Seventeen years ago, on March 2, 2002, I suddenly became ill with what I thought was the influence. In a story that is probably familiar to most people reading this, I had no idea that my life had changed radically, forever divided into "Before" and "After". I went through all the usual phases: looking for a diagnosis, disbelief that I was yet sick, anger and frustration that I couldn't do the things I had to do, and confusion that I felt good in a few days and debilitated over others. When a new general practitioner diagnosed me correctly with ME / CFS (chronic fatigue syndrome) a year later, I was relieved to have a name for my illness and was also horrified by the fact that I was now "chronically ill".
Although there is no cure for it, over the last 17 years I have gradually found, with the help of my doctors, various ME / CFS treatments and symptom management techniques that have provided small benefits, adding over time to sufficient improvement that I can live my life again. I write, I take care of my family, I am together with my friends and I manage the immense and convoluted disorder that is my illness (and also that of my son). I'm not completely okay and the ME / CFS recovery is still a dream, but I'm working quite well compared to where I was, and I'm living an active and happy life and doing things that I like, albeit with restrictions.
However, it's not just my physical body that has changed. Living within the limits of chronic illness every day for almost two decades has changed me in other ways, though my essence is always the same. Some of these changes have been difficult or even heartbreaking, but most of them have been positive, things I would never have experienced if I had continued my hectic pre-disease life.
How chronic fatigue syndrome changed me
I'm more compassionate.
This is one of the most surprising changes and something I've seen in my two children. Having gone through such enormous challenges, compassion for others comes naturally. Fighting with a debilitating disease that is usually invisible to others made me realize that everyone I see every day is probably facing their own challenges that others do not see. The disease made me a kinder and more empathetic person. Similarly, I see my children reaching out to help others, and I am proud and grateful whenever someone tells me that my children are so kind (which happens a lot!).
I became more patient and calm.
Like many people, I used to go full throttle during my days. I walked the list of things to do every day as if I were in a race, and I put a lot of pressure on myself and my family to do everything and not lose it. The chronic illness forced me to slow down and calm down, which was good for all of us! Even though I have a lot to do, my body insists that I stop taking a nap after lunch every day, put the job away at 7:00 and go to bed early. With limited time and energy, I simply can not be done Do it all. I find that I am not as prone to frustration or anger as I once was, and I am more patient with others (probably because I am more patient with myself). After having faced so many crises and often had to change plans at the last moment, our family reacts more calmly when problems arise now. We have spent so much time together that we know when something goes wrong that we will be able to overcome and it is not the end of the world.
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I NEED solitude and embrace a quieter life.
I've always been very sociable and I like being with people and doing things … but now these types of social interactions wear me down. I can tolerate and enjoy social activities with close friends or family once or twice a week, but I also find that I long for quiet time alone in the middle. It is interesting to note that this helped me and my husband to tie more because he is a natural introvert. I felt frustrated by his desire to stay at home, I was always afraid that we were missing something. Now, I embrace silent dead times as much as he does. We wait both nights together when we spend two hours watching our favorite TV shows and then an hour to read before going to sleep. Not only do I accept this necessary silent routine, I enjoy it.
I approached my closest family.
For several years, three of us four were seriously ill, with only my husband left to take care of us. This experience, however horrible at the moment, has united us in a unique way. We spent a lot of time alone and at home, just us, watching movies or TV, reading books and playing quiet games. We always had dinner together, we enjoyed the quiet weekend at the campsite and took a 3-week trip with our camper every summer. Now, our children are 20 years old and committed to living alone, but they still like going home and spending time with us. The downside is that a fracture formed with an extended family, most of whom have never tried to understand our illnesses, which is only slowly and incompletely healing.
I became less of a perfectionist (still working on this!).
I've always expected a lot from myself and others. Chronic fatigue syndrome forced me to lower my standards, which is a good thing! Are friends coming and the house is cluttered? Oh well, that's why they're friends! Can't I go to the store today? I'll try again tomorrow, and we can find something here for dinner. From time to time, I had to settle for not perfect, and it made me realize that it's okay. I'm not completely there yet; those perfectionist tendencies still push me in many ways. But my illness sets limits on me that cannot be violated, and this has been good for me.
How are they still the same
With all the changes that have caused chronic illness and chronic fatigue syndrome, I recognize that it's still me. In fact, my illnesses have helped me to explore certain parts of myself more completely. I've loved reading since I was a child, and now it's an even bigger part of my life; I can embrace downtime as a chance to read. It has always been important for me to help others and feel that I was making a difference, and now, as a writer living with a chronic illness, I have this possibility. The chronic disease forced me to make changes in my life, many of them positive, but that essential core that makes me what I am has not changed. I'm still me, mother, wife, friend and writer. And I'm enjoying my new normal while I continue my recovery of me / cfs.
Suzan Jackson is a freelance writer who has had ME / CFS for 16 years and also has Lyme disease. Both of his sons also obtained ME / CFS 14 years ago, but one is completely cured after 10 years of mild illness and another just graduated, with ME / CFS plus three tick-borne infections. He writes two blogs: Living with ME / CFS a http://livewithcfs.blogspot.com and book by book a http://bookbybook.blogspot.com You can follow her on Twitter at the @livewithmecfs address.