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.
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  1. Actually, when I boil down the things I can think of to a theme, it would be similar to what you posted, THE CHOICE. But, some of what I miss, I never really had. My fibro causes a lot of restrictions on my life, but it is my interstitial cystitis that is the real doozer. It restricts being able to go places and do a lot of things because of the regular need for the bathroom. But, even as a kid, without the pain, I still had to go to the bathroom an aweful lot, so it is hard for me to even conceive of having ever had the freedom to be far from a toilet.

  2. Things I miss are sex without my partner thinking he’s hurting me, walking my dog without crying when I return, mountain climbing (can’t do that now anyway since I’m on oxygen…) Going places with/for my kids like my sons band concerts. I think the thing I miss the most is work.

    There are so many things I’ve gained since this crap started like the ability to homeschool my son, the chance to be here for my husband while he’s been ill, taking care of my mother after her mastectomy and just being WITH my family, watching my kids grow up into the men they are….

    I wouldn’t change a thing. If this is what I have to do to pay for what I want, I’ll embrace the pain and go right on being me!

  3. I really don’t have anything intelligent to add, just that I agree and that I really love your posts. I hate that we have this condition, but I’m glad we’re not all alone…

  4. The one thing I miss more than anything is my motorbike. I used to absolutely love riding and going to bike festivals. Every time I hear the rumble of a Harley now I feel really sad, but I’m very grateful that I was once well enough to do these things, and that I have some awesome memories from that time 🙂

    I also really miss being able to plan ahead, especially when it comes to seeing friends. If I end up not being well enough to see them, they always take it personally, so now I never make arrangements – I can’t face letting them down and feeling really disappointed myself – I’m just very grateful for the internet and all of the lovely people online, who are in the same boat and understand! xx

  5. After over a year of all sorts of testing and blood work I’ve just been diagnosed this past winter. This fibro crap knocks me on my ass all the time. Bi just haven’t figured out a way to cope. It sux.

Got an opinion?