“A lot of stroke survivors complain that they are no longer recovering. I often wonder if the real problem is that no one is paying attention to the little accomplishments that are being made. If the boundary between what you can do and what you cannot do is not clearly defined then you don’t know what to try next. Recovery can be derailed by hopelessness..” A Stroke Of Insight by Jill Bolte Taylor
No question it is a challenge being able to notice progress when one is chronically ill. The problem is that healing is not linear so that I can’t always say, “I started at this point where I could not do (list the activities) and now I can do the following (activities). Certainly, during the first three years, when I was mainly bedridden, those linear benchmarks were appropriate. However, since then, progress has been difficult to describe. I could tell you how I went shopping for a couple of hours which seems like a significant indicator of progress, but then I might tell you the next day, I had regressed and couldn’t leave the house again for another ten days. It is this constant instability, this rocking back and forth from progress to regression that makes it difficult to determine whether I am making headway.
Over the years I have often used Christmas and summer as my benchmarks comparing how I am doing. And there have been some significant improvements since at times my activity levels have increased. Then last spring I could feel my body making another significant regression and I didn’t know how to stop it. I tried to ignore the symptoms, but by summer, I could feel so much of the strength that I had begun developing begin to disappear, and by fall, I was definitely pretending to be more well than what I was. By November, the pretence was over as I could no longer leave the house. I felt like Charlie in Flowers for Algernon gradually slipping back into his original state and there wasn’t a thing I could do to stop it. During this time, I put much of my hope in my new doctor who specializes in environmental medicine. However, with his various treatments during the next ten months, I actually got worse rather than better!
Yet, I believe that these treatments are beginning to work. And as I pay attention to my small accomplishments, I realize I am making progress. For instance, last Thursday evening my daughter was hosting a Princess House party and obviously I wanted to attend. Even though my sister-in-law drove me home early and she needed to help me out of the car and into the house as I felt like Raggedy Anne, I still felt encouraged. I actually got to go out that evening and the next day I rebounded back faster than I usually do. A further indicator of progress is that yesterday I walked into several stores where I had had severe reactions last winter and as of today, there has been no consequence! This morning my daughter drove me to the dentist where I sat for two hours to have more amalgam fillings removed. In past sessions, I could hardly wait to get home and go to bed. Today, though tired, my daughter drove me to Coast Mountain Sports so that I could purchase a fall jacket! To note even more progress, despite the constant “setbacks”, I have still been able to do some form of exercise four times a week during these past 28 days. That alone is worth a lot of celebration! And what makes me particularly excited is that Greg and I are considering a holiday. I know even on Sunday Greg looked at me and wondered if we were being wise about leaving,since I was doing so poorly. However, I believe that this holiday will be good emotional therapy. My doctor believes my symptoms would worsen if I go on an airplane, therefore, we have chosen a road trip. After spending so many hours at home, I am excited about driving in the car appreciating the scenery, listening to good music, and participating in good conversation. I can tilt my seat back when I need to nap and have my longer nap when we arrive at a hotel. Even having this attitude tells me I am feeling better since 6 weeks ago I couldn’t have imagined being able to do this. I still haven’t figured out how to get the energy to pack my suitcase, but it just means that whatever I take will be just fine!
Yes, sometimes you just need to know what to look for when you assess progress.
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