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Planning for Relapses
Many situations we face can be anticipated and the negative consequences reduced or eliminated if we give them some advance thought. In this and three companion articles, we look at different ways that planning can diminish suffering and increase quality of life if you have ME/CFS or FM.
Relapses Periods of intense symptoms, often called relapses, setbacks or flares, are a common and often demoralizing part of ME/CFS and fibromyalgia. Planning using the Relapse Worksheet can help you reduce frequency and severity of relapses by helping you think about five different areas. (For details on what follows, see the chapter on Minimizing Relapses in our introductory text.) 1) Identifying Relapse Triggers
Some relapses are due to the waxing and waning of the illness, but other setbacks are triggered by actions you take, and events and situations that you can learn to manage or avoid.
You can begin to gain control over relapses by identifying the factors that intensify your symptoms. To get you started, here are seven triggers often mentioned in our groups.
2) Identifying Warning Signs
Relapse warning signs are the signals your body sends that a setback is beginning. You may be able to reduce the length of a setback, or even prevent it, by training yourself to spot warning signs and to take quick action. Signs include:
3) Responding to Warning Signs
Once you’ve identified your signs, the next step is to develop a plan of what to do when warning signs appear. Responses to warning signs may include lying down, reducing your activity level, limiting sensory input and/or limiting your time with other people.
For example, one person reported success in limiting the effects of migraine headaches. She taught herself to recognize the warning signs that a migraine was coming and, by making immediate use of relaxation techniques, was able to decrease the intensity of the migraine and sometimes even prevent it.
4) Limiting Effects
You can develop a plan for minimizing the length and severity of relapses by asking yourself what has helped you in the past. Here are some common strategies:
5) Preventing Relapses
The final relapse planning strategy is preventive: using lifestyle habits to avoid relapses. You can limit the frequency and severity of relapses using the seven approaches described below:
Relapse Prevention Success Story
Like many people with ME/CFS, I felt very discouraged and demoralized by relapses, times when I had to spend long periods lying in bed in pain in a dark room. I wanted to see if I could lessen the length and intensity of relapses and decided to see what I could learn from my daily logs.
I began by defining a relapse as a worsening of symptoms that forced me to spend 8 hours or more hours in bed, basically a whole day lost. Reviewing my logs for the year, I found eight relapses, some lasting more than a day. For the year, the total was 12 days in bed.
Second, I looked for common causes and discovered that most of the relapses were associated with either having another illness or travel. So I listed those as causes.
Causes
Other Illness
Travel
Third, I asked myself what strategies might reduce my relapses. I had noticed that when I thought I was over a cold or flu, I would return to my normal activity level and then a day or so later would be hit with a ME/CFS relapse.
I decided that when I was sick in the future, I would take extra rest after the acute illness seemed to be over and return to my normal activity level over three or four days. For travel, I came up with three strategies. One was to limit the distance I traveled. I decided not to go more than four hours drive from home. Also, I decided to rest 10 to 15 minutes after two hours of traveling and after I arrived. I would lie down with a sleep mask on and rest.
Third, I would take extra rest during the rest of the trip, typically about twice as much as I would at home. And also take whatever rest I needed after returning home. So then I listed the strategies for each cause.
Causes Strategies
Other Illness Extra rest
Slow return to normal
Travel Max 4 hours from home
Rest after 2 hours & on arrival
Extra rest during & after trip
I wasn’t sure what effect using these strategies would have. Like most of my responses to ME/CFS, I viewed this as an experiment. With experiments, some work and some don’t. I think my hopes were to reduce the number of relapses in ’99 by a quarter or a third, enough to convince me that I was on the right track.
I used these ideas in ’99 and also refined my pacing skills and, after realizing the effects that stress had, began working to reduce that, too. When I studied my records at the end 1999, I was surprised and pleased to find that I had no relapses at all, no times that I had to spend at least 8 hours in bed in one day due to symptoms.
And the same thing has been true in every year down to the present (2018), an unusually big payoff for about two hours work.
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