Never Go To Bed Angry

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“Never go to bed angry” is one of the earlier pieces of advice I heard, or read, or somehow acquired.  Who knows where from, or what it was for, or why, but it’s advice I have occasionally worked quite hard to follow.

Tonight is an excellent example.  Tonight I am feeling very put upon and sorry for myself – to be honest, I have been for most of the week, because this week has been awful, and I feel like I’ve been dumped on by people who should be trying to relieve my burdens, and by people who I felt should have recognised that.

I have been sick.  Not sniffles sick, but full on fever, vomiting, delirium, the works.  This will be the fifth day.  I still have a fever.

On top of that we’ve had no power to our hot water cylinder, which I’ve been tasked with finding a resolution for (long story, no one wants it to be their fault, I JUST WANT HOT WATER).

The dog had a really bad hotspot and needed to be seen by the vet.  That same night my friend’s dearly beloved cat and companion took a very sudden turn for the worse, and when I met her in the emergency clinic, it was decided that she would not be returning home with us.

I had a nurse’s appointment, then a doctor’s appointment.  An exam.  Still no hot water.

My lovely human (who I will gently address this with) said with a stern voice “we have to do something about this food in the fridge, it’s all going to go off!  We’re going to have to give it away!”  Except his tone of voice meant that I was the one who would have to do this, along with everything else.  “I can smell the dog, you’ll have to clean the cushions after this,” while I’m lying on the couch, unable to keep more than toast and honey down or stay conscious for much longer than an hour.

I am exhausted.  Tonight I mistook the dog’s medication for the cat’s medication, so off we went to the after hours vet clinic to have vomiting induced (which didn’t happen … until we got home!).  I even had a little cry in the waiting room while everything just hit me.

So I’m feeling very sad and put upon.  And not without reason, either, it’s been a catastrophically shit week and it just doesn’t seem to want to end.  It’s taking a lot of effort not to mope and sulk and be petty.  It’s when I feel like this that I know I’m at nope point and I need to take some time to relax.

A bit of music goes a long way, so while I’m waiting for my cat to be a bit more conscious, I’m chilling.  Then I will sleep!

“I can cure you … promise!”

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The number of times I have heard those words in the last few months since I have “come out” as having fibromyalgia is astronomical.

“I can cure you, promise!”

The first one was from a very pushy relative who exploded my inbox with con-man speak – you know the kind of language I’m talking about, that overly grand and emotive language people at things like the Landmark forum use to hook you in.  “Do it for your mum!” was a big one which nearly made me spit the dummy and tell her to sod off – if I’m going to do anything, it will be for me and not for anyone else, so I can hold myself accountable and not put that pressure on another being.  No one else should be the one I ‘change’ for, that’s unfair to them or to myself.

I was told I had to eat these particular foods all the time, fresh bone broth at least once a day, do all these things, and take all these essential oils and then just keep taking these for ever and you’re cured!

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The second time was yesterday.  I spoke to a friendly acquaintance who didn’t know what fibromyalgia was, so I explained it simply, and then told me she could cure it.

It’s all an autoimmune thing, prozac is causing everything, you shouldn’t be on any medications at all because they’re all bad and they’re all going to destroy your brain and leave you unable to function, look at us we’re over 65 and we’re not on any medication at all because we take supplements and essential oils!  Take these supplements and essential oils and you’ll be cured!

See, here’s what everyone seems to get wrong:  other than pedaling snake oil, to ‘cure’ means to ‘eliminate the disease or condition’.  None of the above are ‘curing’ the condition, because if those things were effective, once I stopped doing all those things, oh look the pain is back.

The first is literally too energy intensive for me to try, and given to me in such an overly pushy manner that I’m just saying no, get stuffed.  It all has a very false feel to it, and it feels to me like if I started down that path, I would just get sucked into more and more things and it would all go badly.

The second is the exact opposite of what I want to do.  I want to stay on my medication.  It is working.  It is helping.  It is not completely eradicating all symptoms, but it is minimising them to a point where I can continue with my life and do most of the things I need to do without being in undue pain and exhaustion.

I’m not against supplements (or essential oils) – I’m taking a whole host of them as it is, and they’re what started this whole journey in the first place.  I am against relying exclusively on them for a serious and complex set of medical conditions.  They are an adjunct therapy, not an exclusive one.

Double the Pregabalin

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I started taking pregabalin on the evening of my last day of work last year.  I did this specifically because we had a very busy period in the lead up to Christmas, and I did not want to be in any kind of vaguely altered state during this mad rush.

As it turns out, it was a good idea, as I experienced some fairly hefty dizziness during my first few days on pregabalin.  I was on the lowest therapeutic dose, 75mg twice daily.  My doctor advised that we had room to quadruple my dose, depending on how I responded, and we were

The week before last I had my first week of work experience, and so my first week of doing stuff, while on pregabalin.  75mg twice daily did not quite cut the mustard, and I found myself in quite a bit of pain by day two.  I also found myself with absolutely no energy by the end of each day, making it home as a zombie and crawling onto the couch to put my feet up.

Last weekend I doubled my dose.  This time the first couple of days involved some decent dizziness – nowhere near as dizzy as starting pregabalin, but definitely bad enough that I wasn’t keen to drive, but by the third day I was able to get around confidently.

It was immediately apparent that I had an increase in energy levels.  I have been able to do more during my days without exhaustion setting in.  On Thursday, I was up and moving / working / cleaning from 7am until 9.30pm, and while I was exhausted on Friday, I was no where near as achy and dead as I normally would have been.

I also have a much greater sense of peace and contentment.  Fluoxetine has worked very well for taking the edge of my anxiety and depression.  My resting heart rate gleefully sat at around 80-90, while my standing up and moving around heart rate would range from 95-115.  My heart rate, even lying down, would very rarely dip below 80.  My sleeping heart rate would be 50-60.  For me, these are pretty good values.  Before this I would usually have a resting heart rate somewhere in the 90s.

On amitrip (with fluoxetine), I’d have similar values, except for Tachycardia Monday, where my heart rate would consistently be over 100 (sometimes as high as 125) until about midday, and then it would go back to normal.

On 75mg twice daily pregabalin (with fluoxetine), I had fairly similar values as to fluoxetine only.  On 150mg twice daily pregabalin, my heart rate very rarely goes above 100 (even when I’m standing up and moving around) and typically sits around the 70s when I’m sitting and the 90s when I’m moving.  Sometimes it even goes as low as the 60s when I’m lying around!  Since beginning to wear my Apple Watch (specifically for this reason) almost a year ago, I have not recorded values as good as this.

So not only is there a clear physiological effect of lowering my heart rate (I suspect by some cool actions on my central nervous system), it also has the effect of relaxing me mentally, and giving me a sense of calm, contentment, and relaxed energy I have only really experienced when on a really good holiday.

I am hopeful that this continues for the long term and it’s not just my brain getting used to the increased amount of pregabalin.  If it does, I may have my life back!

Growing up with Chronic Pain

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As I have gained more information about fibromyalgia, I have come to the conclusion that I have most likely had this condition for well over half of my life.  Looking back on my memories, particularly of my early twenties, brings a lot of things into focus.

I was 13 when Harry Potter and the Goblet of Fire was released.  It was released during school holidays.  The family was having a rare shopping day at the local mall – we hadn’t pre-ordered the book (which I was kicking myself for, because I wanted it now), but we bumped into a friend who said the book shop around the corner still had a couple hundred copies, so we ran around the corner and bought one.

When we got home, I began to devour it.  I can’t remember how long it took me to read it, but I do remember lying in bed to read the last bit.  When I had finished the last page, I shut the book, set it to one side, and closed my eyes.  I was woken later to dinner, but didn’t want any – I was feeling quite unwell.  It was maybe a few hours later when I heard Mum talking about calling the neighbour to come over and look at me, as she was a nurse.  Said nurse came over and did a quick once over.  I was then rushed to hospital with suspected meningitis.

I remember the spinal tap.  The nurses were amazing, one of them asked me to tell him about my favourite thing in the world, so I rambled incoherently about Dragon Ball Z.  I don’t remember much else, just bits of being at home, Dad carefully sponging my face down with cold water, and everything hurting.  Especially my head – no pillow was soft enough.  I lost a week in this state.

When I finally came to, I had a two week recovery ahead of me before I began school again, part time.  It was around this time Mum said I began to lie in bed complaining of sore legs.  I remember them aching, throbbing, as I walked myself to and from school (uphill both ways – literally!) with my backpack that ranged between 4 to 15kg.  We went to a podiatrist and bought special inserts for my shoes.  It helped a bit, but still my hips burned.

I took up a part time cleaning job at 15 and regularly wondered why my knees and hips were on fire.  I had heart palpitations to the point where I had a mobile ECG put on for a monitoring period – they didn’t catch any and the doctor condescendingly said we can put you in touch with the psychiatrist.  I said I’d call them later to book a time and never did.

I took horse riding lessons for a few months.  Mum picked me up one day and I said I was sore and didn’t feel well enough to ride.  She drove me all the way out there and told me to get out and ride.  It was only after twenty minutes of crying in the car park that she took me home.

My time through my early twenties, which coincided with my time with It and Thing, was characterised by severe stress and so much pain.  My knees became so painful walking was excruciating.  My lower back was always throbbing, and random parts of my body would just start hurting for no reason.  My right thumb hurt so badly I wouldn’t move it for about three months straight – I went to the doctor and he said “well of course it hurts, you’re always poking it” and that was that.  I’d have to strap fingers together when the knuckles would flare up.

I just started wearing running sneakers with proper support to work, and that enabled me to get around better, although my knees were still incredibly painful.

Then my abdomen began hurting very badly.  It went on for months before I decided I needed to get this looked into, so I went to a doctor who sent me off for ultrasounds.  The ultrasounds came back clear and nothing else was done about it.  Everything still hurt.

I’m lucky, in a way.  I grew up with this pain.  I wasn’t allowed to do anything to alleviate it.  If I was lying in bed complaining about my legs hurting, it was just growing pains, or it was because I wasn’t active enough.  Later, when I raised problems with medical professionals under my own steam, I was told it’s all in my head, or there’s nothing wrong with me so it can’t hurt.  I was never allowed to not do something because of the pain.

So now, in my early thirties, I still do things despite the pain.  I’m not as afraid of triggering it as other people are, because I have had it most of my life.  I barely remember a time when I was not in pain.  I mean, I remember being a very active child – I excelled in martial arts and climbing trees and running and jumping and doing all the things, but it’s too abstract for me to be able to apply it to myself, for me to be able to look at it and go ‘damn I miss those days’, because I don’t remember them well enough.

I’m also really glad to have a diagnosis and to finally be medicated for it, because holy shit does it make a huge difference now.

Farewell 2018, Hello 2019

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It’s the last day of 2018 and I’m awake early, traumatised from my PTSD flashback last night and the subsequent nighmares.  My amazing human being had innocently put on a different show (because it was light and fun) after I had said what show I wanted, and I had spiraled into a panic attack and minor meltdown.  It was one of the first instances where I’ve spoken up and asked for the input to stop, and explained that I’m having a panic attack.

My amazing human being immediately stopped the show, grabbed my hand, and guided my other hand to my cat and stood with me until I was more settled, then provided chocolate.  Unquestioning support.

For me, 2018 has been a year of self discovery, self expression, and healing.  It has been hard, it has been upsetting, in some instances it has been straight up traumatising, but I come out the other end of 2018 a calmer, more balanced, and possibly even more confident person than I began 2018.

I must absolutely credit this back to my phenomenal friends, the closest of which have also (sadly) gone through narcissistic abuse, and who have been open and loving and who have shown me how to be open and compassionate with regards to my own mental health issues.  In one of my oldest friends I have found a role model for how to live with chronic illness, how to go through life unapologetic and dignified with disability, and how to allow yourself to be how and who you are.

In my amazing human being I have unquestioning support and consideration, and unending laughter.  He enables me in all things and throws his enthusiasm behind me, regardless of what direction I take.  He is constantly thinking of ways to make life easier and better, and reminds me that yes, I can do things the easier way, I don’t have to just suck it up and do it the hard way.

Yes, this year has been a hard one, but it has been a good one.  I am still glad to see it go, and look forward to what 2019 brings.