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What next…?

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

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

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

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

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

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

Epilepsy. MS. Depression. Bell’s Palsy.

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

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

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

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

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

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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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Neurons, nerves, Lobelia and me…

I can’t seem to stop considering the notion/truth that Lobelia is me and I am Lobelia.

I know it’s only 10pm, so a little early(!) to be pondering these kinds of questions, but well, the voices simply don’t quit. So, Lobelia. Let’s consider for a moment if you would indulge me, what we are to each other. You, the grey matter. The control panel. The marionettist. The keeper of all the technical secrets. Me, the package. She who must be controlled. If you didn’t have me, then what would you have? If I didn’t have you, what would I be? Do I have a choice? Do you control whether I have a choice? Am I the conscious manifestation of the brain? Is the brain the subconscious, or does it just contain the subconscious? If I can tap into the subconscious, can I tap into the wiring? Is subconscious just wiring? Is it that which is felt so very deeply it can not be brought into consciousness? It’s there though. Like the networks that bring the internet. Invisible forces that are there and can be tapped into and even rerouted, but can’t be seen.

Bloody hell, Lobelia. You’re laying it on a bit thick tonight and we haven’t even reached the witching hour yet!

We can’t be apart and we struggle to live together. I don’t know if the struggle is real or imagined. There is a constant high-pitched, low volume sound that is in my head. I can hear it, but it’s not outside of me. It’s actually there all the time. It’s like a whistle that never stops. It’s the soundtrack to our battle. I don’t recommend it. What part of my brain is controlling my thoughts? When I say “my thoughts”, who am I talking about? Lobelia or Kirsty. If the brain is asking all the questions, then, if we are as one, why am I the one trying to answer them?

When the electrical activity in the neuron network gets to be too much, that’s when a seizure occurs. Neurotransmitters are the chemical reactions that carry signals between the synapses in the brain. Synapses are effectively a narrow gap, and boy do I mean narrow, between neurons in the brain. So, even though the seizures are the result of an electrical charge it’s the chemicals that carry the signals between the neurons. Neurotransmitters are either excitatory or inhibitory, meaning that the receiving neuron will be either be kicked into action or it will effectively be silenced. The main excitatory neurotransmitter in the brain is glutamate, and neurons that release glutamate are called excitatory neurons. The major inhibitory one is GABA and neurons that release GABA are the inhibitory neurons.

Glutamate we know better as a salt. But in Lobelia it’s the anion of glutamic acid in its role as a neurotransmitter. GABA is another acid that is supposed to be kind of calming, I suppose, and it should reduce fear and anxiety. Hence it’s inhibitory function as a neurotransmitter. GABA can be taken as a supplement and salt, well salt is salt.

An incredibly fine balance between excitation and inhibition must be maintained in order for Lobelia to function normally. If there is too much glutamate, neurons can become hyperexcitable and a seizure may result but neurons can also become hyperexcitable if there is too little GABA released or if its receptors are not working properly, this can also make the adjoining neurons hyperactive and susceptible to seizures.

I only know all this because Lobelia won’t let me sleep!

So, the neurons are in the brain and the nerves, which are just a bundle of fibres, are in the periphery of the nervous system. So, that the bits that hang out of your brain, as it were, via the spinal cord. Whatever the neurons are feeling, excited or not, is felt by the nerves and the nerve impulses are what cause your muscles to move. Now, if you’re having a seizure, the neurons are over-excited and sending all sorts of signals down through the nerves. The signals are confused though. This is why jerking or twitching is often part of the seizure. The muscles are so confused by the signals that they try to push and pull at the same time, as it were, hence the jerking. This is also why the body feels pain, but the brain doesn’t. The nerve endings aren’t in the brain, but the rub is while it doesn’t feel pain, the brain gives the signal to feel pain in the rest of the body.

I need to butter Lobelia…she is on a roll!

And, this brings me to MS. There is a fatty insulating layer surrounding the nerves called the myelin sheath. In MS, this sheath is attacked by cells that strip off the layer and leave the nerves unprotected. Now, an unprotected nerve gets its signals confused. I suppose parts of the signal just drift out of the sheath into the bodily ether. So, sometimes the complete signal doesn’t reach the relevant muscle and so, the sufferer is left unable to move a limb for example, or the nerve tries to anticipate what the signal was trying to do and replicates a feeling that it had before. This means the sufferer may feel incredible weakness or a numbness. The nerve knows that they are common feelings, but it chooses to activate them at inappropriate times.

For me, all of this means that not only is there a problem with excitable neurons in my brain, it’s compounded by stripped nerves, confused as to what they are doing anyway, having to contend with an electrical surge too!

Bloody hell. No wonder I’m depressed! (Maybe I’ll get to that chemical reaction later…, although hopefully not tonight!)

But if I know all this, then so does Lobelia. Is this her way of trying to educate me in neuroscience so I can make better choices? If so, why can’t she just make me not want wine? Or think that kale is the best thing since sliced bread? Why Lobelia? Just why?

Lobelia and me. Chicken and egg. Perhaps even incompatible yet inseparable.

Don’t walk behind me; I may not lead. Don’t walk in front of me; I may not follow. Just walk beside me and be my friend. So said Albert Camus and so say I to you Lobelia.

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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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The Dark Days of Summer…

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

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

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

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

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

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

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

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