Truth bomb!: I have been living a lie.
I have been in denial that I am as sick as I am. I am probably as well as I am ever going to get. I have Myalgic Encephalomyelitis.
I have been trying to place all of the blame on fibromyalgia pain, because people can understand pain. Well, maybe fibromyalgia pain looks like a hoax to people because they see no injuries, but at least pain makes more sense to people than Chronic Fatigue Syndrome aka Myalgic Encephalomyelitis. People say, “Oh, yeah I am fatigued too…” Chronic Fatigue Syndrome is such a misnomer. It should be called Chronic Crash Syndrome. My body just is not going to recover from whatever virus or whatever is was that hijacked my nervous system and immune system. There are days I feel less sick, there are times I use all of the energy I can muster just to act, function and socialize like ‘normal ‘ people. I act fine. I enjoy acting fine, because I get to feel alive, included, normal. It takes everything out of me and I go back home and try to rest. A day or two goes by and then my body crashes. It is like trying to function with a never-ending flu. You’re worn out, weak, can’t eat. You have to crawl around because it is too strenuous to walk. How do I explain to someone a sickness when I don’t ‘look sick’?
I have tried to dismiss ME/CFS for years- blaming myself for not being able to recover from physical or mental exertion. After cancer treatment, I attended a Livestrong program at the YMCA, designed to help recondition and strengthen our bodies. I slowly progressed every Tuesday and Thursday for an hour. I did gain strength. I did gain endurance. I did that and crashed the rest of the time, the rest of the days. Several months after the two month program, I am still paying the price. It turns out I am sicker, not stronger than before. I now sleep more hours than I am awake. Grocery shopping and running errands for a day will wipe me out for two days.
Damn. Trying to get stronger has made me weaker. Duh! You wouldn’t tell someone who is down with the flu to exercise more so they can have more energy and get out if bed! Yet… rest doesn’t make my sickness ever go away.
People with CFS/ME can drop heart and lung function after 15 min day one test because WE DON’T make energy right and can’t recover overnight. Who CAN recover overnight and do same on 2nd day as first day? – people with heart disease, lung disease, cancer, MS and almost anything else. But not us.
I really wanted to write a blog about life, without making my sicknesses the only subject. There is so much more in life. I know my sickness is my permanent lifestyle. It has taken me almost 15 years to come to grips with that fact. I am done blaming myself for my days being an uphill battle. If anyone could have won this war, I think it could have been me. I give up. I surrender. No more fighting. You get what you get and you don’t throw a fit? I don’t have the energy to throw a fit.
Life, it’s chronic.
Thank you for reading!