Living with a Complex Chronic Disease
At this time, there are no known cures for diseases like Fibromyalgia, Myalgic Encephalomyelitis, Alternatively Diagnosed Chronic Lyme Syndrome or Central Sensitivity Syndromes. Along with medical treatment and symptom management, there are several steps you can take to try and improve your quality of life. It is important to note that the impact of these steps are individual and they may not work for all people living with these diseases. We recommend you work with your health care team on the implementation of any of these techniques.
These steps are often referred to as self-management techniques. You can do this by:
- Identifying specific goals such as achieving a an improved level of physical activity, decreasing pain levels, and overall having improved functioning
- Becoming more informed about your disease in order to gain control and manage your experience of this condition. For example, using the knowledge that pacing activities will help improve functionality over the long run.
- Finding sources for emotional and social support.
If you have had your chronic illness for some time you may have noticed that some activities and situations can make your symptoms worse. These situations are known as triggers and might include noisy or crowded gatherings, prolonged physical activity, emotional upsets, or pressure of work. If you name your triggers and use an activity diary, or daily log to track your activities and fatigue levels during the day, you will be able to plan your activities when they will be easier for you to manage, and at a time that allows you to have a rest period if needed. This is called “pacing”. For example, if mornings appear to be a higher energy time for you, plan to do the more demanding activities such as exercise, studying, or shopping during that time, taking care not to overdo it. Set modest goals for your daily activities and pay attention to the way your body responds to various levels of activity. Feeling fatigued means it is time to rest.
There are many different activity logs available on the internet. It is important that you find one that works for you. This might mean trying a few before you find one that is ideal.
The benefits of exercise with respect to well-being, physical function, and pain control are well-known. People with Chronic Diseases who choose to participate in an exercise program should first discuss their options with the care provider and ensure that their activity is individualized to their specific needs.
Avoid crashing by pushing yourself to do too much. Don’t try to “keep up with the class”. The key to success is to start with a very gentle program, pay attention to messages from your body and do some gentle form of exercise every day or every other day if possible.
Exercise programs may include:
- Range of motion exercises while you are bedridden
- Strengthening exercises
- Aerobic exercises
- Exercise in water (e.g. aqua-fit)
- Yoga that is restorative in nature and teaches relaxation
The aim of relaxation is to block out feelings of stress, anxiety and/or pain. These techniques also help people who have trouble with falling asleep.
There are many relaxation techniques, including:
- Deep breathing exercises
- Progressive relaxation
Here is an example of simple relaxation technique that you can do anytime and anywhere:
- Set aside 10 to 20 minutes at least once a day. Make this your private time to be quiet and alone (no interruptions!)
- Make yourself as comfortable as possible in a quiet, darkened room – lying down is perfectly fine if you are too fatigued to sit up.
- Begin by breathing in through your nose. Say “re” silently to yourself and then say "lax" as you exhale through your mouth.
- Count to four as you inhale through your nose, pause, and then breathe out for a count of four through your mouth. Take nice easy breaths, and don’t force the air in or out as you breathe.
- This technique can help you at any time of day when you feel very tense or anxious. It is also a very good approach to getting to sleep at bedtime.
Many people with Chronic Diseases are not able to enjoy good, energy-restoring sleep. Poor sleep can make other symptoms such as pain and fatigue much worse. Sleep disturbance can include:
- Problems with falling asleep
- Waking up frequently
- Restless Leg Syndrome (numbness and tingling in the lower limbs, and muscle twitching
- Sleep apnea (loud snoring, with pauses in breathing, followed by a loud snort or gasp when the person starts breathing again)
Here are some tips to try and improve your sleep:
- Regular daily exercise within your comfort limits
- Raise your activity level during the day, to the level you can tolerate
- At bedtime, include a quiet, relaxing activity such as a warm bath
- Play a recording of relaxing sounds
- Have a regular bed time and plan for 8 to 10 hours of sleep per night
- Make sure your bed and pillows are comfortable, with good support for your neck, such as a cervical pillow.
- Medications: Most sleeping pills will help you go to sleep, but do not help you to have a deep, energy-restoring sleep. Consult your doctor if you think sleeping pills might help you, and be sure to learn about side effects and safe use of these medications.
- You may benefit from a referral to a sleep specialist or sleep clinic can help with a diagnosis and ways to improve the quality of your sleep
Good nutrition is a known factor in good health. For people with a chronic diseases, nutrition plays an even more important role in healing and becoming as healthy as possible.
Here is a tip sheet put together by the CCDP Dietitian.
Each person experiences pain in a unique way, related to his or her history, culture, and attitudes toward health and illness. Also, the experience of a person with long-term, chronic pain is different than that of a person who has post- surgical pain or pain from an acute injury. Any approach to pain relief must take these differences, and the needs of the individual, into account. Many people have found the following strategies helpful in controlling their pain:
- Relaxation exercises and gentle stretching
- Massage therapy, physiotherapy, and/or osteopathic treatment
- Warm baths with Epsom Salts
- Acupuncture and acupressure
- Botox injections
- Local anaesthetic e.g. Lidocaine injections
- Nerve blocks
- Trigger Point Injections
Environmental sensitivities or intolerances can be common with some chronic diseases. Some people have symptoms when exposed to levels of substances that do not bother other people. These can include toxic substances such as cigarette smoke, petroleum products and pesticides. They can also include perfumes, dust, and moulds. The best way to avoid problems with these substances is to avoid being exposed to them (which can be difficult). You may not be able to control everything in your environment, but there are some steps you can take within your own living space, such as:
- Remove all sources of dust and mould (all those “dust-collectors”, houseplants, etc.)
- Raise your awareness about harmful cosmetics and discontinue use of toxic personal care products.
- Use cleaning products that are labelled “non-toxic”, “eco-friendly” or “safe” or make your own using baking soda and vinegar.
- Refer to a list of toxic substances found in cleaning and other products
- Avoid the use of pesticides and herbicides
- Keep the humidity in your house between 30 and 50 percent to reduce mould growth
- Remove carpets if possible. If not, use a HEPA filter vacuum for cleaning
Any long-term illness or condition can have a major impact on a person’s emotional health. There are many reasons for this, including:
- Having to deal with physical symptoms such as pain on an ongoing basis.
- The challenge of finding a diagnosis and effective treatment in a medical system that cannot always respond.
- Dealing with losses, including the ability to work and be employed at a regular job, the ability to enjoy strenuous physical activities, and/or the ability to function as a fully active member of a family.
- Having a disease that “doesn’t show” and dealing with people who do not understand chronic diseases. This can lead to feeling isolated with your disease.
- The knowledge that there is no known cure for chronic diseases.
Many people with chronic diseases have felt helpless and unable to do anything to improve their condition. It has been reported that those who have been able to change the way they think and feel about their illness have begun to feel more in control. They have developed coping skills and found good sources for emotional support.
Many people with chronic diseases find that joining a support group helps them connect with others who understand. They are able to gain emotional support as well as useful information. You may want to include family and friends in support groups that can help them understand and cope with the effects can have on families and friendships.