My Life With Chronic Fatigue and Fibromyalgia
Just to look at me, you would think that I am just as healthy as the next person. Based on my activity level, you may judge me as a lazy person and I would laughingly go along with that assessment, even though there is much more to it than that. The truth is something quite different and not really funny at all.
Once upon a time I was healthy. I could beat my students at a game of jump rope at recess. I loved walking for miles in the evening. I was a scuba diver. I was a teacher of a rowdy class of 2nd graders and had no problems keeping up with 25 to 30 kids at a time.
Then I got a huge kidney stone (the size of a newborns hand) that had to be removed by cutting it out of my kidney, through my back. Then somehow, a piece of the stone that was the size of a dime was left behind and I was off to surgery again. Then came endometriosis, adhesions, a botched hysterectomy, a huge abscess, a massive infection throughout my body and I was never the same again.
For a long time, I was on a downhill decline, with new complications each week. At 5ft, 2in. I weighed 86 pounds at the worst point. I even developed episodes of passing out that happened once while driving, once while in my classroom and many other places. I had to give up teaching because I could not teach in that condition and having to take a taxi back and forth to work cost over half of my paycheck,
The residual effect of all of this is fibromyalgia (widespread body aches and pain) and chronic fatigue. A lot of the time, I just play it off as if I am simply a lazy person who loves to stay in bed. But the truth is that I get worn out easily and I wake up each morning aching and in pain. My back and body aches so much in the morning.
I usually keep my purse with my medicine and a water bottle by my bed so I can take my medicine right away. On days when I know I have something that needs to be done or a place we need to go, I will ask Al to wake me up about an hour early so I can take my meds and go back to sleep while they start working. That helps a lot because I won't wake up in such severe pain. That little trick has been a life saver for me.
Having Fibromyalgia and Chronic Fatigue (Fibro/CF, for short) removes you from the parade of life, and leaves you as a spectator as you watch the rest of the world go merrily on, while you watch from the sidelines, often too tired to even care about what you are missing.. Your activities have to be planned so that you don't overdo it and so you have enough time to rest up afterwards before you do the next thing. Often, rest doesn't give you the restorative or recuperative effect that it should.
There have been times when I have stayed in bed for a few days, so exhausted that even rolling over seems to be too much to handle. Getting up, walking or doing any activity feels like you are on another planet where massive gravitational forces are weighing you down, making every movement hard to do.
One of the hardest parts of dealing with Fibromyalgia and Chronic Fatigue is the fact that some doctors don't see it as a legitimate illness, and others are simply misinformed. Some doctors may be inclined to chalk it up to depression and put you antidepressants, which have side effects that cause even more problems. Who wouldn't be depressed about dealing with an exhausting illness that your doctor refuses to acknowledge and thinks is all in your head? Why won't the doctor treat the Fibromyalgia/Chronic Fatigue and realize that any depression is secondary to the Fibro/CF. This issue is one of the most frustrating issues in dealing with Fibromyalgia and Chronic Fatigue.
I truly wish that doctors would have to take a college course where they would have to experience the debilitating effects and symptoms of things such as fibromyalgia, kidneys stones and childbirth. Then they would never tell dismiss a patient with such useless and insulting comments such as "you just need to learn to live with it" or "this will cause a bit of discomfort".
Every person with Fibromyalgia and/or Chronic Fatigue has to learn how to deal with it in their own way and adapt their lives in order to survive. After a hundreds of specialists who charged thousands of dollars and simply referred me to their friends who referred me to another friend of theirs, I gave up. They were more interested in my insurance card than my medical problems.
My miracle worker doctor was a simple general practitioner who had the extraordinary skill of listening. Yes, I know that is hard to believe that there is a doctor who actually listens, but he did. Dr. A got me on a schedule of medications that worked and he wasn't afraid to prescribe me in the amounts I needed. He didn't try to use me as a guinea pig to try out the latest and most expensive new drugs out there.
I have been on the same regime for the past three years, my episodes of passing out have subsided. While I cannot hold down a full time job in the way that I did before, I have been able to find a fulfilling work through writing and being a companion to my grandma. I can now sleep on my own schedule. My stresses over bills are gone as I live a simple life in a small house with no mortgage, no car note and no debt. Life is once again manageable and no longer overwhelming. I can only hope that my fellow Fibro/CF patients can find the same