4

Tired?

It’s been around 3 months since I last wrote a post. It’s not been the best 3 months of my life. I seem to say things like that a lot these days. I don’t think I’ve had a great 3 months since before the MS diagnosis. Nothing has been the same. Everything is different and I’d be lying if I said I was finding coming to terms with it all has been easy. I thought I was possibly starting to get to grips with things finally when the epilepsy episode premiered in November last year. Armistice Day to be precise.

I haven’t written because I’ve been scared. Scared of the consequences of truth. In my experience, the truth is often the hardest to hear but the most useful. The odd lie to save a hurt is fine, in my book, but ultimately lies lead to nowhere happy. But my truth, I’m having issues uttering. I can’t say that I really know why. I said it was fear of consequences but I think that is only part of it. I don’t want people to be more afraid for me than they should and I don’t want a blog post of mine to be the catalyst that throws a person into thinking that I’m suicidal. I’m not. Don’t get me wrong. Dark, troubled thoughts plague my mind 24/7, but am I actively planning my end? No.

Everything going on in my head is exacerbated by fatigue. I’m not tired. At least not tired as most folks relate to it. A few hours sleep ain’t gonna fix this situation. You know what it feels like to be tired right? Long days at work? Small children? Overdone the gym? Gardening too much? You know that tired. That tired when you sink into bed and sleep soundly and feel refreshed the next day, right? Oh I know, everyone is tired these days. No-one rests enough, there is always a deadline to meet or a task to be done and lord forbid it doesn’t get done! I hear everyone saying how tired they are. Yet, I wonder, are they tired, like I’m tired?

A long time ago someone said to me after I’d complained of being tired, that I had no idea what “tired” is because I don’t have children. Apparently, only those who have kids are capable of being truly tired. I beg to differ. I still don’t have children and I definitely know what it feels like to be so exhausted you can’t see straight. Can’t think straight. Can’t function in normal daily life. I know it because that is my daily life. That is the gift that MS has given me, one of them anyway.

Tiredness has always been with me because of my epilepsy. I’ve complained of tiredness a lot over the years. Yet, now, I’m not tired. I am utterly fatigued. Mentally and emotionally overdrawn in every account. This fatigued isn’t something that will be fixed by a cup of hot chocolate and a night’s sleep. This fatigue comes after the sleep (if you can sleep that is) and appears before you’ve got out of bed. Sometimes, it feels like you can’t get out of bed. It’s too much. Everything is a trial. Everything is an effort. Everything. Having a shower, getting out of bed, getting dressed, you name it. The fatigue is all-encompassing. It controls every aspect of your life. I don’t want to cancel the evening out, but I simply haven’t got the energy to go.

There are days when I simply can’t think straight. Tasks that used to come quickly, easily and even naturally to me, I have to think about and really focus on completing. The fatigue is front and centre the whole time. There is no pill I can take, no amount of Red Bull is gonna give this girl wings and, though I rest when I can, no amount of downtime really helps. It is soul-destroying trying to live with this level of fatigue. Utterly soul-destroying.

The MS diagnosis changed my life in ways that I couldn’t have even imagined. Over the past 3 months, my level of acceptance of my situation has depleted rapidly. I’ve tried really hard to stay positive and see that having MS isn’t the end of the world. God knows I’ve tried. I spent years coming to terms with epilepsy. I truly don’t think I have it in me to accept, embrace and live alongside another life-changing condition. I follow umpteen folks on social media who seem to be able to deal with their MS. I do wonder, given what I know about my situation, whether they are telling the truth, the whole truth and nothing but the truth. Trying to spread positivity is fantastic, it really is. Yet I can’t apply it to my situation. And part of the problem is the bloody constant fatigue.

I actually deleted my FB account a few weeks ago. There were a couple of main reasons. Firstly, I was totally fed up with reading about the wonderful life of others. Yes, I’m completely aware that it’s not all sugar and spice and a lot is covering up a much harder truth. But I just couldn’t stand to see it. The second reason was seeing the bitterness creeping into my own posts. I could see what I was writing was oozing it. I didn’t like that and so I deleted the account. Do I miss it? No, not really. It’s a shame I don’t get to connect with some people as often, but I can put my hand on my heart and say, no, I don’t miss it. I’m left with other forms of media though and I’m able to contain my bitterness on those forums.

I was posting a bit about my fatigue. I thought by writing it down I might see a way through it. That didn’t work. I feel consumed by it. How do you accurately portray that? I’m trying to explore this with a neuropsychologist. It’s become really apparent to me, that I need help to deal with this diagnosis and find a way to accept it and live with it successfully. I’m crying as I write this, because, right now, I simply can’t see a way through it. I can’t see how I can regain Kirsty. It seems to me she has gone.

To be fair, I cry a lot these days too. Being so fatigued you can’t see straight isn’t conducive to dry tear ducts.

This post has been tough for me to write. It represents an opening of a window in the outer wall that surrounds me. My neuropsychologist, I may call him NP from now on, asked me why I don’t accept the fatigue I feel as physical, but rather as emotional. I couldn’t answer him, because I don’t know. It’s something I’m trying to explore. He wants me to try to accept that the fatigue really is real and it affects me in a physical way. That, obviously, is the high-level overview, there is obviously a lot more that has passed between me and NP but perhaps I’ll get to that…

I know this post is disjointed and I know it’s because it’s been really emotional for me to write it, but there you go. I was going to re-read, correct, amend and make it flow better, but you know what…I’m tired and I simply can’t be bothered. Perhaps there will be a part 2 sometime!

The next time someone tells you they are tired before you make a wisecrack, be sure they aren’t covering up something much bigger.

 

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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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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.

2

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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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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If sleep is for the weak…

No sleep for me again. My levels of fatigue at the moment are incredible but not in a good way. I want to sleep all the time and not because I’ve been burning the candle at both ends. I have a visit to the MS nurse this week and I’m really hoping she can suggest something that doesn’t come in a pill form to help me. I’m terrified of sleeping tablets and I’ve been on the losing side before, of a drug that was just meant to invoke mild drowsiness as a side-effect to dulling the effect of some of my MS symptoms. Coffee is my best friend at the moment.

Apparently though, I’m “strong”. I get that a lot. It sometimes makes me inwardly laugh as it seems my highly strung out, totally stressed and complete terror manifests itself as strength…in the eyes of others anyway. I wonder if my complete inability to acknowledge my fear and ask for help comes across as strength? Surely not. Perhaps it’s the fun I poke at myself and my epilepsy that makes people think I feel the same about my MS? I don’t.

God knows, when all this kicked off I tried really hard to be positive. Really hard. I changed my lifestyle to try to give myself a better chance of beating the odds, it didn’t last. I think the fatigue plays a massive part in this game. The more tired I am, the less convinced I am that I can scupper the negativity and regain the rosy view.

So that all got me to thinking invention and reinvention.

Invention, I suppose, is best described as the creation of something that didn’t exist. Then reinvention is taking something that exists and changing it to create something new. But, if necessity is the mother of invention, then what is the mother of reinvention? Evolution?

Take the wheel. We are often told that we should not try to reinvent the wheel, but was the wheel ever actually invented or rather did it evolve from something else? Around 5000 years BC there wasn’t any knowledge of a wheel per se. People – think Egyptians – used other methods to move objects. Logs for example. Logs are round(ish); wheels are round. So did the use of logs precipitate the evolution into wheels? The invention of the wheel can not be attributed to a single person. Around 3500 BC, across several cultures there is evidence of a wooden wheel being attached to carts. Then the wheel evolved further into the multitude of different “wheels” that we have today. As populations grew, trade increased and with other developments, I guess the invention of new circular objects, for example cogs, was required. Evolution is then the mother of reinvention, yes?

How does this relate to me then? Well, my life is evolving. Rapidly. These changes mean I need to make adjustments too. Is it time for a reinvention of myself? I don’t know. I’m rambling. It’s the tiredness…

The last few weeks have seen a new set of challenges. My Mum is in hospital, my Dad is using a washing machine unsupervised and the shower has started shooting water from the wall instead of the shower head.

The camel is, once again, being stacked with straw.

Sleep is for the weak…coffee is for the strong!

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Short, but not sweet…

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

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

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

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

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

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

Ah well. Shit happens right?!