Living With Chronic Fatigue Syndrome and Fibromyalgia
by Stephanie Brail
When you first find out you have chronic fatigue syndrome or fibromyalgia, you may be overwhelmed and confused with how to adjust your life to deal with your illness. Even after some time, it's easy to feel frustrated and alone.
Adjust Your Lifestyle
Depending on the severity of your CFS, you may need to make radical adjustments in your life. This may include leaving a full-time job to work part-time or from home. It may also mean a reduction in income and an increase in medical expenses. Be gentle with yourself. Don't expect to do it all and be it all.
How you craft a lifestyle to support your health will be individual. Here are some suggested lifestyle adjustments:
Find a job with flexible hours. Being able to take a nap in the middle of the day may be crucial to your health. Sleeping in after a night of insomnia may not mesh with a strict boss who expects employees to appear at 8 a.m. sharp, no exceptions.
Plan time for rest, especially after strenuous activity. If you know you are going to be doing something physically or mentally exhausting, plan time for rest after the event. Also make sure you leave time for rest periods as part of your normal routine.
Lower expectations. You may not be able to keep the house as tidy as you used to, but realize getting your rest is more important than a perfectly ordered home.
Delegate what you can. Get family members to help out. Hire a cleaning service to do deep cleaning for you once a month (many commercial cleaning services and individual maids are actually quite affordable).
Find Ways to Nurture Yourself
Because your family and friends may not be supportive, or may not know how to fully support you even if they are trying, it's up to you to take care of yourself. This can be difficult when you are tired and filled with brain fog or joint pain, so keep it simple.
Take a bath. A therapeutic bath with scented bath salts can help relieve aches and pains as well as sooth the soul.
Watch TV. Television gets demonized so much, it seems, but if you are bedridden or having a day where you can't do much, TV can be a wonderful tool to take your mind off your physical distress. Watch programs that make you feel good (even if it's a guilty pleasure like a bad horror flick). Take the opportunity to travel to places you might not be able to otherwise through the magic of film.
Go for a walk. When you are feeling better, take a gentle walk outside (when the weather is nice). The sunlight and fresh air can help improve certain symptoms as well as lift the spirit.
Find an online community. If you are feeling alone and misunderstood, you might consider finding a supportive online community of PWCs (people with chronic fatigue syndrome). By reaching out and connecting with others who have the illness, you can make friends, get support, and learn additional coping strategies.
Don't Expect Family or Friends to Understand
The sad truth is that many people have the mistaken impression that chronic fatigue syndrome is the same kind of fatigue they have after a long day at work. Others may believe (without telling you outright) that you are perhaps just being lazy or malingering.
Those around you may be even more skeptical when they see you and you happen to look good or have energy. What they may not realize is that CFS and fibromyalgia symptoms often come and go in waves. You may have days and times of day where you are better and more refreshed. This does not dismiss the times when you are experiencing an extreme flare-up of symptoms.
Friends and family may be seem to be unsupportive, but usually it's just because they don't fully understand the illness. There's no definitive way to deal with this, other than to try to educate them.
Try to educate. Direct family members to websites like this one, so they can learn about chronic fatigue syndrome and fibromyalgia.
Don't overpromise. When you have an illness like chronic fatigue syndrome, it's hard to tell in advance how you might be feeling on a given day. There may be times you will have to miss someone's birthday party or gathering because your symptoms are flaring up that day (or even those few hours!). Prepare your friends and family by explaining that you may or may not attend depending on how you are feeling at the time.
Be patient. This can be very difficult, especially when a parent is admonishing you to get a full-time day job when you know that working from home is better for your health. Try to explain your situation without getting defensive, but be gentle with yourself no matter how you react. Remember, fatigue can make you cranky!
No matter what anyone tells you, having chronic fatigue syndrome or fibromyalgia is very, very tough. Platitudes to just "make the best of it" and "keep a stiff upper lip" can be very frustrating to hear when you aren't feeling well. So how can you stay positive when your body seems to be conspiring against you?
Find ways to laugh. Laughter, as they say, can be the best medicine. Find ways to find humor in the every day. Don't take yourself too seriously. Lighten up as much as possible.
Turn to spirituality. While not everyone is spiritual, for many spirituality is a source of comfort during difficult times. Spiritual networks can also provide personal support and inspiration.
Surround yourself with loving, positive people. Chronic fatigue syndrome and fibromyalgia can be very taxing, and so it is doubly important to surround yourself with people who uplift instead of drain.
Find What Works For You
Because everyone experiences CFS and fibromyalgia differently and at various levels of intensity, ultimately you will have to create a lifestyle that works best with your condition. Take your time, be patient, and know that adjustments along the way are part of the process.