Living with chronic mononucleosis (Epstein Barr virus or glandular fever)

The Epstein Barr virus that causes mononucleosis, or glandular fever, has the ability to establish a lifelong presence in the body. In most people, a healthy immune system keeps mononucleosis in check. However, some people get recurrent or chronic mononucleosis weeks, months, or years after the initial infection.

Symptoms of chronic mononucleosis often include fatigue, weakness, sore throat, and swollen lymph nodes. These symptoms can fluctuate from day to day and from week to week. Periods of feeling good are often followed by a relapse, as people try to resume normal activities or exercise.

Living with chronic mono can be a very worrying and frustrating time. Constantly feeling sick, worrying about money, losing employment or study opportunities, losing independence, social isolation and receiving little support are just some of the things you may have to deal with. For some people the future is uncertain. You don’t know what’s around the corner. You don’t trust your body. Will you get better or worse? Can you get help and support? Are there treatment options? All of these factors can lead to anxiety, depression, and a feeling that your health is out of your control.

So what can be done in the midst of chronic illness to help achieve inner peace and happiness? According to spiritual teachers like Dr. John Demartini and Eckhart Tolle, instead of worrying about the past and the future, we can all be brought into the present moment to find balance. Always thinking about the past or the future can cause negative states of mind that distract you from the potential to enjoy a fulfilling life.

As bad as things get with chronic mono, hopefully we can find more comfort and joy in the simple little things in life. For some people with chronic mono who are bedridden, simple pleasures can be listening to music, audio stories, meditation tapes, or listening to birdsong outside.

For those who are more mobile, simple pleasures can be as easy as cooking, painting, playing around the house or garden, cleaning out a drawer, putting family photos in an album, finding an absorbing hobby, or doing some meditation or yoga. Some people find pleasure in helping others; This could come from reading to children, talking with friends and family, caring for animals, or joining online forums or support groups to contribute your experiences and advice about chronic mononucleosis.

When I had chronic mono for over 15 years, my simple pleasures were things I longed to do every day. They gave me a sense of accomplishment and pride, and I’m sure they kept me sane. Some of the activities that helped me were sitting in the sun every day, enjoying spicy chicken soup, relaxing in a hot bath with Epsom salts, doing yoga every day, and immersing myself in books on health and alternative therapies. In fact, it was during this time that I decided to pursue a degree in naturopathy and launch my career in a different direction.

For one of my very sick Epstein Barr patients, all he could do was lie on his back in a dark room. His eyes were so swollen and sore that he couldn’t even read a book or watch TV. Instead of getting depressed and sad, she focused on listening to beautiful music that would inspire and renew her.

Another one of my patients who was a teenager was isolated from her school friends and social circle because of Epstein Barr. She had terrible symptoms like red and raw throat, extreme lethargy, depression and little to no appetite. Her mother kindly went out and bought her the entire series of the TV sitcom “Friends,” which they watched together on the couch. Her mother says this gave them a chance to laugh and focus on something instead of the illness all the time.

Even with chronic mono, there must be many things in your life that you really love and enjoy. Starting to reflect on your daily life and seeing if there is anything you can be grateful for is a good start. Enjoy the beautiful and special moments of your day. You may even want to write them down in a journal or diary, or photograph them.

I recently read an article about a photographer, Hailey Bartholomew, who embarked on a personal project called “365 Days of Gratitude.” Every day for a year, Hailey took a single photo of something she was grateful for. Her photos range from the simple delights of her favorite food, autumn leaves in her garden, shells on the beach, her warm and cozy bed socks, herbs growing in her garden, her craft work, scented candles, and images of her family. This simple daily act of focusing on the positive things in her day changed her depression and stress into a state of anticipation, satisfaction and joy.

Teaching yourself to be aware of and appreciate the small moments in your day can enrich your life and make your journey through chronic mono a little easier. Life will always have its ups and downs. Being grateful for what you have is a valuable lesson that we all need to learn. Even when you’re over mono, being grateful is a life skill you’ll never forget.