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Have I done “this” to myself?

The great unanswerable question.

What if I have?

I created this blog to try to keep me honest (if not sane). I wanted to share my tales with you (note to self – get some real friends haha). Maybe some of it will resonate with you, maybe it won’t. Feel free to let me know. But be constructive, please; there are enough real bitches in my day-to-day! As with most folks, in my experience, my skin is thick and thin. Some days negativity just washes over me and other days it sends me quivering into the corner with alcohol of choice to contemplate why everyone hates me and is it because I didn’t do (fill_in_the_blank) when I was six?! So, be constructive, be pleasant, be funny, be quirky, be you. Just don’t be nasty for the sake of it, please – you’re free to jog on to the next blog any time you like.

I’m 47 and yes, I should know better. I have no kids, 3 cats, a mortgage, crippling anxiety,  epilepsy, MS, credit cards and a 9-5 that is never 9-5. I don’t have a criminal record, I have travelled some and my sarcasm is more than occasionally off the scale. I’m overweight, I have a potty-mouth and opinions coming out of my ears. But, I’m not nasty. I care about people more than I let on and though I often believe I prefer animals to humans, I’ve never been outrightly or deliberately cruel to any living creature. Basically, I’m an ok person. I have neither celebrity nor notoriety. I’m not poor, yet I’m not financially rich. I have lost my way a little in life. I have a need for a reset. I believe “focussed” has a double-s and I was always taught there are 2 spaces after the full stop at the end of a sentence. However, language is fluid and while I will never resort to a single-s focussed, I have bowed to single-space-after-a-full-stop pressure.

Recently, I decided to start having an organic meat and veg box delivered weekly. All part of me trying to be healthier, cut back on single-use plastics and enjoy lovely, fresh, local produce. Awesome. So, the delivery arrives a couple of days ago, jam-packed with fresh greens, grass-fed beef, natural yoghurt, eggs…you get the picture. I felt a swelling of joy and healthiness just welling up in me as I gazed at my bounty. Yesterday, surrounded by this wonderous nutrition, I decided to have toast, peanut butter and red wine for tea. The glass of red wine turned into two bottles and today I felt not just jaded but disappointed that I couldn’t be arsed to rustle up a quick whatever with all the gorgeous food I had or even stuck to the glass or 2 rather than the bottle.

Have I done “this” to myself? This is the question that is keeping me up nights at the moment. A throwaway comment, an endless supply of medical opinions, too many books read with too many differing approaches, too many conflicting ideas and my perceived intelligence is just not cutting it. I do the research, I read the opinions, I ask the questions and still, I can’t help wondering if there was something I could have done differently that would mean I would not be suffering from MS.

Epilepsy, it took a while, granted, but I’ve come to terms with it. I’ve learned to live alongside it. I don’t like it but compared to MS its a known quantity. I know it will hit me out of nowhere, it will knock me on my arse, I’ll spend a fair amount of time depressed and then I’ll pull myself together, get back up and move forward. MS though? Nope, I don’t know which way is up.

Maybe its because I sort of grew up with epilepsy, google didn’t exist and I wasn’t tying myself up in knots trying to figure out which scientific, peer-reviewed journal piece is the most reliable. MS hit me. Hit me hard and then ran away laughing. I feel like a baited bear sometimes. Chained. Tormented. Beaten. There is nowhere to run and the groups dedicated to saving and supporting can only do so much. MS is the stick, there is no carrot.

As is often the case when my mind is in overdrive and I’m desperately trying to find a way to answer a question that can’t be answered; I’m thinking about the past. Particularly friendships. I’m a big believer that not everyone who comes into your life should stay forever. Yet there have been some people that have been in my life for a period of time that I can’t quite come to terms with how they left my world. Sometimes, people just drift away naturally. Folk move away, get married, travel, whatever and they drift out of your life. There is no deliberate severing of ties, no harsh words, no event that causes a fracture. It’s all very natural and perfectly normal. Then there is the intentional ending of a friendship. There is a specific event or series of events that means the relationship is no longer healthy, reliable and productive. Then there is the loss that you don’t really know what happened or how it happened.

It’s this last scenario that has been on my mind a lot of late. I don’t really understand why some folk left my world and why I allowed it to happen. Now, there aren’t many that fall into this category, only 3 in fact. But I’ve never quite been able to understand what happened with the friendships. I wonder if they feel the same way. It doesn’t do to rake over the past. Yet, for me, the past holds the answers. It’s like I have this need to look back before I can look forward. I need to understand where I went wrong. And, in the same way, did I bring MS on myself?

Could the issues I have that fall under the scarred umbrella of MS, have been prevented. Did I do something wrong? Could I have ensured the health of my genes? If I can find those answers, could that mean I can reverse the damage done? Or is it too late? Is all I have left acceptance?

Unanswerable. Not unquestionable.

I’m reading this back through and it’s so disjointed. I apologise for that. I’ve opened my mouth and let my tummy rumble. Heyho.

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The moon’s a big white football…

The sun’s a pound of butter,                                                                                                                              The earth is going around the twist,                                                                                                            And I’m a little NUTTER.

Thank you, Kit Wright, for one of the only poems to have stuck with me for almost 40 years! This was my favourite poem from the book Rabbiting On which I got as a kid. I recognise now that it was a joke gift, I didn’t understand at my tender years, that reflected how I was always, well, rabbiting on. I still blame having my lips stitched together as a child for causing my love of my own voice.

Yep, you read it right. I had a puppy-induced incident about age 3 or 4 that rendered me speechless for a couple of weeks while the inner sides of my lips were stitched together. Skipper wasn’t the pony that I had spent months stamping up and down the stairs requesting at the top of my voice. And actually Skipper wasn’t even his name. He was called Bosun but I could only say Snoban, so he became Skipper. He was my constant companion until I was about 14. Anyway, Skipper the Boxer was as excitable a puppy as I was a toddler. Mischief was our middle name. One fine day my dad was building a set of bunk beds for me and my bro. I decided to use one of his dust masks as a hat and toddled gaily out into the garden to play with Skipper. Skipper loved my hat immediately. He bounded up to me, placed his front paws on my shoulders and attempted to grab it from my head. Oh what jolly japes I thought (probably, but I can’t really remember) as I fell sideways, giggling (again, probably), until my face connected with my Dad’s coldframe and the corner of it pushed my cheek in so far that though the skin didn’t break, the inside of my cheek ripped apart with a tremendous explosion of blood. I don’t really remember what happened next. I have vague flashing images of teatowels being pressed to my face and slipping in the blood on the vinyl backseat of my Dad’s Cortina. Apparently my folks couldn’t actually tell what had happened to me, such was the amount of blood. So, it wasn’t until I was in hospital that the extent of the injury became clear. Although the skin hadn’t given away (thank the lord for soft, bouncy, toddler skin), the inside of my mouth was a bit of a mess. In order for it to heal, the inside of my cheek was going to have to be stitched together and that meant stitching along the inside of my lips too. I was left with a small gap at the side of my mouth where I was fed through a straw. My brother took great delight in poking salted peanuts through that space knowing full well that a) I couldn’t scream and b) there was a possibility I would choke to death. I’m sure he loved me really…

So, that is the story behind my belief that I have never stopped making up for the fact I wasn’t able to talk for a couple of weeks. The scar is still visible on my lips. I see it every time I look in the mirror, but I doubt anyone else really notices it.

But, I’m not a kid anymore. More’s the pity.

I have viral gastroenteritis. I won’t go into details. It’s on its way out now (pun intended), but boy has it been a bitch! My wonderful immune system is so busy chewing the fat from my nerves, it forgot it has a far more important job to do! A virus is a nasty little bugger and most of them are incurable. Unlike bacteria, it has no structure to it, so it attaches itself to something living (me! or rather the cells inside me) and it causes illness. This should provoke an immune response, but it seems my immune system was otherwise occupied with my nerves. Such was the sickness, I couldn’t hold all the various meds I have to take down and this, in turn, led to a bit of trauma when I was, finally, able to keep them where they are supposed to be. There are side-effects of my MS drugs that I have shared…glowing bright red twice a day for example, but there is another effect that only a few close friends know about. Until now. They play havoc with my digestive system. And yes, that’s the polite way to put it. I’d kinda got a handle on that side of my new MS life, but what I hadn’t anticipated was that having only been unable to take the drugs for a few days, the side effects would appear with a vengeance, acting as if I’d never taken the drug before, once I could take them again. To say its been distressing is actually a bit of an understatement.

My childhood was rough and tumble. Always scrapes, bumps and oh so many stitches. No staples in those days. I still have the scars. I don’t remember having many bugs, viruses or whatever you want to call them though. Colds, chicken-pox and sometimes a stomach pain induced by not wanting to go to school, but nothing to write home about. Until I got epilepsy. And then MS. The ailments I never had, are all catching up with me now.

The moral of the story? Enjoy what you have while you have it; you don’t know how long you’ve got it for.

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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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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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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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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.