Thursday, June 23, 2011

You Want Me To Set A What?

It has been told to many a Fibro patient to set a routine. The body responds best to routine. Go to bed at the same time every night, wake up at the same time every morning. A fundamental of "sleep hygiene". Set specific times in your day to exercise, rest, work, be active and be still. And many a Fibro patient have laughed long and hard at that one! Plenty with Fibromyalgia are complete and total victim to the illness. There is very little rhyme or reason or predictability about Fibromyalgia, excepting that it just plain wrecks your life. So gaining control of it, understanding the responses and precursors your body signals, takes a huge amount of hard work and the proper health care. But when you are exhausted and in pain and barely able to function, losing ground in the workplace and/or homelife in big ways, a huge amount of hard work is exactly what you don't have in you. And if I don't know what I am going to feel like from day to day, to the point that I cannot work or attend school or accomplish my responsibilities with much regularity, how in the world am I supposed to set a routine?

I can tell you I personally am mid-way between free-fall and routine. And it has taken me about 3 months to reach this middle. Three months of waking up every morning and promising myself I am dedicated to sticking to this routine. And then physically sticking to it. About a month ago it finally stuck. I work my own hours at my home-based business, The Fibromyalgia Crusade. And I am housewife-in-residence. My husband earns the bacon and I cook it, clean it, wash it, dry it, pay it, balance it, vacuum it and put it away. I groom my own dogs and die my own hair and paint my own toenails. Every luxury has been delicately and hopefully "put away" for a while, I can only hope and pray.  This leaves me with plenty to do but as you can see my schedule is extremely flexible. I don't have to clock-in at a certain time to do a job I am barely able to do. I don't have children to be fed and ready for school at a specific hour. So when I flare, and feel awful and in a horrible mood and am exhausted and can't sleep, I can push through it or indulge it without a world of consequence in other people's lives raining down around my head. And it has taken me 3 month to kinda get here.

But it does help. It helps with the anxiety of knowing what is going to get done when. And it takes a tremendous amount of self-discipline, at least for me. Being in tune with your health and body is extremely important, too. And very hard to achieve. For me walking with intermittent fast bursts and yoga 4 days a week help balance my unbalanced and totally screwed up musculoskeletal system. And I can usually sleep. But committing to a schedule and then pushing through to achieve that commitment can often lead to horrible flares that can last a long time. Once again I think we have to come back to balance, yin yang. If you are so sick your illness controls your life, I personally would do anything and everything I could to flip that control. And then set out to expect a routine. I have spent many Monday's swearing to myself this week was going to be different. And by Tuesday night I am in a flare so bad there is no different anywhere around. Ask questions and seek answers my friends. So many of us have pushed ourselves until we have collapsed. Emotionally, physically, psychologically. You are really sick and need to have your symptoms managed. I guess then, and only then, would expecting a routine make any logical sense. At least to me.

Thanks for joining,


  1. I was diagnosed with fibromyalgia a year ago. I cannot begin to set some sort of a routine, but I have tried over and over. After reading your post I know that I am not alone, but it is so exhausting just thinking about it! I still haven't any sort of rhythm in my life, I try though and will keep on trying. I finally am going to see a pain management doctor and hopefully will get better care and tips on better managing this terrible illness. Thank goodness for your blog, I admire you and your strength. Thank you for sharing with us!

  2. Be careful with the Pain Management Drs, sometimes they throw meds at you just to shut you up, and in the end the meds do little except mask our various aches, & pains, and in most cases make the fog worse! The problem with fibro seems to me that each of us have different symptoms, and no two days are the same! I have been in this visious circle of bad flare, good day, then over-do, then back to bad flare. I try to pace myself and not over-do, but until I stop and try to be still, then comes the pain and oops! I've overdone it again!