyself. I can’t remember right now who that phrase is attributed to, I think it was Socrates that probably coined it, but it could have just as easily been Plato. Thinking about it, neither of them probably said that phrase at all but their writings will have been a long version along the lines of how you can’t really know anything unless you know yourself. But, how can you truly know yourself? (That last sentence was put there by me, I don’t think either of them actually questioned it, but willing to be corrected on that point).

If we are ever evolving and I think we are. We all act and react differently to different stimuli and as we age our tolerances change with us and so we are always becoming something new. If we are changing all the time, then how do we keep up with who we are. Let’s take me for example. This time last year I was reeling from an MS diagnosis. Everything I thought I knew about me and my body was suddenly ripped away from me by those 2 letters. I was numb for a bit. Highly emotional for a bit. Terrified virtually always. Angry, stunned, confused, depressed and lord knows how many more adjectives could describe the feelings that coursed through me. I never returned to the Kirsty I was the day before. I tried to recover me. But that me was gone and I’m left to shape a new me. Ever evolving. What I knew to be true then, doesn’t seem to be true now. How I used to react to different situations and different people has changed. I used to know how I would react. I only know now that I won’t react in the same way.

Sounds a bit confusing and it is. A bit like the Titanic, my soul doesn’t want to give up all its secrets. I can find new ways to search it and develop techniques that help me deal with its depths and caverns, but it seems unwilling to yield to my constant requests for it to help. I know the answers are there, but I just can’t seem to dig them out. So, my soul has swallowed every old version there ever has been of me and so all that I need to know is there somewhere, but I don’t have the right combination of search terms to unlock them. Soul searching is hard to do. Any search will always uncover something you’ve worked hard to forget and bury. Soul searching will always point you in the direction that you need to go, but it doesn’t give you the strength to put your boots down on that path and walk it. Soul searching is best done when it’s been sat with your heart. That’s when the answers are closest to the top. Your soul can give you the directions, but it can’t make you take the journey.

The soul is never going to say the answer is 3 doors down on your left. (Although it could be, if that’s where your heart has told your soul it’s desire is…). The soul is going to give you the piece of unmoulded clay and an idea of what the finished article could look like. It is still up to the current you, you as you are now, to take the search results and action them.

As a matter of interest, as well as Ellen and Seamus, I also sponsor Amur Tigers through WWF, Rhinos through Care for Wild, dogs through Dogs Trust, a young girl through PlanUK, plus I donate to UNICEF and help remove plastic from the oceans through donating to 4Oceans and my cats consist of one adoption and 2 rescues. They all have souls and their souls all whispered to my heart.

And yes, I stole the title for this post from The The. Credit where credit is due.

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Hidden Illnesses and the Kindness of Strangers…

When we hear the term “hidden illness” most of us think immediately about mental health issues. And yes, mental health has become somewhat of a poster child for the phrase. That’s actually a great thing, awareness about different mental health concerns absolutely needs to be raised and the topic needs to be discussed much more readily. But what about all the other conditions that you can’t see?

I’ve talked briefly about hidden illnesses before. But this time, it’s personal. Let’s take a look at my immediate family and take a little checklist of the qualifying conditions. Bear in mind, these are just those that I know about. My family has the absolute right, as do you, to keep their hidden illnesses, well, hidden. Private is probably a better word. So, there is depression, epilepsy, multiple sclerosis, Sjogren’s Syndrome, congenital heart defect, migraine, arthritis, cancer and anxiety disorder. Some mental health conditions, some auto-immune conditions, some wiring problems and some organ issues. If I lined my family up, you could not tell by sight who suffers from what. Hidden. Invisible.

What other afflictions, conditions, diseases, disorders are out there that you simply can not see? Diabetes, digestive disorders (Crohn’s, IBS…), chronic pain, Fibromyalgia, Aspergers, Endometriosis, Lupus, Lyme disease, spinal disorders, narcolepsy…the list goes on and on. Most of these are not just conditions whereby you take a couple of painkillers and you’ll be ok in the morning either. Many of these are actually classed as a disability. That entitles you to certain benefits and in the UK, sometimes even the hallowed Blue Badge parking permit. Yet, many suffering these disabling conditions are subject to abuse for it, because there are no outward signs.

The individual stories of my family members are not mine to tell. So, you will have to make do with me…

CPTWN

This is me about to cage dive with Great Whites in Cape Town – do I look depressed?

RARO

This is me trekking on a South Pacific island – do I look like I have epilepsy?

SKYDIVE

SKDV

This is me skydiving in NZ – can you see my MS?

BTRD

This is also me. Have I had an accident, was I attacked, did my partner beat me? No, I was on the receiving end of an unforgiving seizure.

Not so many months ago, I was in a shop looking a little worse for wear. My hair wasn’t washed, I was very pale, had huge dark patches under my eyes and I had bruises and needle marks on my arms. People avoided me. Why? They saw junkie; they didn’t see the after effects of almost a week in hospital on a steroid drip to try to save my sight. Judged by appearance.

I’ve been seen falling in the street in the middle of the day. I’ve been left there while people walked past me, assuming me drunk. They didn’t consider I might be ill. I didn’t look ill. There was no car that had hit me, no stone I tripped over. I was judged, again, by appearance. Strangers picked me up and helped me.

I don’t look sick; most of the time. A losing battle with epilepsy often leaves me bruised and a bit battered, but on the whole, I generally look ok. I smile, therefore I’m not depressed. I laugh, therefore I’m not in pain. I don’t use a walking aid, therefore I’m not disabled. I’m not wearing a cast, therefore I’m not broken.

I’m not a religious person really. I have a set of beliefs that I hold to me and I keep them private. There is one bible quote, however, that resonates with me. It’s from the Gospel of Matthew – “Judge not, that ye be not judged. For with what judgment ye judge, ye shall be judged: and with what measure ye mete, it shall be measured to you”. I feel that it’s actually not so much biblical but rather plain old common sense, and it matters not whether you attribute it to Matthew, Buddha, Jesus, Muhammed, the Dalai Lama or your Gran.

Don’t judge others, unless you wish to be judged yourself. And if you do choose to be judgemental, then remember that what goes around, comes around. We, in general, have very little clue what goes on behind closed doors, but remember what you physically see will never be the full story.

As an adult, still in control of my faculties, I’ve chosen to share with others my hidden illnesses. I do this for a variety of reasons. Some selfish, some selfless but in there is the desire to bring some conversations to the front and centre. I don’t believe that you have to spill your guts to all and sundry to be part of the discussion, but I do think we could all be a bit more forgiving with our thoughts and jump not to the conclusion that the person who isn’t walking in a straight line and looks like they may fall, might be drunk but they are just as likely to be ill and in need of assistance.

Would you be willing to offer kindness to a stranger?

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Sleep, Einaudi & escaping the prison…

It’s nearly midnight and I can’t sleep. Again. Not even the melodic strains of Ludovico Einaudi can soothe my soul tonight. I don’t think its even been a month since I last wrote about this topic. It seems to be a recurring theme in my life! The desire to sleep is there, the need to sleep is present but the act itself..? Nope. Not happening.

Someone suggested to me, that perhaps I’m overthinking it and that’s why it won’t come. It’s a fair observation and I said as much, but its hard not to dwell on it when you’re lying in bed. Awake. The sounds of steady breathing all around conspire to make it even more soul destroying. Who’d have thought breathing could have such an effect on another person!

If I think about it long enough (and I have, frequently) then I conclude that the act of not sleeping in itself, is not the issue. The real problem is the next day. This is when the fatigue really sets in, The inability to think clearly becomes apparent and the temper gets just that little bit shorter. All the while there is a niggle at the back of the mind that the situation is not only a repeat of yesterday, but perhaps it will happen again tomorrow. I understand the need to detach from the past and the future and just be present in the, well, present. Yet, I find it difficult and have not yet found a method of disengagement that consistently works for me. For example, I could listen to Nuvole Bianche on loop for hours and I would feel my shoulders drop and my mind sooth and my body sway. Calmness would reign supreme in my soul. The gentle tune lulled me to sleep and was often still playing when I woke. While I can still count it as one of my all-time favourite pieces of music and it has been for well over 10 years now, I can no longer guarantee the result. Yes, my fingers still airplay the notes and my mind strives to be still, but the elusive slip into sleep remains evasive.

I recently read Edith Eger’s book The Choice. She shares her stories of surviving the Holocaust and how she built a new life. She recounts her experiences with those suffering PTSD and how she helps others to face their traumas and heal. There are a lot of fascinating, disturbing, remarkable and uplifting experiences that she shares, but there are a few lines that have really stuck with me. One of them is “We can choose to be our own jailors, or we can choose to be free.” I’ve turned that phrase over in my mind a few times while I’ve been waiting for sleep. Our minds are incredibly powerful. Is Ms Eger correct? Unless we confront that which causes us suffering we can never heal?

That’s a big subject and maybe I’ll get to that one day. But, in the context of sleep, or lack thereof, I’m trying to find the root of the sleeplessness, so I can confront it, learn from it and then banish it.

I like to think I’m a fairly intelligent person, open to new ideas and the like. So, I have tried the usual initially suggested methods of trying to get more, better quality sleep. Quality is more important than quantity as is so oft the case. I’ve spoken about them before here, so I’ll not labour the point again. But, I’m still to find the piece of magic that will work for me. I know my mind is busy and I suspect that is the main cause of my inability to sleep at the present time. I can’t seem to stop my mind from dwelling on my current situation and much as I try to find the positives in most situations, I’m struggling to see how me and MS and me and dry rot, are ever going to be friends.

Epilepsy and I have come to a sort of mutual understanding. We live side by side in an uneasy alliance. But epilepsy is a jealous bedfellow. The fatigue MS causes, is antagonising my epilepsy. Fatigue is a pretty major factor behind my seizures, another reason, probably the main reason, why I need to get some sleep. I don’t think we even need to go into the whole stress angle of this situation! It is one helluva vicious circle that I’m caught up in. And, I just don’t know how to break it.

So let’s talk about drugs for a minute. Sleeping pills specifically. To pop or not to pop that is the question. I’ve always tried to avoid taking prescription sleeping tablets. I don’t really want to take them being the biggest reason! I’m a little scared of them if I’m truthful and I would rather find a natural solution to my troubles. That said, I recognise that they have their place and that they can be a helpful aid to sleep for some. Yet, I can’t help but think that the sleep they induce isn’t real sleep. It’s kinda fake. It doesn’t seem like a natural sleep, so while the quantity of the slumber may increase; what about the quality? About a month into the saga that has developed into MS (& still possibly something else besides) I wasn’t sleeping at all. Nothing. Nada. Zilch. At the same time, I was experiencing what can only be described as indescribably weird sensory issues. I was prescribed a medication that would help with the sensations (i.e. it would dull them) and as one of the side effects of the drug is drowsiness, it would help with my sleep. And it did. I slept for about 15 hours. I woke up feeling sick, disorientated, lethargic, scared and wishing I’d never taken the darn thing. A one-off perhaps? Maybe, but I don’t know that I’m willing to take that chance. Yet, perhaps desperation will take me there.

Well, I’ve got more questions than I have answers. I’m desperately trying not to worry about the rot and all that fixing that will entail. I’m trying hard to accept that MS is now part of my life and I just have to get on with it. I’m hoping that my epilepsy will settle down and stay quiet for a while. I don’t know how to deal with just these 3 things and still switch my mind off in order to sleep. Yep, I know I can’t control much of it and yes, the logical part of my mind says “if you can’t control it, then don’t worry about it” but the part of me that needs to understand just how to do that, is not getting it. Not getting it at all.

So, I’ll be the one who is awake with Einaudi, chamomile tea and surrounded by the sounds of steady breathing.

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Rotten luck…

So, just to add to my sad little tale of woe, it appears I now have dry rot. Well, not me personally, but my flat. Although, it seems like quite a good analogy for my brain!!

According to Wikipedia (all hail google and Wikipedia), dry rot is “wood decay caused by certain species of fungi that digest parts of the wood which give the wood strength…”. Yes, this is very much sounding like the MS & epilepsy that ravages my brain and body on a constant basis…And the treatment? Removal of the offending, affected wood and chemically treating the surrounding areas. Sounds a bit savage, but that is the “cure” for certain types of epilepsy and both afflictions are “controlled” chemically. Oh and no, it’s not covered in a standard buildings and contents insurance policy.

The whole dry rot condition is brutal, devastating and requires treatment. Expensive treatment. Epilepsy and MS are much the same. If you’re lucky though, the treatment is free.

Dry rot tends to be an invisible condition. Usually, you don’t know you have it until you want to redecorate or renovate some part of your house (or, as in my case, your neighbours do). As with epilepsy and ms, it’s usually something significant that triggers the eventual diagnosis of the disease. You can’t always guarantee a person’s health based on their physical appearance. These are just 2 so-called invisible illnesses, there are so many. In my immediate family, there is epilepsy, ms, depression, congenital heart defects, Sjogren’s Syndrome, arthritis and dementia. Everyone knows someone who suffers from an invisible illness, although they may not know it. Diabetes, lupus, lime disease are just a few others, but it’s mental health issues that spring to most people’s mind when the term is used.

The last few weeks have been hard. (I seem to say that a lot at the moment!). The dry rot situation left me teetering on the brink of I don’t know what last week. I was meant to meet the builders but instead, I begged my brother. We were going to go together. My brother arrived at my house and I lost it completely. I had a meltdown of epic proportions. Floods of tears, hyperventilating, snot, inability to talk coherently and a steady unwavering conviction that I couldn’t take any more. My brother hugged me for the first time in 46 years (we’re not good at emotions in my family) and he went to the meeting alone and declared he would deal with everything, the builders will deal with him and all I have to do is move out when I get told to, oh and pay for it.

My brother seeing me in the state I was in was a helluva shock for him I think. We’re not good at emotions and we’re all guarded with each other in my family. I find frustration and anger easier to show than fear. It was that fear that my brother got the full brunt of last week. I don’t think for a single second he thought his sister would be crying on his suit jacket that day. This same brother who won’t sit on my sofa in case he gets a cat hair on him, was dealing with me dripping tears and snot instead. Kudos to him. He stepped up and was there when I truly needed him.

There is a point to this rambling about tears, snot and diseases you can’t see. We don’t always know what a person is going through. We don’t know what battles they face on a daily, hourly or minutely basis. We don’t always know what drives certain responses that are sometimes inappropriate. We don’t always show how we are truly feeling to those that really need to know. There is a myriad of reasons for this.

We are often quick to jump to conclusions and even quicker to judge. My house shows no outward signs of being ravaged by rot, but it is. I show no outward signs of being at the mercy of one disease that could kill me at any moment and another that could leave me in a wheelchair, but I am. My dad said to me many many years ago that I had ice water running through my veins. My brother saw last week that I don’t.

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Rambling weebles

The past 6 months or so have probably been the worst of my life. Worse than the passing of a loved one? In some ways, yes, I felt like I lost my body, my brain and my self. Worse than breaking up with a partner? Yes. I felt like I was splitting from my health.

Recriminations were rife, even though I tried not to indulge. Looking for something to blame was common. “It’s not you, it’s me!” my brain was screaming at my body. There have been tears. Oh so many tears. There has been much rage and anger. There have been threats of giving up – what’s the point? There has been a darkness that I didn’t know was possible and some realisations that may well have come too late in my life. There has been a lot of soul-searching. A LOT of soul searching.

Epilepsy has caused me much anguish over the years and a lot of pain both physical and emotional. I feel like I should have been better prepared, in some ways, because I’ve already been dealing with a neurological disease for 30 years, so adding in another one, while not ideal, shouldn’t be that hard. Right? Wrong. Epilepsy knocks me on my ass and then I get up, go through the depression and get on with life. I’ve made my peace with the limitations it placed on my life. I don’t like them, but not being able to drive, not being able to deep sea dive etc, while not what I would have chosen for myself, have not proved to be the end of the world. It took me a long time to get to that place of peace and it’s not always been a stable place!! In some ways, because I’ve grown up with it, epilepsy didn’t/doesn’t hold the same level of fear that MS has introduced. As my life evolved so did my coping mechanisms. I haven’t always got it right, but the humour that I can sometimes find in the situations seizures have put me in, made things easier for those around me and that in turn made it easier for me. Sometimes, the laughter is hard to fake.

MS has caught me out. As you get older, you kinda expect certain things. The way everything goes south, the wrinkles that appear, the memory that’s not quite as sharp as it was, the tendency to utter the phrase “when I was your age…” and the knowledge that some debilitating conditions could appear in the future, But that future was my 70s or 80s, not my mid-40s. The discovery that MS may have been with me for a bit longer than the diagnosis is a shocker and the knowing that it could, and probably will, get worse is hard to stomach. My choices are stark. But they are choices and they are mine to make.

The way I see it, I have reached a three-pronged fork in the road and the time for dithering is passed.

I can go right. Right takes me to a field where I sit down, give up and wither with the coming of autumn and then die in the snows of winter. The bench I’d be sitting on is hard, the view is bleak and I forgot my scarf.

I can go straight ahead. I can take the drugs, heed the medical profession, not rock any boats and wait for the inevitable to catch up with me. This route would lead, eventually, to the same field that’s at the end of the right-hand path.

The third option is left. Left will mean taking control of that which I have power over. Left means that summer is longer, autumn is radiant and winter is crisp but faced with a scarf. Left means taking advantage of what is on offer to me in terms of treatment and supplementing it with what else I choose to put inside my body and hence my brain. Left means making my body and mind stronger. Even stronger than they had to be through the trials of not just epilepsy, but life in general.

That is the clincher. Life wouldn’t stop just because I’d decided to. Life goes on. Life finds a way. Sometimes its a crappy way, but it is a way. Why should I not try to take part in that? Would it really be easier to just give up? I know there will be days to come, when giving up is all I want to do. I’ve already tasted that. I’ve already come through some of that darkness. I know there are days coming up when I might actually not physically be able to get up. The numbness might give way to weakness in my limbs. My brother has a saying, that if you put your head in the sand, then you leave your ass exposed. How true. I’m aware of what my future could hold for me. I’m aware that there could be immense difficulties ahead. That lucidity means I damn well know that there could also be some bloody awesome times ahead. I’m ONLY in my mid-40s. My life isn’t over because of 2 letters! My life can still be what I make of it. My life WILL still be what I make of it.

This is where the vast amount of soul searching that has been done and is still to be done, comes in. You have to figure out what is important. I’ve had to work out what is important to me. What am I prepared to put up with and what am I not prepared to have in my life. That isn’t easy. That hasn’t been easy. It won’t be easier in the future. Yet, I have a backdrop to weigh it against. MS, Epilepsy and maybe Ocular Sarcoidosis. Thats my back drop. Thats my canvas. In the grand scheme of my life what is worth it and what isn’t. Is putting up with a nasty, vindictive person in my life a good way to spend my time? Yes, it makes it easier for other people to play nice, but what does it give to me? This is one of many questions I’ve asked myself. I don’t have all my answers. I don’t think I will ever have all the answers. But, again, that is part of my tapestry. That’s my jigsaw. My attitude towards the pieces that are laid out before me is changing. I’m ok with that.

There seems to be a helluva lot of bird crap on my path of life just now. Regardless of which road I choose to travel. I suspect there will be more to come. I try to remember that people pay money to spread crap on crops to make them grow bigger, stronger and healthier. The crap on my path is free, albeit I don’t want it sticking to my shoe.

Just as weebles wobble but they don’t fall over, well hell, I’m still standing!