In this day and age, you may feel incredulous to find yourself in a medical "wilderness" where little is known about your condition and the way out is unmapped. But for those with chronic fatigue syndrome (CFS), it is a reality.
If you have been diagnosed with CFS, although you may initially feel at a loss or even abandoned, the truth is you are not alone. Take heart! Those who started the journey before you have helped their doctors and themselves chart effective coping strategies. It's true that coping mechanisms are not a cure; nevertheless, they can make a huge difference to the quality of life you rally for yourself and they can help you safeguard the relationships you cherish.
Living with CFS can be a challenging journey through the wilderness. To effectively steer yourself, keep these "survival" tips in mind:
- Adjust your bearings. Take a good long look at your new situation and realistically modify your expectations of yourself. This is not as easy as it sounds. It may take time and some hard psychological work. Your best recovery may involve letting go of previous goals and standards and accepting your new, albeit unasked-for, set of limitations. You may also need to adjust areas such as your diet, sleep habits, exercise patterns, and work hours.
- Look for the right help. Find a doctor who understands your condition and can guide you through the lifestyle changes you may have to make in order to optimize your energy. If you're having trouble finding a knowledgeable doctor, search online support groups and disease associations – they may be able to suggest someone in your area. Professional counselling may also provide you and your family with the tools and support to address and successfully manage the stress, grief, and changing circumstances of living with a chronic illness.
- Pace yourself. Beware the "push-crash" cycle familiar to those with CFS; that is, pushing the limits and then "crashing" for a day or more afterwards as a result. Whether it's with gentle, graded exercise or day-to-day activities, keep the bigger journey in mind and set an ongoing goal not to wind up in a "crash" situation. If you know a particular activity causes you to "crash" (e.g., grocery shopping), try to break it up over a few days. Rest and conserve energy (through sleep or meditation) before and after activities, and remember that energy can drain off through not only physical and mental activity but emotional highs and lows as well.
- Send up smoke signals. Communicate! It may be difficult for family and friends to understand, imagine, or anticipate what you are going through. Don't ask them to be mind-readers. Educate yourself so that you can educate them.
- Travel lean and mean. If, despite your best effort, friends or family remain unsupportive or take more energy than you can spare, you may have to consider keeping a distance from them for a while. You don't have the energy at this point to carry the extra load. Find people who are supportive and understanding of what you're going through, such as CFS support groups.
- Track yourself. Take care of you. Tune in closely to your body's needs and rest accordingly. Depression may result from the myriad of losses and changes you face; talk to your doctor if you start to see signs of depression. Employ stress-management tools along the way, and learn some new ones. Support groups, cognitive behavioural therapy, self-help techniques, prayer, meditation, and yoga can all help lighten your load. And keeping your sense of humour is always a good idea!
- Adjust your exercise. You should adjust your exercise based on the state of your condition. During a crash or a flare, stick to day-to-day activities. Once stabilized, you can start with short low-impact exercises like stretching or conditioning. Exercise and rest periods should follow a 1:3 ratio. For example, one minute of exercise should be followed by 3 minutes of rest. Remember to start low and go slow. Sessions can be spread throughout the day to minimize the possibility of flares, and the duration of exercise can be increased with tolerance. Talk to your doctor or physiotherapist to discuss what exercises are suitable for you.
All material copyright MediResource Inc. 1996 – 2019. Terms and conditions of use. The contents herein are for informational purposes only. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Source: www.medbroadcast.com/healthfeature/gethealthfeature/Living-with-Myalgic-EncephalomyelitisChronic-Fatigue-Syndrome