I went for a Tui Na massage yesterday. Thirty minutes of the painful, torturing massage costs as much as what we spend on food for 5 days. That is not a small amount of money, considering how tight we are at the moment.
I felt tortured; both by the deep pressure applied to the painful knots, and the thought of how much I spend on it. Yet, I had somehow convinced myself that it is money well spent. This would prevent this episode of fibro from going full steam.
This is how I have been coping lately. Recognising the early signs and symptoms, and trying out different medications and ways to lessen the intensity and duration of an episode. I do what I think is best and working for me, independent of “medical advice” etc. Other than two good common sense advices which are backed by reasonable evidence – sleep well, exercise more; I am on my own.
The amount of self-reliant in managing this horrible- physically, mentally and psychologically destructive disease is showing in the piles of books in my room. There is a big pile of books and articles related to my area of PhD research near my table and bed. Beside my bed, there is another equally huge pile of materials on anything under the sun that might explain my symptoms, or promise some relief.
I sometimes wonder whether my education and training is a curse or a liberator of my situation. Here am I, an “expert” in my own right who is often consulted on the interpretation of medical related literature by my peers, struggling to go through the chunk of largely speculative information about my situation. Most of these “medical information” is coloured by the opinion of medical “experts”, or constructed and timed to support opportunities of making a quick buck from selling the “cures” or drugs. From what I see, there is even a struggle to define what fibromyalgia, chronic fatigues symptom and chronic myofascial pain is. It is ironic how medical professionals can tell patients what to do and what not to do when they themselves are ignorant of the actual pathology, ie cause and nature of the disease (s).
I struggled for a while about going for Tui Na and Thai traditional massages in my early days (even when it seemed to help for me), because the so called evidence and medical opinions were against it. My peers thought I was doing something ridiculous, as patients have always been advised to stay away from massages when there is a “flare”! I was urged to abandon these crazy ideas and go for good, proper medical care with an expert. I wonder if they realised that they had unknowingly insulted some of the best rheumatologists in town with that remark. If I am not what I am, will I face so much pressure from doing what seemed to feel good? Or would I be even more susceptible to other pressures and try out all those “quack” cures. Who knows, one of those quack cures might offer some real benefit, but I am not trying it out at all because it failed my “medically sensible” test.
[If there are some stupid, glaring mistakes or incoherent sentences in my blog, it is “normal” for me when I am in this state ie not feeling well. I usually double-checked it, but somehow not able to spot those mistakes. If you were me, how would you feel? Once upon a time, I was a freelance writer, contributing medical related articles. My writing these days esp when I am feeling unwell is definitely “shit”.]
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