It’s a Tuesday.

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.

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Chronic Pain Partners

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.

Fuck chronic pain. With a rake.

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.


25 Things No One Tells You About IVF and infertility…

1. When people say IVF is an ’emotional roller coaster’, they are sugar coating it – nothing will prepare you for the soul destroying cycle of hope and despair/hope and despair like month in, month out unsuccessful IVF cycles.

2.You will find yourself living in two week blocks – two weeks of self injecting hormones and watching to see if you got good eggs up… two weeks of waiting to see if your cycle worked. You will plan your entire life around these two week blocks.

3. Well meaning friends who aren’t aware or have forgotten that you are on IVF, will ask ‘So, when are you two starting a family?’ (sometimes while smugly patting a growing abdomen), which will simultaneously make you want to burst into tears and/or stab someone.

4.  IVF totally kills your sex life – after months (for some people, years) of trying the ‘old fashioned way’, you will find yourself being told NOT to have sex at various time while trying to conceive on IVF.

5. After a while on IVF, you will start avoiding baby showers and visiting friends with new babies. – you will even avoid the baby section of department stores and women with strollers in public… anything to stay away from the little emotional time bombs.

6. IVF drives home just how ‘animal’ humans are, and how hard we work to ignore this fact in our day to day lives – being infertile and unable to breed makes you feel ‘less of a woman’… femmascualated, if you will.

7. When on IVF, topics like vaginal discharge, sperm count, sperm motility, testicular aspiration, and fallopian hydration all become perfectly acceptable conversational gobbits, and will be trolled out with alarming regularity, even over the dinner table.

8. IVF patients see a pregnant teenager smoking or drinking, or a new brand new mom smoking near an infant, and do not just go ‘Tut, tut, how irresponsible!’ – they will go into a completely uncharacteristic, blind rage and have to employ all their self restraint to refrain from ripping that person a new asshole.

9.  When on IVF, people will frequently say, to ‘Why don’t you just adopt?’ – like there is a magical baby store somewhere that you can just rock up to a counter, place your order and pick up a matching pair of kids for an instant family.

10. While on IVF you won’t want to have sex – your abdomen will be bloated and tender from injecting hormones – so you won’t want to have sex during the follicular stimulation part of your cycle.  Waxy progesterone pessaries or Crinone glugging up your vagina like Clag, is so NOT sexy – so you won’t want to have sex during the luteal support phase of your cycle either.

11. You will find yourself unable to be genuinely happy for any friends or family members who are pregnant/having babies/have newborns… you find yourself faking happiness in these situations and turning in an Oscar winning performance.  This is emotionally exhausting.

12. On IVF, time ceases to pass in the same way – normally days and weeks and months normally seem to fly, but when waiting to do a pregnancy test, time will creep by the speed and velocity of cold molasses flowing uphill.

13. People will judge you for trying ‘extreme measures’ like IVF. They will say that you will ‘get pregnant as soon as you stop trying so hard’ – this is complete and utter bullshit.  No one in their right mind would put themselves through IVF unless they had serious medical issues.

14. While on IVF, even if you have a rare and fleeting moment when you feel up to it, your partner won’t want to have sex with you – he’ll be worried about knocking those precious little embryos out of place.

15.  When you’re on IVF, a veritable plethora of absurd advice will rain down upon you with alarming regularity – ‘Just take a holiday and it’ll happen’… ‘You just need to relax and it’ll happen’… ‘Try standing on your head after sex and it’ll happen’ – I shit you not on that last one.

16.  At some point when undergoing IVF procedures it becomes perfectly normal and routine to have a big plastic wand shoved in your vagina, sometimes several times each month – regular trans-vaginal ultrasounds become the least of your problems.

17.  The phrase ‘Life isn’t Fair’ takes on a whole new meaning – after enduring unsuccessful IVF treatments you’ll find yourself pondering women who get pregnant and don’t want to be and thinking ‘why is it so easy for everyone else???’

18. When you’re on IVF eventually the idea that people can get pregnant through sexual intercourse becomes a concept so foreign to you, as to be completely fucking absurd – conception no longer has anything to do with physical intimacy with your partner.

19. IVF somehow makes your uterus public property – everyone from your mum, your sister, your neighbours, your work colleagues, to your hairdresser will all have an opinion on what you are doing ‘wrong’ and they will be only to happy to share it.

20. After a while on IVF treatments the phrase ‘We are praying for you’, will make you want to commit grievous bodily harm.  With the nearest blunt instrument.  You will need a chaperone/witness for social occasions.

21. At some point on IVF you will try to convince yourself that you have ‘given up’ – but deep down inside you will discover you are unable to… even years later you may find you never actually ‘gave up’ and the pain of it all is still with you.

22. If you are on IVF long enough (too long?) you will find yourself developing deep and abiding friendships with the anaesthetists who keep you company while you wait for your surgeon – you may even end up with a favourite anaesthetist (this is a very sad state of affairs).

23. While on IVF, you will learn more about the female anatomy, the reproductive system, hormones and artificial reproductive technologies than you ever wanted to know… you will become the ‘Girly Swot Guru’ for the rest of your fertile female friends.

24. Early on during IVF your modesty will be defenestrated – about the second or third time you have an embryo transfer with your OB/GYN, a scientist or two, a nurse, an orderly and some strange guy writing notes in the corner of the room while you have your feet in the stirrups you will decide: ‘Modesty, schmodesty.’

25. But the worst thing no one tells you about when you’re on IVF is that a positive pregnancy test is no guarantee of a healthy viable foetus – so much can still go wrong from the point of conception and positive test to actually growing a healthy baby, and a miscarriage after years of effort, pain and expense is absolutely soul destroying.

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