One expects their life to change periodically throughout the decade, year, month, week, day, etc. That’s what happens. It’s a little more difficult when this change is not expected, and when it’s going to affect the rest of your life. Unfortunately I cannot equate this with having a child, because 1) I’ve never had a child, and 2) children are usually living at home for about 18 years, so it’s not necessarily “changing your whole life” although I recognize that nearly every parent would disagree with this statement, but we’re going to move on.
I have led a pretty active life until college, that’s when life became less recreational and more work. I played sports from age 8. Took piano lessons, dance lessons, participated with Girl Scouts, was an academic achiever, participated in extracurricular activities while in school. Life was good! I’d see the occasional set-back when I’d sprain an ankle, twist a knee, things that go along with high impact sports. No big deal. I was one of those kids who grew up being told to “walk it off.” Which is what I did. Fast forward to college when life seemed to slow down from the pace I had in high school. I did a lot of studying, some partying, and a lot less athletic activity. I still played intramural sports, but not as much as before; result, weight gain. It happens to almost all of us when we have a change in lifestyle. So, I simply go on with life as if nothing has changed except an extra 20-30 pounds. No big deal. In March 1995 I was playing with the obligatory spring softball league when I had a serious injury. I had to go to the hospital for x-rays, and hopes that I didn’t break my hip. Turns out I only sprained it. This doesn’t sound all that bad, but when you think about your hip bone & joint being one of the largest bones in the body & the one that bears most of the weight, it is quite painful. I was on crutches for about 8 weeks, and had to do physical therapy to help strengthen the muscles again. Instead of playing softball, I began to swim. My leg began to get better and life was getting good again.
Fast forward again to grad school. I still maintained the weight gain that I experienced in undergrad, but decided I’d work on that. Over the course of three years, I biked, swam, walked and watched what I ate, ending up 60 lbs lighter, and nearly at my high school weight. That lasted until I moved to Nebraska in 1999. I was finally learning to live as an adult, and changed my lifestyle to a more healthy one. Nothing major. Then in October my appendix nearly burst. That put me out for just over two weeks, and I wasn’t back in action for another month or so. Suffered a break-up shortly afterwards, then the job loss. Depression set in, but I moved on and got another job & started teaching. The depression didn’t go away, and the anxiety came next. I didn’t know what to do, so a friend suggested I see a doctor and try out a new drug (Paxil) to see if it would help. It did, and I was much happier. I also gained back all the weight I lost. I decided to get more active, so I coached softball and track at the school where I taught. My first year I suffered another injury when I tore my rotator cuff and had to have surgery. I went through more pain and physical therapy. This time about 6-8 weeks of fun and pain. Life got more interesting when the program I was teaching ended & I suffered another break-up, and ended up moving back home to live with my parents in 2002. I had to suck up a lot of pride to do this, but I did it. Got a job and found another job in my field about 8 months later. That’s the good news.
In 2003 I started recognizing some severe depression and anxiety. Once again, I went to a doctor. I got an analysis and diagnosis of bipolar disorder. Not knowing what this was, I did a lot of research. In 2003 this was still one of those “taboo” diseases where people who didn’t understand it thought you were crazy and out of your gourd. When I found out about this, I phoned my parents and was not greeted with the “oh I’m so sorry, what can we do to help,” but rather, “that’s what we thought was wrong with you since you were 12, but we didn’t do anything about it.” Let’s pause here for the full effect of the shock value.
Two words resonated – EIGHTEEN YEARS. Apparently that’s how long I’d been living with this issue not knowing about it. No wonder I was so moody! Whatever. That’s when I started learning more about the discrimination against those with mental illness. People say that it doesn’t happen, but it does. The problem is that it can’t be proven. There’s a fine line between disclosure of an illness, and acceptance. This disclosure cost me two jobs, but I can’t prove that it was due to the fear of the disease, other than the comment from one supervisor telling me she was scared of me, even though I never did anything to her. Whatever, I decided to go on with my life and move to Albany, where I now live with my wonderful boyfriend, two cats, and a house. I also have a stable job with people who understand what it’s like to not be perfect.
In recent years, and unfortunately I cannot pinpoint when it started, I began to feel pain. Pain in my lower back, upper back, right hip, knees, shoulders, neck, etc. I attributed this pain to injuries I had when I was an athlete, and went to doctor upon doctor to find out what could be done to help ease the pain. My boyfriend was very supportive during this time. We both did a lot of research, and finally found out that it could be an issue with my back. Fantastic. I started an exercise program prior to the diagnosis, and was losing weight again (about 40 lbs), but due to the injury, I had to tone down the workouts. Plus the injury would flare up and cause extreme pain, which was attributed to my sciatic nerve being pinched by either the piriformis muscle (also called piriformis syndrome), or by the bone & possible scar tissue. My workouts would need to be modified. Over a period of three years, I spend thousands of dollars on doctors, physical therapists, gym memberships, personal trainers, dieting programs, everything I could to help ease this pain.
I started a new workout program after finding out the diagnosis, and determined that I would need to simply change some exercises, but would work with a trainer. This has been an ongoing process since October 2009. However, I haven’t lost any weight, even though I am down 1-2 pant sizes. In December 2009, my boyfriend & I decided it was time to move out of the cramped apartment into a house. It was a great time for us. Mid December, I began to feel some severe pain in my right leg. This pain caused me such discomfort that I could only sleep in one position, on my back. When one sleeps on their back they snore. It’s simply biology. Everyone does it. My poor boyfriend had to deal with that, because when I slept on my sides, the pain was so excruciating that I couldn’t move the next day. I started missing work again due to exhaustion, pain and doctor appointments. The cherry on the cake was at the end of January when the move was done, and it was the night we finally had the old place cleaned out for the owner, so the house could start the sale process. We came home that night, relaxed some, and I went to bed. I slept for about an hour and a half; during the entire night. The pain was so terrible that I left the bedroom and went into the living room and tried crying myself to sleep, deep breathing techniques, everything I could think of. Nothing worked.
Previously, I was seeing spine specialists, orthopedic surgeons, a chiropractor, a massage therapist. The pain was manageable and under control, until now. I went to my doctor and got an unofficial diagnosis that I had waited for the past 4-5 years when it was first identified as a possibility. At that time it was simply a neurological issue, and I’d have to deal with it with pain killers & exercise. This was something more.
Fibromyalgia was finally the word that was brought up. I was scheduled to see a rheumatologist, but the pain was so severe that my PCP gave me the newest fibromyalgia drug to start taking while I waited to meet with the rheumatologist. My spine doctor also suggested that I had fibromyalgia, but didn’t diagnose. He said it was probably not anything worse than that.
So, here I sit, nearly 37 years old with this disease that doctors still don’t know much about. I know about it because two of my friends deal with it. I’m still doing research, and have found several pieces of good information. One piece is not encouraging, as it indicates that I will suffer from this disease for the rest of my life, and it will most likely get worse as I get older. Sounds like fun.
So after all these years of doing things I wanted to do, and trying new things, I will be adjusting to a new lifestyle that helps me to ease the pain, and may be able to do the occasional fun activity (referring to skiing mostly). My workouts will be modified to accommodate the flair ups that happen with fibromyalgia, and overwork of muscles & joints. I will be logging my food intake, not just for calories this time, so I can find out what precipitates the flair ups; today it’s rice as discovered by yesterday’s food choices.
After that long & drawn out description of life, pain, and coping you can come back to read my ongoing experience with fibromyalgia, and the information I obtain. Plus, I may even write about other things, like politics, my opinion, and what’s annoying me on any particular day. So, my personality will not be totally lost.