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Page 3
Another fear is that, given the rate of deterioration over the past 3 years, unless the thing slows down, I will be in a wheelchair in 5 years' time. I don't think I could handle that.
Lastly, because of my relative inactivity, my general health is suffering - my overall fitness that I worked so hard on while I was in the Air Force has suffered so much now, that I couldn't drive a golf ball now, let alone play even 9 holes.
Other - Anything you would like to address that wasn't covered by the other questions? A concern is the general lack of knowledge, expertise and understanding of how this thing affects our lives and those around us, particularly by the medical profession. Also, the general attitude of employers towards the 'invisible disease' is quite appalling. That was one reason why I left my previous job, and why I have failed to find another. I will not deceive an employer into giving me a job when I know that there will be days when I just won't be able to cope. I think it is just the general feeling of despair at the impairment of earning ability that hits men that much harder. I have earned precisely $170.00 in the past two months, and I feel terrible about it. It's not that I feel guilty about leaving the breadwinning to my wife, she has always worked. It is more a self-worth thing, and that is very hard for the male psyche to accept. Also there is the feeling that, although people know I am ill, they still have the thought that I really should be out at work. I find that particularly true of people who come to the house during the day, the postman, gas engineer, etc., who do not know me that well. Also, there is a very strong feeling of having been deprived of some of the best years, when I am wise enough and have enough money to enjoy them. I know I should be out flying gliders (I stopped when our first child arrived), playing golf, walking as I used to do for miles in the mountains. Instead I have to drive there, potter about for half an hour and sit in the car looking at the view. I feel like a frail old pensioner of 90, and that hurts. MDAdvice is an excellent site for information pertinent to men's health issues.
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