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When you have a chronic illness like fibromyalgia and chronic fatigue syndrome, it's important to take care of yourself and stick to the things that make you feel better. At the same time, that's a lot harder than it sounds.
How well you stick to treatments and other management strategies is called your self efficacy. I generally have good self efficacy. However, during the hard times -- flares of fibro or Hashimoto's, especially bad insomnia, injuries, passing illnesses, stressful periods -- my self efficacy can go right out the window.
I also have better self efficacy in some areas than in others. For instance, I'm great about taking my meds and supplements, I'm less consistent about eating right, and I'm downright negligent when it comes to exercise.
Research shows that people with fibromyalgia fare much better when they have good self efficacy. You can read more about that here: Essential Coping Skills.
What areas of self efficacy do you struggle with? Which ones are you good about? Take the poll, and leave your comments below!
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My “other” is I always brush everything off as “just my fibromyalgia,” which I know is bad since it can mask other health problems as it is. I also never go and get a yearly physical. Something I should work on!
I struggle with everything. I keep thinking this is only temporary and I’ll eventually be better. I’ve been on disability since 2007. Maybe I’m in denial? The thing that drives me nuts is that I know if I cleaned up my diet and avoid the foods that I’m intolerant of…which is a long list…I’d feel better. I know that if I’d exercise I’d feel better. I know if I followed through with the practices I learned from the book “How To Be Sick” and meditated or practiced yoga I’d feel better.
So why don’t I do these things???
Kathy, your comment really touched me. I do not write w/answers, only with some thoughts. Just so you know I have been on disability since 2006 and am going through a very rough spot right now on all fronts and hence, this is the lens through which I write.
When certain steps actually do make you feel better, there is a tendency to continue. The “shoulds” and beating oneself up is something we have a tendency to do but it further depletes us. That is a long list of shoulds and quite overwhelming. Just because “they say” that you will feel better doesn’t mean that you will. Sometimes you may even feel worse. We are all different.
I am now working with my doctor, but also this time decided to try yoga/meditation in addition. The yoga/meditation is on my terms. Only restorative — because I have nothing to give. No exertion. Only acceptance and non-judgement. And the agreement is to give it enough of a chance to see if it works for me. One step, one day at a time.
Living with this syndrome is a struggle everyday.
I was around the age of 50 and menopausal. My sleep started to be disturbed by vivid lucid dreams. My legs began to hurt so much after walking only a few yards, and I suddenly became so fatigued I could hardly think. Of course my doctor put it all down to the menopause, yet I knew women didn’t fall apart at 50! The aches and pains began to occur all over my body. Some days I felt sore all over. I was finally diagnosed with F.M. 10 years later. Now, after trials and tribulations with many and various treatments and pain killers (not!), I have found relief with Pregabalin and Tramadol with Aspirin/Caffeine. I have found that Tai Chi is most beneficial for gentle stretching and exercise, along with true relaxation which relieves tension in the muscles and the mind. I feel so much better and more in control today, at the age of 63, that I am enjoying a younger lover after 15 yrs of celibacy. Says it all really!
My “other” is the cost of staying healthy. The treatments that I find work the best for me are poorly covered by my health insurance with BC/BS. My out of pocket expenses this year will top $5000. Chiropractic care and acupuncture contribute a lot to my staying healthy. I see a CAM doctor to get my Rx for Low Dose Naltrexone. The drug is not expensive, but the doctor is out of network. If I were to lose my job, and not be able to afford to priortize my health care expenditures like I do, I’d be destined for disability. The FDA drugs and Western doctors did nothing to improve my quality of health.
It’s definitely expensive and maybe I’m cynical, but I think insurers go out of their way to dodge their responsibilities when it comes to fibro.
To answer Adrienne’s original question, I probably struggle most with diet and exercise.
I “fight” with my condition. Seven years and I still grieve the loss of “me”. Lack of acceptance prevents me from embracing life as it is and constantly attempting to live life as it use to be.
Oh Adrienne, you could be describing me as well. It’s so hard to take care of myself when I have fibro, Hashimoto’s, ME, or a celiac flare (I get so sick with the celiac thing that if I’m “poisoned”, my diet and exercise go out the window for 6 months. Ugh.)
One thing I’m getting a little better about is I tend to let my socializing slide when I’m flaring. I’ll let myself stew alone in my apartment for far too many days. I always feel better when I pick up the phone and call someone. Even a little chat can bring up my mood and inspire me to just a bit better self-care.
And Ginny, I hear you about the costs of care. I have to pay for LDN and Armour thyroid, because I have such bad reactions to mainstream pharmaceuticals. How I wish I could afford a massage every week! I’m just squeaking by on Medicare, though.
I completely resonate with this. I personally resent having to pay for Armour Thyroid, when my insurance will only cover the phony thyroid meds that put money in the pockets of the big drug companies.
I have been doing better since getting completely off the wheat, but I can only wonder about how much damage was done by al the years I was eating gluten.