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.

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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.

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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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OMG. What have I done?

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.

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Malinger – to feign illness, in order to shirk one’s duty or avoid work.

“I know what people in pain look like… and she’s definitely not in pain.” said the stupidest, most ignorant fucking prick this side of the Black Stump, to my friend…

What gives someone the audacity, sheer gall, to meet me for a few hours, pass judgement on my body, my pain and my inescapable daily experience of it, and then decide that I’m some sort of malingerer?  What sort of arrogant wanker thinks he has the right to look into my mind, my heart, my body, and decide what I do or do not feel?  What sort of smug, pompous, self involved, vainglorious little arse of a man (who, by the way, is not in possession of any sort of medical degree, extensive nursing training or engaged in the healthcare professions), gets to decide that I am LYING about MY pain?

Many of you know me pretty well… you’ve seen me at medieval events wearing heavy and uncomfortable clothing doing things that I shouldn’t be doing, you’ve seen me laughing and being social at parties pretending everything is fine, you’ve seen me (like this fucktard has) standing around all day in pain teaching people to shoot.  You’ve seen me helping out where ever I am physically able, whilst simultaneously acknowledging and yet attempting to ignore the limitations of my body.

Some of you will know that I’m wearing bright pink today, or purple, or red, so that hopefully the people around me won’t notice the pained look in my eyes.  Some of you will know that the awkward or slightly limping gait with which I am walking is from sitting too long, or the strained expressions as I execute the extremely difficult manoeuvre of getting out of a chair is from nerves shooting pain signals around my body.  Some of you will know that I’ve constantly got more pharmaceuticals in my system than should be allowed for short blondes, or for operating machinery or for consuming alcohol.  Some of you will know these things but then will politely refrain from mentioning it, because you know that I really don’t want to talk about it.  Some of you will know that I am not really the surly bitch that my facial expressions might indicate, that it is just the strain of keeping my shit to myself all the time.

What very few of you know is just how much fucking effort it takes to keep myself upright and functioning, each and every day.  Very few of you know that I have not slept for more than five or six hours any night for the last six years.  Very few of you know that I am in so much pain that I take freezing cold showers in the middle of the night, to feel something other than pain.  Very few of you know that I am habitually just one tiny unexpected inconvenience from tears, as I constantly channel all my energy into ignoring my pain, leaving very little energy for dealing with ‘other people’s shit’.  Very few of you know how many times I have wanted to step off the planet and cease to live this painful existence.  Very few of you know how dark the dark times really are, and how little real joy there is in a life filled with pain with no hope of reprieve.

What this self centred, egotistical, callous, and downright malicious cretin of a man, who made this hideously inappropriate and ignorant comment about ME, after barely four hours acquaintance, will NEVER know is just how desperately I want to march right up to him, right now, and tell him like it is.  Tell him how horrid it is living in this traitorous body that gives me nothing but pain and heartache.  Tell him what it is like to be constantly medicated to the point where your own recollections of the days events are notoriously unreliable.  Tell him what it is like to be absolutely bone weary exhausted and yet be unable to sleep because the pain keeps you awake.  Tell him what it is like to be afraid of picking up a fucking electric jug in the kitchen or reach down to pet the puppy, without steeling yourself against potentially painful spasms that could last all day.  Tell him what it is like to have your first and foremost thought of every minute of every day be how much pain your body is experiencing.

Instead, I am just sitting here, asking myself why the fuck do I even go to such extraordinary efforts and measures to keep my chronically painful self TO MYSELF, if intellectually challenged individuals like this ignorant simpleton are going to judge me like this?

Just because I am not crying does not mean I am not in pain.
Just because I am not wearing a cast or a brace, does not mean I am not hurting.
Just because I am forcing a smile onto my face does not mean I am at ease.
Just because I am laughing and participating does not mean my body is pain free.

What it does mean, you narcissistic, brain dead, self-important, insensitive, chicken fucking dimwit… is that I have had over twenty years experience in dealing with MY pain.  And I choose not to inflict MY pain on everyone else’s life by constantly forcing others to acknowledge its existence.  Just because MY body and MY life is full of pain – day in and day out – doesn’t mean that the lives of those around me need be constantly likewise reminded and affected by MY pain.  The fact that I don’t seem like I am in pain is a sign of MY achievements, in managing and mitigating MY painful circumstances, hiding MY no-longer obvious distress at being in pain, managing to attempt going about MY life as best I can.

What you can really take away from this, is that MY PAIN HAS NOTHING TO DO WITH YOU, and I work my arse off to make sure it stays that way.

SO STOP BEING A FUCKING CUNT AND MIND YOUR OWN BUSINESS.stop being a cunt