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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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Dear Brain…prt2…

The last time I wrote an open letter to you, brain, I was on my knees and begging for answers. I sure as shit did not like the response.

I’m back again. Well, not that I really left. We’re intrinsically linked. I can’t live without you, but I do find myself wondering if you can live without me. I’m finding it hard to keep up with you, you see. You just never stop. You never give me a moment’s peace. That’s why I’m writing this at 11pm on a Tuesday night. The voices just won’t shut up!

Oh, not those kinds of voices. No, I’m not quite there yet. But someone rabbits incessantly all day, all night. It can only be you, brain. I need to find a name for you. I can think of several that are apt, but none of them look good in print. It seems bizarre talking to you in this way. Because I’m not really talking to you, I’m talking to myself. You are me and I am you. Could drive a person insane trying to figure that one out. But does make me wonder how I can shut myself up…

My brain. Lobelia.

Lobelia presents me with many challenges. She particularly likes to ask me difficult questions in the wee small hours. She knows I need to sleep, but apparently she doesn’t care. Fatigue leads to problems for my epilepsy. Lobelia knows this. Lobelia has known this since she short-circuited when I was 15. Please don’t get wound up on the gender identification I’ve placed on Lobelia. For the sake of clarity – I am woman! Lobelia is going to be a woman too, whether she bloody well likes it or not. Anyway, I digress. Lobelia was triggered into electrical action when I was 15. It’s amazing what a combination of a faulty gene and a skiing trip can do! Maybe Lobelia blames my physical body (which she controls) for this. I don’t know that answer. She only seems to like asking questions at inopportune moments (hours); she’s not really one for giving answers.

Anyway, Lobelia knows that fatigue and epilepsy are not great bed-fellows. One of them really should take the spare room. But still, she insists on making them co-habit. And to make things just that little more interesting, she introduced MS into the mix. MS is like the mother-in-law from hell who moves in, just as your already fractious relationship is teetering on the brink. Lobelia has got a really sick sense of humour. If I am her and she is me, then how come we can’t get along?

Lobelia is average weight – around 3lbs. She is about 15cms long. And she lives the phrase – “good things come in small packages…and so does poison”. She allows me to function on a day-to-day basis, but the price I pay for that is heavy. She leaves me exhausted, but won’t let me sleep. She relies on drugs to soften the hard edges of the living arrangements she created herself; but not the soporific type. She asks me questions that have no answers; she drags up my history and replays it; she loves to play the “what if…” game. She tells me just how tired I am and then sinks me into a depression that is immeasurable. She uses that state to get more drugs. Well, we call them medications. They’re all legal and above-board. Even though one of them gets delivered to my house in a grey package and it always seems a little weird to have that happen. I find myself looking around furtively to see if anyone is witnessing the transaction. I’m glad I don’t live on a street corner!

Is this how it’s going to be for the rest of my days? Lobelia knows that she will live forever. Actually, we all live forever. Forever, can only be determined by an individual. Your forever, isn’t my forever. Has anyone ever promised to love you forever, only to leave you 5 years later? I rest my case. Cynical? Perhaps. Best ask Lobelia. Not that she’ll give you any answers.

Dear Lobelia. I am your physical shell. I hold in one place all of your nerves. I know you’re having issues keeping hold of the myelin sheath around those nerves. I know that according to Pakkenberg et al. the length of myelinated nerve fibres in you Lobelia = 150,000-180,000 km. That is a helluva lot of fibres. I know you started with around 20 billion neocortical neurons and I know you lose them at a rate of around 1 per second. I don’t know how quickly you can replace them. I know you pose these questions to me late at night. You throw them in there along with the frivolous musings and the rehashing of conversations I had 20 years ago that could have gone better. I just don’t have the capacity to think about these things anymore. There is no room. You can remember the random facts from a different life, but I can’t remember the birthday of my best friend. You want to torment me with the failings of a previous inning, but I can’t continue to function at a high enough level to keep the current one successful. Lobelia giveth and Lobelia taketh away.

Lobelia. We need to reimagine how this is going to go. What could it be like? What say you let me sleep for a few hours? Hold your questions and accusations for a dedicated time slot during the day? Will that work for you? I know, I know, I’m asking the question and you won’t want to answer. Think about though, please. My sanity depends on it.

What Lobelia doesn’t know is…I’ve donated her to research when my forever comes to a close. Hehehehe.

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Ruminations with Rumi…

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

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

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

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

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

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

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

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

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

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

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

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

Thank goodness!

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

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MS & Marionettes…

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

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

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

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

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

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

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

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

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

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

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

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

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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?