Looking for some information, I bumped into this blog written towards the beginning of my long road of living with a bad diagnosis. It is filled with so much that may be helpful for those also beginning the journey. The newly diagnosed. Here it is:
I thought this might be of interest. It is very personal and brought back some bad memories. It was part of the application for the long-term disability insurance and written on July 24, 2007 – approximately 18-months after my lung biopsy. I have come a long way physically from where I was back then, thanks to rehab. Specific questions were asked but I no longer have that paperwork. What I do have are the answers which are below. Don't miss my comments at the end.
1. I have discovered that there is no typical day. My day depends on what I did the day before, what I need to plan to do the next day and what I must do that day. Through trial and error, I have found that I can do two adult daily living activities per day: shower, rehab, light gardening, cooking dinner or dining out. Due to rehab and increased muscles, I have found that I can sometimes add a third activity and not suffer the following day. This must be planned ahead in order for it to be successful. To continue making the bed, rehab has taught me to put blocks under the feet of the bed so it is higher as this will lessen the chance of being out of breath. We recently purchased a higher bed. (Being out of breath means that my organs are not getting the proper amount of oxygen.) I take a short, tepid shower every 3 to 4 days, as it is exhausting and it must be planned. I can blow dry my hair due to the muscles I have developed in rehab. Sometimes I become short of breath during it but not too often anymore. Afterwards, I still need to pause to control my breathing. On shower days, it takes quite a lot of work and energy to dress for the day. I drive just over an hour round trip to go to Pulmonary Rehabilitation twice a week for 1.5 hours and I do the same workout routine in another hospital 2 or 3 days a week. Rehab is my first priority. I need muscles to help survive the upcoming lung transplants and to get underneath the needed BMI. After rehab, I usually come home and rest (often nap), make or return phone calls or answer e-mails. Sometimes I enjoy working on word or card games to exercise my brain. We sometimes take a short car ride into town after dinner, just to get out.
CHANGED: My life before my illness was dramatically different. I have listed many of the differences under #12. Nothing can happen on the spur of the moment. Everything must be planned so I can conserve energy. I still struggle making myself slow down. My son recently lectured me about trying to talk and walk at the same time. I just don’t have the breath. We used to entertain a lot. All family gatherings were at our home. That is just not the case anymore. In the past, we hosted three weddings in our home, I prepared all the food, and I cleaned my house and worked in my gardens. I used to be very social and upbeat and now I avoid seeing people who don’t know I’m ill, I’m more reserved and very envious of people who can function unimpeded. I used to enjoy working, traveling, shopping, taking hot showers, cooking large gourmet dinners, hosting parties, and performing music. My husband and I used to take long walks along the coast every weekend. We longer can take long walks together. He has become a caretaker.
2. All meals have become very easy and light. Breakfast may be a hard-boiled egg and lunch may include leftovers or hot food from a supermarket. My husband and/or I make dinner. We have learned in rehab that in order to save my energy, we cook one thing to last for 2 or more nights. Dinners are often a shared packaged salad and protein baked in the oven or in a skillet. The leftover protein is served the following nights. As an example, we often cook a turkey breast that we eat with a vegetable one night and in a salad the following night. It is also served for lunch. All meals are served on paper plates to save my energy of washing the dishes, putting them in a dishwasher, then putting them back into the cupboard. Often the items in the sink are just forks and glasses. My husband often cleans up from dinner. We usually eat around 5:00. Gone are the days of large homemade dinners.
3. At least once per week I need medication refills at Longs Drugs. We food shop together every week because I become overwhelmed and it is difficult for me to bring the groceries into the house. I do not shop for clothing very often and we purchased most of the Christmas presents in one day or online.
4. We have just hired a gardener (NOTE: I fired them within a week.) as I have recently found that I do not have the strength or energy to maintain the gardens. My husband has handled the heavy trimming for a while. We have help with the housecleaning as that is clearly beyond what I can do. I can put clothes into the washer but find it difficult to transfer them to the dryer, as they are just too heavy. My husband also moves the dry wash into the bedroom.
5. The goal is to leave the house five days per week for rehab (whether I feel like it or not) or doctor appointments via automobile. My husband and I often go food shopping, pickup dinner or go for a drive on the weekends. I always take naps on the weekends.
6. If it can be planned ahead, I try to always accept an invitation to meet people for lunch or coffee. I feel that this contact with healthy people and rehab are the reasons that I am not on anti-depressants. Connecting with friends to talk about other things besides my illness is life saving. In the past few years, there have been weeks between invitations but recently; I have been having lunch with a friend almost weekly. I plan for and really look forward to these visits in which we very rarely talk about my illness. It is also extremely rare to have people over to our house. If we do, we serve prepared food from the market on paper platters. My mother comes to visit for 2 to 3 days every three to four months. She takes care of me while she is here and leaves the house cleaner than when she arrived. She and my son are the only people we have allowed to stay with us since I became ill. I just don’t have the strength to entertain house guests. Instead, I find it an escape to take short car trips (arrive in one day) to see my son, mother and mother-in-law. Some trips have been successful while others have not. The rehab staff has been working with me to learn how to travel without becoming ill. They continue to encourage me to travel more and have taught me to wear compression hose for my swelling ankles, stop at all rest stops, drink lots of water, keep eating light foods and try to sleep as often as possible. My husband drives.
7. No one but my husband depends on me. I became ill after my son left home for college. I did visit my aunt for an hour once a week before rehab class. In the past two years, she did not require much other than chocolates, lotions and conversation. She passed away June 17, 2007.
8. I have never had a problem with alcohol or drugs.
9. The TV is on when I am home. I watch all the basic channels, as we do not have any premium channels.
CHANGE: I watch a lot more TV than I have ever watched in my life. It makes it less lonely.
10. 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. 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.
11. 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.
12. 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 Main Street in XXX. On weekends, 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. We had traveled a great deal within the US and Canada as well as the Caribbean and Europe. I have not been well enough to fly. As I need oxygen at night, all trips must include preparation to have the oxygen ready for us at the other end. 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 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 away from the Bay 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. 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.
How was that for light reading?
I hope it has helpful information and hope for others at the beginning of the process of living with an ILD.
After reading this document, I am proud that I have fought and continue to fight a valiant battle. I won't go quietly into the night. Just not my style!
