For two years after my doctor said there was nothing more he could do for me, I just lived with my symptoms. Since sleeping never alleviated my fatigue, I constantly pushed myself to do as much as I could, in an attempt to feel like I was at least accomplishing something.
I learned the hard way that this was not a good idea.
The lack of help I received from my doctors made me think pushing myself was the only option. I pushed myself to graduate high school on time. Then, figuring I wouldn’t be able to work retail full-time, I pushed myself to go to college.
At first, I found college less difficult to get through than high school. More flexibility with scheduling allowed me to take all my classes in the afternoon and nap between classes. But as time went on, I had a harder time keeping up.
We moved when I was 19, right after my first year of college. Since we had to find new doctors anyway, I took the opportunity to look for one who was more familiar with my illnesses.
I found a pain specialist who was recommended for ME/CFS and fibromyalgia patients. He was more familiar with these illnesses than any other doctor I’d been to, so I thought I might finally get the help I needed. I was able to try a few different medications without success before my health insurance plan changed and refused to cover him.
The pain specialist recommended a family doctor who had some ME/CFS patients. She at least believed the illness existed. I was able to try one more medication before she started suggesting antidepressants. Because I was not willing to risk having any of the nightmarish side effects I'd had before, I was on my own again.
A lot of creativity and a very limited social life helped me get through college. Life after that was more difficult. Full-time work was not as flexible.
I pushed on anyway. It got tougher and tougher. One by one I ended up having to give up everything else in my life. All I did was eat, sleep, and work, and still my symptoms grew in both number and severity.
My fibro fog became so severe that I stopped driving. I started seeing stars during seemingly simple tasks, such as taking a shower. I also started having memory lapses. I wouldn’t remember taking a shower, but knew I must have because my hair was wet. At work, I'd start a task only to realize I’d already completed it.
I was terrified.
When I could no longer keep up my job performance, I asked my doctor if there was anything else she could suggest. She wrote me a prescription for another antidepressant, and she added that I did not qualify for disability.
Out of desperation, I did what I told myself I never would do again and tried the antidepressant.
I ended up trying several more antidepressants, as each one either didn’t work or caused awful side effects. My doctor prescribed a couple of other medications in between, but they all had the same results.
Eventually, this doctor also concluded there was nothing else she could do for me. I actually broke down and cried. I felt so helpless. I didn’t know where else to turn.
(Story to continue in next post.)