I will be adding more pages to my Sanctuary about these diseases and hope to educate more people about them. I only hope in the future doctors will be able to help diagnose people suffering from these diseases easier than they do now.
First I want to say that I am not a doctor and I encourage anyone reading these pages to see a doctor if they feel any of these symptoms describe how they feel. Many things can and do have these same symptoms and need to be ruled out by your doctor. Make sure you find a doctor that you can trust and who will listen to you. You know your body more than anyone and you know if what you are feeling is normal for you or not. If you discover that you do have one of these or perhaps something similar, find a good support group. I did and it was great finding others who were going through many of the same problems and understood what I was feeling and why.
I am not a stranger to grief and I know how depression feels but I will not let anyone, stranger, family or friend make me feel that grief and depression is my problem. I am now grieving over the loss of my ability to be my old energetic and hard working self. I want to feel good again. I don't like feeling like a second rate citizen. This is a real disability that thousands of people suffer from. Just because we look healthy doesn't mean we aren't suffering. Read about these and other similar diseases before you judge someone or make jokes about them and their disease. Don't decide for yourself that they are just being lazy and should just "Get over it". We didn't wish this upon ourselves.
This has been going on with me longer than I like to think of. I have counted up the doctors I have seen just in the last 3 years. I have seen 10 different doctors, mostly specialists and I have had about every test under the sun. I realize they have to rule out many things that may be causing all of this pain and the dizziness. Until 10/11/00, I was working and always tried to keep a smile on my face to hide how I was really feeling. I was working as a Social Service Director at a nursing home and I felt the pain needed to be hidden because of the elderly people I was working with. The being dizzy, I could not hide. I became afraid to drive these people around to their appointments, afraid that I would have an accident or drop somebody because of being dizzy or weak.
My employers insisted that I needed to be able to drive or quit working. They added driving to my job description on 8/31/00 knowing that I was having problems. My doctor filled out 2 forms stating I could do my office work still but no driving or heavy lifting. Still, on 10/11/00 they insisted that I take FMLA (Medical Leave). This is unpaid but at least I can keep my Insurance for 12 weeks as long as I pay the premiums. I hadn't been officially diagnosed with the NMH or CFS at the time. Meanwhile, the pain is getting worse and I constantly walk around feeling drunk because of the nausea and being dizzy. My brain fog is also getting worse. I have always been someone who worked at fast speed and I find myself having to go over everything 3 times before I get it correct now.
I know at work, they felt like I was just being lazy and trying to get out of driving and other work. This is not true. I did not wake up all of a sudden and decide, "Gee, I think I will be lazy now and quit working so hard. I think I will do something to lose my job and be hurt financially so that my husband and I can go in debt even further than we are and end up in bankrupsy court. I think I will enjoy people looking at me like I am lazy and not worth a pile of beans." Every job I have ever had in my entire life, I worked my tail off at. Always put in extra hours if needed and did both physical and mental labor.
We also dealt with Alzheimer people at the home and I am learning how they feel. I know what it is like sometimes to forget things so easily and not be able to say the words that we usually know.
I used to joke around about how I was feeling by saying I had TB (Tired Butt) or Dropsy (always sitting down before I fell down), or had a Brain Fart (Mind not clear). OK....I will get off my soapbox for now but I will probably have more writings as time goes by. I refuse to let this keep me down.
So, if you have been diagnosed or you know someone who has been, with NMH, CFS, FMS or any of the other multitude of diseases that can not usually be seen but felt; I say......Don't let others judge you or your loved one, friend etc. We have only one judge and until people walk in your shoes, they can't know how you feel.
My Anger and Church
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