By Bianca Veness

Note: Bianca Veness, a CFS patient from Australia, is a moderator in the CFIDS & Fibromyalgia Self-Help program. This article is adapted from messages sent to a group she led. 

Rebelling against the need to be disciplined is one of the biggest challenges I’ve had to overcome in dealing with CFS. I used to hate living a regulated life, so I ignored my body’s limits, and suffered intense symptoms and frequent crashes. I turned things around when I accepted that discipline was the only way to treat my illness successfully.

Giving in to Gain Control

I knew having CFS meant I needed to live my life more carefully, but sometimes I got fed up with the whole idea of managing my illness. It felt like a burden. It felt like too much hard work. “Why should I have to live my life so carefully?” I asked myself. “Healthy people don’t.” I was frustrated by the need to adapt to my illness. Even though pacing and managing my CFS made me feel better, I felt like I was being forced into it. I rebelled against the idea of being told what to do, even if I was the one doing the telling.

I think my defiance stemmed from not accepting I was sick and not acknowledging my life would have to change because of it. Eventually, I realized fighting my illness was only making things worse. The illness was not some outside invader trying to take me over, but my own body begging for rest and a stress-free life, begging for some time to heal itself. I realized that surrendering to the illness was the only way I could improve my health. There was not some magic pill that was going to cure me. If I wanted to be well, I had to accept my body's demands, no matter how severe these seemed to be.

With this realization, I finally became comfortable with the changes I was making in my life, and I was able to manage my illness effectively for the first time. And as I began to see results from living within my energy envelope, I felt motivated to continue.

Using a Flexible Schedule

The transformation into a more disciplined person has been gradual and often difficult. I’m not naturally an organized person and I have trouble keeping to a routine. For me, the key to success is flexibility. I use a special, flexible kind of schedule. Every morning I write a To Do list, but I choose what tasks I’ll do and in what order I’ll do them. I also use a chart to map the time I spend resting - two hours each in the morning, afternoon and evening. I can have this rest whenever I want to, in short rests or longer ones. In this way, I'm keeping within my limits, but adapting my life to circumstances and desire.

By keeping to a routine, I can feel better and do more. I free myself from the control of the illness. Whenever I feel frustrated at having to live within strict limits, I ask myself, “Do I want to run my life, or do I want to let the illness do it?” Or I ask, “Is it better to live in chaos and feel terrible all the time, or keep to a schedule and feel better? Is exceeding my limits worth the pain?” It's all about changing how I think about doing things that are good for my health. I now see them not as a duty, but as a choice. I am choosing to do everything I can do to feel better.

Since I changed my attitude, I don't see routine as a frustration anymore. I look on it as a way to set myself free from crippling symptoms and an uncertain existence. I see myself as a full-time carer. It is my job to manage this illness and look after a sick person (me!). How well I do it will determine how good I feel and how much I can accomplish. I look on the illness itself as a teacher, who is teaching me to listen to and love my body, and to slow down and enjoy life.

I still have days when I can't make myself live within my energy envelope no matter what I do, but I use reframing to help me move on. Instead of beating myself up about it, I just think, “That was today, tomorrow will be better.” I see my routine as a way to love and nurture my body. I praise myself for everything I do to improve my health, and I see managing my illness successfully as my greatest achievement.

Small Steps and Rewards

I use many techniques to manage my illness. (I have described some of them in the article How I Use Pacing To Manage CFS.) Some people have told me they felt tired and discouraged when they read the long list of strategies I use. All I can say is that I didn't start doing them all at once! The transformation into a more disciplined person was a long-term process. I introduced these changes gradually, maybe one a week at best, and I made sure I found the right one before adding the next. I go one step at a time, and I experiment until I find a strategy that works for me.

For example, I spent many months trying to find the ‘right’ way to improve my sleep. I tried keeping sleep diaries, setting targets to go to bed at a certain time, using sleep medications, waking myself up early - nothing worked, or it only worked for a short time.

What has ended up working best is keeping a ‘sleep hygiene scorecard’ where I give myself points for various actions: going to bed early, journaling before bed, turning off the TV and computer at a certain time, and so on. When I reach 100 points, I give myself a reward. It might sound silly, but it really helps! It's such a fun way of improving my sleep, and if I feel like having the occasional late night I can, but the incentive is there to have a good sleep routine.

I adapt my routine to suit me. I make resting fun, with talking books, good music, or relaxation tapes (as well as resting quietly sometimes). I reward myself and give myself praise by keeping a journal each day of all the positive things I've done for my health. (I’ve found praise is a much better teacher than punishment.) I keep my routine flexible and adapt when needed. If something isn't working or I'm finding it frustrating, I get creative and find a different way of doing it. And I have to say I enjoy it! When you're suffering so much uncertainty in your body and your life, having a routine can be a great comfort, and a way to feel like you’re moving forward with your health.

The Bottom Line: From Control to Acceptance

I rarely overdo it now, and when I do, it’s a reminder of how terrible I used to feel all the time. I find it hard to believe I was once so edgy, exhausted and in so much pain; always living on the edge of a crash. Of course, I still suffer pain, fatigue and many other symptoms, but they don’t dominate my life to the extent they once did.

My experience with CFS has helped me to understand what I can control and what I can’t. After living with CFS since 1995, I’ve concluded that I can't ultimately control the course of my illness. I think a fellow patient put it best when she said, "All I can do is give my body the best possible opportunity to heal itself, and then the results are out of my hands."

That’s what pacing and looking after myself is all about - giving my body the best possible opportunity to heal itself. For me, having a sense of ‘control’ is about knowing I can affect the course of my illness through my actions. I have the power to make myself feel better or worse. How I treat my body might not determine whether I recover, but it will determine how well I feel.

Releasing the idea I could get rid of this illness and focusing my energies on what I could do to feel better now was a powerful and life-changing experience. I had to let go of the idea that I could control my own body, and let it lead me instead. I had to employ all of my creativity and determination to change the way I did things. In this way, I found freedom from CFS and the strength to live a disciplined life.

Related Articles