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Adrienne Dellwo

Managing Expectations with Fibromyalgia & Chronic Fatigue Syndrome

By December 13, 2013

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You'd be hard pressed to find someone with a debilitating illness like fibromyalgia and chronic fatigue syndrome who hasn't been disappointed, time and again, by what they're able to do. Whether it's job performance, a vacation, elaborate Christmas plans, or workout goals, we've all found ourselves unable to fulfill some of our own expectations about ourselves.

This Thanksgiving, I had a horrible sore throat and a 103-degree fever. I couldn't do any cooking, and I couldn't attend the big family dinner. That was the third illness to put me in bed since school started in September. Last week, I was supposed to help decorate at my daughter's school and had to cancel at the last minute because I was, once again, sick. (Thank you, immune suppressants!)

I haven't been on immune suppressants for all that long, but before that something else would come along and knock me down every so often, and before that something else. I've had to accept that I can't always expect the best-case scenario.

It took me a while to accept that, but I've learned that before acceptance, all you get is a sore head from beating it against the wall. I've seen it with myself and with scores of other people over the years: you can have constant anger and frustration, or you can learn to manage your expectations.

Don't think I'm saying it's easy! It's an enormous thing, and harder for some than others. I know my husband still battles too-high expectations of how much of my slack he can pick up when I go down. All it does is cause stress, and you know stress is not your friend!

I'm really goal oriented, and something that helps me is setting a multi-tiered goal: I identify the ideal, the pretty good, and the minimally acceptable, and then, as my health waxes and wanes, I regularly reevaluate as to which of those levels is realistic. I've learned to say no when I have to, when to call for help, and when to throw in the towel.

You may think that accepting your limitations is giving up and letting your illness win. I get that feeling, believe me. Here's an example of finding acceptance vs. giving up:

When I got too tired to fight against my illness any longer, it meant having to give up a lot - including my career. However, my mind set was, "Okay, I can't do that, but what can I do?" I never quit learning about my conditions and looking for things that would help. That's allowed me to steadily improve and regain a lot of functionality.

Compare that to someone close to me, who got knocked down by a similar illness and said, "I just have to accept that I'm going to be like this forever." She went to bed and quit trying, refused to educate herself, and refused to try new treatments because the first ones failed. She gave up, and it's done her no favors.

Acceptance is the place between bashing your head against the wall and giving up on your life. It's the first step toward facing your illness realistically, which is crucial for getting better. You can learn more about that here: Acceptance for Managing Your Illness.

Do you struggle with expecting too much of yourself? Have you worked toward acceptance? What helped? Leave your comments below!

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Comments
December 13, 2013 at 6:25 pm
(1) Sharon Pavnica says:

This particular article really resonates with me. After Moreland 13 years of learning how to deal with limitation (for the most part), I have a doctor I trust and a medication regimen that is helpful. My husband has had to take on a lot of tasks that we used to share (we don’t have any children, but we do have two dogs that we love and they really brighten my days. He still proposes things for to do or try in hopes that there really is something that will prove to be THE magic solution. I sometimes struggle with guilt because I don’t share this outlook. Your definition of acceptance is perfect and I will share it with my husband and anyone else who want to push me in a direction that is futile. He means well because he knows what I have had to give up. I know he didn’t expect our lives to take a turn like this, and I certainly didn’t see it coming!

Thank you, Adrienne, for your compassionate advice. I wish you a wonderful Christmas with your loved ones and friends

December 13, 2013 at 8:50 pm
(2) Shakota says:

As always, a timely post. Lately severe leg cramps (knotted legs from a trigger point?) have kept me home and then too much pain med led to nausea (fun, let me tell you) for 4 days. Then fatigue for several days.

Fibro is so weird, so unpredictable. And yet I make out a to-do list each day that is so nice and intricate but useless.

So, at least for now I am not making any list that is in effect for more than the next hour or two—and subject to revision!

I am no longer volunteering to bring anything, or say I’ll show up because, who knows? It’s really living in the moment.

Thanks for all your posts and the opportunities to share thoughts. A calm low stress season to all.

December 13, 2013 at 10:29 pm
(3) Esther Siebert says:

In my view, your friend is not in acceptance. It sounds like she is living in resignation and hopelessness.

For me, acceptance is a positive, peaceful place to be and is practiced in the moment. It feels good to stop fighting for “what I want” ie my ego-centric self-will and choose to live in reality. What is real is what is true and I don’t have to fight it anymore. As Byron Katie says in what she calls “The Work,” you can fight what is real as much as you want and you’ll only lose 100% of the time.

I’ve spent years and tons of energy fighting reality, being angry, resentful and upset cause I’m not getting what I want, mainly to be well. If I stay in the present moment, and accept each moment as it is, I can be happy instead of miserable. Do I do it perfectly? Of course not. But I always end up going back into acceptance because fighting reality is just too damn painful.

Because acceptance is a present moment practice, it is nothing like resignation and hopelessness. So it allows me to advocate for our cause
and do everything I can to take care of myself. I’m very excited right now because a case report of my dramatic improvement from the daily use of Xifaxan is going to be presented at the first ever SIBO Symposium being held in mid-January in Portland. I was able to put that together and I hope my experience will help many more patients.

December 13, 2013 at 11:24 pm
(4) Abot Bensussen says:

Just seems that every little cold I get, turns into some awful, viral, long term beast that needs anti-biotics and bed rest to quell. It’s bad enough that fibromyalgia causes me to miss most of the things I like to do, these constant viruses really ruin my activities.

Do you think we are more vulnerable to illness? Does fibromyalgia make our immune systems too weak? I’ve had flu shots every year, and take very good care of myself, I just can’t seem to stay reasonably well. It’s a bore, and yes, disappointment is a big part of the package in chronic illness. Missed college, Pilates, and Bible class this week alone. Who knows when I’ll get up and out again?

December 14, 2013 at 12:23 am
(5) Rachael says:

I have learned to accept who I am and who I was born to be. I believe going against the grain of who I was greatly contributed to my development of my autoimmune/neuroimmune illness ME/CFS. Stress because of biophysical reasons (brain chemistry/structure) has a greater effect on me than on the vast majority of people. I was born more sensitive like many others who became sick with ME/CFS. Sensitive to stress, sensitive to alcohol, sensitive to extreme exercise, sensitive to chemicals; much more sensitive than the average person to almost everything. I cannot change this; I was born this way. I am now at home looking after my family; being creative; not forcing myself to work in a business type career that clearly was not suitable for my artistic, nurturing personality and I move along in life at my own pace.

I am fortunate that I am in a position that my husband’s income is sufficient for us to live quite comfortably. I know many of you are not this lucky and are forced not only to deal with a debilitating illness, but must go outside the home to work. Sometimes, this work is not a glamorous career, but just a job to make end’s meet. In today’s world two incomes are now usually a necessity. My heart goes out to all of you in this position who have to work while coping with this horrible illness. Pushing yourself beyond your personal limits and draining yourself to the point of exhaustion will unfortunately only worsen ME/CFS.

December 14, 2013 at 1:07 am
(6) Rachael says:

cont. We live in a society that values overachievers. It dictates that we all must be success driven and have the ability to live life at a frantic pace. When success is based on what you do, how much you do, and how much money you make life can become very hard on those born with a quieter nature. As I have grown older, I have learned to accept that I was not born to be like the Donald Trumps of the world, anymore than than they were meant to be like me. I am proud of who I am; my qualities; my talents. I no longer strive to be something that I am not; I don’t go against the grain of who I am, or try to change things about myself that are inborn.. I live each day of my life with this illness ME/CFS. Though my condition is somewhat under contol, I will never again try to push myself beyond my own personal limits.

December 14, 2013 at 11:00 am
(7) Barbara Diamond says:

This is a question for Esther Siebert. Could you tell me more about your dramatic improvement from the daily use of Xifaxan? This is the first I’ve heard of it.

December 15, 2013 at 12:59 pm
(8) Becky Terrell says:

Wow, what an accomplishment Esther, you go girl!

I’m still a work in progress. I have not learned acceptance yet, but I’m trying.

As if Fibro and Chronic Fatigue aren’t enough, the associated illnesses really kick my butt. I’m currently battling through an episode of IBS, enough already!

I live with a friend of many years, who also has Fibro, but not CMS or any associated illnesses. She is able to do a good bit more than I can and we both get frustrated by that. After an outing, she rests for one day, but it takes me 2 or 3 days to recover.

Acceptance is definitely about learning to take one day at a time and do your best that day. If your best is bed rest, so be it.

A Happy Holiday to all, don’t overdo it so you’ll be able to enjoy it!

December 15, 2013 at 3:25 pm
(9) Dr. K says:

It is with tremendous sympathy that I write this comment because I see patients like each of the respondents on a daily basis. Patients who have been on a rollercoaster with their health and the medications they take to try and smooth out the ride.
I must admit, I am also writing this comment and shaking my head in disbelief and anger. Please don’t think me dispassionate about your situation. I know the system within which you are trying to regain your health and it is faulty. But you see, the patients I mentioned above had had enough of just managing their illness, managing their expectations, lowering the bar. I know that at some point in your life that may seem like the only reasonable answer. It is not!
Step 1: Be open to thinking outside the medical/insurance model of healthcare. It is not promotion of health, it is disease management. If you keep adding meds and are not getting healthier, why would you add more?
Step 2: Remember this tenant: “Any body can heal itself given the right environment.” Are you honestly providing your body with a healthy environment? Can you pronounce the names of all the ingredients you put in your body?
Step 3: Enough with diplomacy, get a practitioner who asks “Why” not one who is only concerned with “What.” You know your immune system is shot, but why is that so?
Look for a practitioner who understands the delicate balance and beautiful interconnectedness of all the systems of your body.
I wish good health in the coming year and for years to come.

December 15, 2013 at 9:20 pm
(10) mary says:

i really fine it hard to cope i fine im weaker then iwas my legs dont wont to carry me that bother me have you got any idea how to cope with that

December 17, 2013 at 4:18 pm
(11) CT Yankee in the UK says:

There are a couple of things that help me to manage my expectations and accept my situation:

1) Keeping a journal is a good way to spot trends / patterns between my activity levels / events and my health. It enables me to see my progress over time.

2) Remembering that I could have been born in a part of the world where there is little or no chance to get a basic education or where one meal a day or war is the norm helps me to keep a balanced perspective. I may not be able to do all that I did before, but I am thankful for what I do still have what I can still do.

December 18, 2013 at 6:42 am
(12) shosh says:

the acceptance does not depend on me. my family just do not accept the fibro and expect far more from me than I can give. so I just accept that and do what I can when I can. very frustrating.

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