Tag: living with disability

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.

Stepping Down on Tegretol SUCKS

Bones

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It’s been almost a week since I reduced my dose of Tegretol from twice a day to once a day, and my body is still acclimatising.

The first day was excruciating.  I couldn’t think, had no balance, everything hurt (including my face).  My skin was overly sensitive and every sensation was unpleasant or painful.  My team took one look at me and said go home.  I sat down and did some work, but then gratefully took them up on their suggestion and went home to curl up on the couch and watch my latest high value distraction: Mind Hunter.

The second day was a bit better.  I no longer felt like every part of my body was on fire with fever aches.  I didn’t have much balance, and in fact I sat back from interacting directly with the horses during our practical session due to this, but I was more alive than day one.

I’m now almost a week in.  I’m pretty sure I’m coming down with a minor cold or something of that ilk, as I’ve got the heavy duty fever aches, extreme lethargy, and overall fogginess.  While this is a symptom of my fibromyalgia, it’s usually reserved for ‘coming down with something’ rather than ‘you’ve done too much’.

I will not be getting acupuncture this week, as my acupuncturist has had a family emergency.  I’ll see if I can get two acupuncture treatments in next week or the week after, whenever he’s back, to hit the trigeminal neuralgia hard.  It’s been acting up a bit on one tegretol, and I’d like to settle it back down.

As you may be able to see, my thoughts are still sluggish and somewhat disjointed.  I’m going to blame that on the plague rather than the tegretol, and have a nap.

Acupuncture as an Adjunct Treatment for Trigeminal Neuralgia

Bones

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Since being diagnosed with trigeminal neuralgia, it went from bad to worse.  Even with the maximum dosage of Pregabalin and a thrice-a-day dose of Tegretol, the pain in my face was an almost constant 8-9 out of 10.  I like the following pain scale, because it also shows my mental state.

15 Pain Scales (And How To Find The Best One For You) | PainDoctor.com

Not only was I reeling from the Tegretol, but I was almost incapacitated with facial pain, which somehow is so much worse than pain in something further away.  I was taking huge quantities of medications designed to control this pain and it just wasn’t working.

So I put all my hopes on a blood vessel touching my trigeminal nerve somewhere so they could perform microvascular decompression, which is this really cool brain surgery where they stick a little sponge between the blood vessel and the trigeminal nerve and voila, around about 7 years of no pain!

The MRI showed up nothing.  Everything was fine.  Nothing was even vaguely touching the trigeminal nerve.  There was no explanation for why I had trigeminal neuralgia.

I had a complete meltdown.  I was really banking on the MRI showing something, and it didn’t.

The next day I booked in for acupuncture.  I have now had three acupuncture sessions, and I’m just about to go to my fourth.

After the first acupuncture session my pain went down to a 2-3.  I stopped taking my midday Tegretol, so I was down to twice-a-day Tegretol.  After my second acupuncture session, my pain went down to a 1-2.  I was moving that week, so every once in a while I would have a flare up to a 7.  The CBD Living Freeze (they don’t pay me for this shout out) has been a godsend for these flareups.  I roll it all over my face, fan the eucalyptus and menthol fumes away from my eyeballs (it buuuuuurns), and my face feels normal again!

I have a mild worming pain across my zygomatic arch right now, and a bit of a bone eating sensation in my jaw, but the consistent pain rarely gets above a 3.  As I said before, I am just about to go to my fourth acupuncture session, and once my nerves have settled down from that I shall drop my Tegretol down to once a day.

My goal is to completely come off Tegretol and regain my brain and my waistline!

Three Days Post Acupuncture

Bones

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Last weekend I had been suffering greatly, and even that is an understatement.  All three branches of my trigeminal nerve on my right face were aching constantly.  My nose was set to a permanent state of burning cold.  My zygomatic arch and brow just ached so much my eyelids were significantly more closed than usual.  There’s a continuation of the first branch that I didn’t know about until it shot up from my eyebrow straight up my forehead.  Ouch, right?

Then there was my third branch, the one that goes down my mandible.  The usual hole was being eaten into my jaw, and then I had burning aches in my chin, up my jaw, the works.

The pre-branched part of my trigeminal nerve wasn’t letting the branches one up it either, it was screaming pain, making it very difficult to put my glasses on, and woe betide me should anything graze the side of my face!

Because of all this, my fibromyalgia was up.  I was incredibly stiff in the morning, and very painful to move around, all the way up until the early afternoon.  Everything was giving me hell.

I had acupuncture.

For the rest of that day, my right trigeminal nerve was deeply confused, sending waves of peace, followed by crawling burning ache, then stabbing pain.  But I was getting peace.  I myself was pretty out of it so I spent the day doing not much at all and went to sleep early.

Day one after acupuncture was bliss.  My third branch wasn’t doing anything.  This is the one that’s been eating away my jaw almost since my trigeminal neuralgia kicked up a notch in June.  It was gone.  My first branch across my brow ridge was aching, but nothing like before.  I could actually think again!  I had no shooting pains, nothing.

Day two after acupuncture was also pretty rad.  A little bit more pain was coming through, but not much.  The pre-branching trigeminal nerve was aching a bit, my brow was still aching, but that was about it.

Day three after acupuncture things are sadly getting back to almost normal.  The pre-branching trigeminal nerve is hurting a lot, my brow is aching up to the middle of it, my jaw is being eaten away, and my nose is starting to turn to ice.  I don’t think it’s as bad as it was before, pain wise, but it’s still debilitating enough that I’m just wanting to go back to sleep (instead I’m just about to quaff my third coffee in 1.5 hours – STUDY STOPS FOR NO ONE).

Still, this was a fantastic experiment.  It shows to me that acupuncture can have a serious positive affect on my trigeminal neuralgia.  I’ll report all of this to my acupuncturist on Monday when I see him next and we shall try something else.  We’re just going to keep going to see what sticks!