I don’t like to discuss my limitations, do you? It feels restrictive and confining to put what I can’t do into words. I’d much rather hop into topics such as options, opportunities, and healing. But understanding our limitations can help to develop a healthy respect for our personal experiences related to our fibromyalgia symptoms.
Here’s an example.
Years ago, a large tree branch fell on my car in a windstorm. The repairs took a couple of weeks and I ended up with a loaner. The rental car was brand spanking new and the agency employee gushed about how lucky I was.
I drove away to run a few errands and noticed the spread of a dull headache within the hour. I attributed it to the super warm day. Later, I felt sort of dizzy, fuzzy, and fatigued. By day’s end, I was nauseous and cranky to boot.
I went to bed early that night feeling somewhat better the next day. I was grateful that the fogginess and “tight” feeling in my head began to lift. Being on a tight writing deadline, I was glad I felt better since I had some major book edits to finish.
A few days later, I drove off to an appointment that was about an hour away. Within just a few minutes, I felt as if I’d been hit by a wrecking ball of dizziness, brain pain, and exhaustion. The “new car smell” was absolutely nauseating. I felt as if my head were stuck inside a dry cleaning bag.
My appointment was mandatory, so I rolled down all the windows (even on the freeway) and got there feeling frazzled. I arrived with both my hair and stomach in knots. I dreaded the drive home.
Then it dawned on me, even if everyone else thinks a new car is a great thing … it’s not good for ME. I decided to drive straight to the rental agency and demand a different car. And, that’s what I did – except for the straight part.
You see, the fumes even messed with my cognitive abilities. In my meeting, I felt distracted, confused, and had trouble making decisions. Afterward, on my way to the rental agency, I got lost. Massively lost. Even in a completely familiar part of town, I couldn’t get my bearings. I just wanted to get away from the smell. I wanted OUT. Driving in circles, (this was before Google Maps on my cell phone), I finally arrived by default. Then ….
Everyone there thought I was nuts. Was I really requesting an older car? When I made the switch, I did a sniff test to make sure my replacement car wasn’t new, hadn’t been used by a smoker, and didn’t have any offensive and stinky air fresheners. It took several days afterward to detox and recover. The headache lingered for nearly a week. On the upside, this time of forced rest provided me with ample opportunity to assess the situation.
You see, I knew that some smells bothered me more than others. I’m super-sensitive to chemicals in scented candles, room fresheners, detergents, perfumes, smoke, pesticides, herbicides, paints, lacquers, solvents, and more. But I didn’t respect my own boundaries. I thought, “I can tough it out for a few days.”
Have you ever felt that way?
We fibrofolk are sensitive souls. We’re sensitive to many things including lights, smells, touch, foods, sounds, and more. Learning this helps us to develop awareness and respect for our own space and circumstances. When we define an offending smell, environment, or experience, we can begin to protect ourselves from it.
An offensive smell is one thing, but have you ever noticed an increase in symptoms from specific activities or even from specific people? I’m often told by clients that certain work situations send their fight or flight responses into overdrive. The same is true for certain colleagues, neighbors, family members, or friends.
We can’t always choose who we spend time with, but we can choose how we let them affect us. It takes a bit of awareness and pre-planning. Planning ahead gives us a sense of empowerment. If we know that someone is likely to get on our last nerve, we can minimize exposure to the person, invite others to join in (creating a buffer), or avoid the activity all together. If it can’t be avoided, then we do our best.
Just as Spiderman develops his Spidey sense, those of us with fibromyalgia develop our Fibro Sense (well, maybe not “just as”). By increasing our awareness, we begin to see how we’re bothered by differing things. That hyper-awareness can be self-preservation in action.
How Desire Plays a Role in What We Choose to Do
Years ago, I was approached by a man who sold carpet to a company that I worked for. He said that he felt his wife was “faking it” when it came to her fibromyalgia symptoms. Of course, I bristled at his assessment, but it definitely got my attention. He went on to explain that she had a hard time getting out of bed in the morning, and that she needed help from family and friends to care for their young children. He understood that, but then explained that her all-time favorite activity (before fibro) was dirt bike riding. It required a lot of stamina and focus to ride over bumpy and dusty terrain.
After her diagnosis, she didn’t participate in this activity often, but sometimes, she’d go out with friends and spend a weekend riding “desert toys” and having a blast. He was always irritated to hear that she was the first one up in the morning, geared up and ready to go.
I guess he had a point.
But, it’s not that simple, is it?
I asked him how she felt when she came back. Upon reflection, he said that she was a complete chatterbox when we first got home, but then was wiped out for about a week afterward.
I told him what I often say about my personal fibromyalgia limitations: I can do whatever I want to do. I just have to decide if paying for it afterward is worth it.
And, for his wife, the tradeoff was worth it.
For me, a day at Disneyland with my kids and grandkids is worth it. A shopping day at a large mall for high school dance dress with my granddaughter is worth it. For you, the circumstances may be different, but the point is the same. Desire goes a long way toward mitigating our symptom payback. I don’t like to set myself up by assuming that my symptoms will increase afterward (sometimes they do and sometimes they don’t), but I do plan in advance. I choose whether or not to participate based on my self-awareness and desire to participate.
Now that you have a better idea of how awareness – in advance – can help you to define your personalized limitations, here are the Three Levels of Fibromyalgia Limitations, as I see them. Your specifics may differ, but the categories are likely similar.
This is the level where you’ve learned (usually the hard way) that some activity, event, or possibly an ingredient is simply not healthy for you. You’ve tried to mitigate or compromise with this offensive element, but find that it’s simply best to avoid it or stay away all together. This often relates to toxic things such as foods, chemicals, and even toxic relationships.
There are not usually exceptions to this level of limitation.
This level applies to activities or events that usually bother you enough that you decide to “just say no.” For me, an example of this is evening meetings. I find that they typically take more from me than they give. I feel quite drained the next day, and it’s just not worth it, unless there is a great need for me to attend.
There are seldom – but sometimes – exceptions to this level of limitation.
This level applies to activities, events, or relationships that you find are tolerable when you’re feeling well, but they try your patience (or energy reserves) at other times. You get to choose when to apply your Level 3 Limitation rule. You get to base your decision on how you feel at the time.
Exceptions to this level of limitation are assessed on a day-to-day basis.
How Would You Rate Your Levels of Limitations?
Now that you’ve been made aware of the connection between awareness, desire, and your personal fibromyalgia limitations, how will you plan your activities in advance? Will you review your options with an eye toward preserving your energy levels and avoiding symptom flares?
Within the confines of your own experience, you get to choose what environment surrounds you.
By assessing your personal fibromyalgia limitations, you become better-equipped to protect your own boundaries. Apply self-care in liberal doses to your daily activities to ensure a smooth path toward your health goals!
Sue Ingebretson (www.RebuildingWellness.com) is an author, speaker, certified holistic health care practitioner and the director of program development for the Fibromyalgia and Chronic Pain Center at California State University, Fullerton. She is also a Patient Advocate/Fibromyalgia Expert for the Alliance Health website and a Fibromyalgia editor for the ProHealth website community.
Her #1 Amazon best-selling chronic illness book, FibroWHYalgia, details her own journey from chronic illness to chronic wellness. She is also the creator of the FibroFrog™– a therapeutic stress-relieving tool which provides powerful healing benefits with fun and whimsy.
Would you like to find out more about the effects of STRESS on your body? Download Sue's free Is Stress Making You Sick? guide and discover your own Stress Profile by taking the surveys provided in this detailed 23-page report.