Living With CFIDS
Fatigue 101

By Jennifer Spotila

When I was diagnosed with chronic fatigue and immune dysfunction syndrome (CFIDS), I did not know that I was beginning a crash course in fatigue and illness management. My doctor talked to me about my physical status and he has prescribed different treatments to manage my physical symptoms.

But no one, including my doctor, told me anything about how to manage my overwhelming and mind-numbing fatigue on a daily basis. I’ve spent most of the last five years trying to figure it out myself.

I can guarantee that if you try to manage your CFIDS fatigue the way you managed fatigue before you became ill, it will not work. A healthy person’s fatigue management model is not applicable to CFIDS. You cannot use the “just get a good night’s sleep” approach to handling the kind of fatigue you are now experiencing.

I learned all of this the hard way—kicking and screaming and wailing to the heavens. As I look back over the last five-and-a-half years, I think that if someone had told me what CFIDS would really be like, maybe I could have learned these lessons sooner. If someone had given me the “syllabus” for this course, perhaps I could have used it as a road map.

But I also realize that each student in this unfortunate school has to learn the lessons for himself or herself. As much as we would all like to, you can’t cheat on this test. All I can offer you is a list of principles to help you manage your fatigue. You will have to put them into practice in the way that works best for you.

• Get as much rest as you can. Taking one week off won’t fix how you’re feeling, and trying to maintain a normal pre-CFIDS schedule will certainly do more harm than good. You need to give your body the time and space it needs to heal.
  
  Take a look at your life and eliminate whatever you can. For most of us, this means reducing our work schedules or
  even leaving our jobs, drastically trimming our social calendars and getting help with household tasks or learning to “let go” and tolerate some clutter in your home. You may as well make the choice to do this, because if you do not, your symptoms may exacerbate and you’ll have to clear your schedule anyway.
  
  
• Be as active as you can. If you don’t use it, you’ll lose it. To avoid deconditioning, do as much as you can without overdoing it. If you can take a short walk, then do it! If you can drive and do your own grocery shopping, great! If all you can do is get dressed and move from your bed to the couch, then do that. If you are able to work two hours a day, then by all means do so.
  
  Keep your body and mind moving—and used to moving. If you begin to recover, your body will be ready to do more.
  If you do not experience an improvement in your symptoms, at least you will be using whatever capacity you are able to maintain.
  
  
• Balance your life. Achieving balance is harder than climbing Mount Everest. This is the lesson of all lessons. You must maintain a level of activity, but not overdo it and push yourself down the slippery slope of worsening fatigue, weakness and pain. Balance is also a moving target.
  
  Ideally, you can maintain a level of activity just within your limits so that you can avoid all crashes. However, you have to be realistic. Sometimes the grocery shopping just needs to be done or you have that family wedding you can’t miss, so you’ll overdo it and wind up in bed. Your goal is to reduce the frequency of your crashes. Strive for balance between doing what you want to do and paying too heavy a price for it.
  
  
• Spend your energy as if each movement was your last dime. Which sounds better, spending your energy having lunch with your best friend or doing laundry and paying bills? Your energy is a precious commodity, so spend it on meaningful things that make you happy. Try not to end the day feeling as if you’ve exhausted yourself on non-worthwhile things. If all you can do today is one small thing, make it something that will feed your spirit or make you smile.
  
  
• Recognize your own worth. Your worth and value is independent of your income, the size of your house, how many awards you’ve won or whether you have a job. It’s difficult, but try to separate how you feel about yourself and your life from how many things you accomplish. We are conditioned to believe that our worth is based on what we accomplish in society. It is a serious blow to your pride and self-worth to admit that you simply cannot work and must apply for disability.
  
  This illness can take almost everything from you—including your job, money and social life. But you continue to exist. You are still you. Believe me, I am not minimizing the losses you have to endure, and I’m not suggesting that you avoid grieving for those losses. Just remember that your value as a person does not disappear along with those material things.
  
  
• Be good to yourself. When you were sick as a child, did someone take special care of you? My mother used to bring me tea and toast in bed, and my father would buy me comic books. As an adult with CFIDS, my parents aren’t around to wait on me anymore and my husband has career and household tasks to attend to. We all have to learn how to nurse and nurture ourselves. You deserve whatever will help you heal, or at least make this illness more bearable.
  
  
• Safeguard other areas of your health. CFIDS can make you feel so horrible you may think there is nothing else that can go wrong with your body. Wrong! You need to take responsibility for maintaining the health that you have left. Eat well, drink enough water, exercise (only to the extent you are able to tolerate it), take your vitamins and get quality sleep.
  
  New or unusual symptoms need to be brought to your practitioner’s attention as soon as possible. Remember (and help your doctor to remember) that not every pain or symptom is CFIDS related. People with CFIDS can and do get cancer, heart conditions, kidney stones, pneumonia and other diseases.
  
  
• Take control.  I’m sure you are saying to yourself, “I’m not in control of CFIDS!” You’re right. You didn’t make yourself sick, and I know you are not keeping yourself sick. However, you absolutely do have control and responsibility for how you respond to the fact that you have CFIDS. It is up to you. Will you push yourself beyond your limitations and make your condition worse? Will you take to your bed and refuse to do even the small things that you are still capable of doing? Will you vent your anger and frustration on the people around you?
  
  All of that is most definitely in your control. CFIDS happened to you, so now you have to live the rest of your life in light of that fact. Live within your limitations, but let the emphasis be on your living.