Tag: fibromyalgia

Your Feelings Are Not More Important Than My Disability

Bones

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I am a people pleaser.  Always have been, probably always will be to at least some extent.  Other people’s feelings are simply more important than my own needs, and I will go out of my way to avoid doing what I think might hurt someone else’s feelings (even if it’s unlikely to actually hurt their feelings).

I also have a warped sense of what will hurt someone else’s feelings, but that’s for another time, and probably a lot of alcohol.

Regardless, I put other people’s feelings above my own needs.  And I do that now, even when my needs are great.

I use a cane to get around.  I’m fine getting around home, but if I’m walking around places like university, or the mall, I need a cane.  It hurts to take little itty bitty steps.  My happy walking is huge swinging steps where I can really stretch out my hips and swing them.  I still need a cane for that, because to do it best I need to keep my hips nice and loose, which negatively affects my balance, but I can do it for a lot longer and it’s a lot less painful.

But yeah, I need a cane to get around.  I have to be careful how I get up off chairs, sofas, and the like, because I have balance problems.  I often have to catch myself with my cane to make sure I don’t fall over.  It relieves a lot of pressure on my hips.

I’m looking into getting an Assistance Dog.  Well, a dog that I can train up to help me with my mobility issues and in the future become certified as an assistance dog when a spot becomes available to do so.  Except for one, big, problem.

My amazing human dislikes dogs.  He does not want me to get another dog.  He gets the pinchy face and says he could not cope with another dog.

Now under normal circumstances that’s understandable.  But these aren’t normal circumstances.  This is a dog that will help me with the mobility and balance issues I have now, and will help me with any fluctuations of my mobility and balance issues (i.e. what I consider to be my inevitable decline).  This is not a pet dog.  This is a working dog.  A service dog.  A dog that provides a measurable benefit to my wellbeing.

I had to say, very explicitly, that it hurt that he could not see past his own feelings to support me in something that will benefit my life and wellbeing, both now and in the future.

Now some people (like my mother) will see that as a very selfish thing, and yes, it is.  Because it’s more than just his feelings – I will also be imposing on his time, he will need to develop a solid working relationship with the dog, he will need one on one training to change his current habits, and he will need to continue to work with the dog.  I’ve suggested agility as suitable work for them both, as it involves issuing commands and having them followed while requiring no contact between the two.

Except that it’s a small imposition to him for a huge benefit to me.  I am disabled.  I will likely always be disabled.  I will likely get worse.

No one is going to stay around with me and help me get up from the sofa, or stay home and cuddle me on the couch when I’m having a flare up day.  No one is going to follow me around uni making sure I don’t fall over, or help me up the stairs.  No one is going to be there when I need help getting out of a chair, or getting up from the ground.

I have to fight to do these things.  I have to fight my own body, I have to fight gravity (damn you and your apples!), awkward chairs and even more awkward canes.

But a dog can alleviate some of that.  A dog may be able to alleviate enough of that that I have more energy to spend on other things.  There comes a point where feelings are overruled by benefit to self.

This is that point.

He’s allowed to dislike dogs.  He can continue to dislike dogs.  I am still getting an assistance dog, and he can either work through his feelings about dogs to be fully onboard and work with me and the dog, or he can go.

Because at the end of the day, my disability is more important than his feelings, and if he cannot work past his own feelings to support something that will improve my disability, then he is not right for me.

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!

The Importance Of The Outside

Bones

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I moved house three months ago.  Well, I should say, we moved house three months ago.  We moved from a small, 70s built house with a very small lawn (2x3m, with a 1.5x10m run down the side) into a large, 60s built house with retrofitted double glazing, a catio (a patio that’s fully enclosed to allow cats outside time without them being free-roaming), three lawns, multiple edged and established (but overrun and very confused) gardens, a rose bush taller than the house, and two raised garden beds fenced off down the back.  We have apples and pears, an olive tree (I still don’t get this one), so many magnolias of different colours, roses popping up out of trees, and a loquot.  We also have a fig tree stump with a lone fig stubbornly growing on it.  Oh, and a grape vine!

This garden is a mishmash of things and it is very overgrown with ivy and jasmine and weeds and I have never gardened before in my life.  The closest thing I had to a garden before now is my small collection of succulents who, despite all neglect from me, have continued to survive.

Now I have an established and overrun garden to manage.  And I never knew how much I needed it until I had it.

I grew up in a large, old, draughty villa with a 1/4 acre section and a veggie patch.  There were trees I would scale all the way up until I was too “cool” to do so (around aged 15-16, I was a slow bloomer), a cinderblock I would use to contain any fires I lit just because I could, and an overgrown section down the back end of the garden that I could hack at with my trusty home made wooden samurai sword (whittled out of a branch courtesy of one of my friends).

My holidays were spent at the beach.  We had a small, lockwood holiday home within 5 minutes walk of a quiet beach.  There was no TV, no dialup internet or world wide web (in fact, some of this took place before those days!), and mobile phones were still a pipe dream.  We had to make our own fun.

What I’m trying to express here is that I grew up in and around nature in every part of my life.  I was a hippy child, a wild child – give me some rocks and I’d scramble up them faster than you could say “that’s a big rock”, and I would try to climb every tree.  Most of the time I was even successful.

As I got older I withdrew from the outside more and more, finding solace for my teenage angst on the internet and the people there.  I had an Angelfire Page – actually I probably had about five.  I was onboard when MySpace first came out, and Live Journal.  I was on Yahoo Groups and DeviantArt.

I stopped going to the beach for the holidays.  I stopped going outside.

I moved into a tiny little cupboard of a room in an awful little apartment with only concrete and horrifically overgrown “gardens” to speak of.  Then into a house with a single tree and a lawn you couldn’t even swing a cat in.  Next up was a house with a bush back section and a small raised lawn, then apartments.  I became “modernised”.

That little wild child who lit fires in the garden and ran on the beach and screamed into the wind because it was fun just … withered.  And died.

Looking back knowing what I know now, I suspect a lot of that was to do with my fibromyalgia, the incredible stress of working full time in a highly demanding job, and the stress and anxiety of being with a narcissist.

Regardless, I neglected an important part of me, that little hippy girl, and it took moving to this house to realise it.

She’s slowly coming back, that dirt grubber, with every step I take on soil without shoes and every weed I pull out without gloves.  With every time I sit in front of the open doors to the catio and breathe in the fresh country air and admire the green that creeps everywhere.

She is slowly coming back, and with her, I become more grounded.  More robust and at peace with my life.

The importance of the outside is, to me, immeasurable.

The Acceptance and Willingness Modality

Bones

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I’ve been going to counselling for a while now.  We started off with weekly sessions, moving on to fortnightly, and now we’re hopefully migrating into monthly.  It’s the free service offered by the university, so it’s not designed to be continuous, but rather a stop gap for exam stress and the like.  I’d love to go weekly for a few more months, but there’s a lot of pressure on the counsellors from up high to only do short interventions.

Which is a bloody nuisance because my counsellor is amazing.  She also has a chronic pain condition so she understands, and she’s been imparting some glorious knowledge.

But the biggest, and most amazing piece of knowledge she has imparted on me is the concept of “Acceptance and Willingness”.  They’re not quite the right words, because ‘acceptance’ has connotations of resigning oneself to something, but it’s the closest we’ve got.  She’s suggested I read “Get Out Of Your Mind And Into Your Life” by Stephen Hayes, and “The Happiness Trap” by Russ Harris, as they explain the core concepts around the whole thing.  It’s kind of like an extension of mindfulness, only in a way I can understand and take on board and use.

So here’s the way I see it.  Your first thought, in any given situation, is your conditioning.  I’ve been conditioned to be judgemental of fat people (courtesy of the narcissistic ex).  Society has also conditioned me to be judgemental of people’s appearances in general – too much makeup, too little makeup, weird hair, weird outfit, etc.  So my first thought is often not a kind one.  My second thought, however, is who I want to be and what I want to think, and it’s usually something along the lines of “he/she is fat and gorgeous” or “that outfit is so weird and they’re rocking it” (NO BUTS HERE!).  I turn my initial nasty judgemental thought into something complimentary of the other person, because the person I want to be is someone who is kind and supportive of other people.  By accepting my initial thought (“he/she is fat”) and transforming it (“and gorgeous“), I change the entire tone of my thoughts, and by extension of that, the entire tone of my body language.  It is unlikely I will ever not be judgemental (especially on bad days), because the conditioning runs so deep, but every day I will make the extra effort to move it to a thought I want to have.

Now that we’ve established that thought pattern for external things, the whole ‘acceptance and willingness’ modality is applied to internal things.  Not just thoughts of ‘ohmygod look at that maHOOSIVE forehead’ (like the total asshole my brain is sometimes), but also the thoughts of ‘I am not good enough’.

This is where it gets really hard, because part of acceptance is acknowledging the thoughts behind the feelings.  It involves diving into your dirtiest mental laundry to identify what, exactly, your brain is telling you when you feel a certain way.  Sometimes it also involves identifying why your brain is telling you this, and that can lead you to some very unpleasant places.  You can’t shy from it, though, or suppress it.  You have to look at the feeling, tell yourself ‘this is what my brain is telling me’, and then take a step back and say ‘I have identified that this is what my brain is telling me, and this is why’.  Then you take a further step back, ‘and now I must act in a way that aligns me most with who I want to be’.

For an initial example, one that many people with chronic pain will be able to identify with, I’ll tell you about yesterday.  I’m having a bit of a fibro flareup right now with all the stress of a friendship breakdown, mum visiting, and exams looming (with me having done no work at all, because I have issues around seeking adrenaline to enable me to complete tasks – which is another topic altogether!!).  When I have a fibro flareup, I don’t lie in bed, but rather on the couch.  I can prop myself up on cushions, I have my animals around me, the heat pump going, and a view of the garden.  Except once I lie down it’s painful to get back up.  It’s more painful to exist in any other position, though.  So once I lie down, I don’t want to get up.  I want to avoid pain because it’s not a nice thing to experience at all.  I don’t like it.  But I have to get up to get to university to borrow a book I said I would borrow from a lecturer that day, who is doing me a favour by letting me borrow this book.

Normally I would think ‘ugh, I am in pain, and I know I will be in more pain when I get up.  I do not want to experience this, so I will postpone borrowing the book until tomorrow when hopefully I am feeling better (but I will feel anxious about this action as well)’.  The acceptance and willingness modality is different.  It is ‘I am in pain and I know I will be in more pain when I get up.  This is an uncomfortable feeling.  Even though I will experience this uncomfortable feeling, I will act in a way that aligns me with who I most want to be, and I want to be someone who is considered well enough amongst my lecturers, and not some lazy ass student who asks to borrow something and never turns up.  So I will get up.’

The same goes to emotions.  I’m dealing with a lot of unpleasant emotions I don’t like dealing with right now because of this friendship breakdown.  I feel incredibly sad and just generally awful, which stems from the fact that my brain says I am responsible for it, I am in the wrong, I always do something to fuck things up, I am inadequate.  My initial response is to shove all those feelings away without bothering to identify the thoughts behind them, and distract myself with murder documentaries or podcasts.  It doesn’t stop me from feeling those feelings, and it can make me very anxious.  I’ve been in full on meltdowns because of this shit, where I can barely cope with cooking dinner because I’m so frazzled.  All I felt capable of was sitting on the couch, wrapped up in a blanket, stimming like crazy on my laptop with murder documentaries going on the TV.

This past week has been different.  Really fucking hard, don’t get me wrong, but different.  Instead of beating the feelings away with the mental equivalent of a baseball bat, I’ve stopped, taken a deep breath, and let myself feel them.  While feeling these things, I’ve tried to identify the different aspects, and the different thoughts behind them.  I’ve discovered a lot of thoughts I didn’t think I had – such as the one about inadequacy.  Then I mentally say (or say out loud if I really need to hear it) “my brain is telling me -” and here’s where I put in whatever thought I’m focusing on “- that I am inadequate.”  I’ll take it further:  “this thought stems from being ignored as a child, passed over for things during school, and never having any of my efforts acknowledged.”  As a child I was super awkward, and tried really really hard in school but only in short bursts, and there was no consistency or support structure in the home.  So I was the typical really smart but fails to apply kind of child.  Ergo, inadequate.

Once you name your thought and where it comes from, it’s easier to distance yourself from it and its associated feeling.  It gives you more clarity to see the situation for what it is.  In my case, not my fault at all, and actually a very controlling friendship.

Once you’ve got that small bit of distance you can then look at where you are and think about who you want to be, and what action will align you most with that person.  For me, in this situation, I want to be an independent woman who does not take abuse from a friend.  I also want to be a kind person, both to myself and to her, which means that I will not respond to her anger.  I will not tell people we know the details of our argument, unless they ask, and then it will be the most bare bones and factual.  I will not hold things over her or against her.  I will always be courteous to her.  But our affiliation is over.

It’s bloody hard.  I don’t want to feel these uncomfortable things.  I don’t want to see her, I don’t want to interact with her.  I want to avoid her and these feelings.  I want to hide away and never poke my head out.  But none of these actions align with who I want to be, which is the calm, confident, independent woman who does not take abuse from a friend and is kind, to both herself and others.

So I painstakingly open myself up to those unpleasant feelings and take that step towards who I want to be.