Those who don’t deal with fibromyalgia on a daily basis have a very difficult time understanding why people who have it can’t always remember things, get exhausted from doing simple activities, or have pain so severe that all we want to do is try to find a comfortable position so we can just have a few pain free moments.
A friend of mine wrote these words to me many months ago, and to me they sum up our experiences with an activity that most people just take for granted.
“I remember I used to ‘cook dinner’, and it was no big deal. Now I have to ‘think’ about what I’m going to fix, then I have to ‘think’ if I really want to thaw something out or just have soup because I hurt so bad. Then maybe I decide I’ll fry that chicken, so then I have to go to the freezer, and it’s not an upright, so I have to lift the lid, and find something to prop it open. Then, of course, the chicken is on the bottom, so I have to pick everything out of there which is cold and frozen, until I find the chicken. Now that I’ve found it, I have to put everything else back. Then I take the chicken to the microwave and put it on defrost. Then I suppose that I have to cook potatoes to go with the chicken. Now I have to walk back to the laundry room, get the potatoes, bring them back to the kitchen table, where I sit down for a minute because the pain in my shoulders just won’t quit. I’ve forgotten the knife, so I have to get up, which really hurts. I never want to get back up after I’ve sat down, but I get the knife, and sit back down and peel the potatoes, which takes a little time because my fingers and hands hurt so bad. Once that part is done, I have to go get a pan, take it to the sink, fill it with water for the potatoes, wash the potatoes, cut them into pieces, and put them in the pan. The pan is very heavy at this point, so I may ask for help carrying it or just go for it, depending on how bad my hands are. I haven’t even gotten to the chicken yet or set the table. Most people just do this stuff automatically every night, while the people with fibromyalgia just have to take it one step at a time, and it can be grueling. The same thing happens when I go out for dinner. I never sit in a booth because it hurts so bad trying to get up, so now we always ask for a table. There are just so many adjustments that we have to make just to ‘get through’ a day.”
Then there’s laundry, errands, or light housework which must be done by someone. In my family, I’m the designated someone since I always did these things before developing fibromyalgia. My children do their own laundry, but trying to haul a load of my husband’s and my dirty laundry down to the basement from the upstairs is exhausting. If I do it when one of my children is at home, I may get help if I ask, and occasionally one of them will actually offer to carry it for me. Then there is the problem of several family members trying to do laundry at the same time. With each person having their own laundry basket, it should work, but it doesn’t all of the time. I find my half dried laundry thrown on top of the dryer since one child needs their clothes dry before work or school. Then there is the issue of the towels. I did tell them that I wouldn’t wash their towels anymore since they are too heavy for me to carry, but what I find is the towels in the master bathroom being used by them because they have run out of towels.
Family conferences are a necessary evil, and they only work when all members are willing to do their part, or when all members are home at the same time in order to sit down and explain the rules over and over again. It is extremely frustrating to be the only member of a family who is living with pain and fatigue, yet is expected to organize a family conference, set the rules, and try to have the energy to follow through with them.
Before I developed fibromyalgia, these problems weren’t as exhausting for me, but now it is too much work to have to continually explain why I can’t or shouldn’t do something. I’m praised for fixing a nice dinner, yet the dishes are left on the sink for me to do before I go to bed at night. The dusting just isn’t done, and even though two of my family members have allergies, they don’t make the effort to do it.
As my friend wrote, just thinking about preparing a meal can be exhausting, but actually doing it can be painful and it becomes a major chore rather than something pleasurable to do.
Living on disability, only one salary, or having to work in spite of dealing with fibromyalgia can become emotionally and physically exhausting for us. Those who have to work in order to have a roof over their heads, food in the cupboards, or clothes on their backs can mean that there is little energy left over for activities of normal daily living. Those who don’t have fibromyalgia can’t seem to understand why we aren’t more organized, or why we don’t just hire a housekeeper, or force our children and spouses to do more chores.
It is emotionally exhausting to have to continually remind people that we just can’t do certain things. Sometimes it is easier to either just not do them, or force ourselves to do the minimum of chores so that our homes don’t become overwhelming with dirt or clutter.
We may be mourning for the lives that we once had, yet since our pain and fatigue is usually invisible to those around us, we don’t always receive the understanding which we desperately need. I’ve been told by many well-meaning friends to get my family to help more, but they aren’t living my life for me. It is difficult enough to just get through some days without people placing greater expectations upon me.
Not only must we change the way in which we live our lives, we must also deal with the losses that we’ve sustained to our self-esteem. For most of us, we hate to feel like nonproductive members of our families or our communities, but the reality is that we have to stop and think before doing almost anything now. Sometimes the chore seems so overwhelming that it’s easier to just do nothing, yet that can lead to depression.
There is no one simple answer for each of us, and we have to learn to listen to ourselves rather than let others tell us how to live our lives now.
Women Living with Fibromyalgia: Refusing to Suffer in Silence by Barbara Keddy, et al.
The Fibromyalgia Advocate by Devin J. Starlanyl
New Hope for People with Fibromyalgia by Theresa Foy Dideronimo