Things I Miss Most Because of Fibromyalgia

Inspired by Toni Bernhard, J.D. in Turning Straw Into Gold…What do you miss most because of FM problems?

As Toni said: I’m trying to keep a non-complaining tone as I write.

Complaining does no good, so this is how I see my life in a realistic and factual manner.

1. Spontaneity

chronic comic 175Just like Toni, it is my guess is that this is #1 on most of your lists.  But this works both ways: sometimes you have to painstakingly plan everything so you don’t over-do it (yes, pacing!). And even then, you might be having a bad day and all that planning goes down the drain.

But, if you’re lucky, you may wake up feeling horrible (what? you say) so you ditch all the plans for the day…then, suddenly, in the afternoon, you begin to feel better so you go for a walk and get a chance to slowly window shop and appreciate your local area – something you just haven’t had time to do before.

2. Variety

As you know, I live alone. Most of my days are pretty much the same, all the time; unless some-one I know cares to visit or take me somewhere outside the 10km area zone that I am restricted to because it hurts to drive further. I tend to see the same people every day: there’s the hairdresser who calls me in for a coffee each time I pass her shop, there’s the guy who works in the bottle shop (near the supermarket) who takes a cigarette break with me each time I go shopping, there’s the florist who waves to me as I pass her store and gives me great discounts, there are all the ladies in the post office who always ask if it’s a good or bad day…and care.

Hey! Hold on…those aren’t such bad things; in fact, it makes my city living feel like a little village, and I would never have met these people if I hadn’t have gotten sick.

3. Being actively involved in the life of my family

I'd really like a girl!

I’d really like a girl!

My family now has 5 children under 7 (and another one on the way) and it hurts being in the same room with all of them sometimes.

But, if I was well/cured and working, I wouldn’t get to see them anywhere near as much. I wouldn’t be able to baby-sit or have one of them sleep over during the week, or do creative activities during school holidays.

4. Socialising

When I think about it, I didn’t really do much socialising when I was studying or working – I was too busy. I had some invitations (not too many) and yes, they have dried up now…but, really, not much has changed in that department.

5. The ability to pursue my former interests

I can no longer play squash with my father (but my father and I are no longer on speaking terms anymore, so that may have happened anyway!)

I used to love to read…and I still love to read, except that, by the time I have read 4 pages, I fall asleep.

I used to love spending a whole day shopping with my Mommy…mainly just looking – now I can only last 2 hours at most. Buy Mommy is not so well, either so outrageously long shopping trips would have been out of the question anyway.

6. Health not being the topic of conversation

64. More to meEven when (or maybe especially when) I’m not in the room, the conversation turns to my health. Am I looking good? Am I getting better? Why can’t I go back to work? Isn’t there something I can do?

I don’t want to be the centre of attention – at least, not for this ‘achievement.’

So, really, I don’t miss any of these things – what I really miss is the CHOICE: the choice to be spontaneous, the choice to re-introduce variety into my life, the choice to spend more time with my family, the choice to go to the local pub and meet new people, the choice to find new interests, the choice to stand out for something other than my weird condition; and the choice to be anybody I want.

What do you miss?

Toni Bernhard is the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their CaregiversBottom of Form
Her new book, How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrowis available for pre-order and will be released in September.

Passed Over!

Tonight was the second night of Passover* so I’ve had a busy couple of days…with way too much over-stimulation.

Recently, millions of grasshopper-like insects swarmed Egypt, damaging crops and wreaking agricultural havoc.

The timing of this massive infestation of locusts, just three weeks before Passover, seems positively biblical!

The story of Passover tells how God hardened Pharaoh’s heart and then punished him for his stubborn refusal to let the Israelites go free. The 10 plagues were a divine demonstration of power and displeasure designed to persuade Pharaoh to allow the people to leave.


This locust infestation is reminiscent of the eighth plague that struck the Egyptians in the Passover story.

It doesn’t seem fair to have punished Pharaoh – wasn’t his refusal merely a result of God hardening Pharaoh’s heart?

Yet maybe we can learn a valuable lesson from this.

Often we may think that it is impossible to break a bad habit, to kick an addiction, or to introduce a healthy practice into our lives.

We justify our behaviour by saying “it’s been so long since I [fill in the blank]…”

We feel that we are trapped by the fact that we have always done things a certain way. We don’t believe that healthy changes are even possible.

In response to this attitude, we read about the plagues and about Moses’ warnings to Pharaoh.

Yes, it is true that God hardened Pharaoh’s heart. BUT, Pharaoh always had the ability to overcome his hardened heart.

This may have required a herculean effort, but it was still possible to make amends and avoid the punishments.

Pharaoh was guilty of choosing NOT to struggle. He was guilty of choosing to continue his destructive path and hide behind his past pattern of cruelty. It is that conscious choice for which he was found culpable and for which he was punished.

So, within the plagues lies a very powerful message for all of us struggling with FM.

No matter how strong or negative our feelings are, we don’t have to be trapped by them.

With the right tools, the appropriate support, and a deep resolve we CAN help ourselves (even if it takes a herculean effort!).


* Passover (Hebrew: Pesach) commemorates the story of the Israelites’ departure from ancient Egypt, which appears in the Hebrew Bible’s books of Exodus, Numbers and Deuteronomy, among other texts. We start the festival with two nights of traditional meals known as seders where we retell the story of the Exodus – lots of singing, talking, and even, fighting.

10 Things You Must Give Up to Move Forward

Hoping that you’re all over any New Year flares and starting on beginning 2013 renewed, strong and positive. In keeping with resolutions and goals, here’s a list of things you must be willing to give up to move forward…

chronic comic 172#1 Letting the opinions of others control your life

  • It’s not what others think, it’s what you think about yourself that counts
  • You have to do exactly what’s best for you and your life, not what’s best for everyone else

#2 The shame of past failures

  • Your past does not equal your future
  • All that matters is what you do right now

#3 Being indecisive about what you want

  • You will never leave where you are until you decide where you would rather be
  • Make a decision to figure out what you want, and then pursue it passionately

105. ignore#4 Procrastinating on the goals that matter to you

  • There are two primary choices in life; to accept conditions as they exist, or accept the responsibility for changing them
  • The best time to plant a tree is twenty years ago. The second best time is NOW

#5 Choosing to do nothing

  • You don’t get to choose how you are going to die, or when.
  • You can only decide how you are going to live, right now.
  • Every day is a new chance to choose.

#6 Your need to be right

  • Aim for success, but never give up your right to be wrong
  • Because when you do, you will also lose your ability to learn new things and move forward with your life

#7 Running from problems that should be fixed

  • Stop running!
  • Face these issues, fix the problems, communicate, appreciate, forgive and LOVE the people in your life who deserve it

#8 Making excuses rather than decisions

  • Most long-term failures are the outcome of people who make excuses instead of decisions

73. miserable#9 Overlooking the positive points in your life

  • What you see often depends entirely on what you’re looking for
  • You will have a hard time ever being happy if you aren’t thankful for the good things in your life right now

#10 Not appreciating the present moment

  • Too often we try to accomplish something big without realising that the greatest part of life is made up of the little things