We had two children and worked together at the same clinic for five years. We were traveling and enjoying life together-things were working pretty well. She was one of those active, Type A people-always doing five things at the same time.
In 1991 we decided to form a clinic of our own. This required a lot of organizing and Mavis did all of the detail work. she was finding herself increasingly tired, needing to sleep more and becoming irritable. I was also becoming irritable and we found ourselves pulling away from each other. We thought the changes in our relationship were due to the stress of setting up the clinic and expected things to right themselves when we opened. Things did settled down. We shared the practice, I was working 3 days a week and Mavis worked 2-1/2 days a week. This gave us more time with each other and the children.
In early 1993,1 found Mavis becoming emotionally distant. She was tired, going to bed more frequently and having more aches and pains. She was limping more and found herself spending the weekends recovering from the work week. Over the spring her symptoms got worse. Mavis began reading about post-polio syndrome and quickly realized that what she was reading was describing what she was experiencing. Her family doctor was not helpful, as she had no familiarity with post-polio.
Mavis knew she had to start making some changes in her life. She cut out a half hour from each work day and, rather than running to work, started using her car. She found that she was ending the day in better spirits but was uncertain whether she was going to be able to get going the next day.
Things came to a head in 1993 when I got a call from the receptionist at the clinic saying that Mavis was taking medications from the drug cupboard. I cursed myself for not realizing that things were getting so bad. I was in denial and not paying enough attention to the realities of Mavis' illness.
We reorganized our responsibilities at the clinic, Mavis took some time off and I began to work full time. she did a time/energy study while she was at home and found that she was taking over 300 steps a day-while she was trying to cut down and rest. We lived in a four level split with the bathroom on one level and the kitchen on another. I realized that we needed to move to a one level home.
During one short month we went from having an equal relationship working together, to Mavis not working, me working full time and the family having to change our home. We also had to try to explain what was happening to the children who were 3 & 6 at the time.
As time went on, Mavis found that she was able to do less. She was not recovering and was becoming increasingly fatigued, even with her modified schedule. She began to get more depressed. I was becoming stressed and irritable as well and did not know what to do to make things better. I found myself staying up later and letting myself get more fatigued, thinking-if she's tired, I should be tired too. It's not very rational but when people are under stress they're not always rational.
Eventually Mavis insisted that I seek counseling. This was useful because when I was growing up my mother suffered from severe depression. It was like living with a chronic illness. There were times when I would come home and not know what situation I would be facing. When I left home I figured I had left the chronic illness and not have to deal with it again. Now here I was in the same situation only it wasn't going to be a couple of years and I would be able to leave. That was very hard to deal with.
Our situation continued to deteriorate throughout the fall and just before Christmas Mavis went into the hospital because of other health concerns perhaps ALS or Multiple Sclerosis. She was in the hospital for a week and had all the tests done. The doctors said "this is just a psychosomatic thing". By that time I had read enough, knew enough and observed Mavis enough to know that this was not the case. Mavis was depressed and I had to support her through that psychosomatic nonsense.
In January I started to keep a journal of my feelings, especially the feelings you don't want to share with your spouse. You don't want to tell them that you are tired of dealing with the problems, that you are tired of not being able to do things, and you are angry at them. It's not their fault but those feelings are still there and the journal provided an important outlet.
Mavis went to see Dr. Rubin Feldman in Edmonton. He did a few simple tests and diagnosed her a classic case of PPS. He counseled her about changes she would need to make to maintain her health. She learned that many of the lifestyle changes we had gone through already were the things that she needed.
While she was in Edmonton I continued my journal, exploring my goals and values. I realized that the things that I found important in my life were still available to me in our relationship. It was important to me to have challenges, to grow personally and to have satisfaction. Our relationship provided a situation where I could have all of this. I didn't have to run away to be fulfilled.
It was also at this time that I realized one of the things Mavis was working through was the fear that she was going to be abandoned, that I was going to leave her. I found that the reason I wasn't running away was that I was meeting my needs in the relationship. The realization that Mavis felt that I might run away gave me a chance to show my commitment to the relationship. We hadn't married yet and I thought this was an appropriate time to propose to her. This was an important step in her realization that I was not going to leave the relationship.
Things were still unsettled though and we both needed a lot of separate time. Mavis needed time to come to terms with herself and to develop ways to rest and get her energy back. I needed time for myself to come to terms with what was happening with her, to grieve through the losses and to get comfortable with our recent changes.
In May 1994 things came to a head. Mavis got so tired and so distressed that she checked herself into the hospital. While in the hospital, she developed a routine of sleeping in the afternoons and resting and she felt much better. It was at this time I realized that either this relationship is going to work or it's not. Interestingly enough, while Mavis was in the hospital she had come to the same conclusion. We started settling into the routines of a more regular relationship. We discovered that there were ways of traveling with a disability. We discovered there are ways to conserve energy. We got a housekeeper. We found through trial and error that we were able to build our relationship again. We realized that we had some losses but there were new challenges that keep it worthwhile and exciting.
I have read many books about family relationships and chronic illness and through them, have learned some very good advice. Be aware of your attitudes about chronic illness. If you have had previous exposure to chronic illness, there may have been some very positive or really negative events which could colour your perception and your relationship. My previous exposure had been a very negative experience and I assumed that the current situation would be negative as well.
It is useful to be in the present and not dwell on what might happen tomorrow or grieve about things that have changed. Instead, concentrate on what is happening today. Worry about tomorrow tomorrow. Getting worked up about things that might happen is a big waste of energy. Know your values and goals and be honest with yourself.
Take ownership. Acknowledge the situation and acknowledge that you want to be in the relationship.
It is also important to maintain boundaries and give yourself some separation. I live with an illness but it is not my illness. I am affected by it but I don't have to suffer from it. ( no más víctimas)I can do things that I enjoy doing without having to feel guilty that my spouse is not able to do them. This separation gives me the energy to come home and do things together and deal with the stressful parts of the relationship when they arise.
All of these things are factors in taking care of yourself and your relationship. If you don't take care of yourself, you probably won't be helpful to your spouse. Sometimes you might need to acknowledge that at least things aren't getting worse and might even improve. Occasionally Mavis and I find there is another loss we did not expect. We find ways to adapt and get around the hurdle. We have found that our relationship is working because we've been through this challenge together. We each had to work on separate parts and were able to use the things that we learned to work together.
Artículo otorgado con permiso de publicación Asociación Post Polio Litaff, A.C por el Dr. Richard Bruno, tiene copy right , cómo esté y otros 50 aproximadamente artículos de diferentes temas estarán a su disposición en el Simposium.
México a la vanguardia en el Síndrome de Post Polio