Wednesday, April 20, 2011

Do You Feel What I Feel?

As told to people who do not live with fibromyalgia:

Picture a typical day in suburbia: you wake up, eat, shower, get dressed, go to work, eat lunch, work and grab a cup of joe for the commute home. You make dinner, eat, clear away dishes and settle down for a quiet evening. Maybe you'll take a jog or a walk. You go to bed and easily fall into a restful sleep. Your routine has become, well ... so routine that you could do it in your sleep. It's the same with fibromites. Our days, too, are so routine that we could do it in our sleep. The difference is that we are sleeping through our routines. But if it's bed time, we are wide awake. In the morning, we wake up ... but we don't necessarily get up. The following is a description of a person with fibromyalgia and how they might spend their day. See if you can spot the difference.

After wrangling the headboard for leverage and assistance in getting out of bed, breakfast is next on the agenda. Just so you know...  if we started getting ready at the same time, you'd be well on your way to work by the time I sat down to eat. Oh, I forgot to mention how long it takes to shuffle to the toilet and back, with morning stiffness. Add an extra 10 minutes.

Personal grooming is considered by some to be a pleasurable experience. I used to be one of those people. I adored spending time in the bathroom with pretty bottles of lotions and creams. Happiness was languishing in a scented bubble bath with soft music and candles. But the stark reality of coping with unmanaged fibromyalgia means living with frequent bouts of fatigue. I realize this sounds gross but I've gone without bathing for much longer than my 'best before' date. To be honest, I don't have the endurance to stand up in the shower. I've tried using a plastic chair to sit on but found it cumbersome and using it made me feel like Grandma Moses. Instead, I've devised my own way of conserving energy: I simply sit down. My shower is big enough to allow me to sit comfortably cross-legged and I have found that I have more flexibility in the shower. Once I get in there, it's quite lovely feeling the water stream over me, like a waterfall. Now that I'm all nice and clean, I must be roaring to start the day, right?  Not so fast. Truth be told, I'm worn out from showering, dressing and getting myself together. I'm ready for a lie-down and the last thing I want to do is get up from my bed. I have experimented with this and found that I can conserve energy by taking short rests in between the various aspects of my 'toilette'. For example, I find it helps not to blow dry my hair as soon as I have towelled off. Spread things out.

If you're too tired to comb your hair, then attempting to properly feed yourself  (let alone a family) becomes a major hurdle. It's easy to get caught in a Catch-22 situation. You know you should be eating fresh homemade nutritous food, but you're drop-dead tired and end up eating whatever is easy and convenient. It's no surprise that dinner is usually store bought or frozen and full of preservatives - not at all what a person with so many sensitivities should be stuffing into their gob. It's a vicious cycle.

I can have several good days in a row. When this happens I run around as if I have rockets in my pockets. My objective is to accomplish as much as humanly possible before total system failure stops me in my tracks. The quiet, almost inaudible voice of experience whispers to me, urging me to slow down. Do I listen? Rarely, and by then it's too late. Like a fool, I've already trespassed onto the Highway to the Danger Zone. I'm well on my way to a major malfunction. This is a self-defeating pattern that too many fibromites follow. We push ourselves past our limits should a small window of opportunity present itself. Then, we pay for it in spades by spending even more time in bed than if we'd just paced ourselves in the first place. Duh. For every 2 or 3 good days we have (over) indulged in, inevitably we find ourselves exhausted and a bed junkie once again. Maybe we're violating a universal law, Murphy's law, martial law or even Jude Law for all I know. I'm not really sure.

I've covered sleeping, eating and bathing patterns for people with and without fibromyalgia. Were you able to find the differences?  If you still can't comprehend the daily pain and fatigue of a person with fibro, try the following exercise: get four 10-lb. weights and strap them onto your legs and arms. Not so easy to get around now, is it? With limbs that feel like sand bags, you're no longer zippity-do-dahing through the day. But hold on, you're not finished yet. The following exercise is recommended for the most stubborn of skeptics: the fibromite will need a pair of boxing gloves and a person that needs convincing that fibro is oh so real. Tip: the use of a mutally agreed upon safe word is optional. With the nay sayer's consent, have at it. *Pound, punch as hard as you can taking care to punish every major muscle group. Pummel the joints at your discretion. When the beating is finished, it is imperative to deprive the person of sleep for as long as possible. Repeat if necessary. In a few days time, check in with the non-believer. Politely ask how they are coping with the weighted limbs, muscle pain and sleep deprivation. Be a sport and try not to gloat when you hear their answer. This sounds harsh but for the Doubting Thomases in our midst it vividly depicts how it feels to live with chronic pain. They should consider it a lesson in tough love that they are fortunate enough to walk away from.

* Please do not attempt this. I am against violence in all forms. And I was kidding!



  1. are so on the money! I feel it is so worth it to have the chance to enter the "danger zone" so I can have the "feeling of accomplishment" for just that one day......I have to seize the moment any chance I get. I know I will pay, should slow down....pace myself....but beyond the pain and lack of energy and exhaustion.......the thing I miss the most is feeling I have accomplished something helps me to feel worthy, like I have contributed......I use to take such pride in it........put in a full day....make a nice dinner for my the extra things to show love for my family and mind, body and spirit.

  2. Hi,

    I hear you. I am (or was)quite a list maker. I still have 'to do' lists, only with smaller, doable goals. I miss the days when I could juggle errands, the kids, grocery shop, make dinner, and on and on. Now if I make dinner or grocery shop on separate days, I'm fortunate!

    Thanks for posting.

  3. Hi Cathy, I can relate to everything you have written, including the bathing part. I use to love getting up in the morning and taking my time getting ready for the day ahead. I loved the whole shopping experience finding the cute clothes and matching accessories for my work life, especially loved finding a good bargain...which takes time and energy to accomplish. Today, if I feel I have enough energy to get ready to go out and run errands, I usually feel pretty exhausted by the time I get out the door. I will typically find that as the day progresses my list becomes shorter and shorter because I am just too tired to finish it. Some days, by the time my son and I make it to the "good" shopping areas( 30 minutes away)I am so tired I will find myself asking my son "I wonder what's playing at the theatre?

    Thanks for taking the time to write all the interesting posts. It gives me something to look forward to. =)

  4. Hi

    I'm glad you enjoy reading my blog. It seems most of us can relate to the fatigue and diminishing energy. When I'm shopping with my daughter, I find have to stop and take rests to sit down. You know, I just thought of a new topic; how aggravating it is when people attribute your aches and pain to aging, saying we all have aches as we get older. Fibro pain has nothing to do with aging, as we know.

    Thanks for reading.

  5. Wow amazing I was just telling my friend this my days are full of working hurting water n redbull trying to make it through the day, I too see about the bath part but there hasn't been a day I haven't had a shower or bath otherwise I could not wake up, but thanks for sharing the true story of our fibro patients everyday lives!

  6. Glad you enjoyed reading it, sp. Thanks for posting.

  7. Hi Cathy, I can relate to the bathing part as well as everthing else you have written.
    I have to said that showering helps me a lot in waking me and my body up and helps in keeping me moving but I have to confess that many times even after the shower my day stops there since there is no enough energy(or there is too much pain or fog, dizziness, nausea, etc) to go out.
    So I get frustrated and disppointed and I found me putting myself down calling me names like 'lazy'.