Tag: walk to wellness

Never There

Bones

akshar-dave-YpHncJy_9ko-unsplash

I had a recovered memory the other day.

My relationship with my mother has been on my mind a lot in the last few months.  She admitted to me over the phone one evening that she had been very depressed when she had me and we had just … never bonded.  She didn’t know what to do with me.

I distinctly remember, at the ripe old age of 8, trying to do anything I could to make it easier for her.  My younger brother would throw a fit if his rice bubbles weren’t completely covered with yoghurt, and he wouldn’t allow the yoghurt to be watered down in any way.  Whenever it wasn’t fully covered, I would immediately say “I’ll have that one!  He can have mine / you can make him a new one” to stop the inevitable melt down from my younger brother.  To make it easier for my mother.

I was eight, and I knew without words that she was deeply unhappy, and I wanted to do everything I could to make her less unhappy.  I was eight.

My recovered memory wasn’t that.  My recovered memory was squeezing my excruciating legs to my body and curling into the fetal position, clenching my teeth to stop myself from screaming, and crying silently in my bed because they hurt so fucking much, knowing that if I got out of bed and complained about them, she would say “they’re just growing pains”.  These were my first symptoms of fibromyalgia.  I wanted to scream in pain, but at thirteen I already knew that complaining about pain got me nowhere.

I spent many nights like that, curled in on myself and clenching my body tight to stop myself from making any noise, especially when the pains hit me well into the night.  I couldn’t disturb mother.

They were only growing pains.

It’s no surprise, then, that at 32 I don’t express pain.  I was speaking to a woman the other day about my trigeminal neuralgia, and how disappointed I was that the MRI came back clean, because it means that my hoped for treatment, microvascular decompression, wouldn’t do anything.  She asked me if I really wanted surgery, and I assured her I did.  She asked me why and I said because I am in pain daily.  When she still looked sceptical (because I was carrying on a conversation normally and not looking like I was in pain) I told her I wanted to stab my face it hurt so much, because that would provide some sense of relief from the constant burns and aches I feel.  She looked shocked.

I won’t, of course, because it won’t do anything other than cause more problems, and it is an illogical act to do (hooray for being autistic), but some days I lie there and fantasise.

I have fibromyalgia and trigeminal neuralgia and you couldn’t tell just by looking at me.  I still throw hay bales around, talk till the cows come home, and do all the things normal people do when other people are around.  Because I learned very early on that showing pain gets me snapped at.  I still don’t show my pain much with my amazing human.  I say it matter of factly, but I don’t show it.  I don’t think I know how.

I have many more issues stemming from an unavailable and depressed mother, and I’m only just beginning to learn about them.  I’m definitely going to need therapy to help me untangle this mess!

There Is Nothing Wrong With Me (Except There Is)

Bones

trym-nilsen-eXV-LsWfCOo-unsplash-01

I went in last week for a private MRI.  It was a surprisingly relaxing experience – I spent my time cataloguing what all of the noises sounded like.  Most of them sounded like a really broken hard drive trying to work.  Some noises were like overbalanced washing machines.  Some sounded like the old 90s printers going nuts printing.

I got the report from my MRI today.  Everything is normal.  The brain is normal.  The nerve is normal.  There are no impingements, demyelination, nothing.  There is no physical reason for my trigeminal nerve to be permanently signalling pain.

I am devastated.  In a few days I’ll be relieved it wasn’t other things (like multiple sclerosis or a tumour), but for now I am distraught at the fact that they can’t fix this.  There is no cure.  They can’t make this pain go away.

This is my life.  Having a jaw that feels it’s being eaten away, a temple that aches and burns, a nose that feels like ice, and a brow and forehead that throbs.

Today I will be sad.  Tomorrow I will be angry and I will not let this be my life, come hell or high water.  But today I will be sad and accept where I am, which is in a lot of pain with no physical evidence to show for it.

This Is My Life Currently

Bones

christopher-windus-ys_PVhkEC6c-unsplashThe alarm goes off.  I groan, hit snooze, and roll over to steal some warmth from my amazing human who also doubles as a walking space heater.  The snooze alarm goes off and I whinge some more and convince myself I’m only going in for a little cuddle.  Several minutes later I get a nudge awake and I roll myself out of bed.  I stand up.

And promptly tilt over into the dresser.

That’s fine, there’s only a few centimetres between where I stand and the dresser, I’m not hurt in the least.  I stand myself back upright and lean on the bed as I grab my pants, put them on carefully one leg at a time (I’m also deeply inflexible first thing in the morning, so this is sometimes quite difficult), put my jumper and slippers on, and totter out.

My right eye is just a blur, like I’m not wearing my glasses.  My left eye works fine.

I stumble and list several more times on my way to the kitchen, but I manage to catch myself each time, usually with my feet, sometimes with my hands on a wall.  The cats yell at me to feed them.  Kettle goes on first, dog loses her shit because I’m up and that means breakfast, and the cats continue to yell at me.  They all have me whipped.

I continue to teeter my way around the house, feeding the various beasts, making my coffee, my amazing human’s coffee, my breakfast, until at last I can sit down and not expend additional energy catching myself as I start to tip sideways.  I subconsciously plan my routes to ensure I have either something structurally sound I can catch myself on, or something soft I can fall on, as much as possible.  I’m glad my floofy creature (cat, she rules our lives, and she knows it and loves it) is more interested in floofing in front of me – tail up and elegantly tipped to one side, glancing over her shoulder as she chirrups to make sure I’m following her – rather than doing a surprise floof directly in front of / under / between my feet as I’m walking.

By the time I’m seated with my breakfast and coffee my right eye is back to normal, if feeling uncomfortable (I’ve been to the optometrist who says it’s all beautiful and fine), and I spend my mornings relaxing and waiting for my body to stabilise a bit more.

Throughout all of this my jaw burns.  Well, not so much burns, as feels like it’s being eaten away.  It’s a diffuse ache with no distinct boundaries but a tapering off around a central pain.  Sometimes it’ll crawl down my mandible and into my chin.  Sometimes I’ll have flashes of sharp pain across the roots of my maxillary teeth.  More often than not I’ll have a frozen burning patch along the side of my nose.

I’ll browse through Facebook on my laptop.  My fingers will lightly spasm as I go through, so I have to make sure the mouse is off to the side of the screen so I don’t accidentally click on something.

After a little while I’ll get up, wind my way to a shower, and get on with my day.  I will have difficulty recalling things I did moments ago.  I will stumble over words.  My brain will supply me with an alternate word for the one I’m wanting, and I will have to logically work my way through an number of other words before I get to the correct one.  I will sometimes have intention tremors.

If I’m lucky, the wobbliness will be done by 10am.  Other times it lasts all day, and I will have to rely on my cane for balance.

I don’t know how much of this is the Tegretol or if this is an increasing severity of whatever is causing my trigeminal neuralgia.  Hopefully I will find out soon!

My Uncle Saw Me More Than My Mother Ever Did

Bones

frank-flores-EWhD0Fp2_jY-unsplashMy Uncle lives on the other side of the world.  I’ve seen him perhaps a handful of times at most my entire life.

On his latest trip to our side of the world, my Mother and my Uncle visited.  They stayed elsewhere, thank goodness, but they came over to my house and we sat around and we had some kind of meal or another.

My Uncle asked me how I was doing.  I replied that I was exhausted.  My Mother snapped back with something along the lines of you don’t look exhausted, and my Uncle responded with “because she knows how to put on a face”.

In one sentence, with a family member I realistically hardly know, my entire life was summed up.  He proved to me in that moment that he saw me better than my mother ever did, and likely ever could.

And damn if that doesn’t fucking hurt.

The Different “Flavours” of Trigeminal Neuralgia

Bones

adult-beautiful-woman-beauty-2109473

I have only had Trigeminal Neuralgia for a matter of months and yet it feels like years.  It’s interesting how pain has a way of warping your sense of time.  For me, it’s like there is no ‘before pain’, there is only the current existence with pain.

The pain has a massive impact on my life.  I do not attend university lectures as normal because the sound and the added massive excess of stimulus is too much and I can no longer wear my Bose noise cancelling headphones because they apply pressure directly to the trigeminal nerve.  I am fortunate that there is a student who records all lectures and I do my lectures that way.  I have to be careful how much I use my face when I’m in a group work setting.  I often have to cancel or reschedule my tutoring work because of it (bless them for being so patient with me).

Even though I am very early in my journey with this painful disease, I am already learning that there are many different flavours of trigeminal neuralgia.

On Sunday night I experienced what I can only define as ‘freezing burn’ throughout the entirety of the lower two branches of my trigeminal nerve – my mandible and maxilliary teeth, down the jaw directly from where the trigeminal nerve came out, along my zygomatic arch, and up the side of my nose.  The upper branch was only partly involved, trickling up the side of my brow and one little pinch at the middle of my eyebrow.

It was unresponsive to heat or cold, but responded positively when I dropped my friend off at the airport and had the aircon on hot hot HOT and so the air I was inhaling was more along the lines of 26-28 degrees rather than … 10-15.  It went back to freezing burn once I hopped out of the car and returned home.

I still fell asleep immediately.  One of the blessings of Tegretol is I fall asleep in a matter of minutes and I sleep like the dead.

Today I’m experiencing the odd sensation of … numb pressure.  It’s like my trigeminal nerve is numb but expanded somewhat, so there’s no pain, just the sensation of pressure and fullness.  It is vastly preferable to all the previous sensations my trigeminal nerve has graced me with!

Unfortunately it seems to have only lasted for a few hours, and now I have my usual bone eating sensation in my jaw and zygomatic arch and pressure ache across my brow.

My left trigeminal nerve has been relatively quiet as of late.  It was silent while my right trigeminal nerve was playing a character in Frozen – either that or it was twigging at such a low level that my right trigeminal nerve took all of my attention.

I’m recording these different sensations so I can remember what happened and when (because I have some serious memory problems these days), and also so that if someone else experiences pain like this, they know they’re not alone!