How would you explain chronic fatigue syndrome to someone?
How would you explain chronic fatigue syndrome to someone who knew very little about it?
The background: my stepsister has had a myriad of health problems - depression with manic tendencies, endometroisis, chronic pain and most recently chronic fatigue. She is around 30. Her father (my stepfather) is a good guy and really wants to understand but really doesn't 'get' it. I think both are struggling with what they should accept as 'how life is' (eg needing to use a wheelchair because walking down to get the mail is exhausting) vs. what they should be able to 'fix' in some way, or when a little physical activity might build strength (or when disuse makes it worse) vs. lead to days of exhaustion. I think his ability to understand is compounded by the fact that he has had major health problems with significant fatigue issues that he was able to fix by powering through, building strength slowly and diagnoses/medications - so it's really hard for him to accept there isn't some sort of solution for his daughter. Or maybe there is, we just don't know it. Suggestions for dealing with it (as the patient or the family) most welcome.
I have very little experience with or knowledge of CFS and I'd really love if people had experiences or resources someone could point me to. We're pretty early in the process, but definitely all a little confused by it. (there is a bit of emotional baggage between the two as well, but I am Switzerland and refusing to take sides )
There are some good articles out there that legitimize CFS if there are those who don't believe that the symptoms are problematic. However, I tend to be of the school of thought that CFS is not really a diagnosis itself, rather a description of a set of symptoms that can often be treated, most successfully in a holistic way.
I was diagnosed w/ CFS, but the problem with diagnosing someone is that often the person BECOMES the diagnosis, and then it becomes a self fulfilling prophecy. I had the most luck with lifestyle changes, diet, exercise, taking good vitamins and supplements, and acupuncture. As well as making a plan for sleep and taking what my body was telling me seriously. I don't believe I had a "disease", I believe my body was trying to tell me something, and if you listen, you can often make changes that will be effective.
I know what it's like to not be able to get out of bed in the morning, and to feel like everything is a tradeoff- if I do this today, I won't be able to do THIS tomorrow, type stuff. But the changes I made and stuck with made a huge difference and it was all through self education on the organs and what they need thrown in with a touch of Chinese medicine and a dash of common sense.
Most docs are only interested in TREATING, not HEALING and therefore, you will never get to the root of the problem. I kept digging until I found docs interested in healing.
Good luck to your stepsis, I hope she finds some solutions that work for her!!!