Some days are better than others, but no day is ever "normal" for me. If normal is pain and fatigue free then I never have a normal day and am so scared that I never will again.
I remember times when I worked 60 hours a week as a nurse at a hospital working 12 hour shifts. Now, I call that pain free and full of energy. And.....without the punishment days and days later.
Now, if I go outside my "envelope" I pay for it for 3 or more days with severe fatigue. Fatigue really isn't the correct description for what I really feel.....it's more like complete exhaustion. Sometimes there are weeks that I house bound and sometimes there are weeks that I chair/bed bound. My will to live and quality of life are so suffering at the moment. I wish I could just snap back, but after over 14 years of different levels of experience with these disease processes....I am now sure I won't be snapping back.
Can you believe that I have no physician at the moment? I have been refused treatment by one doctor due to the inability to pay her high prices at the moment, she's been my FM/CFS/ME physician for 2 years. I called yesterday 3 doctors in my area to find a primary care physician just to have a doctor to manage my medications and handle things unrelated to my illness such at colds, sprained ankles (which I have now) and was told I'd be referred to a pain clinic which is expensive, to monitor my narcotic pain medications. I need these medications to keep the pain down to a level that allows me to function on a daily basis. Another doctor's receptionist asked me point blank if I was on any narcotic medications and told me they had a policy not to accept patients taking narcotic pain control medications. Being a nurse, I am absolutely ashamed of these people as they are part of the family I chose to spend my lifelong career with. And, I'm very upset that any doctor would treat a person that had spent 17 years of her life taking care of others and with care and concern for their well being. It seems none of these people care for my well being. I feel absolutely neglected and mistreated.
I wish others with any illness peace and luck in their care. I hope they all are treated like human being not just someone with a pill to monitor and a disease they no little about.
I remember times when I worked 60 hours a week as a nurse at a hospital working 12 hour shifts. Now, I call that pain free and full of energy. And.....without the punishment days and days later.
Now, if I go outside my "envelope" I pay for it for 3 or more days with severe fatigue. Fatigue really isn't the correct description for what I really feel.....it's more like complete exhaustion. Sometimes there are weeks that I house bound and sometimes there are weeks that I chair/bed bound. My will to live and quality of life are so suffering at the moment. I wish I could just snap back, but after over 14 years of different levels of experience with these disease processes....I am now sure I won't be snapping back.
Can you believe that I have no physician at the moment? I have been refused treatment by one doctor due to the inability to pay her high prices at the moment, she's been my FM/CFS/ME physician for 2 years. I called yesterday 3 doctors in my area to find a primary care physician just to have a doctor to manage my medications and handle things unrelated to my illness such at colds, sprained ankles (which I have now) and was told I'd be referred to a pain clinic which is expensive, to monitor my narcotic pain medications. I need these medications to keep the pain down to a level that allows me to function on a daily basis. Another doctor's receptionist asked me point blank if I was on any narcotic medications and told me they had a policy not to accept patients taking narcotic pain control medications. Being a nurse, I am absolutely ashamed of these people as they are part of the family I chose to spend my lifelong career with. And, I'm very upset that any doctor would treat a person that had spent 17 years of her life taking care of others and with care and concern for their well being. It seems none of these people care for my well being. I feel absolutely neglected and mistreated.
I wish others with any illness peace and luck in their care. I hope they all are treated like human being not just someone with a pill to monitor and a disease they no little about.
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