Tag: living with fibromyalgia

Never There

Bones

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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!

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!

Thank You To My General Practitioner

Bones

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I have been seeing my general practitioner doctor for two years.

I first remember meeting him as a depressed and anxious wreck during winter, where he looked at me and prescribed me antidepressants immediately, with a recheck in a couple of weeks.  I revisited a few times, both of us delighted that the first SSRI was a winner, and then I didn’t see him for a bit.

I didn’t see him until after my physio suggested my overreaction to injury may be fibromyalgia.  I described my symptoms to him and he said the words I hoped to hear:  “it sounds like you have fibromyalgia”.  We tried amitrip, then he suggested we try pregabalin, as amitrip wasn’t working for me.  It was a winner.

Then I got face pain and I went straight in to see him.  He said the words I really did not hope to hear:  “it sounds like trigeminal neuralgia”, but we treated it for a possible ear infection and possible shingles in the ear (because one of his friends had it years ago and it took a very long time to figure that one out).

I have visited him every week for so long the receptionist knows my name.

We’re now going for a private MRI and a public neurologist to get this sorted as quickly as possible, because I won’t be able to continue my education next year if this pain keeps up.

I have been incredibly lucky to get an amazing doctor first up.  He has never doubted what I have to say, never told me its in my head, always done additional research to ensure he is providing optimal care, and has taken the time and effort to personalise the treatment to my peculiarities.  He has been an amazing point of support throughout all of this.

So to my general practitioner:  thank you.  You are amazing, and you are improving my quality of life more than I can say.

Getting Outside Is Good For The Soul

Bones

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I have spent the day at a country manor, helping out with some very (very) basic farm things, such as finding the pigs and getting them back into their pen, and bringing the older cows in for drenching.

I even drove the two aside farm vehicle thing.  That was awesome.

Even through the drizzle and the cold, there was constant bird song.  The hills rolled on and on until they met the mountains.  You could see the valley wherein a dairy farm nestled.  And it was beautiful and so restful.

This morning I sat on the front deck while my dog zoomed around the landscaped front yard and I cried.  It wasn’t a sad cry, but rather that cry you get when you unclench and let everything you’ve held dissipate.  It took me some time to finish.  When I did, I felt renewed, and my chest felt light.

It just reminded me that I need to get out into farmland more often.  Not into bush – while I like it, it’s not where I feel most relaxed, but rather into the rolling green hills akin to England’s own.  Into lifestyle blocks and retiree blocks where there aren’t many animals, and they just need a bit of mustering because they’re so used to their humans and will follow them anywhere.

While I know it is only a transient feeling, I feel more settled than I have in a long time.

I Don’t Want Your Pity

Bones

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I’m back at university, which means interacting with other people, group work, class-wide work, and all that jaz.  This of course means explaining to a new group of people that my medications can make it difficult for me to talk at times – I’ll forget words, stumble over others, supplement one word for another without noticing at the time (I usually notice a few seconds later that I’ve done it), and the like.

And now explaining why I have to look like a robot and have no facial expression because I have trigeminal neuralgia throughout all three trigeminal branches – optic, maxillary and mandibulary branches.

Why I’m only coming to compulsory lectures / tutorials / practicals for a little while.

I am in an amazing group for my group work.  I am in a group that love each other dearly, who are open and inclusive, and who are genuine rays of sunshine.  I know their looks and their consideration come from a place of genuine care, but I don’t want it.

I don’t want it because it means they hear what I’m saying, and they think that’s awful, and I can’t allow myself to think that, because if I do I will break.  Because this is my normal, this is my life, it can’t be awful, and I can’t think that it is.  I can’t let myself think that my life is awful.

Because once I go down that road I meet nothing but expansive depression, and I don’t have the time for that shit.  I have a degree to smash.

I also don’t want the pity from my friends.  Or suggestions that I should take a semester off.  Not when I’m actually doing better, not when I’m improving day by day, not when they don’t see that because they don’t interact with me day by day.  While I appreciate it’s from a place of concern, I also found it rude and overbearing.

Except I also feel guilty for finding it rude and overbearing.  I feel guilty for asking her not to mention it again, for asking her to trust me when I say I’ve got this.

Managing disability surrounded by able bodied people is a challenge.  Dealing with their perceptions, their opinions, and their ignorance is, at times, completely beyond me.

So instead I whinge about it in a blog.  Hey, it gets it out there, and it makes me feel better, and hopefully someone else will read this and know they are not alone in what they are feeling or what they are struggling with.

I don’t know the answer to these challenges, I just know that I have to work through these feelings to understand what it is I don’t like and come out the other side.