Make Plans, Cancel Plans, Repeat

Make Plans, Cancel Plans, Repeat
4.9
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One of the most challenging aspects of life with fibromyalgia is the speed with which my health can deteriorate.

I can awaken in the morning feeling capable of going somewhere, finishing a long overdue project, or inviting guests to my home. But by the time invitations have been issued or preparations made, I often don’t feel as well as I did earlier. When the actual event occurs, I wish I’d never planned it. (I’m visualizing many fibro readers nodding their heads in acknowledgment.)

When I think about it, this is the story of a fibromyalgia life: feel fine, make plans, feel bad, cancel plans, repeat. Adding to the challenge (not only for me, but also for any others involved) is that the time between planning and canceling can be several months (as in the lead time for purchasing concert tickets or making travel plans) or several hours (as in inviting someone for dinner in the morning and canceling that afternoon) or just minutes (the time between telling a friend it’s OK to come pick me up and the time she pulls into my driveway). 

Does this happen every time? Of course not! Just often enough that the thought of making a plan of any kind is downright stressful. And that in itself can bring on the very symptoms that prevent me from participating in the things I want to do. The decision becomes how badly do I want to do this thing? Badly enough to suffer the consequences if and when I need to cancel?

Those consequences are many and varied. Often they involve money. In the case of airline travel, it could be lots of money. Or it could be another person’s feelings. No one likes to be inconvenienced, and I hate appearing to be rude.

Here’s a fibro hint: Making plans with a group is less stressful than making plans with one other person. In case of cancellation, your physical symptoms quickly neutralize your own disappointment, and the rest of the group can go without you, relieving you of any guilt you might have felt.

Last-minute cancellations are particularly difficult for me. Therefore, if I have any doubt whatsoever, I’ll say I can’t go. It’s so much easier to make an excuse over the phone than to someone who shows up at my door.

The problem with a last-minute “no” is that it can be interpreted by others as disinterest or even rudeness. The result is that on the next occasion, an invitation might not come. Over time, isolation can occur, leaving me more time to think about my symptoms.

Given how destructive this is, maintaining an active social life is a necessity for me. It requires lots of pretending — to feel fine when I don’t and to be interested in upcoming events when my only interest is lying down.

Since the pandemic began, none of this has been necessary. And yes, it has been a relief. But I, like the rest of the world, am ready for life to resume, at least to some level of normalcy. However, unlike the rest of the world, I’m having a bit of angst about it as well. Am I ready to resume the stress of saying “yes” when I know that days, hours, and even minutes later I may need to say “no”

A part of me avoids danger at all costs. That part is content to live the partial life that other people have been living for the past several months. But my more adventurous side says, “If I don’t try I can’t succeed.” That’s the part that pushes me to make plans for the future, regardless of whether or not I’ll need to cancel. 

Yes, maybe my life will be full of cancellations. Or maybe I will experience fun and excitement, create wonderful memories, and meet new and interesting people. Many things are possible — but only if I try. 

Making plans is riskier for a person with fibromyalgia than it is for other people. But life is a risk. Even the healthiest among us is subject to being hit by a bus when crossing the street. So, I’m willing to take some risks. And if making a cancellation does become necessary, who is more experienced with making one than I am?

***

Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.

Diagnosed in 1990, Christine has experienced fibromyalgia (FM) symptoms since childhood. After a career in aerospace finance she was trained as an FM support group leader by the Arthritis Foundation and participated in groups on both the east and west coasts. Designated a Leader Against Pain by the National Fibromyalgia Association (NFA) she advocated for increased funding and awareness for FM. She is the author of “More Than Tender Points: A Fibromyalgia Memoir,” available on Amazon. An Upstate New York transplant now living in Southern California, she credits the sunshine for improving her symptoms.
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Diagnosed in 1990, Christine has experienced fibromyalgia (FM) symptoms since childhood. After a career in aerospace finance she was trained as an FM support group leader by the Arthritis Foundation and participated in groups on both the east and west coasts. Designated a Leader Against Pain by the National Fibromyalgia Association (NFA) she advocated for increased funding and awareness for FM. She is the author of “More Than Tender Points: A Fibromyalgia Memoir,” available on Amazon. An Upstate New York transplant now living in Southern California, she credits the sunshine for improving her symptoms.
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5 comments

  1. Kristi Jogis says:

    Yes, Vicki I totally agree! Unfortunately certain family members have little interest in learning about my illness. Disappointing to say the least!

  2. 10/13/20.
    This is spot on! In years past I’ve explained to family, and certain very good friends, that the possibility of me canceling at the last minute is high! My Fibro weakness is how long it takes for my body to wake up each day. Generally it is around 2 hours. So, when I have plans or appointments, I set the alarm a minimum of two hours before I have to leave the house.

    I recently joined a dating site and have had to give thought to what and when I tell a new person about my underlying condition so they won’t think I’m blowing them off if I cancel a date at the last moment. There are still many people who don’t know much about Fibro and it kind of confuses them when I explain what’s going on with me, especially when I look fine and what I’m saying doesn’t make sense to them.

  3. caroline boucher says:

    i found this article very apt at describing how we feel as we try togo about our daily toil . . o ften say id like a pain -stiffness dial on my forehead so people can see what going on in my body . why even contemplating going upstairs to get maybe a new item of clothing to show someone is very hard to even contenplate as i keep my upstairs activities to just going to the toilet . people dont get i they look at you like you cant go upstairs to get that nww dress your bragging about mmmm shes nuts or it does not exist lol every movement to do something involves pain and stiffness likened to running a marathon next day pin in limbs . and all i e done is get up shower dress and arrive downstairs exhausted . well you all know the scipt . kind regards caroline

    • Christine Lynch says:

      Caroline:
      Thank you for taking the time to comment about my column. It is so gratifying for me to know that my words are reaching people who have the same issues that I have. I also faced the challenge of stairs in my home. Many nights I slept on the couch rather than go upstairs to bed. Eventually, we sold the house and bought a ranch style house instead. I’m grateful every day for having everything on one floor. It’s very difficult for so-called “normal” people to understand how much pain and fatigue can affect our fibromyalgia lives. I hope you’ll keep reading and know that there is at least one person (me) who understands the challenges you face.

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