This month’s piece is written by my younger sister Kayla (aka Killer Kayla). Kayla got pretty much all the athletic genes in the family. Until her early 20s, she excelled at figure skating, dance, cheerleading, lacrosse, swimming, kickboxing, and just about every other physical activity she attempted. In 2004 she became mysteriously sick, with what was later revealed to be Chronic Fatigue Syndrome. This past month, she ran her first 10k, and she is an ongoing inspiration to me. Here’s her story.
I began to feel ill after surgical complications in 2004. I never fully recovered from my surgery and blamed it on a previous medical condition. Before 2004, I had been very athletic my whole life, ranging from cheerleading to lacrosse. I was a self proclaimed gym rat. However, that all changed. My earliest memory of knowing that something was wrong was when I was worrying that I would be to tired to walk to the bus. I was unable to take a shower or make a meal without having a nap right afterwards. I knew that something was wrong and began seeing my family physician for immense fatigue that did not go away without plenty of rest after 6 months. I suffered from profound physical and mental exhaustion. Any activity that I did would make me severely impaired afterwards.
After a year of blood tests, specialist appointments, sleep clinics, etc., it was determined that I had Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis. Since this is a relatively new condition there is no cure or ‘universal’ treatment for patients. Testing is also tiring and tests your patience. Many people also believe it’s “all in your head” (which it is, because CFS is also neurological). I began to get very discouraged and felt completely hopeless. My identity was slipping away since I had to quit my job, and I was unable to attend school, read, write, go to the gym, be social etc. I lost words. A family friend forwarded me the information for Dr. Bested (http://www.thedoctors.ca/), who specializes in the
treatment of fibromalygia and cfs. It was at this clinic that I began to receive some help.
I think the hardest part of suffering from an illness like CFS is how you are unable to control your body or plan. I do not know if I will wake up and be able to function or if I will have to stay in bed all day. I began to physically unable to be active in the most basic sense. I started to suffer cognitively, and still do suffer immnensely. I was also in physical and emotional pain. I looked okay from the outside, but on the inside I felt awful. I struggled every day to maintain hope and to stay positive about my health status. I was in bed all day except to eat and shower. Any basic activity involved me napping and pacing the week beforehand. However, it is difficult to remain positive and upbeat when your
physical condition has no forecasted time frame to run its course. I was so afraid, scared and at the same time every day I felt awful. I began to attend group sessions where I could discuss my pain and emotions about dealing with my illness. It was the only time where everyone in a room fully understood what I was going through. I also began counseling sessions as a way to cope with the enormity of my illness.
It is now a two years after having CFS and one year after my official diagnosis and beginning my treatment. I am now in a much better position healthwise. I am able to be out of bed during the day with only one nap during the afternoon. I am on a strict diet due to major gastro-intestinal issues. I can now be physically active if I pace myself accordingly. I am on
many supplements throughout the day. I have also learned the skills from my CFS management group that I attended at Dr. Bested’s. Unfortunately, I still suffer
a lot from cognitive impairments. I am unable to write/think/read without post-exertion. I stumble on retrieving words and I mix them up. However, my condition has improved greatly. I believe that my improvement is because I pace myself, meditate, take supplements, have coping skills, improved sleep hygiene, had immediate medical attention, financial and family support.
Once I was feeling physically stronger and able to spend more hours out of bed I was itching to get back to the gym. With the guidance of my doctor I slowly worked up to getting to the gym to walk. I started walking for 5 min, then 10 etc. I monitored my post-exertional malaise to see if it would put me in bedrest. After awhile I was able to work up to walking for 60 min for a month after a lot of planning, pacing and close monitoring of every hour of the day. Although I was suffering extremely cognitively I was desperate to make some type of short term goals in my life. I did so through walking for one more minute a day. After a year of impairment and finally being able to walk for 60 minutes, I signed up for a learn to run clinic. I joined the clinic with my partner for support and to help me if I needed to stop. I did the clinic with proper support and monitoring from my doctor. I monitored any pain or severe fatigue that would signal for me to reduce my running.
I successfully completed my first 5k as a “Run for the Cure” in September. I did so with tears in my eyes. It was a fantastic event for me, because I was surrounded by so many strong women who themselves were fighting against their own health struggles. I was one of the most single events in my life that I am proud of. I fought against all the odds and maintained a positive attitude to get me to the point of even considering running a race.
It is important to stress that every experience of CFS is DIFFERENT. There are many factors that contribute to me being in better health and the fact that I slowly improved. Also, many treatments that work for some do not work for others.
- I received support on many levels, which is crucial for anyone with CFS.
- My partner supported me and was there for me. He stayed with me through the good times and bad.
- I received counseling which helped me cope through the darkest times of learning to deal with an illness. It also helped me talk about how I would adjust.
- I received great medical care early on in the onset of my illness.
- I had financial support that allowed me to eat, sleep and heal.
- MOST IMPORTANT – I never gave up HOPE!!! I stopped being a pessimistic person and decided that I needed to change my attitude and become my own best friend.
- Laughter. I had to laugh at myself when I mixed up my words and forgot the most basic details.
- Have a basic goal every day. By basic I mean… reading ten pages a day or reading an email.
- Never give up on yourself. Hang in there no matter how hard it gets.
- Adjust your expectations. I realized that since I struggle to read academic work that on my bad days I’ll pick up a trashy gossip mag and read it.
- Ask for help.
- Never be ashamed of your disability. Let others know.
- Find one moment of joy daily in your life. During my worst days…. the one thing that I loved to do was look at the shadows of leaves that danced across my wall as I was in bed.
Why do I run you ask? I run because it makes me proud of myself and my body.
I do it as a way to give back to my body that has been fighting my illness to heal me. I do it to make it make my body physically and emotionally stronger to continue fighting it everyday. It helps me cope with my anxiety and stress. I do it to help clear the severe brain fog. Everytime I finish a run I visualize that I have fought off my CFS. I only run to challenge myself.
I still continue to have 1-2 bad days a week during a good week. I still know that my disability can appear at any time and is easily aggravated by stress. If I had to say anything who is fighting CFS or any illness, it’s to never give up and to allow yourself to go through your emotions. I have also worked on re-framing how I view illness/disability as a negative aspect of my identity. I have embraced my limitations and most importantly refuse to hide who I am. I do so because I think it is important to educate others about invisible disabilities/illnesses. I do not try to achieve “normal” expectations of daily living and fitness but work towards my own standards of achievable goals. I also think it is important to show people that disability does not mean that you have to be inactive. I think it is important that we challenge mainstream fitness depiction of normative bodies.
If you would like to contact me, please do so at firstname.lastname@example.org
update march 2007
Kayla runs a half-marathon in March 2007, finishing in 2:21. I am so proud of her I could plotz!