Wednesday, 17 June 2015

So Anyway...

If anyone in my family starts a call, text or email with 'So anyway...' you know some variety of shit is about to get some degree of real.

'So anyway... I think I broke my finger...'

'So anyway... my car caught on fire...'

'So anyway... it turns out that my doctor moonlights as a dominatrix...'

OK, only the first example is something that really happened but you get the picture.
We all do it.
Even me.

So anyway... it turns out I have Fibromyalgia.

If you've perused the murky depths of this blog you may seen a few blog posts (one, or two, or three) about when I got sick about four years ago.

Long story short: my arms got all warm and weird, my grip got a bit weak, my back was sore, my stomach went mental and for about three months at the start of 2011 it was no fun at all.
Everything slowly calmed down but it took at least another three months for everything to settle and for me to start feeling like I was getting back to normal, even if 'normal' meant that walking a kilometre left me a bit shagged out and exhausted for a while.

In between mid-2011 and the end of 2014 I was A-OK, no symptoms, no relapses, no mystery illnesses.
Life was pretty normal.

End of last year stuff started getting weird again.
It started with a couple of twinges in my hand, like I had smacked it on something and forgotten about it, a feeling like a slight bruise.
Around the start of December my the heel of my left hand on the little finger side got rather sore, it puffed up a bit and the tendon/muscle/whatever running up the side got a bit pissed off. I saw my doctor, popped a support on it, and it calmed down.
The doctor and I thought I'd had a little relapse of my mystery illness but had managed to head it off at the pass.

But then my arms got a bit warm again, my guts got on board with the madness, and my hands decided they were going to feel sore from time to time.

This was all a bit freaky.

Every time things seemed to be improving, they'd get worse or do something weird which threw me off balance again.

Several times up until March it seemed like everything was settling down but then it would flare up again.
The ache in my arm got worse and didn't react well to shit like me trying to type for long or at any kind of speed.

In March my doctor put me on some anti-inflammatories.
I made the mistake of reading the side effects list in the literature, my body decided to throw in some aches which suggested I was reacting badly to the anti-inflammatories.
I got nervous and went off them while my doctor sent off some blood samples to test my kidney function and a few other things.
While I was off the anti-inflammatories my knees and ankles started aching.
My tests came back clear, I went back on the anti-inflammatories but my arms, knees and ankles kept aching. In the case of my knees they started getting worse to the point that during April I couldn't move much faster than a hobble.

It was about this point that I started going off the mental health tracks a bit, though I didn't realise it at the time.

My train of thought went:
  • I am on anti-inflammatories
  • I am still getting worse.
  • I am getting worse reasonably quickly.
  • Therefore I have something progressive.
  • Something aggressively progressive.
  • This is going to get worse.
  • I am not going to be able to take care of myself.
  • I am going to have to depend on my family.
  • There goes a whole bunch of stuff I might have chosen to do with my life.

No matter what I did I couldn't stop thinking about it.

If there was anything I did or failed to do which had led me to get sick in the first place.

If there was anything I did or didn't do after recovering the first time that had led me to this relapse.

If there was anything the doctor should have done that they hadn't done.

If there was a version of me off in the multiverse who had managed to make the right decisions who was living a pain-free, able-bodied life while I was fighting to get myself up and down a couple of stairs.

I started obsessively cataloguing my various symptoms, convinced that if I could just tell my doctor enough things that she would finally have a Dr House moment and be able to tell me what was happening.

Especially be able to tell me what was happening in a timely enough fashion to maybe stop it from getting worse before it was too late.

I had stopped exercising because I had no idea whether I was aggravating my joints which seemed to already be pretty angry at me.

This was not helpful, especially as walking was what I had done to make me feel in control of my situation and like I was doing something to improve my health the last time I got sick.

Sometime in March I made an appointment to see a Rheumatologist but due to the demands on their time the first appointment I could get was mid-May.

In the meantime I had seen the doctor and the physio and they had both told me that I couldn't damage myself by walking.

My doctor had ordered some more blood tests and my rheumatoid factor and a few other inflammatory indicators had come back in the normal range, along with a few other things that indicated I didn't in fact have a degenerative condition.

My physio had inspected my knees and told me that the joints seemed fine and weren't warm or swollen, they just weren't moving quite as smoothly as some of the muscles had tensed up but that walking wasn't a bad idea.

I'd even seen a hand physio about my various aches and pains and weak feeling grip and according to her my hands were mechanically sound and even though my grip felt weak it was actually in the normal range for my age.

So I started walking again, slowly and carefully so as not to push it or piss my body off.

I started seeing a psychologist because I had finally clued in to the fact that I was not coping with this situation at all.

The thing that had finally tipped me off was that I had started crying.
A lot.
For me at least.
For me crying is usually a once or twice a year thing.
Nothing that dramatic usually happens in my life and when I get normal level sad or angry or depressed I usually watch something or read something until I've calmed down enough to deal with it and by that point I'm unlikely to cry.
I was cry-sploding on a couple of my friends on the regular.
When something sad happened in a TV show my eyes would fill up.
If a sad song came on the radio my lip would wobble.

When I'd gotten sick the first time my doctor had mentioned the possibility of relapse in the future but my first illness had been: arms were weird for maybe a month, guts were mad for about four months, my energy levels were down over about six months.
There had been absolutely no talk of my arms and legs crapping out on me.
I had been aware of and braced for the possibility of a life that was affected by more long-term gut troubles, not from a life where I couldn't cook because I couldn't push hard enough to chop vegetables and I couldn't clean my own house because pushing the vacuum cleaner did not seem like a viable prospect.I had not at all been ready for this, not even remotely.

I went to the psychologist, I sobbed and snotted all the way through my first appointment, emptied out an entire tissue box and left the appointment feeling a bit lighter and less tunnel vision-y.

I had been improving slowly but steadily since I started walking and talking to the psych but I was still moving slowly and feeling a bit sore.

Finally May came around and my lovely aunt who is a nurse came to my rheumatology appointment with me.

I described the first time I got sick.
I described the second time I got sick.
The rheumatologist asked me a bunch of relevant questions.
She tested my joints.
She inspected the muscles that had been aching.
She got me to sit back down.
And she told me that it looked like I had Fibromyalgia.

My first reaction was to say 'fuck' because, fuck, I have a thing that has a name.

But then she told me that despite the discomfort they were feeling at the moment my joints were actually fine - oh thank God.
My muscles were not damaged either - double thanks, double God.
That the pain and stiffness I was feeling was because my pain system was sending exaggerated messages to my brain and my muscles were tightening up to protect my knees from an injury they hadn't sustained.

Fibromyalgia doesn't have a cure but it can be managed.
The three key things to do to manage it are:
  • get regular exercise
  • consider medication
  • manage stress as stress can exacerbate the symptoms

I had started with the regular exercise, the medication that my doctor had prescribed me to help me sleep* was actually a medication that is also prescribed for Fibromyalgia, and I had started seeing the psych so I had already started doing things to manage my condition without knowing I was doing it.

When I had recovered after my first episode I had managed to stay symptom-free for over three years just by exercising regularly, taking care of myself and not stressing out.
Of course at the time I didn't know I had anything to stress about so that was actually kind of handy.

After I got past the 'oh fuck' reaction to having something that had a name, the sense of relief was massive.
It had a name.
I had a list of Do's and Don't's.
I could stop second guessing myself.
I could build a plan of attack.

85% of my stress was gone, pretty much immediately.
I felt completely off balance but also like a great weight had come off of me.

My aunt told me that the next week would probably be a bit rough as a I went on a rollercoaster that went from 'yay, I have answers' to 'argh why me?' back to 'yay I have answers' but honestly apart from a couple of moments in the first couple of days after my diagnosis, most of what I have felt has been relief and a sense of regaining my balance and control over the situation.

So yeah.

That's what's been up with me.

I didn't want to write about it while it was at its worst because:
a) my arms and hands hurt so typing was not a great idea;
b) I didn't want to risk people commenting with anecdotes about friends or family members, or looking up shit on WebMD for me that would freak me out; and
c) when I feel stressed or freaked out the last thing I want is for people to know about it, I want to retreat like a little hermit crab into my shell until I feel calmer and stronger.

Since my diagnosis I have been exercising regularly, I have some physio exercises I've been given to strengthen the muscles that support my joints so that if they flare up again they won't get as bad because they'll be better protected, I've been sleeping better, and my psych is helping me put together some strategies to keep my from freaking out the next time I potentially have an episode.

The muscles around my knees have almost completely calmed down, though I'm still a bit more aware of my knees and ankles and they still ache a bit at the moment.
My arms are doing a lot better though my forearms do get a bit ache-y sometimes if I type fast for an extended period of time.
My guts have been fine for months, thankfully.

Essentially I'm doing OK.

'Slow but steady' is my mantra at the moment and it seems to be doing the trick.

I don't know if I'm going to get all the way back to symptom-free again this time.
If I do, I don't know if I'm likely to have episodes crop up in the future as we can't pinpoint what would have triggered either of the ones I've experienced so far.
Even at their worst, my experiences so far have been more about persistent discomfort and reduced mobility than chronic pain so I know I'm a lot luckier than some other people who have more intense symptoms on a more permanent basis.

At the moment I'm just focusing on doing my Do's and avoiding my Don't's, taking care of myself and keeping my head on straight.

And yeah, I'm doing OK.

TL;DR: The human immune system is a weirdo that sometimes does dumb things.

*My physio had asked me how I was sleeping when I went to see her. I said fine. She said that was good as I should keep an eye on that because insufficient sleep can lead to low serotonin levels and possibly to depression. That very night I started to have interrupted sleep, that continued as problems getting to sleep at night, waking up multiple times, waking up early before my alarm and I felt deeply deeply betrayed by this as 'sleep until you feel better' was a time-honoured family response to all varieties of illness that had abandoned me like a jerk-ass.
I have no idea if it was just bad timing or if I'm as impressionable as a wet lump of clay but it wasn't fun.

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