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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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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!

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Short, but not sweet…

I’ve been monitoring my thoughts. Isn’t that what we’re all supposed to do these days? I’ve noticed several things. Multiple Sclerosis is there in my head every minute of every day. I brush against a wall and it’s because of the MS and if this is happening now when I’m 46, how bad will it be in 5 years, 10 years? There is a small, concurrent thought that maybe I’m just clumsy. Maybe my clumsiness is not MS and is just that. Clumsiness. That thought isn’t carrying the same weight as the other. I think about the future all the time. I used to be obsessed with the past, now it’s what will happen. On some level, I know that I can’t predict the future. On another level, I know I have MS. I know I can’t predict the course of the MS in the same way that I can’t see the future, and sometimes I think that if I don’t think about the MS then I won’t have to think about the future and I can go back to the relative safety of raking over all the mistakes in life I’ve made and all the triumphs and phenomenal things I’ve seen and done. That then makes me think that I would be denying the MS and therefore not preparing myself for the future. But I don’t know the future so I can’t prepare anyway, can I? This is going on in my head every day. Every single day. I can’t remember the last time I didn’t think about MS.

At the same time that this is all going around in my head, I’m trying to function in the other parts of my life. I’m trying to deal with work, with decorators, with finances, with relationships, with my wayward, single ginger eyebrow hair. Nothing else has stopped because I have MS, but the amount of room in my head to deal with it has shrunk. Sometimes, I try to be mindful. Allow the thoughts to come and then just go without actually thinking about them, only acknowledging them. I try. I generally fail. Sometimes, when I try to be mindful, other thoughts creep into my head. Dark thoughts, truly dark thoughts. I don’t want them there. When I’m tearing myself up about the MS, those dark thoughts don’t seem to have the ability to get in, its when I stop thinking that they pervade. Weird eh.

I’m in the final stages of the flat being sorted out. Dry rot banished, new kitchen installed and the decorators have been here for 8 days and have about another 3 days to go. I’m scared that when it finishes, I’ll have more time to dwell. Dwell on the MS. Dwell on the fear, ponder a future I can’t see in a state that I can’t be sure of. The alternative is that the dark thoughts will find their grip. I’m finding it increasingly hard to know that it might not all be doom and gloom in the future. For a while, I was able to remain fairly positive that ok, I have Multiple Sclerosis and I have Epilepsy but it could be worse. I still say that out loud because it makes everything less scary for others. The truth is that I am utterly terrified. It’s been about 11 months since the whole round of doctors, hospitals, scans and drugs kicked off and it has been about 16 months since the numbness down one side of my body appeared. It doesn’t feel that long. It’s all still so very raw. I sometimes think that I’ve processed it all and bits of it are tucked away in little parts all over my mind. It’s not. It’s there, right there. Front and centre. The focus. Everything else in my life is playing second fiddle and I can’t dedicate the headspace required to deal with those aspects. I feel like I’m no longer in control of my own life.

I function in a heightened state of total stress. All the incredibly positive changes I made to my lifestyle have fallen away and I’m not taking care of me anymore. I can’t be sure, but I wonder if it’s because I don’t see the point. Have I given up on some level? I don’t know the true answer to that. I think about it a lot, but I don’t know the answer. I told myself that I was making all the changes because it would make me strong enough to fight this bloody disease. At the time, I was able to make myself believe that while I might not win the war, I was bloody well going to be victorious in at least some of the battles. That fight in me seems to have disappeared. My candle has blown out.

Yet, I’m writing about it all. Is this acknowledgement going to be enough to find the spark again and ignite it? Or is the darkness that has pervaded my existence for most of my adult life going to gain its foothold like never before? I can’t deny that I have let a lot of things slide. I don’t know that its because I don’t care anymore, I think its just more along the lines of there seems to be very little point. Am I just depressed? Sure as shit I’m depressed. Am I wallowing? Good question. Yes, probably, a little. But isn’t wallowing in mud supposed to be good for cooling the blood? The metaphorical mud here, being the thoughts. I think that’s probably pushing it. In my situation, the mud is far from glorious and I think wallowing in the hollow for too long when you’re not a hippo might end up being regrettable.

So, I’m tired, I’m depressed, I ache everywhere, the bunion appearing on my left foot is bloody sore and all in all, right now, I will admit to being pretty low.

Ah well. Shit happens right?!

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Weather, Cleaning and Lymphocytes…

I’m in the midst of dry rot repair, lymphocyte decrease and trying to kickstart a healthier 2018. Let’s face it, things can’t be as bad as they were in 2017. Surely.

January was always going to be a bitch of a month. I knew the repairs were coming, I knew I had to move out, I know that the next step will be a deep clean (bloody plaster dust!) and then a total redecoration. Then, just then, may my stress levels reduce. I was hoping to take myself, the cats and a crate of wine off to a lodge somewhere away from civilisation with a good friend. Unfortunately, that didn’t happen. As a consequence, at age 46, I’m living with my parents.

Yes, it may be a temporary situation but oh my word, am I having to take a lot of deep breaths. To be fair, we are all trying to pretend we aren’t getting on each other’s nerves, but it was never going to be easy, so the sooner this bloody dry rot situation is fixed, the better. My father is obsessed with the weather and my mother is obsessed with cleaning. Neither of these holds any interest for me whatsoever. I like to watch movies, but Father is terrified I press the wrong button on the TV, so such is his level of anxiety when I go within 6ft of the set, I just don’t. The novelty of having the cats living with them wore off as soon as they decided to come out from under the bed (the cats that is, not my parents). My folks have wooden floors and the cats like to play with toys. Inevitably, this creates a level of noise. Nothing like the racket that my 6-year old niece creates, but a noise none-the-less and this is driving my parents to a level of annoyance that is pretty impressive. I don’t mean to sound ungrateful, they’re doing me a massive favour and considering we haven’t lived together for almost 30 years, it’s not been as bad as it could have been! With luck, it will only be another 3 or 4 days before we can get out of each other’s hair!

That will, of course, depend on whether the repairs are completed. It is looking hopeful, but, well, I’ve felt hope before and been bitterly disappointed, so I’ve decided to err on the side of caution and assume that it could take longer to fix than I’d like. I’m all for positivity, but when life has beaten you down as much as it has me in the last 14 months, it’s kinda hard to look on the bright side. At least I’m finding it really hard to see the silver lining!

Just what the merry hell are lymphocytes? Another time I just shut down when a medical professional starts talking about something I simply can not process. I’ve been trying to get my head around an awful lot of things the last few weeks! What is going on with my right eye and why is the optic nerve deteriorating? Why does the neural ophthalmologist not seem to give a monkey’s? What does the thickness (or lack thereof) of the muscle around the nerve mean? Why is the neural ophthalmologist referring eye issues to an MS specialist, when the MS specialist refers me to the neural ophthalmologist in the first place because he is the eye specialist? And why oh why is ophthalmologist so darn difficult to spell!!

Sorry Wikipedia, you know I still love you, but sometimes only the scientific journals will do. Apparently, a lymphocyte is:

a type of white blood cell that is part of the immune system. There are two main types of lymphocytes: B cells and T cells. The B cells produce antibodies that are used to attack invading bacteria, viruses, and toxins. The T cells destroy the body’s own cells that have themselves been taken over by viruses or become cancerous.

That definition is from the National Library of Medicine, so I’m pretty happy with the description, but what does it all mean for stressed-out me??? Multiple sclerosis patients are at risk of developing lymphopenia, or abnormally low levels of immune defence white blood cells, called lymphocytes, according to a study that investigated lymphocyte counts in people with relapsing MS both before and after the start of treatment. The study, “Lymphopenia in treatment-naive relapsing multiple sclerosis,” was published in the journal Neurology. Lymphopenia may increase the risk for PML and perhaps other infections. And what, exactly, is PML I hear you ask? Or maybe I heard myself ask, which is not likely as I had to the look the answer up. Well, PML is the lovely little acronym for Progressive Multifocal Leukoencephalopathy. And what is that when it’s in English?? Well, back to Wikipedia for this one, (the medical journals are too scary). PML is “a rare and usually fatal viral disease characterized by progressive damage (-pathy) or inflammation of the white matter (leuko-) of the brain (-encephalo-) at multiple locations (multifocal). It is caused by the JC virus, which is normally present and kept under control by the immune system. JC virus is harmless except in cases of weakened immune systems. In general, PML has a mortality rate of 30–50 percent in the first few months and those who survive can be left with varying degrees of neurological disabilities.”

Oh, what jolly japes and fun this is!! So, it’s very rare – great! Whoop whoop. So, all I have to do now is wait until the powers that be (I don’t know who that is – medical professionals, god, governments…?) decide whether or not they are bothered by how low the lymphocytes can go and what they’re going to do about it if they do go low enough to worry folks.

Waiting. Again. Always waiting. Patience. Is patience finite? I may have to ponder that one, but apparently, I have time while I wait so it will give me something to do!!

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A little seasonal rant…

One of the final dialogues in the 3rd Night at the Museum movie, always makes me think. Larry the Nightguard says to Theodore Roosevelt “I don’t know what I’m going to do tomorrow!” Teddy replies “How exciting!!”

Not everything has to be planned to the final second. Sometimes, a bit of uncertainty can be liberating. Perhaps we have all got a little too used to planning our time to the Nth degree and panicking when it does not all quite go accordingly. My plan for today, for example, went belly up when I fell back asleep after my alarm went off. I didn’t plan that. It threw me for most of the rest of the day because I couldn’t then persuade myself to start on all the things I’d planned to do. I ended up actually completely wasting my time doing nothing. I flapped and I let a small thing like sleeping in, mess with me for the rest of the day. Actually, it would only truly impact me for about an hour. The rest of the waste was caused by my reaction to even a minor detour from the plan! Ridiculous.

Yet, I need some structure. If I didn’t have at least an idea of what I’m going to be doing, and when, I’d truly never get anything done. And so it is, I find myself at 1.05am, trying to plan the rest of my life. Just tomorrow isn’t good enough for me. I like to make grand sweeping plans, so I can beat myself up when I don’t achieve them. This breaking goals down into actions shit, just doesn’t seem to happen for me!

I find myself in a situation whereby my home is falling apart, my body is falling apart and my mind is just blown. I can’t seem to see past my daily struggles and they’re getting pretty overwhelming for me. I don’t know how much of that is down to me being in all-out panic mode and how much of it actually is something I should absolutely be concerned about. I don’t want to talk to anyone in case I find out something else I don’t want to know. I answered the phone today to hear that my critical illness claim (you know, the one that is going to help me manage my future with MS) is certainly not going to pay out the amount I claimed for (and am insured for) because of small print and technicalities. I don’t know for certain yet that it will be paid at all. My GP surgery only sent my notes for this past year, the insurance firm wants to go back a little further and that apparently means they are waiting for the surgery to send on another 70 pages of my medical records. (Bet they’re glad they requested another 6 months worth now eh!)

The work on my flat to try to fix the dry rot is now scheduled for January. I have to move out with my kitties so the work can happen. I’m hoping to go and stay in a cottage far away with a good friend, a crate of wine and a log fire. I truly need that distance from reality right now. The past 12 months of my life have been far too real for my liking and I stick by what I wailed at my brother a few weeks ago – I can’t take any more. I cried a lot today. Now, I know that this time of year, in general, is pretty difficult for me. All the good cheer and festive fun, just makes me feel more depressed. Several aspects to that. First, it just brings into stark contrast the total lack of fun in my life right now. Secondly, I’ve never been a fan of this season. Thirdly, it’s all just a bit too wild and raucous for me in my middle-age! I really am turning into a pretty grumpy old(er) lady. I can’t really tell you when all these seasonal feelings started. I can’t really remember the last time in adulthood at least that I truly, out-and-out, thoroughly enjoyed Christmas. It just seems like the same stress as for the rest of the year, except its much more expensive and failure to provide the perfect present is simply not an option.

Due to unfortunate circumstances, Christmas Day, this year, was held on Boxing Day. That just served to prolong my agony. I just want it all to be over. In fact, I want it to be February. By then, the silly season is over, I should know the true extent of my poverty and I can berate myself about the plans I made at 1.05am being utterly inadequate for my position. Then I can make new plans, that I won’t stick to and I can repeat the cycle all over again. I find myself wondering when I will get off the hamster wheel and take action, rather than just talk and plan for it!!

Rant over.

2

What’s the difference?

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

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

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

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

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

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

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

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

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

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

0

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.

0

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.