The Acceptance and Willingness Modality

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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.

This Is My Life Currently

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

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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.

I don’t want the life I lead … or the life I’m heading into

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I sat on a foot stool in Spotlight, exhausted and in a not inconsiderable amount of pain, waiting for my mother to extricate herself from the yarn department.  I had bought two balls of lovely soft cotton and was contemplating what to do with them when my thoughts moved to when I would be able to do anything with them.

You see I have this week off, then a week of work experience, then I’m back at uni, which just sort of continues until December of next year as we go straight from this year into our final year, do not pass go, do not collect $100.  I have very limited time to do things that I enjoy, and usually by the time I get to them, I’m too exhausted to do them.  I don’t like this life that I lead.

But I’m sucking it up and doing it because it will get me into a career I am infinitely passionate about and absolutely what I should be doing with my life.  Unfortunately it’s also a career where overtime and overwork is just par for the course and rather expected of you.  Especially in our final year of university.  We’re not ’employees’, so there is no legislation preventing them from requiring us to be in clinic from 7am to 7pm, or later, or from going straight from that to an overnight shift.

I really don’t like the life I’m headed into.

But like all things, there’s the ability to mould that life into something you want.  In my case, being stern about in clinic hours and my own requirements, and ensuring that I will not be failed on the basis of only being able to be in clinic for reasonable hours.  And after university is finished, setting up alternative income streams (I almost feel gross saying those three words, they sound so … smarmy and corporatey) so that I can work part time, and find a place that will allow me to work part time.

It was a sad realisation, though, in that shop.  It’s the career I’ve worked most of my life towards, and my own body is making it so much more difficult than it needs to be.  My body is preventing me from doing what I want to do to the fullness I want to do it, and I’ve had to seriously adjust what I want to do to compensate that.

It seriously sucks.

So I’m going to allow myself to be a sad sack of potatoes about it for a little while, then grab myself a cuppa tea and start plotting an easier future.  My life won’t give me exactly what I want, so I will make a suitable compromise – one where I can still pursue the career I want, without exhausting myself to the point where I can’t do the other things I want to do.

I am doing good enough

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I find this notion of “I am doing good enough” incredibly difficult to define and accept.  As someone who has had chronic fatigue and chronic pain for over half her life, I don’t know what it’s like to not have it.  So, when I look at everyone else zooming around, doing so much, having all this energy, I think to myself how do they do that? why can’t I?  I still can’t tell myself I have a chronic illness that reduces my ability to do everything.  Not I have a chronic illness that stops me from doing things, because I am as stubborn as a mule and will chop my own nose off to spite my face, and if someone, even myself, tells me I cannot do a thing, damnit I will do the thing.

I still can’t tell myself it’s okay, I am doing as much as I can, and I am still doing well.  This is because I am comparing my achievements to able-bodied people.  Not only am I comparing my achievements to able-bodied people, but I am in a course where my achievements are compared to able-bodied people.

I am in one of the most difficult and gruelling degrees in the world, one that is hard for even able bodied people to undertake.  I am allowed to be doing not as well as them.

But I don’t see that.  I don’t think that.  I’ve gone my entire life thinking, and being told, that I’m normal, that I’m just lazy, that I just need to try harder, work harder, do more.  It’s a mentality I’m struggling to shift.

I suspect it’s a mentality many people with chronic illnesses and/or disabilities have difficulty with.

Sometimes I manage to remind myself.  Sometimes I even manage to feel it in my heart, instead of just in my head, but that goes away with so much as a stiff breeze or an assignment.  I try to keep up with my more able-bodied class-mates.  Sometimes I succeed.  Sometimes I struggle.

But at the end of the day, I am passing.  I would like to be getting ‘average’ marks, and each time I think that, I tell myself I am doing good enough.