Tag: chronic pain

An Injury Is Never Just An Injury

Bones

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When you have fibromyalgia, or trigeminal neuralgia, an injury is never “just” an injury.

Three weeks ago a door viciously attacked my little toe.  It was … well it wasn’t broken, and that’s the only positive thing I can say about it!  So the next day my fibromyalgia goes “HAH, PETTY TOE, LET ME SHOW YOU THE TRUE MEANING OF PAIN” and everything from my waist down felt swollen and heavy and on fire.  My joints all the way up to my hips were stiff.  I lay in bed and read trashy fanfiction to distract myself from the pain.  The day after that the burning heavy stiff sensation was only in the leg with the bung toe, and after that it went away completely.

So fibromyalgia is a real asshole when you get hurt.  But to top that off, whenever my fibromyalgia does a flareup, my trigeminal neuralgia does a flare up!

Well today, while sorting rams, I got smacked in the nose.  Fortunately by a hand and not a ram, but still, it was a good thwack.  I went and put cold water on it (the best we could do out on farm) and promptly had a meltdown.

The injury is on my face.  The injury is, specifically, on my nose.  The inflammation will put pressure on the second branch of both trigeminal nerves, and that’s likely to set off my trigeminal neuralgia which I had only just settled down after a volcano pimple on my jaw decided to set the whole thing off (why, oh why, does my face do this to me?).

So I had an anxiety attack, which is kind of understandable.  I don’t want my fibromyalgia to flare up.  I don’t want my trigeminal neuralgia to flare up.  I don’t want to be in pain.

But I don’t really get much of an option, and not doing the things that I love to keep myself safe from injury is also not an option … so I have to be kind to myself when I am injured.  And reduce inflammation as much as possible!

For now it is definitely setting off both trigeminal nerves, but it’s only set off the third branch of one side and mildly set off all three branches on the other.  Here’s hoping fibro doesn’t kick in tomorrow and make all the joints in my upper body stiff and achy!  I’ve got stuff to do!

How to Survive the Festive Season with Chronic Illness

Bones

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Now that I am through the festive season, I would like to extend my best wishes to all readers – whether you be transient or regular – for the holiday season, and my heartiest congratulations for coming out the other end.

If you could hear my hysterical laughter you’d understand that ‘surviving’ is about the only thing I can lay claim to for this past holiday season.  I managed to not yell at anyone.  I did politely snap a couple of times – when mum told me not to do a thing with the laptop that had to be done (I do know what I’m doing), and when my amazing human got salty about where we had coffee because we could have had coffee at the coffee place up the road (yes we could have, but we are not, because we are having coffee here, because you said you didn’t care where three times before as we went past cafes and I shoved us all into this one because you were getting grumpy).  But overall I managed.

Which is a fucking feat of perseverance if I ever did see one.  I went into it burnt out from the impromtu therapy session with mum wherein I was the therapist and helped her unpick and reframe a narrative that has been with her since she was two.  The good news is, she’s looking a lot happier, and she’s going to start looking into a therapist.  The bad news is it took so much out of me.

Throw me straight into two very long drives back-to-back (only one of which I had to do), my amazing human’s family arriving for two weeks, and the act of ‘running interference’ to ensure my amazing human doesn’t become overwhelmed by his parents, and you have a very stressed out and exhausted lady at the end of it all.

I rarely had time to myself to plug in my headphones and listen to anything.  I didn’t have time to do any of my self soothing routines.  I was out and about constantly, pushing myself to ensure everything went as smoothly as possible.  I was mediator, decider, herder of cats, support … the works.  My role in my family has always been as mediator and keeper of the peace.  My role in my amazing human’s family is apparently the same, with making decisions (because no one else does) and herding cats on top of that.

I failed miserably at implementing any kind of self care over the holiday period.  It’s hard to say ‘no’ when you’re trying to keep everyone else happy – and that’s a holdover from my childhood.  If I keep everyone else happy, no one will be grumpy, and I won’t be grumped at.  Well it only partly worked.  I still got grumped at.

But, in my rambling way, I survived.  I made it through.  The only incident was the dog eating a part-empty tube of cat laxative and having to clean that off the carpet (she’s fine).

And next year hopefully we won’t have two families combining over the holiday period.

Goodbye 2019, Hello 2020

Bones

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Well.  What a decade this has been.

I moved country.  Twice.  With a lot of animals.  I was married.  I was separated.  I am not yet divorced, but hey that’s coming this year.  I got more animals.  I moved city to pursue the career of my dreams.  I gained a weird older brother in my flatmate.  I met some truly amazing humans through my university course.  I met one of my truest and best friends to date through fandoms.  I met, and fell in love with, my amazing human bean.

I had a breakdown.  I was diagnosed with fibromyalgia.  I built myself back up.  I was diagnosed with trigeminal neuralgia.  I built myself back up.  I got rid of more narcissists on the way.

All throughout I was supported by the most amazing, kind, generous, loving and supportive humans I could ever have been blessed with.  My parents, for whom without which I could not have even begun my journey into my new career, let alone continued on it.  My nearest and dearest friends who have shouted me road trips and meals and yarn, who have given me hugs and cuddles and lent me their ears to vent and rage and cry.  My amazing human being who has stood beside me through ironing out my quirks, my panic attacks, my depression, my medication trials, my descent into physical disability, who has cooked me nutritious meals, has made spiced hot chocolates when things get tough (“I can’t fix it, but I can make hot chocolate!”), has enthused over anything I have shown interest in …

And then there are my amazing animals, three of which I will not get another decade with, who I cherish more than I can say and who have provided me with company, love, fur, poop, barf, and so many laughs.

This decade has, without a doubt, been the toughest I have lived through yet.  The physical, emotional, and mental toll of fibromyalgia and trigeminal neuralgia can not be understated.  It is brutal and it is every damn day.  And yet I feel very fortunate.  I have learned that the people I am surrounded by have more love than I could ever have imagined, and I feel truly honoured.

I am relieved this decade has, at last, passed.  There are many things I look forward to leaving behind.  While I do not ascribe to this ‘new year, new me’ (or ‘new decade, new me’) thing, I do find it is important to identify a ‘turning point’ so to speak, a point at which you can say ‘this situation did not go past that, and it is done’.  For me, the shift from 2019 to 2020 is that, in terms of freeing myself from narcissists (both romantically, and platonically), and the start of my journey into chronic illness.

Now bring me that horizon.

Fibromyalgia, Stress, and Exhaustion

Bones

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I had some news on Wednesday that reminded me of my beloved pets’ health, the fact that they are old, with many of the associated diseases, and had a realisation about their mortality.

You don’t think about it that often.  Or at least I don’t.  I’ve had one of my cats since he was barely a month old, and my other since she was 2.  I’ve had my dog since she was 6 months.  My derpy boy is now 13, my girly cat 15, and my pupper coming up to 6 years old.  They’re starting to get into their ‘geriatric’ years.  Both of my cats have geriatric diseases – hyperthyroidism and renal failure (to differing levels) – and my girly cat has other serious problems with her back and legs.

It hit me like a Volvo truck to the face.  They’re old.  They’re going to die.  If I’m lucky I’ll get another 3-6 years out of any of them.  But sometime soon they are going to die, and I’m not ready for that.  I’m not ready for my babies, who I’ve had since they were so young, to be old.

So I did what all people do when they’re faced with mortality: I had a meltdown.  I sobbed.  I curled up and rocked for a bit.  Then I sat and put on high quality distractions so I could just exist as a brainless blob for the rest of the day.  By the time I was due to go to sleep, I was already aching.

The next day, yesterday, was agonising.  The stress kicked off a flare.  All my joints were stiff and muscles burned.  My head was foggy.  I could hardly see straight, let alone keep my eyes open.  After a few hours of fighting the fatigue, I curled up on the couch and slept for 5 hours.  I was still incredibly dizzy and exhausted, so I continued my blob.  I slept like the dead.

Well today I’m still overly fatigued and my entire body feels heavy.  Even typing is hard today, and I strongly suspect another nap is in order, despite the long sleep I had last night.  My joints are still stiff and achy, especially my knees and hips.  My motivation levels have completely bottomed out.  My ability to do even easy things, like play a game, is completely nonexistent.

And the only thing I can do is ride it out.  I’ve had to put on hold all the things I needed to get done because I just can’t.  Some of them involve driving for hours and heavy digging, which I can do on a good day, but holy hells bells I can’t do when I’m like this.

When this kind of thing happens you can either fight it or relax into it and embrace it.  I’m still working on the relaxing into it, I really have to force myself.  But it’s better to relax into it than to try and fight it!

Microvascular Decompression: The Ultimate Fix for Structural Trigeminal Neuralgia

Bones

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Today I am talking about brain surgery.  It’s a terrifying thought, having someone faff around inside your head, but it’s also an important thought.  Because if you have a blood vessel touching your trigeminal nerve, this could be your ultimate cure.  You could get out of this life, the one where you’re constantly worried about when the next attack is going to hit, the one where you’re avoiding certain foods because you have to chew them a lot, the one where you can’t go out in the wind or the cold because it sets you off.

You could enjoy your life again.

Australian scientists have shown that chronic pain can physically change the brain.  We have lower levels of glutamate, which is a chemical messenger between brain cells and can help regulate emotion.  What this means is brain cells can no longer communicate in their usual way, and so the ability to process positive emotions is reduced.  So that feeling of being tired and unmotivated all the time?  That’s the effects of this change within your brain.

One of the first steps taken to diagnose and categorise your trigeminal neuralgia should be an MRI – with contrast.  This will allow a neurologist to identify any structures that might be touching or compressing the trigeminal nerve – things like blood vessels or tumours – or any damage to the nerve itself.

If you’ve got a blood vessel touching your trigeminal nerve, I’ve got good news for you: you can get microvascular decompression!

Microvascular decompression is a really cool surgery wherein they go in and put a very specialised sponge material between the blood vessel and the nerve where they are touching.  Once they’re no longer touching, there’s no longer a reason for the trigeminal nerve to go off, effectively curing your trigeminal neuralgia.

But it’s brain surgery, and brain surgery is scary!

In most cases, it’s not actually brain surgery.  The blood vessel and the nerve often touch outside of the brain, sometimes within the skull, sometimes outside the skull.  So while they may be entering your skull, they’re not actually touching your brain.  That remains unmolested.

The sponge they insert into your head is a very specialised one.  It’s not like a kitchen sponge, or like a sea sponge, it’s a very special kind of medical sponge, and it’s very very sterile.  Because of course it’s going somewhere bacteria must never go: inside your skull.  It’s also very small.  When you’re working in a confined space, you don’t want to add too much bulk to existing structures, because there’s nowhere for other structures to go.

It’s carefully placed between the blood vessel and the nerve, right where they are touching, and they stitch the sponge onto the blood vessel.  All blood vessels have several layers of tissue, and the stitches are only placed through the outer layers.  The stitches aren’t placed all the way through, so the inside of the blood vessel remains perfectly smooth, and you don’t get any accidental bleeding.

My best friend who has typical trigeminal neuralgia has just undergone this procedure.  She had an artery twisting around her trigeminal nerve and touching it in two places, so she has two sponges in her skull!  She had her surgery on Monday morning.  She went home on Friday.

For now, the right side of her face is numb, because of course the trigeminal nerve has been faffed about with.  She occasionally gets itchy teeth.  But she is pleased to announce she now has complete taste back on the right side of her face!  This numbness is expected, and it’s expected to continue for the next few weeks to the next few months, and she has commented that it’s bearable because she knows it’s only temporary.

She’s also said it is amazing to be free of pain.