Blog Classic: Nov. 9, 2008 (Updated)
Some days, I just don't have the energy to do much of anything. (If you have fibromyalgia or chronic fatigue syndrome, I'm guessing you know what I mean.) Those aren't my favorite days by any means, but in some ways they're the simplest to deal with -- just lay on the couch and take it easy. On days when I do have more energy, I have other things to contend with.
First, there's motivation. It can be easy to confuse energy and motivation, but they're very different animals. Energy gives you the ability to do something, whereas motivation gives you the desire. Some days, I have the energy to clean the kitchen or do some laundry, but I have trouble mustering the motivation. These are the days when I chide myself for being lazy, then have to remind myself that this lack of motivation is part of my fibromyalgia (thanks to low norepinephrine), just like the lack of energy. And some days, I have all the motivation in the world (you know -- the times when the dirty dishes make you crazy), but I just don't have the energy.
On those lovely days when I have both the energy and the motivation to get some things done, I'm usually confronted by my stamina -- or rather, lack thereof. At some point, my energy will drop off suddenly, or I'll start having pains from over doing it. And where to I end up then? Back on the couch, taking it easy.
I've gotten enough better that I've had far more energy and motivation this summer than I've had in years. So now I'm learning my body's other limits, which I'd lost touch with while dealing with low energy and motivation. It's hard, but I'm trying to take it slow, recognize my boundaries, and begin to expand them ever-so-slightly. It all comes down to pacing.
What pacing techniques work for you? Have you been able to regain some of your functionality through pacing? Leave your comments below!
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I know where you’re coming from, that is the plain truth, but no one understands which leads to dispair….
I was just in a very controlled environment for 3 months and was interested in the effect this could have on my stamina. Could I increase my walking distance little by little when I had total control over my energy expenditure? No cleaning, no cooking,no household duties to suck up my energy.
Result? No increase in stamina.No capacity for improvement.
Balance is my mantra. I have the motivation to get things done but lack of energy, strength and brainfog rule. If I do one bathroom cleaning that day- it’s enough. I’ve learned to let things go. Life will go on if dishes are left unwashed overnight. Pace yourself and you will find less time on the sofa. I’m at work now- pushing too hard but have 2 days to recover. Unfortunately overexertion malaise (the term for it) hits me 2-3 days later usually. Does anyone sweat enought to soak their hair, drip down their face from their ears and forehead and not sweat anywhere else after just a brief amount of work? Also acupunture and herbs “Shen Qu De Bu Wan” are a great help. Find someone who works with a real pharmacist so that there are no drug interactions. I drink a tea with herbs 2x a day and also found Bioteem spray helps the Lyrica dry mouth issue.
In response to Linda’s question – ? – statement – ? I can’t remember what it was about now. You see what this thing does to your brain! I thought I had a good answer but now can’t even remember the question.
Anyway, about endurance. I live in the Phoenix area, and in the summertime it’s all about getting up at dawn and getting done what absolutely has to be done – then taking a siesta for the rest of the day. Since I’ve been on psychotropic medications (am now on Celexa and Klonopin), I usually wake up – not all the time – feeling OK enough to do the “have-to’s”. I have a daily schedule laid out for the week and am usually able to complete the tasks. My “want-to’s” are all sedentary things. Don’t do any floors or dusting – just can’t hack it endurance-wise. Am sick for the next 2-3 days. Have to hire it done – maybe once every few months – along with the laundry. I don’t even see the dirt anymore. When I was younger and dating, the guys were all such slobs that I finally just got used to dirt! (Isn’t that terrible? But it’s now working in my favor! God has a purpose for everything, doesn’t he?) I keep the dishes washed, the garbage out, and the litter box clean. Everything else can just wait.
Now, I think I remember what Linda asked – does any of us sweat with just a little exertion? Yes, my dear, grossly. That’s another reason I don’t want to exert; I just can’t take the sweat, usually from my head and hair. I get my hair washed at Great Clips for $3 – can’t beat that! It’s too exhausting to do it myself. If you’re on any medications, they may add to the sweating problem; I know mine do.
Even if I had the stamina to “do more” or exercise (even simple walking) I would flare up into tendinitis. I know this because I have tried many times to find an exercise that I can tolerate without having these problems. Everyone says swimming is best, which I’m sure it probably is but it is not that easy to fine a decent indoor pool that is convenient and affordable. Curious if anyone else has the tendinitis problem?
just when I think that I have all the symptoms that I can handle you mention another and I realize Bingo I have that too. I studied maths at university and now i have such a spacial problem – parking etc – and cannot remember a whole phone number, but have to dial number by number. grrrr I also have lack of motivation and thought that I am just being lazy. i now have a cleaner twice a month but do the little things as I go along. your advice and that of your readers always helps. thanks everyone.
You know, I go through all of what you guys have stated. It’s a roller coaster and unfortunately the days when I have the energy & motivation are far and few between ~ stamina doesn’t count because when I do have that I pay for it for a week afterwards! lol! I’ve learned that just because I can doesn’t mean I should!
I tell you what though, I’m so thankful I have joints and muscles to hurt, so many people aren’t so fortunate. I’m thankful for the 30 year old bed I sleep on which only makes me hurt more, so many don’t have the luxury of a bed at all. I’m thankful for the dirty old house ~ it means I have a home to come to, a husband who loves me and dogs who don’t care the carpet is full of their hair!
It’s my attitude that gets me by. I know God has blessed me with SO much, this little bit of suffering I cannot blow up to be something that defines me, I WILL not become a martyr for Fibro ~ how obsurd when I think of the sacrifice and suffering of Christ. Please understand this is MY perspective. I don’t understand Grace, but I know it’s been provided to me and is provided to be daily. Today I will just enough of what I need to get through the day. I will hurt, I will get tired, I will feel blah, I will even feel some guilt for what I’ve not done (of which I will get over!) but I will always remind myself of what I DO have and thank God for that every day.
I can’t believe how perfect your words are. Thanks for making it so clear, i’m sending your message to my husband and close friends so that they will hopefully get some understanding from them.
I can say that I’m all flared up right now due to stress, which caused my Epstein Barr virus to run rampant again. It just takes over, the whole cause of my F/CF. I see a specialist for my issues, and trying through medicine to get my EB back under control.
Sometimes it can all be so depressing as in the last 2 weeks I’ve had to cancel out on several outings. And, one time in particular I cancelled due to lack of motivation. Thanks for mentioning that. Sometimes I just feel like a lazy person, but what you said really made me feel better. Thanks for sharing
A little ‘hello’ to Julie & Leigh.I was diagnosed with fibro & RA. Shortly after, came the Hep C diagnosis.The very best way for me to go thru each day is to PRAISE GOD and give HIM thanks. GOD truly does inhabit the praises of HIS people, and gives us the strength to go through each day , every day I can day! I can see,hear, breathe, love, speak! I praise you GOD , your mercies are new every morning! I thank you that I have food, shelter, clothing .You are THE KING of KINGS and the LORD of LORDS! I feel better! Now, it’s naptime! Bye Bye! *o* <yawn… ~,~ <nice !