The unpredictable nature of ME/CFS & Fibromyalgia makes daily life a challenge for those of us who are trying to survive with the illnesses. Never knowing from 0ne day to the next what is going to happen, what we will or will not be able to do, is something that can really add to the stress in our lives. Extra stress means more flares, more flares means more time in bed and less activity. Less activity means more depression and feelings of inadequacy.
The unpredictable nature of the illnesses also makes it harder for others to understand and to accept ME/CFS & Fibromyalgia as legitimate diseases. One day we may be able to work and the next day or two or longer we may be stuck in bed. For example, I was at work on Monday, down on my hands and knees cleaning like crazy and running the cash register in between. To look at me, you would think that I was healthy and didn’t have any problems and that there wasn’t anything wrong with me. People see me doing these things at work and probably find it hard to believe that I am actually as ill as I really am. I chose to do this extra job on my own because that is how I am – I like to be busy when I work and I hate standing around doing nothing.
Then yesterday and today I was very sick both days and wasn’t able to anything at all on Tuesday and wasn’t able to do anything but some computer work today. But the people that live with me are the only ones that see that and that is how it is for many of us. It’s as if we have a delayed reaction (the postexertional malaise) with symptoms after the exertion and the downfall doesn’t happen around the people who we see at other times. I don’t blame anyone for my behavior except myself and I knew better – I just get carried away sometimes and forget that I’m not Superwoman.
I think one of the hardest questions I have ever had to answer from a doctor or from the Administrative Law Judge when I was going for my disability hearing was, “What do you do all day?” That question is almost impossible to answer because each day is not the same. I can’t keep a schedule or routine – those have gone by the wayside a long time ago. I “tentatively” plan things, I still make “to do” lists, but there are many days where nothing gets done on those lists. It’s the nature of the beast we know as CFS & Fibromyalgia. I read in a book by Marguerite Guzman Bouvard, Healing – A Life With Chronic Illness, where she was talking about the unpredictability of chronic illness (she has Interstitial Cystitis):
“The fact that I do not have a schedule, that every single day is different depending on the kind of night I have had and the level of pain I am experiencing, makes it even more difficult to explain exactly how I spend my time. I want to shout out, “It’s possible to live the way I do, without predictability and in chaos! It’s demanding, exhausting, but I’ve learned flexibility.” Suffering does not mean the absence of life. The heart still beats, still speaks to the world.
I’ve talked many times to others and on this site about how I lost my identity whenever I had to quit working full-time back several years ago. When our chronic illnesses get to the point where they are severe and are seriously impacting our lives, we have to start all over again – find a way to rebuild the foundation of life. It is very difficult to rebuild a life when you have no routine and are used to structure and thrive on routine, order and everything being controlled. With CFS & Fibromyalgia there are none of these things. Marguerite also says in Healing – A Life With Chronic Illness:
Although in the early years of my illness I felt as if the life I had so carefully built was over, it was in the depths of a solitude I believed would be a permanent condition that I began the hard work of rewriting my life. I redefined and expanded what I came to consider as the narrow social concepts of work to include the many tasks around illness. I integrated these efforts with trying to remain engaged in the world by creating a new public identity. It proved to be a sometimes overwhelming, multifaceted, and ongoing work, for a life is filled with many different aspects we rarely think about, because they have become routine. I had no more routines. I needed to create ways of living well with unpredictability and to translate my reality into the language of the healthy.”
Like Marguerite, I struggle with getting overwhelmed by the daily tasks of life and how to get everything done plus achieving my goals because my CFS & Fibromyalgia make it unpredictable for me to accomplish any of these on a regular basis.
Unpredictability – the only predictable thing about CFS & Fibromyalgia.
To purchase Healing – A Life With Chronic Illness, click HERE.
Another perfect picture of a day in the life of someone suffering from Chronic Illness. The things I miss the most are being able to get everything done on my to do list and planning trips and events. Like Sandy and Ms. Bouvard, I still make the lists but seldom get everything done on them. As far as planning long term for anything, I’ve all but given that up. Since trips and events usually involve other people, I hate to rain on everyone else’s parade if I have to cancel. I have, in some cases, pushed through an event in order to not disappoint someone else. What people don’t understand is that, pushing through in itself, is stressful. We are trying not to seem ill or show that we don’t feel well and it just adds to the stress we already feel. Or the next day we may suffer from this “pushing through” process.
I find that these days I’m better off doing a “spirit of the moment” thing. That way I know how I feel at that time and that being involved in an event with someone I love is not going to actually make me ill later on. My very nature is in planning what I’m going to do in the long run and it is so very hard not to be able to do that any longer.
Thanks Sandy and Ms. Bouvard for painting a very accurate picture of our lives.
Single treatment of live best taking vicodin when I touch and report on the effects that can have this medicine. Mention Findrxonline that in United States only five million people suffering from this disease and taking prescription medications.
I totally agree that the unpredicability is extremely difficult. Even when we get to the point of letting go and surrendering to the reality that we are extremely sick and make the changes we need to reduce the relapses and crashes, we can’t alter ‘life happening’. Last year, I had the worst year I have had in decades. I lost my home, all my possessions, had to re-home one of my dogs and my other dog, Dekker, died in December. I also had my daughter getting married in the middle of all of that stress! I share this not to garner sympathy but to make this point. I was doing everything ‘right’ in taking care of myself but life intervened and now I am in a relaspe as bad as when I first got sick.
This reality has really hit me lately. I can NOT control this illness. It is in charge. All I can do is stay flexible and adapt and change as often as it demands me to.
Great Post Sandy. Nicely done.
This is a great post. It definitely articulates one of the least understood aspects of ME/CFS, the one that has given us the label of “lazy” over the years. It doesn’t make much sense to see a “perfectly healthy” person one day (especially as we tend to hide how we’re feeling from others), and then the next day — or maybe two or three days, who knows! — that person is incapacitated. And when you explain “activity and exercise don’t affect me like other people,” it just sounds…weird. If you can find a doctor who knows what post-exertional malaise is, you’re incredibly lucky.
I have been suffering with chronic fatigue syndrome for over 20 years. I struggle working part-time and taking care of my house. I’m almost 50 years old and don’t see myself working much longer. My work history has suffered because of my illness.
I have a very good doctor but I really don’t think she keeps up with how to treat my sickness. I want to look into retiring early on retirement disability. I hope it will workout for me and those like us.