I was going through some old files and found a form I had completed for the long-term disability insurance company. It was written on July 24, 2007 during the time we were trying to contest their decision to cut off my income.
Through this blog, I don’t think I have been very specific of my daily issues during the very difficult times of adjustment. I thought this might give you, dear reader; a fuller understanding of what my life was before and after I got sick.
I used to be so proud of my stamina level, ability to work long hours and do it all. Energy conservation is the biggest and constant challenge.
We stay home more than we ever have in our married life. I used to cooked great dinners and we went out to eat 3 or 4 nights a week. Now dinner has become very basic and simple and we eat out less, currently about one night every two weeks.
One of the biggest changes has been not being able to play music. I loved performing with various groups and orchestras. When I became ill, it became impossible to even carry the instrument (string bass) and even more impossible to participate in the hours of rehearsals. I used to love to go to the movies but have gone to fewer than six movies in the past two years. I just don’t have the energy for it. I have been to several live concerts (mostly to see our son) where we have been separated from the crowd and provided very comfortable private viewing. These have required a great amount of preparation and recovery time.
I greatly miss contact with children. As I am still on prednisone and am currently on a bone marrow drug, I have no immune system so I try to also avoid large groups of people. I have experienced many reactions to the various drugs including: shingles, weight gain, excessive bruising, thrush, loose bowels, nausea, fatigue, high pressure in my eyes, increased sweating, leg cramps, swelling of feet and ankles, lose of bone density, manic (in the past), compromised immune system (Cellcept) and an increase risk of infection.
When I get fatigued, my saturation rate drop and I do not function well mentally. Memory problems are prevalent and I have lost much of my short-term memory for names and dates. I sometimes struggle to find a word. I am told that it is probably related to the decrease in oxygen. Concentration and focus problems abound. I used to devour books but at this point, I read magazine articles. I just can’t focus. Larger tasks feel overwhelming. I had begun some larger projects and found that I just couldn’t complete them (creating new photo albums, sewing a blanket, sorting music).
I have been a “walker” all of my life. As I child, we walked into town or to go to church. In high school, we often walked six miles to the shopping center for fun. While dating, my husband and I walked for hours and it has continued throughout our marriage. For years, after dinner we would walk along the main street in town. On weekend, we hiked or rode our bikes for endless miles along the coast. All of this has ended.
I cannot walk quickly. I cannot run up stairs. I cannot walk up long ramps.
For over a year, we took ballroom dancing lessons with the Arthur Murray Dance Studios and we used to love to dance with each other. This has become impossible.
I loved lotions and perfumes. Now I go through periods of super sensitivity to all aromas. While in this period, I can smell people’s deodorant and even the preservative in lipstick. I no longer wear much makeup or any lotions.
I have found it increasingly difficult to take care of my personal needs. After a shower, I take a break to catch my breath before I get dressed. Often I must stop dressing in order to get my breathing and sweating under control. I do not try on clothes at a store as I run out of breath. I need help with the laundry, food and clothes shopping, dinner preparation, housecleaning, gardening, and taking care of my spouse. I could not live on my own at this point.
I am in bed by 8:00 and usually asleep by 9:00. Due to the illness, I sleep on a foam wedge and I need 2 liters of oxygen at night. Insomnia has sometimes been an issue. The pattern is that I will sleep for 4 to 6 hours, be awake for 1 to 2 hours then fall back asleep for 1 to 2 hours. During these wakeful periods, I move to the family room and turn on the TV. After a few days of this pattern, I am so exhausted I take a single Tylenol PM that allows me a full eight hours of sleep. I know when I have over extended myself because I will sleep straight for 12 hours or more followed by several more days of extended sleep. I usually take at least one nap every day during the weekend and often take a nap after rehab, which may last anywhere from 20 minutes to 2 hours.
I have given up all caffeine except for a half of a cup of coffee every morning. If I drink more, I find that it makes me sweat, increases my heart rate and makes it hard to breathe. I still tend to panic in situations when I think I won’t be able to do something or breathe. Rehab has taught me to try to relax and control my breathing. Sometimes that is easier said than done.
I cannot breathe well in hot or humid weather. Our location on the coast in the perfect environment for my breathing: cool and moist. I had planned to work another 15 years and to retire to a less expensive area. We now need to stay in the area not only for the outstanding medical care but the necessity of a low elevation and a cool climate.
After reading it all, I am amazed how we have adjusted our lives so we can keep moving forward.
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