I recently turned 65 and enjoyed the first happy birthday of my life. For the first time, I am excited and optimistic about my life. For the first time, I feel I have something to say and something worth sharing with others. I’m doing volunteer work, and I’m reading again for pleasure. I’m not over CFIDS; I still spend about 50% of my day in bed or lying down, but the rest of my time is so much more productive and so much happier than I can ever remember it being.
I have been exhausted and depressed my entire life. In fact, naptime was the highlight of kindergarten. Rest was mandatory after each day of grade school, high school and college. I knew something was wrong, but I didn’t have a clue to what it was. Sadness, sensitivity and tiredness filled my days. Until I was 51, I plodded to work as a librarian, usually unable to make it through the day without lying down for lunch and at break time. I also had other symptoms—cognitive problems, chemical and food allergies, gastrointestinal difficulties and horrible insomnia. In my case, I believe this was an inherited condition. My mother’s father never held a full-time job, and depression also was evident on my father’s side of the family.
It was in April 1991 that I sought help from Dr. Charles Lapp of Charlotte, N.C. He said I had something more than depression and defined my condition as an atypical case of CFIDS—a lifelong case, rather than the sudden onset that is more recognized.
But knowing what I had and attaching a new name to my condition was not enough to help me improve my life. The depression that was a part of me had become so ingrained, so inveterate, that it overwhelmed me. In January 1998, my illness worsened when I came down with pneumonia. I simply could not take the depression, fatigue and sleep deprivation any longer, and I tried to take my life.
Emotionally, physically and spiritually, I was at rock bottom. I was desperate and despondent.
God had other plans for me, however, and chose to give me another chance. I realized my work was not yet done. I came to know that I really had never lived. I am just beginning to live at age 65. I want to share the steps I have followed in the hope that other people with depression coexisting with their CFIDS might benefit.
I began by dealing aggressively with the depression, and I believe this was key. I had not seen any marked improvement in my CFIDS condition until I did so.
After my suicide attempt, I was hospitalized for a month and had intensive therapy. I took drugs to alleviate the anxiety, depression and insomnia. I made slow improvement, but after several months, the symptoms returned. The pills simply stopped working. As a last resort, my psychiatrist suggested electroconvulsive or electroshock therapy (ECT). I did not hesitate and responded immediately. It turned my life around. I am no longer under an ever-present ominous dark cloud but am surrounded by a feeling of hope. To those who have heard negative comments about ECT, I advise you to forget about all those preconceived images. The treatment was painless. It was my catalyst for change.
I have an excellent psychiatrist and an outstanding psychologist/therapist who are both believers. They are not CFIDS experts, but they recognize the disease and the limitations it can impose on someone. These compassionate people have taught me to believe in myself, to make necessary changes, and to live within the parameters of my sickness. For the first time I actually love myself rather than resenting my situation, as I had always done before. I may be in therapy the rest of my life, because I need the reinforcement and encouragement it brings. I make absolutely no apologies for seeking professional help, for without it my situation could not have been changed.
I am extremely sensitive to drugs, so finding the right combination has taken some time. I take a grain of thyroid a day. Celexa controls depression; Deseryl helps insomnia. These have greatly remedied my lifelong problems. I tried to be prescription free, but it was disastrous. St. John’s Wort, other herbs and homeopathic preparations just didn’t do the trick. Prescriptions serve a purpose, and I need them to function.
B-12 and Kutapressin
Dr. Lapp recommended these two natural substances, and I took them faithfully for years. However, when I became so desperately ill, I stopped them. I’ve resumed them again, and I feel they boost my energy level. I also get help from massage. If Oriental acupuncture were available locally, I would engage in that. I am looking into aroma therapy and herbal teas to combat stomach problems and enhance my energy level. I also take B complex, selenium, chromium, CoQ10, evening primrose oil, Twinlab Maxlife CoQ10 formula and vitamin E. Ginko biloba helps my cognitive difficulties.
I have been an advocate of support groups since I joined a hypoglycemia group in Buffalo in 1971. I attend two groups now, and they are of utmost importance to me. My CFIDS group meets monthly, and there is always a great deal of contact among members. I also attend a weekly aftercare fellowship in one of the psychiatric hospitals where I was a patient. In these groups, I have made bolstering and understanding friends, and I have forged a strong telephone network and significant people contacts. Isolation isn’t good for us, and through these associations I can learn firsthand what aids other people.
Mine is rigid. I have numerous food allergies with which to contend—any gluten product, cheese, mold, milk, sugar and pork. Artificial sweeteners are an absolute no-no. I follow a rotation diet, eating the same food every fourth day, and this has worked for me for years. I can tolerate corn and spelt (a non-gluten grain) once a week, and beans, brown rice and nuts are staples. For grains, I also use amaranth, millet and quinoa. Chicken, eggs, fish and turkey provide protein. I don’t seem to need to alternate fruits and vegetables as some people do. I am very careful not to eat too much of anything. I never touch alcohol, coffee, tea, chocolate or peanut butter.
I am one of those PWCs who can do some exercise, and I am thankful that I can. I have approached it cautiously and make certain not to overdo it. I do 30 minutes of water aerobics five mornings a week, and then I hit the couch for an hour. I also walk or ride a bicycle in the afternoon. At first, prolonged activity was a chore, but now it has become an enjoyable and significant part of my daily routine. It’s also a good way to keep my weight down. To gain ground I have to be attuned both physically and spiritually. It takes a lot of time and effort, but the rewards are worth it.
Since early childhood, I have been negative. It seemed to be a family trait. Through successful counseling I have managed to turn my thinking around. I still have some rough moments, of course, but I no longer have “bad days.” I prefer now to think of those days as challenging, difficult or trying, and I make it a point not to discuss how I feel. I really concentrate on keeping my mind off myself, and I make it a point to reach out to others. Writing encouraging notes and letters is an important part of my weekly activities, as is visiting at least two shut-ins a week. I also seek out positive people and have eliminated several whose pessimism I could no longer handle. The result is that I am centered, happy and peaceful for the first time in my life. It’s been a profound change, and it has been noticed by others.
While I still spend almost 50% of a 24-hour period lying down (it used to be 60% or more), I am in my bedroom only for sleeping at night and early morning devotions. When I take time off during the day, I recline on the couch in the living room and listen to uplifting music. Staying out of the bedroom during the day has improved my rest.
I do volunteer work three times a week, some of which I can do at home on my own schedule. I go two days a week to a convalescent center in the community where I live, and I am organizing a library. I am never “on duty” for longer than an hour and a half. One day it’s only 30 minutes and another day an hour. Singing with the residents does more for me than for them. This gets me dressed up and out of the house, and it keeps my mind optimistically and usefully occupied. I also participate in my congregation’s music program.
I plan a limited amount of them—always subject to change—never lasting longer than four hours. Thesetake place in the morning or afternoon. (One of the reasons I never married is because dating at night was a virtual impossibility.) I spend my leisure time with people who understand my limitations and with whom I have to make no explanations if I am not up to par. I don’t try to keep up with the “wellies.” By planning fun things to do, I have something to look forward to, and this is important.
Keeping a journal
Since June, I have kept track of my progress. Before that, I was unable to do so. I rate my days from one to 10 and have not yet recorded the highest or lowest. This helps me give accurate reports to my doctor and other health facilitators. It also reminds me when I am having a preponderance of better periods. Keeping a journal allows me to express how I really feel. No matter how arduous the day, I always manage to find at least one uplifting event that happened—even if no more than a pleasant phone call received. I find myself seeking out pleasurable moments to record. It’s also teaching me to be honest with myself.
Faith in God
For many years I had prayed, as had many others in my life, that my health problems would diminish. But feeling bad controlled my life, and I was out of sync with a higher power. Since I regained control over my thinking, I have rededicated myself to the Lord. My faith and trust in Him has grown and has helped in the healing process. Indeed, I have felt a divine presence the past few months as I have gotten better.
Today, I can read recreationally for the first time in more than 20 years. I am able to concentrate enough to write this article and even to do some book reviewing. This is a wonderful gift for a retired librarian. No, my life is not ideal, but it is much better. I am a living example that it’s never too late to begin anew. God and the right health contacts can help you.
The steps to improvement are gradual, and there can be some regression. I have had some temporary setbacks, but I have coped with them. It is so important not to panic or give up. I have several friends with whom I discuss and analyze temporary difficulties, and I find it helps to deal with problems as they arise.
Every person’s program will be different. I have developed one that has benefited me and I will not deviate from it. I urge you to begin to structure yours. It will eventually pay off.