My birthday was a few days before Christmas. It’s a day I have enjoyed since I was a child. The only difference is I no longer look forward to advancing another year in age. This is not so much about the fact I am nearing 49 years, but that I have been deprived of “life” for 21 years due to fibromyalgia.
While I do not like to acknowledge this fact as if it were an anniversary, it is something that follows me like the proverbial monkey on my back. It is because of this illness that I insist on celebrating the events I can, for few events bring happiness. As many who have the illness already know, the onset, symptoms and treatments, differ from person to person.
My personal journey began around 1996. I was going through a divorce from my college sweetheart, one of the reasons being undue stress from having post-traumatic stress disorder due to repressed childhood trauma. I think fibromyalgia may have a genetic component that, in combination with added stressors, can put one at risk for developing the disorder.
I recall many relatives, mainly on my maternal side, who had various rheumatic diseases (mainly arthritis) and chronic pain conditions (migraines, gout, bursitis). This family history may have already predisposed me, but then came the upheaval of stress hormones for six years (due to PTSD), followed by divorce, which brought on mild symptoms of chronic back pain and fatigue that I could not shake.
Since I worked in a clinical setting, I had plenty of advice from health professionals who suggested taking time off or adding certain supplements. To have the general complaint of fatigue, one would think it was a simple fix. That is me — “Miss Fix It.” I want to fix others’ problems, and when it comes to health issues I am highly proactive.
Before my illness, I went to the doctor for a yearly check-up and only a handful of times for bronchitis. Even when I had pelvic pain and required surgery, I expected the doctor to find the source and the problem would be corrected (which it was). But, it never occurred to me that the source would not be found or due to an incurable, chronic condition like endometriosis (which I was diagnosed with in later years).
To live with a condition that not only progresses over time, varies greatly from day-to-day and, in instances where I have had massive flares (lasting months), made me lose some aspects of functioning that I never could fully regain once the flare subsided, is a frustrating and agonizing experience. I never anticipated that at this age, I would still have the mentality of a 20-something, yet feel like I am nearing 70.
I know that my body has aged due to the illness. How could it not? The body is not meant to live with pain. The fatigue is a manifestation of the amount of energy taken up by the pain. Any condition that can alter one’s memory and word-finding abilities to that of someone with early stage Alzheimer’s disease is bound to alter other parts of the body and its functions. I worry that the neurons are shrinking and the synapses are no longer firing, effectively leaving certain areas of my brain to waste away due to lack of activity.
At the same time, ignorance is bliss, for if I knew all that may be, or may not be, occurring to my body, there is no way I can fix it. I already feel helpless, having lost the jovial sides of my personality that also maintained a strong work ethic. Now all that is left is someone who tries to find happiness and solitude in nature, certain relationships, books, music and certain television programs.
I am someone whose sole source of pride in my work, aside from the new experience of writing this column, is found in my housework. While I feel fortunate to be able to make things clean and tidy, it takes time and requires parceling out my energies wisely. I resent the fact so many who have “normal” lives with a standard work week, complain about the traffic, the occasional frustrations with the boss, or not knowing what to fix for dinner that evening.
Just writing about these activities exhausts me. I still recall what it was like to be able to work a 12-hour day, run errands and meet friends for dinner without much fatigue. I see it all the time from my non-retired neighbors and, even closer to home, my husband. Mainly, I find myself building my own little world that consists of making my home as cozy as possible, with access to the outdoors (even if just to look out the window), regular interactions with my spouse, certain friends and, of course, my puppy.
On my good days, I relish in it and take the opportunity to take long walks, write long emails, run small errands or take on a small organizational project. On my bad days, I focus on the fact that a good day is in the near future. I do not focus on the lifestyles of others because it would make me sad and frustrated. I try to take advantage of birthdays, holidays and the few remaining invites I may receive, with hopes that on the day of occasion I will have the energy needed to socialize and enjoy myself.
I do not believe a cure for fibromyalgia will be found in my lifetime. However, I do believe that an improved treatment will occur in the next couple of years. This year I had a two-week flare that remained on my birthday, the first one I can recall in many years. It is bound to happen, given the unpredictability of the weather.
While it was an unusually sedate day for me, I still was able to smile inside due to the 100 Facebook birthday wishes I received. This was a reminder that to many, the person I am, and not my actions, are still important to others. That makes up for any short-term flare. There also is the hope that I will feel better on next year’s birthday.
Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.