One of the things that amazes me most about being in chronic pain is how on earth do I manage to stay asleep through the pain signals my brain is receiving, right up until the moment when consciousness returns and the first thing I notice is that my inescapable pain filled body is still there, still doing its thing?  How do I sleep through that at all?

I woke up this morning and did my usual ‘body check’.  Tension headache from Sunday?  Yep, still here – no doubt the result of sitting on an uncomfortable barstool for a few hours on Saturday night.  Anything unusual hurting?  Yes, my right should blade is in agony, and I don’t use that word lightly. I don’t remember doing anything odd or strange yesterday that would cause a flare up of pain in my shoulder blade area, but it is certainly talking to me this morning, loud and clear. I sort of lever/roll myself out of bed, my neck, back, hips and shoulders all sort of going ‘snap, crackle, pop’ as the stiffness of sleeping so dead still (yay Valium) works itself out, and put my feet on the floor.  My feet hurt, though no more than usual –  it’s a shooting sort of pain.  I’ve obviously been clenching my toes in my sleep again which causes tension through the arches of my foot and up my shins.  A quick stretch and a rub of my hands followed by a fumbled attempt to pick up my phone to check the time, also indicates that I have been doing my best ineffectual little fists of rage all night too, so my hands are a bit, ‘best not boil the kettle this early, lest one tip hot water all over oneself’ unreliable to say the least.  My teeth are feeling pretty icky lately – my ‘barometer’ tooth, the right upper lateral incisor, feels like it’s been moving, which of course it hasn’t – it’s just had my bottom lateral incisor pushing against it all night as I have been subconsciously clenching my teeth against pain all night. The muscles which run from the back of my jaw up to my cheekbones feel tight and horrible, not spongy and malleable like they’re supposed to, and when I open my mouth to yawn, it feels like of an old rubber band being overstretched that just might snap… cra-cra-crack-crack.

I stumble to the bathroom to pee and am screwing up my face against the pain in my hips as they complain about the very ordinary effort of being upright.  Bending down to lift up the toilet seat sends a shooting pain up the left side of my neck, again.  I go to pee and have to wait a moment… like everything else in my entire body, my entire pelvic floor also tenses up when I sleep and I have to consciously will it to relax in order to be able to go.  I stand up and face the handbasin to wash my hands, the cold water actually feels good – the colder the better, at least it’s not a pain sensation.  At this point I usually avoid looking in the mirror – I am fairly confident that I look as bad as I feel, and I just don’t really want to see the evidence of my pain all over my face, I especially hate seeing it in my eyes, as I know that means other people can see it too.  I wash my hands and lean over the basin (more cracking rubber band sensations in my lower back) to splash cold water on my face.  A few facefuls of bracing cold water and I feel like I’m trying to flush away the Valium induced drug hang over – it doesn’t really work, but I do it habitually anyway.

Back to my room and I pick up pants and a jumper that I carefully left on the end of my bed… god knows if they get kicked off and end up on the floor, I’m kinda fucked when it comes to picking them up.  Hang onto the bed end, one leg in, the other leg in, hips are going – ‘what the hell do you think you doing?’ Yes, it is rather adventurous to think one should be able to put on pants without an increase in pain.  And yay, I notice I am clenching my teeth some more from the effort of ignoring Putting On Pants Pain.  Stop doing that!  I do some jaw exercises as I get my jumper on with the minimal amount of lifting my arms over my head – ever wondered why so many of my jumpers have zippers up the front… wonder no more. They’re definitely not purchased to show off my cleavage to best advantage.  Next big obstacle… the bedroom door knob.  Slippery little sucker; it often gives me grief.

Walk to the kitchen… all 15 paces of it, thinking, ‘Oh you little shit, right shoulder blade, what the hell have I done to you?’  I grab a heatpack and put it in the microwave, wishing for not the first time that the microwave wasn’t in one of those face height (well, for someone of only 5′ in height, it’s at face height) wall wells, and thinking I’d be better off it if was on the bench.  The heatpack must weigh about 2kgs if that, but when I want to pick it up above my shoulder in the morning, I’m not happy about the extra 12″ higher that I have to lift it from bench height to face height.  I punch the buttons with seemingly unwarranted ill humour towards the appliance, and wait for the comforting noise of the microwave doing it’s heating things up, thing.

I turn around and lean over on the centre island bench with my forearms laying flat and my forehead resting on my arms… gently stretching out my lower back and trying to dissuade it from screaming at me.  I usually find myself staying in that position for a full 2 mins and 25 secs, shifting my weight from leg to leg as I persuade my hips to move even a little bit without pain.  I lift my head up, usually just in time before the microwave does it’s godawful and annoying, ‘beep beep beep’ schtick – my internal timer for 2:30min periods is pretty good, after hundreds and hundreds of similar waits for a heatpack to warm up.  I grab the heatpack out, still in a drug fucked haze and walk away from the microwave -usually having forgot to press the cancel button… the 2 or 3 seconds I have left on the microwave timer will annoy me later, but I’m not compis mentis enough to deal with that just yet.

I stumble to the living room and push a puppy out of the way – sorry puppy, no cuddles for you until I get this roaring fucking nightmare in my right shoulder blade to shut the fuck up a bit… though in all fairness, this morning it’s a right shoulder blade, tomorrow it could be the back of my hips, or the top of my neck or the middle of my back or wherever the fuck the tension and pain wanted to ‘settle’ for the night.  I sit down and position the heatpack behind me and wait… ten, nine, eight, seven, six, five, four, three, two, one, a half, a quarter, *sob* oh, fucking hurry up.  Finally, there it is.  Heat.  Heat sensations radiating through my spine instead of pain sensations.  I know it’s not actually taking the pain away – not really.  It’s just tricking the nerve endings into sending some different signal other than a pain signal to my brain.  Okay puppy, you can come for a cuddle now.  My back SHOULD be fine.  I SHOULD not be in pain.  But my nervous system is shot to shit after four nasty car accidents and my nerves send pain signals to my brain 24/7.

So what’s the point?  The whole morning heatpack ritual isn’t actually fixing anything so why am I doing it?  It’s pretty simple really.  When you’re tired, it’s awfully hard to ignore being in pain.  When you’re drowsy, or in my case completely drug fucked, it’s pretty hard to push those thoughts and sensations of pain to the back of your mind in order to be able to think about anything else.  In the mornings, because I am tired and drowsy, the pain is overwhelming.  Once I wake up a bit and can master my consciousness somewhat, I am able to apply the energy necessary to compartmentalise the pain to some place in the back of my head to be able to engage with the world in some hopefully useful capacity.  It doesn’t mean the pain is gone – it’s not – I’ve just learned to ignore it to a certain extent.  It’s why sleep, even the drug induced Valium unconsciousness that I call sleep, is so important.  Without it, my ability to ignore or manage my pain is significantly diminished.

I’d like to be able to say that today was a bad day.  If it was, maybe that would make this whole situation more bearable. I would like to be able to say that today my pain was particularly bad and that I went through this bullshit routine to get over this one, particularly  bad day, but I can’t – for me, this is just a Tuesday.

As a chronic pain sufferer myself, I am all too aware of how greatly and adversely my pain effects the people around me.  And even though I try hard to minimise those effects, I know that often I fail miserably.  I read this article, written by a man whose wife is a chronic pain sufferer, and so much of this reads just like my life too.  Only I wouldn’t really describe the periods of pain elevation, as a ‘pain storm’… my pain doesn’t really get significantly worse, it’s mostly my ability to cope with the constant 7-8 I live with on a daily basis diminishes considerably with fatigue or when facing the unexpected (that is, if I find myself having to do something that mentally I haven’t ‘budgeted’ for).  It’s an interesting read and I wanted to be able to find it easily in the future so I’ve taken an excerpt from the article and reproduced it here.

Tips For Men on Supporting a Partner with Chronic Pain

Pete Beisner knows a lot about supporting a partner in pain. Here, he shares insights on how to take care of the person you love.

We will be celebrating our 14th wedding anniversary this week, and I can say without a doubt that despite the problems that come with periods of joblessness and raising two kids to maturity, the thing that has had the biggest influence on our marriage has been pain.

So, I have two sets of tips. The first set of tips is for supporting someone you love who has chronic pain. The second set of tips are practical suggestions for how to support a woman in an episode of critical pain, like just after she has had major surgery or a serious injury.

1. I think that it is important to think of pain as your common enemy, not as a part of your wife or baggage that comes with her.
   It is something outside of both of you that impacts both of you and that can kill your marriage.
2. If your wife is anything like mine, she will try to hide her pain from you.
   She does it for two reasons: one, she does not want to be a wuss or a whiner. Second, she knows that her in pain is distressing for those that she loves, so she hides it from us.
3. Because women in chronic pain have to be good at ignoring their own pain, their maximum sneaks up on them and on you.
   Trust me when I say that you do not want to be surprised by your wife’s pain. The wall of pain will hit her hard, and if you are lucky she will end up snapping at your or the kids. If you are unlucky, she will collapse into sobs that will break your heart to hear. Before I learned to read the signs in my wife, it would seem like her breaking point would come out of nowhere. We tried to get her to tell us when she was coming up on her limit, but she only notices about 30 percent of the time, and that is after years of coaching and encouraging.
4. To avoid a pain-storm, be on the look-out for non-verbal clues of increased pain.
   My wife who is normally a font of cheerful patter gets quieter the further into pain that she goes because she does not want her voice to betray her pain. She holds her body more rigid, trying not to limp and holds her breath, taking one long rasping breath for every three that I take. There is also a look of grim determination that settles in her eyes, even if she is smiling.
5. When you note the non-verbal clues of increased pain, reflect them back to her.
   Ask that she put her pain on a scale from 1-10, but make note if she tends to tip to one side of the scale. My wife has had a C-section without anesthesia, so that is her 10. She rated a compound broken bone where I could see a jagged bone tip protruding through the skin of her ankle as a five. So know how she rates things. When you determine that she is in rising pain, encourage her to move towards a place where she can rest and take medication. Remind her how much the pain storm will cost her. If it is worth it for her to continue, then so be it. Do what you can to support her.
6. Chronic pain does not mean that the person has the same level of pain every day or even at various times in the day.
   So encourage her to put the fun stuff first. If she has enough energy and pain relief to do a quick trip out and about, encourage her to go someplace fun rather than the grocery store
7. Don’t let her “should” on herself—beat herself up for what she cannot do.
   Argue back when she expresses guilt or sets impossible expectations for herself. When my wife tells me that she is a bad mother because she couldn’t stand in the rain beside a soccer field, I remind her of all the other ways that she has been there for our kids. Encourage her to tell significant people in her life such as her boss and co-worker that her life is significantly impacted by pain. Remind her that stating the truth is not the same as complaining and it does not make her a whiner.
8. One of my early ways of dealing with my wife’s chronic pain was to encourage my wife not to do things that caused her pain.Then I realized that if she avoided all activities that caused her pain, she would never do anything. Let her grit her teeth and get through pain for things that are important to her, even if it kills you to watch her do it. And trust your wife if she says that she wants to have sex even while in pain. Sometimes and in some women, arousal can do wonders to offer temporary relief from pain.
9. Women in chronic pain are used to working through pain, distracting themselves, minimizing etc.
   They play mind games that help them get around it. But this means that they pay less attention to their bodies than other women do. In some cases, this makes it harder for the woman to get aroused. In my wife’s case, it makes her really really clumsy. I used to try to help her by saying things like “Your toes and nose should be pointed in the same direction as the location you are placing an object like a glass.” That really isn’t helpful. We have compromised: for things my wife knows are important to me, like lifting and carrying food, (I love her cooking and when it gets spilled all over the kitchen floor, I am in pain) she agrees as a favor to me to allow me to do those things. And, I keep plenty of Band-aids, ice packs and other things for the rest.
10. The key thing to remember is that pain builds even while you are managing to ignore it.
    The longer your wife is in pain, the more of it she experiences and the less she can block it out. So what would be an objective level 5 pain your wife can block out to make it a level 2. But when she is no longer able to block it, it will come back as 6-8. Beware of this whiplash phenomenon.

The complete article – hints for dealing with acute pain issues and post operative pain can be found on the NAIDW website.

One of the worst things about chronic pain (other than, you know… being in pain 24/7), is the predictability of my inability to sleep more than 5-6hrs a night.
I force myself to stay up until midnight most nights so I wake between 5-6am. Which of course is still an unseemly hour to be rising when you have no morning commitments. But when I’m stupid enough or so tired I can’t keep my eyes open and foolishly try to sleep early… I’m awake at 3am. Which. Really. Pisses. Me. Off.
Sigh. End result is that I haven’t had a single decent night’s sleep since 2007 so I’m chronically sleep deprived as well as I’m pain all day. Yay.
And people wonder why I come across like such a short tempered bitch sometimes.

I may have made a tactical error.

I’ve not been sleeping so great. Being on an unusual bed has a tendency to do that to me… aaaand this information surprises no one. So I wanted to go for a massage. Seeing that costs about $170 real dollars here, I thought I’d get one in Auckland instead. I know, but it seemed like a good idea at the time.

I found a place in a shopping centre, very similar to what they have at home, and though a 45 minute neck, back and shoulder massage might loosen me up a bit. But I kinda overlooked the importance of communication in the massage process having become familiar with the massage therapists that I see at home.

Turns out getting a massage from someone with a limited grasp of English, isn’t the same as getting my nails done from someone with whom I have a similar language barrier. Worst thing that can happen getting my nails done by a little Vietnamese lady who can’t understand me is that I’ll end up with nails that are out too long or too square. Turns out that the worst thing that can happen getting a massage from a little Chinese lady with speaks VERY limited English is that I can spend the next hour in excruciating agony!

The exchange went something like this:

Me: Hi I’ve got a chronic pain condition from a number of car accidents, and I’d like a neck, back and shoulder massage, please.
Massage Lady: You point. You point on picture.
Me: O_o okay *duly points to picture*
ML: Ok. On table.
Me: I’d prefer no oil and 45 min mins thanks
ML: Okay. Okay. No problem. No problem. I do you.

Hmmm…

So like a fool, I half strip and get on the table and within less than 30 seconds, I am clenching my hands, eyes wide open in extreme pain and going ‘Hey, easy on, that REALLY hurts.’ She pokes around for a bit, ‘So stiff. So stiff.’… a bit more ‘Very tight. Very tight.’, more prodding, ‘Too hard. Too hard’. I’m squirming and just about in tears, telling her to ease up! Then she says in very broken English, ‘You want me go lighter, I need take longer.’ Ok fair enough. I knew my muscles were in quite a state seeing how she poked my upper thoracic and I got a sharp pain behind my right ear, and then she poke my lower back and I got a horrid ants crawling over my scalp sort of tingly feeling, so that’s fair cop, I think. One hour it is.

She says ‘Muscles no loosen up without Chinese oil’. So, then it was out with the oil. Yeurk… I hate massage oil, it leaves you all slimy for the rest of the day. And she’s rubbing my back down like I’m a big brawny footballer or something, trying to get my muscles to loosen up a bit. And once they did a little bit, it was out with the pointy pointy fingers. Holy fuck. I had forgotten why I always try and see masseurs… larger hands means the heavy pressure is distributed a little less pointedly. Fark. Everywhere she touched me was horrendously tender and painful. I found myself doing breathing exercises like a laboring pregnant woman to try and get through the pain! Unbelievable.

But when I think I’m okay with that, it was out with the pointy, point elbows. Seriously, she was pushing so hard on my shoulder girdle, I swear I heard her put a foot up on the wall opposite to get more leverage! More gritting of teeth and imploring her to ease up a bit, ‘Yes, yes, lady. No problem. No problem.’ Argghh!

By this time I am lying there, face squished down the hole doing the squirrel cheeks thing, wondering how soon the hour will be up and wondering if I’ll make it. Next thing I know, she’s put a towel over my lower back and clambered up onto the table with me and starts getting into the back of my hips with her knees! Shit. As if this woman didn’t have pointy enough hands, and pointy enough elbows, I gotta saying, her damn knees were about as pointy as they come! She kneaded me (pun intended) all up and down my lower spine, rather skillfully getting into every vertebra by swinging her feet left and right to get the right angles. I felt like Tim Curry, in Charlie’s Angels with Lucy Liu walking up and down his back, half expecting some unexpected and swift maneuver that would render me unconscious any second… well I was hoping for unconsciousness, because this shit was fucking killing me!

I managed to get out of there alive, though seriously thought it was going to be a bit touch and go there for a while. I was somewhat dazed for about the next half hour, guzzling as much water as I could and trying to keep a jumper on so I didn’t cool down too quickly.

Not smart Borys, not smart. Tomorrow we will see if my back looks like someone took to it with a bike chain.

Shan’t be doing that again.