Stick to what you know & keep your advice to yourself

 

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Straight from my fridge to the ears of all self-proclaimed experts

Take one huge ego, mix with an immense lack of medical knowledge and, voila, you are now an expert on any and every chronic condition around.

Unfortunately, chronic lifers are used to receiving unsolicited advice from those who know nothing about their condition yet claim to have a magical cure that no one else, not even the medical profession, has heard of.  Most of us ignore such ridiculous advice and move on.  In this case, no damage has been done.  Other than to our friends who have to listen as we vent our frustrations about being accosted by yet another self-proclaimed expert.

The opportunity for damage does arise however, when these medicine men preach their drivel to the vulnerable.  So many of us have been in that position before.  Having visited countless health professionals, undergone a myriad of tests and attempted unsuccessful after unsuccessful treatment or, worse yet, been told there is no treatment available, you become desperate.  At this point, anyone who says they can help may just become the beacon of hope you have been looking for.

This week in Australia, we have a chef doling out advice on osteoporosis.  Granted, said chef was actually asked for his opinion on the subject but instead of reminding the questioner that he is in fact an expert in how to prepare food, not its medical benefits in those with a chronic illness, he went straight ahead and told her to remove all dairy from her diet.  Yes, you read that correctly.

So, for all of us who have had to listen to stupid advice on how to manage our chronic condition, take a look at the glory that is Dr Brad Robinson in the ultimate stick-to-what-you-know smack down of the week.

Dear Pete Evans, I presume you have forgotten (silly you!) so please allow me to remind you. You are a chef, NOT a doctor. Further, you are not someone who magically knows things that the sum total of generations of medical research has determined. You do not have access to information that we uneducated doctors do not. Your astounding advice about osteoporosis would be amusing if it wasn’t so potentially damaging to anyone at risk who actually believed you. Even worse, your advice to the user of an anti-cholesterol medication to cease its use is – through an increased risk of stroke and heart attack if your advice were followed – potentially deadly. Can we make a deal? You don’t give medical advice and I won’t tell you how to best shuck oysters. Agreed? Regards, Dr Brad

Glorious, isn’t it.

No more excuses.  The real reason I’m cancelling our plans. 

I have made up so many excuses as to why I need to cancel plans with friends over the years that I don’t even know where to begin. There’s the always believable “I completely forgot I promised mum…”, the no one can argue with “I’ve got to finish this before work tomorrow”, or even the old “I feel like I’m coming down the flu”.  All of these are completely acceptable reasons why one would need to bail on a social occasion.

Today I was supposed to be having an afternoon park catch up with a girlfriend.  This was to be the first time my girlfriend met my newborn and is something I had been looking forward to all week.  Unfortunately, my pain levels had been increasing all week and yesterday started what I was concerned might be a flare.  As it turns out, I was right about.  So, this morning I sent off a text explaining that I would have to cancel due to a fibro flare.  A little while later I got back a lovely text starting with “I’m so sorry you’re unwell, that really sucks! Absolutely understand about cancelling today.”

With that simple message two things ran through my mind.  One, I am so grateful to have such beautiful, understanding friends. And two, I am so glad I no longer have to lie about why I can’t do something.  I hate to think of how much time I have wasted over the years trying to come up with a believable excuse to cancel on a friend and then even more time fretting about whether I would be exposed as the awful, no good lier I knew I was.

Maybe I wasn’t giving my friends the benefit of the doubt.  Maybe, given the opportunity, they would have understood.  But how could they understand when I myself didn’t?  You see, for years, I had no idea why I was in so much pain that I would have to cancel dinner.  I had no idea why, yet again, I was so tired I couldn’t get off the couch to make it out for coffee.  And I certainly had no idea why I wanted to crawl into bed and never leave the house again.

It may seem like a little thing, texting a girlfriend that you’re having a fibro flare, but the fact that I could do that – text the truth – is amazing.  Not only because it means that I now know what that truth is, but also because it means I am lucky enough to be surrounded by people who have made it their business to understand what that truth means and who support me in living with that truth every day.

How do you go communicating with others about your condition?

Fibromyalgia + pregnancy = It can be done

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Trying his best to stay on my lap despite the large baby bump pushing him out of the way

PART 2: How fibromyalgia prepared me for pregnancy

A couple of weeks ago, I wrote about my concerns regarding how my body would react if I became pregnant.  Unfortunately, it seemed the medical profession was once again lost at sea when it came to giving advice on this subject.  And, as I stated in Part 1, my fiance and I wanted a baby.  So armed with the knowledge that my fibro could stay the same, or get worse, or potentially *fingers crossed* go into remission while pregnant, we realised the only thing we could do was move forward and deal with whatever my body was going to throw at us.

Sitting here now at 35 weeks pregnant, I can gladly report that two things have become abundantly clear over the last 8 months. The first is that my body has in fact played relatively nicely thus far.  The second is that having fibromyalgia actually prepared me quite well for many of the changes that pregnancy brings.

1. Fibro playing nice?

Yes, it’s true. Despite my earlier beliefs on the subject, it turns out that my body and my fibromyalgia can actually play nice sometimes.  While I certainty haven’t gone into remission, being pregnant has helped maintain my pain at a more consistent, stable level.

Take for example my legs.  Or more precisely my knees, the bane of my existence since one fateful day (10 January 1997 to be exact) when they decided that 14 years of service was enough.  More doctor, physio, podiatrist and specialist visits than I could ever recall as well as more surgeries than I care to recall and they still refuse to play nice.  One thing they do appreciate is a daily walk.  Given a thirty minute walk every morning (okay, okay, 5 mornings a week) they generally agree to behave themselves – aka maintain a consistent pain level and only rise if I overwork them in other areas such as standing, stairs, exposing them to cold temps etc etc.

Anyway, despite still sounding like temperamental toddlers, while I maintained this schedule my knees continued to hold up their side of the bargain.  Give the walking away for 3 or more days and my knees would remind me of the strength of their wrath in no uncertain terms.  I must say this arrangement worked well for all concerned until the dreaded morning sickness kicked in.  Small aside – I don’t know who came up with the term “morning sickness” but it was clearly not someone who has ever been afflicted by it.  Something along the lines of The 24 Hour a Day, 7 Day a Week Never Ending Worst Hangover Not Even Your Scariest Nightmare Could Imagine seems much more appropriate.  And so, somewhere amongst the nausea and the dizziness and the vomiting and the vomiting and the vomiting, my walking routine was flushed down the toilet along with the dry crackers, the apple cider vinegar and every other home remedy my fiance desperately thrust upon me in the hope of curing my “morning sickness”.

Somewhere around 3 to 4 weeks after the onset of the aforementioned vomiting, my knees realised they had not been taken out for their usual morning strolls.  Usually this kind of neglect would call for a full blown mutiny on the part of said knees.  The union would have been notified and a stop work action instituted before the end of week 1.  This time around however, no such measures were taken.  The only consequence for my failure to uphold my end of the bargain was a slight increase in pain, 3 weeks after the fact.  Huzzah!

2. I’ve already got this

The second thing that soon became clear is that having fibromyalgia prepared me for pregnancy in ways those without chronic pain could not understand.  Because of this I have been better able to manage the side effects that come along with pregnancy much easier than other expectant mothers I have spoken to.  

Just a few of the fun extras that generally come hand in hand with pregnancy are a changing body, pain, fatigue and insomnia.  Really pregnancy, is that all you’ve got?  Let’s break these down.

  • Changing body:  When you gain 12 kg (26 lbs) within a few months of being diagnosed with fibro, you quickly learn to deal with your body issues.  As someone who had never really struggled to loose weight, this new body and its limitations took some getting used to.  As did my changed feelings towards my body and its effect on my self esteem.  I eventually lost the extra weight but not before realising (being expressly told by my pain specialist) that (1) the extra weight did not really matter and (2) loosing the extra weight should not be my immediate priority.
  • Pain: Well, come on now, this has to be the easiest side effect of pregnancy for someone with chronic pain to manage.  In my case, I’d been dealing with chronic pain for 23 years before I became pregnant.  Yes, some of the pain caused by pregnancy is different to what I am used to (e.g. piriformis syndrome) but the tools needed to manage that pain are the same.  Those tools are something most expectant mothers have to learn as they progress through their pregnancy and 9 months is such a short amount of time in which to do this.  Me on the other hand, I came to this pregnancy with the necessary pain management tools already in use.
  • Fatigue: “You don’t know what the word tired means until you’ve been pregnant.” “Tired doesn’t even begin to describe it.”  At first I was surprised to hear phrases like this from women who know I have fibromyalgia but I guess it just shows how little they know about the condition.  Yes, pregnancy does bring with it fatigue, not simple tiredness but the I’m sitting on the toilet at work, my eyes are closed, I can’t open them, I can’t get up, I know there’s only 1 hour to go but can’t make it through kind of fatigue.  But this kind of fatigue is nothing knew to a person with chronic pain.  It’s something we deal with on a daily basis.  In fact, at its worst, this kind of fatigue can render a person with chronic pain bed bound for weeks, months, even years at a time.
  • Insomnia: Pregnant women call it insomnia because they are unable to sleep.  Those with chronic pain call it painsomnia because we are unable to sleep due to the level of pain we are experiencing at the time.  I have gone months on end of waking at 2am courtesy of the pain in my legs, back, neck, jaw (take your pick!) and being unable to get back to sleep despite trying every trick in the medical books.

So there you have it, the fibromyalgia girls guide to pregnancy (hey, that sounds like the title to my first best selling book!).  If you have fibromyalgia or another form of chronic pain and are thinking about pregnancy I can’t tell you how your body will react.  What I can tell you however is that I was already prepared for so many of the symptoms/side effects that pregnancy brings as I have been managing them for years.

Oh and who could forget baby brain?  Only someone who already has fibro fog I guess! 

Come on body, make up your mind

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My little companion is a great hot water bottle for the knees

If there is one thing my entire body can generally agree on it is that cold weather is the devil.  My knees are always the first to be altered to a lowering of the mercury with the rest of my joints not far behind. As a result, I have been known to utter the words “I hate winter” on more than one occasion.  This year however, things have changed.

The first difference is I am pregnant.  And as anyone who has ever been pregnant can tell you, pregnancy and heat do not make for happy partners.  At 33 weeks pregnant with what my obstetrician is already calling a “chubby baby”, it feels like I have a chubby baby sized hot water bottle strapped to me 24/7.  Add to that the second difference, a summer that, until recently, showed no signs of ending and you have got yourself one very uncomfortable lady.  The sweating, oh the sweating!

Just this week however, Mother Nature woke up from her 3 month slumber, realised she had completely missed autumn and that it is now supposed to be winter.  And so for the first time ever, I welcomed the cooler weather with open arms.  My body on the other hand, is a little confused.  This morning I woke up to my leg bones screaming out in agony “why oh why did you not cover us with more blankets last night?!?”  While at the same time, my upper half was letting me know that the blanket situation was a little over the top by sweating up a storm.

Is this a weird side effect of pregnancy plus fibro?  Or is this simply another weird side effect of fibro that I am only now lucky enough to experience?  I’d love to know if anyone else has this problem.

Fibromyalgia + pregnancy = ?

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Would I ever have the chance to complain about being unable to see my own feet?

Part 1: Chronic illness + pregnancy.  Can it be done?  If so, what am I in for? 

These are the questions that started whirling around my head when I was first diagnosed with fibromyalgia just over 2 1/2 years ago now.  Actually, if I’m being 100% truthful, when I was first diagnosed I thought my dream of one day being a mum was going to remain just that, a dream.  You see I was single at the time and could not imagine finding a partner who would willingly sign up to the chronic life.  Actually, I couldn’t imagine being well enough to one day throw myself back into the dating world again, let alone explain my condition, let alone find a partner, let alone ….you get the picture.

My pain specialist tells me I tend to catastrophise, look way past the present into the future and see catastrophe ahead rather than focusing on what is actually happening in the here and now.  What can I say, the man knows me well.  But in this instance, I know my fears were not irrational as they were also held by my parents and friends (or so they told me much later down the track, at the time they made some very convincing “you have nothing to worry about” speeches).

As it turns out, I did have nothing to worry about.  Only 8 months after being diagnosed and starting treatment, I met my now fiance.  A wonderful man who went into our relationship with his eyes wide open to the realities of my condition. So, babies.

When I was first diagnosed my GP put me in contact with another of his patients who has fibromyalgia.  Although I felt odd phoning her up, “so, you’ve got this odd illness no one’s ever heard of, I might have it too, what can you tell me?”  I am so glad I did.  She was a lovely, open woman who shared a little of her journey with me, assured me that, with the correct treatment, things can and do get better and explained what her day to day life is like now.  One thing I never expected to learn was that, since her diagnoses, she had gone on to have a child.  Even more interesting was the fact that her symptoms had gone into a kind of remission while she was pregnant.

My GP was quick to remind me that everyone is different and just because one person had a great experience with pregnancy did not mean every woman with the same condition would.  In some cases, the symptoms would stay the same or, worse case scenario, increase.  As the idea of pregnancy was, at this stage, just that, a very far away idea, I put it aside for the time being.

A little while down the track and pregnancy was no longer a far away dream, it was becoming a potential reality.  Would I be like my GP’s patient?  Would my body decide to play nice for once?  I tentatively started Googling ‘fibromyalia and pregnancy’ but, as I did not want to completely scare myself out of the idea, I read only a few articles.  From what I did read it seemed like my GP was right.  Some women spoke of feeling the best they ever have, some felt their fibro symptoms remained the same while others mentioned phrases like “pure hell”.  (Okay, maybe not that exact phrase but that’s the gist I took away).

What to do when Google Doctor fails?  Visit an actual real life doctor.  Armed with very little knowledge, I visited my pain specialist and an obstetrician hoping to become more informed about what I might be in for.  As it turns out however, Google Doctor had not failed me.  Both specialists explained that very little is known about the interaction between fibro and pregnancy although they had seen women whose symptoms got better, those whose symptoms stayed the same and others whose symptoms increased during pregnancy.  Hmm…

So, there I was.  Armed with the most up to date medical information (it’s a guessing game!), it was time to make a decision.  But, let’s face it, my fiance and I wanted a baby, we were going to make it happen, we just had to be prepared to deal with whatever my body was going to throw at us.

Part 2, the realities of being 33 weeks pregnant with fibro – coming soon.

Just Like Everyone Else

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The bump!  (My fiance is a Kiwi)

Today I visited a new physiotherapist.  I am always weary about seeing a new medical professional, wondering if they will take the time to listen and understand my condition.  Or whether they will race through the medical history section of the appointment and automatically pigeonhole me as a complainer/hypochondriac/one of those patients.  So, it was with a little trepidation that I made my way to the new physio’s office (which by the way, was up 2 flights of stairs!).

My reason for visiting was pregnancy related.  Have I mentioned that I’m pregnant?  Well, I am!  26 weeks tomorrow in fact.  So far everything has been going well.  Before falling pregnant I was worried about how my body would respond but I actually think the fibro prepared me well for a lot of the symptoms that come along with pregnancy, but that’s a whole other post.  Today, we’re focusing on the physio.

To date, I’ve been pretty positive at each of my OB appointments.  “My legs and back are sore, but I’m sure that just the fibro.”  “I’m really tired, but that comes with the fibro.”  You get the drift.  Until my last appointment.  I did not have the energy to be upbeat so I let it all out.  “I think my fibro’s getting worse.  I can’t sleep at night, I’m in too much pain.  I can’t lie on one side for too long because of the pain in my hip and legs.  I’m tossing and turning all night…. The other day I got out of the car and couldn’t walk properly.” 

After listening to me intently, my OB recommended a couple of things that might help, including seeing a pregnancy physiotherapist.  I was cautious about going to a new physio who did not know me or my history but the OB explained that this physio works at the hospital I will be having my baby and would see me after the birth.  Well, I thought, if I’m going to see her then, she might as well get to know me now.

With that in mind, I walked into the new physio’s office and laid it all out on the table.  Much to my delight, the physio was lovely.  She listened carefully to my history (with a few “wow” and “you’ve certainly been through a lot”‘s  thrown in) before explaining that she was in no way an expert in my main conditions, but she would take a look at me from a pregnancy stand point and see if there was anything she would offer me.  After a thorough examination, the physio explained what is causing my current, new pain (tight butt muscles!  AKA piriformis syndrome) and that, wait for it, said that this is very common in pregnant women.  Apparently, three quarters of the women in her prenatal classes complain of this pain.

And, just like that, I am just like everyone else.  After decades of “I haven’t seen a case this bad” and “I don’t know how to help you” I finally received a “you’re just like everyone else”.  Who would have thought?

Doctor’s need to start listening to our children

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Multi-tasking 14 year old. Trying to fish, look cool in my Mighty Ducks cap AND keep my kneecaps taped in place all at the same time.

Last weekend I came across the story of 17 year old Canadian, Ophelia Brown. Ophelia has complex regional pain syndrome (CRPS) and is awaiting admission to Ottawa Hospital’s pain clinic.

Ophelia’s story touched me for a number of reasons, not least of all because I remember what it was like to be a young child, and later teenager, in pain.  Ophelia’s pain started at the age of 9 however, it would take 5 years for doctors to correctly  diagnose her CRPS.  And still, she awaits acceptance into a program that could help her manage her condition.

As an accident prone child, pain was always a part of life.  From bruise covered legs, scraped knees, torn ankle ligaments and sprained wrists; you name it, I’d done it.  My parents’ bathroom cabinet was over flowing with different types of bandages, slings, sports tape, splints (both store bought and home made).  I’m sure they wished the doctor’s surgery had a frequent flyer program for hiring crutches.  By the time they gave in and bought a pair when I was 16 the entire family could have traveled the world first class.

It was at the age of 10 however, that pain would become a permanent, chronic, fixture in my life.  Don’t get me wrong, I was still in for my fair share of acute pain incidents but it was when my jaw decided to pack it in at the age of 10 that I would first be introduced to the world of chronic pain.  Not that anybody used those words “chronic pain” of course.  It wouldn’t be for another 21 years that doctors would use that term to describe my condition and finally explain to me the difference in managing acute and chronic pain.

Why did it take so long to find help?  Why did my body need to go through so much before answers were forthcoming?  Why did I need to endure so much pain?  I have asked myself these questions so many times and, the majority of those times I have avoided answering them for fear that I, myself, contributed to the problem.  Was I not pushy enough with my doctors?  Did I not explain myself and my condition appropriately?  Did I give up on the medical profession too easily?

I don’t have the answers to those questions and, realistically, they don’t matter.  That is in the past.  I now have a diagnoses, a treatment plan and an amazing group of medical professionals that I can call on when needed.  One thing I do know however, and one thing that concerns me for those who come after me, is that my age definitely had a role to play in my 21 year wait.

Being only a child when pain became a chronic part of my life meant that I was unable to advocate for myself.   The one thing I had going for me were my parents.  In particular, my mum who was right by my side every step of the way, at every appointment, fighting for my voice to be heard.  Unfortunately, when a mother speaks up all so many health professionals hear are the words of an overly concerned mother hen.  They aren’t listening to a patient’s story, they are hearing an exaggerated version of events.  Or so they believe.

Was age a factor in the 5 year delay to diagnose Ophelia’s CRPS?  That, I don’t know.  What I do know is that we need to start listening to our children.  No actually, doctors need to start listening to our children and to their parents.  As an adult, my fiancé is by my side and has a pretty good idea what I go through on a daily basis.  But still, as an adult, I don’t dwell on my symptoms (generally), I don’t explain how and what I am feeling 24/7.  I just get on with it.

It’s because of this that my fiancé can’t understand as fully as the parents of a child in pain.  Children, especially children who don’t understand what is happening to their bodies, speak up.  They complain, they try desperately to explain what is happening because, maybe just maybe, if I tell her what is wrong, she will be able to fix it.  Maybe, just maybe, if she understands the pain I am in, she will be able to take it away.

This is why doctors need to start listening to our children and to their parents, their greatest advocates.

Children can, and do, suffer from pain.  Real pain that needs real answers.  Real treatment.  Like the treatment Ophelia could receive at Ottawa Hospital’s pain clinic.  Here’s hoping she does, soon.