....part two.

So, my post this morning attempted to put into context exactly what suffering from chronic pain can be like in the most extreme cases. I'm not always (thankfully) as bad as the scenario I described, but if you're going to try and make people think I see little point in giving a "best case" scenario. Pulling the punches will not yield the desired result. 

Coping, however? Now there's a thornier issue. How we all cope is as unique as the individual people we are. 

Some days there is literally no other option but to go to bed and try to go to sleep, in the hope sleep will yield relief and be the healer medical science claims it always is. I personally have no prescription painkillers for my Fibromyalgia, and I'm sure I don't need to tell anyone reading this blog that paracetamol and ibuprofen are in no way effective whatsoever. Thankfully though I am sometimes able to sleep off my flares.

Today has been a "recovery day". For me this means I've overdone it the previous day, or possibly it's a general build up over a few days of activity. Today is the result of seeing a friend from out of town for lunch, and then going out a second time to visit another couple of friends and their gorgeous new ten week old kitten (who am I to resist things both small and furry?)

On a recovery day, I do as little as possible. Today has been spent mostly curled up under a blanket with my wheatbag and a book wearing my heat gloves. The pain hasn't disappeared, but forced inactivity seems to have kept it from degenerating to the point of being incapacitating. I've done a little bit of cleaning (followed by a few hours rest) and made a crumble (again followed by rest and my partner cooking dinner instead of me). When I've finished typing I'll be having a soak in the bath (I have the water as hot as I can stand it, this seems to help me a little) and going to bed early.

How to cope with constant pain on a general basis though? I'm afraid I'm of little help in this regard, as I really do just grit my teeth and get on with it - because I'm not at the severe end of the spectrum in which sufferers can be completely bed bound, I can manage this way. In an odd way there's a small amount of gratitude here - I've discovered a situation where my stubborn nature is a help and not a hindrance. Who knew, eh?

I often find myself trying to mask my pain and discomfort for the sake of others, and recently I have been trying to break myself out of this habit. A quote I came across on Tumblr earlier today sums up the reasons I try not to do this any more:

“It’s okay to not be okay. It’s okay to hurt and cry. It’s okay to feel sad and wounded and angry. It’s okay to feel these things simply because you’re feeling them. No matter what anyone says, your feelings are inherently valid. They’re real to you, and therefore they’re important and deserving of being expressed. You’re feeling this hurt for a reason, and in order to heal, you need to give yourself permission to feel your feelings. You don’t have to hide your pain. You don’t have to put on a happy face or bury your tears. You don’t owe anyone a smile or an explanation. But you do owe it to yourself to be true to your feelings. You owe yourself the chance to heal. Don’t let anyone’s judgement rob you of that — including your own."

- Daniell Koepke

I realised I was apologising constantly when I needed to ask someone to help me or to do something for me, or saying sorry if I needed to leave a gathering early or couldn't make it at all in the end. My eternally understanding partner and some very good friends all sat me down and took me to task for this, reminding me that they do know what's going on and that they don't need an explanation or an apology from me. It's actually more difficult than I thought to stop myself - I'm a people pleaser by nature and it seems to be my almost automatic setting to feel I am a burden. I am slowly working my way out of this - trying to once a day just ask for something without explanation or apology, and then build up from there.

There are certain everyday tasks for example which my joints cannot cope with any more. I enjoy cooking and am completely unable to grate cheese - my wrist can't handle the movement even for a short time. I'm quite stubborn about chopping and try to do this myself, slowly coming to accept that it takes me far longer than it used to. I sometimes have to stop myself mid-flow of frustration and remind myself that nobody's going to die if chopping vegetables for my ratatouille takes three quarters of an hour instead of ten minutes. It's OK. No harm done. Occasionally though, I give in and ask someone to help or possibly finish it off for me.

Whilst on the homey subject, ironing has to be done in small bursts with rest periods - believe it or not, even a half full iron becomes too heavy and subsequently painful otherwise. Cleaning can be much the same, although we do now have a very light hoover which I can move with relative ease. It's taken some firm mental re-training (still ongoing) for me because I'm a person who likes to clean the whole place in one burst - that simply isn't possible any more. At the moment while I'm not working I'm setting myself a one room a day target. This is the reverse of a normal target - I don't have to do one room a day, I'm simply not allowing myself to do *more than* that one room if I do any at all. 

I also essentially kick the rule book every so often. I suspect this wouldn't be possible for those more severely affected than myself - according to my doctor I'm about "middle of the road" - but I find it helps from a psychological point of view to pick a good high energy day and:

I have to be careful - this only really works in a small burst and if I have time for recovery days afterwards. It might not be for everyone, and I suspect it isn't for most. Psychologically though, I've found this is good for me. It's a part of the whole makeup of the way I look at my condition. She's called Petunia - an unfortunate comment on my part of "it's like having a stroppy teenager inside you" led to the teenager being named by a friend, and this then stuck. In my own private thoughts I treat it as a game which nobody but me is going to win. I call her names and I direct some incredible sass her way. Each small victory of hers is merely the battle and not the war. With this in mind, "kicking the rule book" is effectively giving her a slap in the face every now and again. She needs putting in her place, after all. 

To this effect I have some touchstones - they can be quotes from just about anywhere, song lyrics or just about anything which amounts to a source of comfort. Some of mine I have never made exact sense of when or how I came to link them to my condition, but if it ain't broke then don't fix it.

One example is the Bruce Springsteen song Wrecking Ball, in particular the following lines:

Yeah we know that come tomorrow none of this will be here

So hold tight to your anger, you hold tight to your anger

Hold tight to your anger, and don't fall to your fears.

Now when all these steel and these stories, they drift away to rust

And all our youth and beauty, it's been given to the dust

When the game has been decided and we're burning down the clock

And all our little victories and glories have been turned into parking lots

When your best hopes and desires are scattered to the wind

And hard times come, and hard times go

And hard times come, and hard times go

And hard times come, and hard times go

And hard times come, and hard times go

And hard times come, and hard times go

Yeah just to come again.

Bring on your wrecking ball

Bring on your wrecking ball

Come on and take your best shot, let me see what you got

Bring on your wrecking ball.

Something now firmly burned into my memory was my being lucky enough to see Springsteen and the E Street Band in concert last year. Having been in A&E all the previous day, making it to the Etihad Stadium was just that little bit more precious - I was fulfilling a childhood dream I had never thought possible. When the opening notes of the song were played, I wept with a smile on my face until the final note died. I didn't care about the fifty thousand other people in the stadium with me - that song was something completely liberating for me. I paid for my exuberance at the concert for over a week afterwards - and every stab of pain mattered not at all. 

The other two examples I will share are quotes from Steven Erikson's glorious Malazan Book of the Fallen. The characters are not talking about illness - they're talking about nothing of the sort as far as I recall. It doesn't matter - the words mean something to me and I often say them in my head to myself when I'm feeling particularly low with the pain. Since when did something have to be logical to serve a purpose? 

First in, last out. 

The motto of the Bridgeburners - the origin of my moniker. 

Ambition is not a dirty word. Piss on compromise, go for the throat. 

From Erikson himself, as I've just been informed. This makes some small amount of sense to me - my ambition of beating this condition isn't dirty at all, and there is no room for compromise.

There you go - a window into the way I think about these things. If you're not now terrified and utterly convinced of my impending insanity, keep an eye out for my next posts!