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by Eunice Beck, RN
October 24, 2001
Dear Friends,
I’m learning again how difficult it is to deal with loss. I recognize that there are certainly levels of loss. How can I not, with all the lives lost in recent catastrophic events, and all the families affected. But in this case, I’m talking about personal loss. The things this disease takes away from us.
Of course, there are the physical losses. The fatigue that prevents us from doing the things we need to do, as well as the things we enjoy. How it interrupts our sleep patterns and prevents adequate rest and recovery. The pain we must deal with on a daily basis. Waking up in the morning, perhaps already in pain, or wondering what different part of your body is going to hurt today. The feeling of loss of one’s self due to brain fog. These are difficult challenges we need to meet almost every day.
Then there are the emotional losses. Diminished self-esteem as one sees an increasing loss of the ability to function, both physically and mentally. And the depression that goes with one’s lack of control over the changes that come with this disease. I am feeling so many of those things right now, as I try to deal with what it means to no longer be able to work. My dignity and self respect are severely injured.
There is the issue of missing the work you did. I was an active nurse for over 30 years. I miss my patients. But also involved is the feeling of no longer being a contributing member of society. Although in my heart I still consider myself to be a nurse, my head tells me that I am not; that I am now a drain on society. I feel like I am losing yet more of myself. My head also says that with all my education and experience, there should be something I can do in a professional setting. But I know that the confusion and lack of alertness would make me a danger in any patient care setting. My level of fatigue would make it difficult to function physically, and would make me even more incompetent, because the brain fog increases with my fatigue level.
Perhaps the most difficult thing is what is happening with me right now. What my inability to work is doing to my family. We have always been a two-income family, as are most in this society. When my spouse became disabled at a very young age, we were lucky to have good medical retirement from a government position. With only minor difficulty it went from short-term disability to long term, with very good coverage for the first three years to give us time to get through the Social Security maze.
Unfortunately for us, I am not so well covered. I live in a state where we do have a good state short-term disability plan, which covers up to a year. Mine ran out in September. I applied for Social Security as soon as my doctor and I were convinced that I would not be able to return to work, even part-time. I also have Long Term Disability coverage through the position I had when I was placed on disability. I also applied for it , about the same time as Social Security. I have been denied the first time by both, although my Social Security denial was only about two months ago, and I still have not received a letter. Thankfully, I have an attorney, and his office learned this via a phone call to Social Security, so the appeal is already in. I have also appealed the LTD denial.
I know there are many of you who have been through this same situation, or are going through it now. Don't give up! There are many in this country who are facing tough times due to job cuts and disabilities. There are many of us right now feeling like our lives are spinning out of control. Remember, you are not alone.
This disease does indeed take its toll, physically, mentally, and emotionally. I know there are others whose losses are much greater than mine, whether from illness or due to other circumstances. But I needed to write about how I am feeling. I know many of you have been there. I thank you for reading my column, and making this journey with me. Take care and be well.
Yours in health,
Eunice
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I welcome your comments and questions at: copingcorner@prohealthinc.com. My articles and email responses are not being offered as those of a health care provider. The information and opinions included are intended to give you some information about your disease. It is very important that you empower yourself with knowledge and participate in your own search for care. Any advice given is not intended to take the place of advice of your physician or mental health care provider. Always follow your physician's advice, even if contradicted by something written here. You and your physician know your situation far better than I do. Thank you and be well.
Eunice
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