A Chronic Fatigue Syndrome / M.E. interview , Fibromyalgia.

Tars99's interview


How did all start?

I woke up feeling a little tired one day. Slight fever. So I took a day away from the gym. A week later, I still couldn’t get back to my exercise routine and I took some time off work. I never recovered.

Do you already have a diagnosis? How long did it take you to get it?

Yes. 4 years.

For what medical specialties have you been treated? What has been the most useful specialty for your?

I’ve seen rheumatologist, pulmonologist, cardiologist, endocrinologist, neurologist, and infectious disease. The most useful was the pulmonologist who just happened to be an excellent researcher, spoke with my other physicians, and coordinated care for me.

What has been the most useful thing for you so far?

Low dose naltrexone was the only thing that provided any relief. Pain reduction and increased sleep was experienced within 3 Days.

What have been your biggest difficulties?

Walking. My left leg simply can’t support me and sometimes I can’t even move it. The fatigue is also crippling.

How has your social and family environment reacted? Have your social or family relationships changed?

My social relationships changed dramatically. My then husband refused to believe there was anything wrong with me and encouraged me to push myself too hard. We are now divorced. My son was forced to care for me extensively through his teen years. My sisters have also helped. These have created strong bonds. Any friends who were not supportive had to be cut out. My current friends are always offering to help pick up groceries, and run errands. I would say there have been dramatic changes that were very difficult, but I’m able to see the silver lining in that my relationships now are more genuine.

What things have you stopped doing?

Hiking. Kayaking. CrossFit. Martial arts. Cleaning house. Shopping (delivery!). Cooking. Road trips. Family gatherings are limited. Grad school.

What do you think about the future?

I think doctors may figure this out but I plan for my future as if there is no cure. I’m still able to work but I think about the day when that will no longer be possible. I’m making plans so that it will not be a life-ruining event.

So far, which years have been the best years in your life? What have you done during them?

The three years before I came down with this illness were fantastic. I was in amazing shape and was always DOING something. I had energy for my son, school, building my career, and seeing th country. In those years I learned to value myself and to be happy with who I am.

What would you like to do if you didn’t have your condition?

Earn a PhD in physics!

If you had to describe your life in a sentence, what would it be?

Th bubble that contains my life has diminished greatly, but my spirit remains larger than ever.

Finally, what advice would you give to a person in a similar situation?

Surround yourself with good friends who support you; who appreciate who you are even if you can’t give them something. Brutally and surgically remove everyone else. Find your tribe. Love yourself.


Jan 18, 2018

By: Tars99

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