How to live with chronic fatigue syndrome?

Do you feel like you have no energy in the morning? Do you feel so tired that you can't get out of bed for days, even after doing a little work? This may not be just normal fatigue. Today we are going to talk about ways to make living with a condition called Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), easier. This is a complex condition that can have a big impact on your life. But don't worry, there are ways we can manage this condition and live well.

Understanding the nature of the disease: good times and bad times

When you live with this condition, you will understand one thing very well. That is, not everything is the same. There are times when the symptoms are very severe and the body can go through a very difficult time. We call this a ``relapse``, which is a period when the disease worsens. Then, after a while, there may be a period when the symptoms subside and the body feels a little better. We call this a ``remission`` period.

Think of your body's energy as a phone battery. A person with this disease's battery drains very quickly, and it also takes a long time to charge. So, we need to be very careful about how we use the battery.

Daily tasks and energy management

During a relapse, you may find it difficult to do simple tasks like washing yourself in the morning or changing your clothes. So, set aside extra time for the tasks that you find difficult. Don't panic. Just do them.

However, during a period of `remission`, you may think, "Oh, I'm feeling better today, I need to get some work done." Don't do that! If you overexert yourself all of a sudden, you could end up completely exhausted in the next two or three days. If you continue like this, you're more likely to have a serious `relapse`.

Therefore, even during times of good health, it is essential to maintain a good balance between rest and work . Always be aware of your energy levels.

Exercise: Something to do with caution

While exercise is important for staying healthy, exercise can be a bit tricky and requires caution for someone with chronic fatigue syndrome. Even mild exercise can cause unbearable fatigue. There is a special name for this condition called `Post-Exertional Malaise (PEM). Simply put, it is the extreme fatigue and worsening of symptoms that occur after even mild exertion.

So what should you do?

The best thing to do is to talk to your doctor or physical therapist to find out exactly what your body can handle in terms of physical and mental activity. This is called your "energy envelope." You need to stay within this range and learn to balance rest and activity. This will help you avoid the "PEM" condition we mentioned.

• Have your exercise plan developed by a physical therapist.
• Never work too hard.
• Pacing is the most important thing.

Diet can make a big difference

Being mindful of the foods you eat can go a long way in managing your symptoms. In particular, avoid foods that you are allergic to, foods that you are sensitive to, and foods that contain chemicals.

Many people say that a diet similar to the Mediterranean Diet is beneficial for this condition. That is, a diet low in saturated fats and refined carbohydrates, and rich in polyunsaturated and monounsaturated fats.

Another thing is that eating several small meals throughout the day , rather than one big meal at a time, can help keep your energy levels consistent. For example, it's better to eat 3 main meals and 3 small snacks in between. This can also help control nausea.

Memory loss and "Brain Fog"

Another major symptom of this condition is memory loss and a feeling of ``brain fog''. You forget things and have trouble concentrating. There are a few simple ways to help with this:

• Use a diary or a ``Day-planner``: Write down your tasks, appointments, and to-dos in it.
• Set reminders on your phone: Set a reminder to remind you when you need to go somewhere or do something.
• Make a list: Make a list of things you need to bring when you go shopping, like a list of tasks you need to do for the day.
• Use sticky notes: Write down things you need to remember on small pieces of paper and stick them in easy-to-see places.
• Exercise your brain: Puzzles, word games, and card games can keep your mind active. These can also help improve your memory.

Work, relationships and mental health

Job

Working with this condition can be a challenge. If you are having problems at work, you should talk to your employer about this. You may need things like a flexible work schedule, some time off during work, or written instructions because you have memory problems. These will vary depending on your symptoms and the nature of your job. If the condition is severe and you are unable to work, talk to your doctor about what steps you can take.

Relationships

This is probably the hardest part. It can be very difficult for your family, friends, and partner to understand this condition. They may say things like, "You're bored," or "You're tired just from being around." Because to an outsider, this fatigue is invisible.

This condition can affect your social life, playing with your children, and personal relationships. It's very important to talk about these things openly and get everyone's understanding.

Mental health and getting help

Remember that you are not alone. Talking to others who are going through the same thing can be a great source of comfort. Ask your doctor about support groups in your area.

Depression is more likely to occur with this condition. Some of the symptoms of depression are similar to those of this condition, so it can be difficult to distinguish between the two. Feeling hopeless, constantly sad, feeling worthless, and having thoughts of ending your life can all be symptoms of depression.

If you think you may be depressed, please talk to your doctor. Medication and talk therapy can help with both physical and mental symptoms. If you are having thoughts of suicide, go to a hospital Emergency Unit (ETU) immediately or call the National Institute of Mental Health of Sri Lanka on 1926.