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Living with chronic fatigue syndrome

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When the doctor told me I suffered from Chronic Fatigue Syndrome, I instantly understood that it was a disease that caused a person to feel weak and tired for many years. But, I did not understand why was I suffering from it because I always ate untill I felt fully contented and never skipped my meals. My later discussion with the doctor helped me understand this disease better and make appropriate changes in my life. I am sharing with you my experience with Chronic Fatigue Syndrome and how I started living with this disease.

Waking up in the morning

Waking up in the morning really has no meaning for me because I hardly get a few peaceful hours of sleep. I get severe pain all over the body throughout the day as well as night because of which I can neither do my routine activities properly, nor get enough rest at night. I get up in the morning just because I have to rush to my work. But, I feel too drowsy due to the lack of sleep. Sometimes, I take a sedative at night, which helps me sleep well without any muscle pains.

Starting the day

I feel no different than any person who might be suffering from a disability. This disease has made me dependent on others for my routine activities. It is rightly caused Myalgic encephalomyelitis. Yes, that’s the other name for chronic fatigue syndrome. The term ‘Myalgic encephalomyelitis’ describes my condition better. ‘Myalgic’ means pain in the muscles and ‘Encephalomyelitis’ means inflammation in the brain and spinal cord.

So, in short, I am having muscle pains because of the inflammation in my nervous system. I feel as if each and every part of my body is throbbing with pain including my muscles, joints, back, and head. So, you can imagine how difficult it must be for me to get up from my bed, brush my teeth, take bath, and travel to and from office. Even a small task like getting up from a sitting position unnerves me, such is the intensity of the pain!

Breakfast, lunch, and dinner

My doctor advised me to make some changes in my diet if I want to live better with this disease. He asked me to eat plenty of green vegetables and fresh fruits. It was needed so that my body is not deficient in iron and other essential minerals and vitamins. He also asked me to limit my intake of dairy products. I never had any problems with consuming milk. Yet, I followed his instructions and I must say, my energy levels have soared up since then. Another change in my diet that has helped me is avoiding coffee.

I used to drink several cups of coffee every day because I thought it was a good stimulant and would help me feel fresh and energetic. But I was wrong. The doctor revealed the fact that caffeine in coffee can have long term negative effects and make a person feel weaker. So, now it’s a big ‘No’ for coffee from me. Also, instead of 3 large meals, I eat small meals every 3 to 4 hours. I include starchy foods in my diet to keep up my energy levels.

Going to work and taking medications

It was disheartening for me to know that there is no known cure for chronic fatigue syndrome. Since I was diagnosed and I've started living with chronic fatigue syndrome I can only take medications to relieve the symptoms, and supplements to prevent deficiencies. I have been using painkillers to ease my muscle and joint movements. I also had to take antidepressants for a short period about 2 years back. The constant pain and restricted life caused due to this disease had engulfed me and I was drawn into the deep, dark world of depression.

Luckily, the timely help and support from my family and the doctor helped me to set myself free from the clutches of depression. Also, the doctor has clearly told me that it is not the medications, but the way I manage my routine that will help to control the disease. This has caused a few problems in my professional commitments. The doctor told me it would help if I try to get frequent short naps interspaced throughout the day. It is rest and not the actual sleep that is beneficial.

So, I take frequent breaks during my working hours, with each break not lasting for more than 20 minutes. This rest period helps me regain my strength and allows me to concentrate on my work for another 2 hours. However, taking breaks has reduced my productivity and so my chances of pay hike and promotion!

Prevention of complications

With severe joint pains, muscle pain, and weakness, it has become very difficult for me to concentrate on any activity. Whether I am at home or the office, the pain does not let me enjoy any activity. Because of this, I have been reduced to a state of a living potato! But, I have not given up. I am ready to fight this disease and maintain the quality of my life as much as possible. I take proper precautions to prevent pain and other symptoms so that the disease does not progress and cause complications like depression.

I have adopted natural relaxation therapies like yoga, and breathing exercises. I do not have to exert myself too much for performing them. These techniques improved my living with the chronic fatigue syndrom and have helped to improve my pain, as well as sleep problems. It has also reduced my stress and anxiety. I also eat a balanced diet so that my body gets all the nutrients. I have been advised to undergo graded exercise therapy, and cognitive behavioral therapy. These therapies have also helped to control my disease to some extent.

What are the daily limitations and what are the fears?

Not being active enough in itself is a major problem that Chronic Fatigue Syndrome has caused. Additionally, I also have to deal with the fear of recurring infections due to weakness and lowered immunity. Even a minor infection can worsen my feeling of tiredness by several folds. I have to take proper hygiene precautions to make sure I am safe from bacteria and viruses. However, there is very little I can do about the social isolation. I rarely go for social gatherings and avoid meeting anyone.

I have lost touch with the beautiful world that lays outside. The only time I venture out of my home is to go to my office and only I know how much I long to be back to the comfort of my home. I feel very insecure when outside as I fear no one will come forward to help me in case I lose my balance or meet with an accident due to this illness.

What would be my life with chronic fatigue syndrome in the future?

I have already started developing side effects due to the long-term use of painkillers. I am experiencing abdominal pain, gastritis, and heartburn due to these medications. Well…. So, to prevent this, I also need to take antacids.

I suppose the future might be worse as this disease is known to progress with time. I have to make arrangements to ensure a financial stability of myself and my family before a state comes when I will not be able to continue working! It’s very scary to even think of the days when I will be dependent on others physically, as well as financially!

What are the risk factors?

I am not sure why I am suffering from this disease. Even doctors are not aware of the exact causes of Chronic Fatigue Syndrome. It seems to affect women more than men; however, that doesn’t mean men are safe from it and I am the example of this! My doctor said I might have developed this disease due to mental stress. I agree with his opinion because I remember the stressful period I was passing through when this disease started showing its signs for the first time in my life.

The evolution of Chronic Fatigue Syndrome

My doctor has told me that most patients with chronic fatigue syndrome can return to a completely normal life, even though it may take a long period of time. But I suppose I do not fall in this category because I am experiencing a fluctuating pattern of symptoms with bad as well as good periods of health. I experience an exacerbation especially when I develop an infection, and fever, or experience a stressful event. I have understood the pattern of evolution of this disease and doing my best to prevent exacerbations by trying to prevent infections and avoiding stress. Since I started living with chronic fatigue syndrome, practicing yoga has helped me a lot in this regard.

What are the psychological effects when you have Chronic Fatigue Syndrome?

Chronic Fatigue Syndrome has affected me physically as much as it has affected me emotionally. I am racing against time to do in just a few years what I could have easily done in 15 to 20 years if I was not suffering from it. I have to secure my future before this disease leaves me disabled. Additionally, there is also the fear of increasing joint pains and the inability to do simple tasks. I am not sure what lays ahead for me in my life. What I will be able to do and what not depend entirely on how Chronic Fatigue Syndrome progresses!

Topics: Chronic fatigue syndrome

Dr. Jyothi Shenoy

Written by Dr. Jyothi Shenoy

Dr. Jyothi Shenoy is a doctor having a clinical experience of more than 15 years. She has an expertise in treating acute and chronic diseases like obesity, IBS, asthma, arthritis, Autism, ADHD, hypertension, diabetes, high cholesterol, allergies, cancer, infections, and skin diseases. She believes in treating the patients in a holistic manner. She aims at educating the patients about the illness and providing tips related to their lifestyle and diet to ensure a long-term relief from the disease and preventing its recurrence.