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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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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.