Minimizing Relapses
By Bruce Campbell
(From the series What Works for Managing ME/CFS and Fibromyalgia)
Relapses, sometimes called setbacks or flares, are a frequent and often demoralizing part of chronic illness. This final article in the series presents coping strategies used by participants in our self-help course to reduce the frequency and severity of setbacks.
We will look first at techniques people use to prevent relapses, then at strategies for limiting their impact.
Preventing Relapses
Class members describe using ten strategies for preventing relapses.
1) Making Mental Adjustments
Many of the coping techniques in this section involve new habits and behaviors, but their foundation seems to lie in having new expectations for oneself based on acceptance of the limits imposed by illness.
It has been important for me to accept my new life with CFS, move on, and realize I will not return to my former self. I've needed to redefine expectations of myself based on the new me. Lowering my standards and trying to break free from perfectionism has been a large part of this.
I've decided it's all right to take care of myself for a change, just like I would take care of someone else.
I have accepted that I will probably never fully recover and in acknowledging that I am discovering better ways to co-habitat with the illnesses.
2) Pacing
Pacing is a favorite strategy for bringing stability to life and preventing setbacks. As shown in the following quotes, pacing involves a variety of strategies, such as reducing activity, shifting among different activities, having short activity periods and living according to a schedule.
I've cut back my activity level substantially overall, and when I feel tired I cut it back even more.
I do stressful things like taxes in small bites. Just letting them pile up just adds more stress.
Allowing myself plenty of time between activities scheduled for the day and scheduling the correct number of activities daily are two ways I prevent relapses.
What helps me is to have a balance of physical and mental activities, interspersed with frequent rests. I have recently introduced a checklist system to remind me about activities that are good for me such as walking, exercises, relaxing and hobbies.
It definitely helps me to make a list of weekly and daily activities so that I can prioritize them. I know how much physical activity I can handle in a day, so I remember this and make my list accordingly. I always allow at least an hour's rest in the afternoon so this is a given on my daily list.
3) Rest
Rest can be used on a regular basis to prevent relapses. Extra rest can help avoid setbacks when there are special events or a secondary illness.
I think my two daily fifteen-minute rests were the most important thing I did to aid my recovery.
I can never get enough rest! The more I'm able to incorporate quality rest, even little bits and pieces, into my day, the better off I am.
I plan ahead for events requiring extra energy, such as appointments, shopping, socializing and holidays. I rest beforehand, during (if possible) and after.
Two of my rules are to take extra rests before special events and to take extra care when recovering from secondary illness.
4) Control Stress
ME/CFS and fibromyalgia are very stress-sensitive, so minimizing stress can prevent relapses.
I attempt to avoid all situations that will produce stress because stress inevitably triggers relapses. This includes avoiding contact with people who naturally trigger stress in me.
I try very hard to eliminate stress because I seem to react so strongly to even small stress levels now. Eliminating or drastically reducing stress seems to be a necessary thing for me right now.
Stress of any sort is really tough on me. I minimize stress by avoiding some situations and by decreasing my stress response to those situations I can't prevent.
5) Honor the Body's Signals
There is a strong temptation to respond to the onset of symptoms by "pushing through." As suggested in the following quotes, listening to the body's signals at such times can prevent symptoms.
I have become more aware of the warning signals that my body sends me when I am doing too much and I am learning to stop as soon as symptoms appear - even if it's just lying down for a few minutes.
I've learned the signs of going too far and have a good idea of how and when to back off to prevent a big relapse. I consider that a huge improvement compared to how I started out.
6) Take Care of Secondary Illnesses
Having other health problems besides ME/CFS and fibromyalgia can make symptoms worse. Treating other conditions and acknowledging that they intensify symptoms can be helpful.
I've learned that I have to lower my expectations and level of activity when I have extra illness, so as not to make this unavoidable relapse worse and last longer.
I realized through the course that I have about four or five different health problems. I need to get treatment for the others, as well as taking care of my CFS.
7) Be Assertive
Standing up for oneself can help you meet your needs, reduce stress and thereby prevent relapses.
Communicating clearly when I need medicine, rest, or quiet time and taking time for these things when I need them help me to prevent a relapse.
It is extremely important for me to communicate my needs and limits to others. I find that my true friends will accept this and often will remind me about resting or stopping what we are doing.
I've come to accept that it is okay to say "no". I can avoid people and situations that upset me.
I'm OK if I stick to my routine. But if I go off it very much, I pay for it. One new rule I have developed for myself is no overnight guests.
8) Solitude
Time alone can reduce stress and allow for recharging of batteries.
Solitude helps me balance everything out. I have found it to be as necessary and fulfilling as resting . I get to know myself, tune into how I'm doing, and listen to what my body is telling me I need at that time.
9) Making Time for Pleasure
Chronic illness often means pain and frustration. Having pleasurable activities helps to reduce frustration and thereby makes it easier to live within limits.
I try to do plenty of fun things, in small bites, to keep the endorphins flowing.
I must make time for fun or pleasurable activities. This is crucial to my feeling good. Nurturing my creative side, for this brings me great pleasure and validation within myself. Enjoy the beauty of nature, for there is so much around me.
10) Identifying Relapse Causes
Last, relapses can be prevented by identifying and avoiding their causes.
I've identified three main causes of my relapses: not pacing myself, secondary illnesses and stress.
I've tried to identify precipitating factors and them eliminate them by using problem solving, communication, assertiveness, relaxation techniques, movement/exercise, tending to my asthma and allergies, making myself as comfortable as possible.
Limiting Severity of Setbacks
People in our groups report using the following five strategies for reducing the severity and duration of setbacks.
1) Take Extra Rest
The most common strategy for overcoming setbacks is to take extra rest, continuing it until the flare subsides.
When relapses occur, for whatever reason, I tell myself just to go with what my body is telling me to do...rest! If I have some things planned for that day, I try to tell myself that it will wait for another time.
One of my rules for living with CFIDS is: if all else fails, go to bed. This rule gives me permission to acknowledge that at times I am powerless over the disease and the smartest thing I can do is to give in to it.
2) Act Immediately
You may be able to reduce the impact of relapses by taking action as soon as symptoms begin.
I can curtail the severity of flare-ups by reacting immediately. As soon as I begin to feel edgy, nauseous or tired or have muscle pain (all indicators that a relapse is imminent), I stop whatever I'm doing, go to my bedroom, draw the blinds and lie down. That action alone makes me begin to feel better. Then I practice deep breathing to clear my mind. This relaxation period can take from 45 minutes to over two hours. Usually, I arise refreshed and energetic, and can resume all normal activities.
3) Postpone, Delegate or Eliminate Tasks
Reducing activity by postponing tasks, asking for help or even letting go of something as unnecessary can help speed the end of a setback.
Asking for help if I can not do it all or just letting go of the less important things that I am unable to do at the time helps me reduce stress and my setbacks.
On relapse occasions I am not so hesitant, as I once was, to ask for help with either daily chores or whatever comes my way. I know my family wants to help me and it makes them feel good that they give me a hand.
4) Seek Consolation and Support
Students report being helped by saying consoling words to themselves and by making contact with other people.
If I find myself in a flare-up I tell myself ‘this will pass'. That helps me relax and quiets the inner voices that say I'll never get better.
When I'm in a crash, I try to reach out for support. It's much harder to be alone when I'm crashed, so I find a friendly voice on the phone for comfort. Also, I try to remember that things always return to some level of tolerable, and that there is always the possibility for positive change.
I have found it very useful to talk with another person when I'm in the middle of a crash, and often it doesn't matter what we talk about. Just feeling connected to something beyond myself helps lift my spirits.
5) Prepare
Having things handy and in place can help reduce the anxiety of a crash and make it easier to weather it.
One thing that has helped me is to plan for a flare-up. I try to keep ‘extra' of everything in the house, including food that my family can cook. Also, I changed my room around and added a book case next to my bed with things I can use if I'm stuck in bed. I have our family finances, my writing and my books. It gives me a lot of peace of mind knowing I'm ready when one hits.
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