Tag: chronic illness

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.

Deep Tissue Massage for Fibromyalgia

Bones

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My acupuncturist had a family emergency last month which meant he was off for about three weeks.  During that time I had some fairly considerable trigeminal neuralgia flareups and, in a pain induced panic, decided I must see someone … just not someone with needles.

I looked around online for massage therapists near me and stumbled across this one particular one that had good reviews and wasn’t overly expensive.  I got an appointment for the next day and went in, hoping some massage would ease the fire in my face.

It didn’t.  Oh boy did it not.  What it did do, however, was loosen some knots that haven’t been released in decades, knots my shiatsu massager just would never be able to reach.

Now I’m not talking about your normal relaxation massage where you go in and they kneed you for an hour.  No, I’m talking about the massage where the therapist actively finds the painful spots and then digs her thumbs into them for an hour.  It’s painful.  I make some truly spectacular noises and groans of “oh god” while she’s doing this.  It’s amazing.

I left feeling battered and bruised and nauseated, like I always do with any body work that releases tension, but after a few days I felt revivified!  I went back the next week.

This time she discovered even more knots.  See, now that she’d begun relaxing the superficial layer, she was able to find the deep knots, the ones that cause problems.  The ones that haven’t seen the light of day (or rather, felt the “tender” touch of a massage therapist) for decades, nay, eons!  Well after this session I felt so light headed and dizzy I couldn’t quite function for the rest of the day, or the next three days after that.  She’d knocked something loose in my back that had really done my head in.

I’ve just revisited her today and I am definitely noticing an improvement in how my body feels, despite the pain from coming off Tegretol (another blog post in and of itself!).  I’m also noticing an improvement in how my body moves, which is really rewarding.

My theory is this:  I have a lot of knots.  I have a lot of muscle tension.  I have a lot of muscle fuckery.  This will all be amplified by fibromyalgia, causing me both excessive pain, and excessive stiffness.  If I can work out these knots, release this tension, and improve my muscle health through deep tissue massage and gentle exercise, this will reduce the level of pain I will experience from fibromyalgia, because there is less muscle pathology.

So far I think it’s working?  It’s a bit hard to tell, what with exams, the stress of losing a friend, and coming off Tegretol.  To be honest I’m just throwing everything I can think of at my fibromyalgia and trigeminal neuralgia and hoping something sticks, so identifying exactly what is having exactly how much of a positive impact is going to be a bit tricky.  Here’s hoping the deep tissue massage sticks!

Either way, it’s making me feel better, and that’s the most important thing right now.

Today I Lost A Friend (And I Caused It)

Bones

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Today I lost a friend, and I caused that loss.  I’m sad.  Actually, more devastated.  She has been my very close friend throughout this year at university, but prior to that we were friends for about 3 years.

We were going to do a thing together, one that had major financial implications for me, and a lot of time investment from her.  I decided it was not going to work for me, it was not something I wanted to do at all, I told her before she devoted herself to it.  We’d both put some time into it, her more than I, and she’d put some money into it, but neither of us would lose a huge amount.

I decided it wasn’t going to work for me for a number of reasons, some of which were friendship problems (I didn’t think our friendship would survive the business relationship), and the other of which I would be putting in a lot of money that I would rather put to use elsewhere.  Like a deposit for buying my first house.  Or implement some new thing to help with my fibromyalgia or trigeminal neuralgia.

Talking to other friends (right now) is making me realise there were other cracks in our friendship long before now.  There were controlling aspects, an imbalance in the dynamic of the relationship (I was assigned the role of helpless invalid which, at the time, I must admit I was, but it never changed as I became less helpless).

There was an issue wherein she demanded control over my actions and I did not cede to it, because my assessment of the situation was different to hers.  This was a major point of contention, with her continually stating that I had a fear of losing control, that I did not trust her because I did not relinquish complete control to her, and that that was hurtful.  I hadn’t realised until now how manipulative that is.

Okay, so I lost someone I felt was a very close friend because I put myself first in a situation that would have a major impact on me and said this is not something I am going to do.  I want to keep the friendship, and I do not feel it will survive a business partnership, and I am unwilling to mix those.  Therefore I will not do it.

She noped right out the door and locked it after her.  And damn if that doesn’t hurt.