Perhaps there was some kind of intervention, divine or otherwise, that led me to see FibroToday.com’s request for personal stories. This particular morning summed up what it means, for me, to live with Fibromyalgia. My husband left for work, as usual. He has been putting in a large number of hours and for that I’m grateful. I thank him almost every day for working to keep us afloat. I feel constant guilt for not bringing in a full-time income, but what I do bring in will have to do. I can’t change that. However, the guilt is often overwhelming and brought me to tears yet again. Fortunately, he likes his job. That does help. Wait a minute…hey!…I want to be thanked almost every day!!
At 4 years old I was in a major car accident with my mother. I was in the front seat (leather, slippery seats…no seat belts back then) when we were the victims of a hit and run collision. I was thrown into the dashboard and landed on the front passenger floor. A head injury. I was unconscious only long enough for the police to arrive (that’s when I woke up). I didn’t have any “visible” injuries but was checked out by my pediatrician. The “ok” was given. It would have been nice if my pain receptors would have started glowing, something to alert my physician to what had most probably just happened.
Approximately 6 months to a year later, the symptoms started. Violent stomach pains, shooting pain and tingling in both arms (my mother would elevate my arms on pillows and ice them…that helped), severe reflux and subsequent duodenal ulcer (after being teased and taunted about my “performance” stomachaches…I was actually called “Sarah Heartburn”…funny, unless you’re 7 years old), headaches, leg pains, back and shoulder pains…it was starting. The sad part was that I was perceived to be a hypochondriac, an attention seeker and was teased mercilessly. It was already a lonely illness. That was my first lesson. This thing didn’t have a name, but I was alone in it and ridiculed.
The years went on and I dealt with my pains more quietly to avoid criticism. I played with friends, I was active and life went on. My teen years seemed to be less painful, although the occasional stomach daggers continued to follow me around. I still enjoyed my friends and all that came along with teenage years. At around 22 or 23 years old, the symptoms started to come back with increased frequency. I told no one and went on with my life. Again, enjoying my friends, dating, and working. I got married at 26 and had my son (very happy, healthy pregnancy) at 28. At 29, all hell broke loose.
In 1993 I began to feel something that I hadn’t experienced ever before. Total body pain. I had pain in every part of my body, but never all at once. Advil and Tylenol kept me going and I continued to work full time and function as a mother. This continued until 1995, when I experienced lower abdominal pain that was so severe and continuous, that my doctors decided to do exploratory surgery. Everything looked good. About a year later, I was still in agony and the pain was in the upper AND lower abdomen. My gallbladder was removed. Aha!! That would fix me. One week after surgery, the same pains returned. I later had an appendectomy (still not quite sure how necessary that was, but I’ll trust that it was because I was quite sick). During my frequent visits to the OR, I continued to work and function as a mother. I was dragging, gaining weight, and doing my best to just face each day. A physician family member informed me that “the doctors at the hospital call this ‘Crazy Lady Disease.’” That was a vile moment that I will never forget. I am hopeful that this physician is not treating Fibro patients. The years went by and I just “existed,” finding my only joy in my son and husband. My oasis, my refuge. I’m happy to say that I have a supportive husband. I read too many stories of people whose spouses deserve the boot and then some.
I worked for many years as an Administrative Assistant in hospitals, a Talent Assistant at a Talent/Literary agency, and held various positions in various restaurants/stores in my younger years (when making money wasn’t as important as forming friendships with co-workers). Sometimes I sit back and try to remember the exact moment that I knew that my working life was coming to an end. I don’t remember feeling panicked…relieved and anxious was more like it. The panic didn’t set in until years later, when I felt isolated, broke, and less than human. That was just this morning.
Here I am in 2015. I’m exhausted, trying to wake up each morning with some purpose, perhaps something to justify the agony of that initial step out of bed as I hold onto the dresser for support. I allow myself to cry from pain only once in a while out of fear that I will drive everyone away. Nobody should have to live their life watching a loved one in agony. I’ve become a master thespian and go to the bathroom just to take deep breaths to endure the relentless pain. On a good day, my pain is at a 5 (we’ve all seen the hospital happy-sad faces on the pain scale). On MOST days, my pain gets to 7-8 and stays there. I take medication because I have no choice. I have struggled with the shame and guilt of needing medication. However, when one’s pain gets bad enough, one will say “f-ck it” and release the shame quite quickly. The years of juices, vitamins, minerals, herbs, potions, lotions, new doctors, old doctors, acupuncture, physical therapy, oils, and essences are behind me. If I see something interesting that I haven’t tried, I’ll try it. I will not, however, continue to throw away money that I do not have on snake oils that do not work. When I’m told that I’m being “negative” because I’m choosing to NOT purchase someone’s new herbal Fibro cure, I will now walk away from those whose egos and finances have become invested in my health. Every person’s body and Fibro experience is different. Some of these “remedies” can be quite dangerous for some.
I will say that as I age, my body is getting worse. My Benjamin Button hopes and dreams did not materialize. HOWEVER, my psyche continues to improve. Gone are the days of constant people pleasing (I’m still guilty of the occasional act of martyrdom to make someone else happy). It’s quite remarkable how quickly people walk away when you have to say “no.” I’m lonely, I miss working, and I’m in pain. The one thing I hold onto now is…hope. Maybe not so much for myself as I’m 51 years old and I don’t see a cure coming in my lifetime (maybe we’ll all be surprised!). I’m hopeful that there will be a cure for the generation after me. This problem is not going away and its victims are NOT lazy, worthless people who want to get out of working. Its victims are doing their level best to get through the days and, perhaps, spare their loved ones by pretending to feel much better than they do.
So, where are my great words of inspiration? I don’t really have any. But I’m still thinking, still laughing, still enjoying my husband and son, still taking care of my elderly dog, still talking to my friends (and seeing them, on occasion), still doing the laundry and some cooking, still running the house, and still HERE. This thing didn’t take me completely down (it puts me in bed quite a bit though). It just altered my course. It’s ok to grieve the change in course because it’s an enormous loss. Fibro sufferers had plans, dreams, and lives that were stripped away. Somehow we pick up again because we all have to. The alternative is not and cannot be an alternative. My brother took his own life and this family lives in the dark aftermath of his actions. I won’t ever put my family through that hell. Also, we DESERVE to be here and only those with character wonderful enough to stand by us will do so. Keep this in mind – there are some truly questionable and even evil people out there who feel quite worthy of living in this world. WE are going to allow ourselves to feel “less-than?” Uh-uh. We also exist in a culture that seems to turn its back on the natural process of aging (we’re all aging people…your internal organs don’t care if your lips look great…you’ll just look better than some with organs the same age as yours) and constant pain seems to drive us even further into isolation. It’s hard to feel lovely when you’re bracing yourself on the back of a chair. Oh well, it is what it is.
Here’s to today my fellow Fibro warriors! Whatever it brings or doesn’t bring, we’re here we’re warriors in a way that only other Fibro people can understand.