One of the few consistencies of fibromyalgia and chronic fatigue syndrome is inconsistency. We never know from day to day how we’re going to feel, and that means planning can be difficult or impossible.
A recent comment here put it perfectly. Lisa B wrote:
“I live in a world of Maybes.
Maybe I can go to your party.
Maybe I can do this photoshoot.
Maybe I will get well one day.
Maybe I can clean my house today.”
-Lisa B
The “maybes” make it hard for us to maintain a job, a social life, relationships, you name it. Even scheduling something simple like a parent-teacher conference can be stressful — will I be able to make it? Will I be able to present myself well? Will I be able to have an intelligent conversation and remember what was said? Same goes for doctor’s appointments, parties, family functions, lunch with a friend, etc. I have all the sympathy in the world for those of you who have to go on job interviews or make presentations to clients — even thinking about it makes me a little panicky.
What I’ve had to do, first, is accept that sometimes I will need to cancel plans. The alternative is not making them at all, which means I’m giving up on a lot of things I want to be part of my life. Sometimes I feel like a flake, and other people might think that I am, but the times that I can make it are worth that risk.
Second, I try to be as open about my health problems as possible. If people know I have limitations, they won’t expect as much from me and they’ll understand when I say I just can’t do something. And quite frankly, if they’re not willing to cut me that slack, they’re not worth my time anyway.
Third, I definitely agree with a recent commenter who wrote:
“I learn to gravitate toward those that have health problems like myself.” -Kristi
I have a good friend with a severe form of arthritis. We both understand that plans are always contingent on how we’re feeling, and we spend a lot of time just sitting around talking (frequently with ice packs, heating pads, etc. on both of us!) It really does help to have at least one other person in your life who has physical limitations. If you don’t have someone like that, try local support groups or (if you’re up to it) an arthritis/fibromyalgia aquatic exercise class. If those options aren’t possible, try connecting with people online, like in a forum — you can form strong relationships without having to get dressed or leave the house.
What has helped you deal with the “maybes” inflicted by your health? What have your challenges been? How have you tackled them? Leave a comment below!
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A Life of “Maybe” With Fibromyalgia & Chronic Fatigue Syndrome originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Saturday, February 6th, 2010 at 06:00:14.
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