Lgal4's interview
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How did all start?
Fibromyalgia got worse and I collapsed at work.
Do you already have a diagnosis? How long did it take you to get it?
I didn't have CFS/ME diagnosus at the time. It took about 1 year or 2 to find the right doctor.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I have an internist, family dr, rheumatologist, gastroenterologist, cardiologist and endocrinologist. Adding a neurologist shortly. My internist was most useful & diagnosed the CFS/ME. I still travel 3 hours away to see her when needed. My rheumatologist would be next.
What has been the most useful thing for you so far?
Accepting I have this diagnosis and there is no definitive test, treatment or cure.
What have been your biggest difficulties?
Exhaustion, Chostochondritis, pain, heart issues, numbness are biggest problems medically. Feeling unworthy, like a burden, lost identity. Losing friends and my independence has been difficult.
How has your social and family environment reacted? Have your social or family relationships changed?
I have to rely more on my family. My immediate family and true friends have been great supports. My family gets tired of helping more than usual though I think. I believe many people also get tired of hearing my complaints of pain or bad treatment by doctors on fb, but I have no where else to vent.
What things have you stopped doing?
Going many places or traveling. Pushing myself too hard. Eating foods I'm allergic to. Unrealistically hoping for a cure.
What do you think about the future?
I take it moment by moment. Everything changes that fast.
So far, which years have been the best years in your life? What have you done during them?
My years with my family, raising my kids, getting my college degrees and working doing what I loved.
What would you like to do if you didn’t have your condition?
Work, travel, take a walk without help, go out more, help others if I had my current perspective and was cured.
If you had to describe your life in a sentence, what would it be?
I love and am proud of my family and of my past accomplishments.
Finally, what advice would you give to a person in a similar situation?
Hold on to each precious and happy moment no matter how far and few between.
