WHEW College life has had me all kinds of tied up and down and stuck in tears and what not. I am done, well taking my final final today and then at the request of my 12 year old son, I am taking time off from school to help him focus on his education since I earned my first degree. . . and I’m tired. Any who. . . I had to write a paper for my class final and it was so emotional that I wanted to share it with all of you who care to read it so here it goes. . .
LIVING WITH FIBROMYALGIA
Ten years ago I was involved in a car crash that resulted in me having an onset of undescribed pain that went on for weeks before I decided to go and see a doctor. What followed my initial doctor’s appointment were continuous appointments with various doctors with no one understanding why I was experiencing pain. After my many visits of being poked and prodded and examined, I was diagnosed with a condition called fibromyalgia. I had never heard of that in my life and over the next few years I would learn in depth what it was and what it was doing and would continue to do to my body. At that time, FMS was not really a welcomed or accepted condition and it showed on the faces of many doctors who accessed me and my pain. The pain began as wrist pain that elevated to arms, shoulders then ankles and then what is now known as the “trigger point” areas. My entire body became inflamed in pain and life had become very hard for me. Everything about who I was changed and I didn’t like it.
I began seeing pain doctors, hand specialists, taking various medications, doing physical therapies all while trying to maintain my sanity. I was already dealing with depression so my anger outbursts that I’ve had since a teen became worse, my relationship with people deteriorated, my role as a parent became lost. I would cry myself to sleep in pain taking the 7 different medications the doctors believed were best for me. Those first five years I literally lived in my own personal hell. Medications made me suicidal, more depressed; the side effects of them caused so much confusion for my body that I stayed in a constant state of shock. I remember finally going to see the right pain specialist and receiving a book about my condition and treatments & in that book was a page with the title; “Learn to mourn your old self” just typing it brings tears to my eyes because I had no idea what it meant at THAT time.
I was not the same person physically or mentally and I could not do what Monique was used to doing. I couldn’t run, jump, walk too fast, draw, scratch myself without pain, sleep, or just be me. I began to walk with a waddle like a penguin due to the ankle pain & wore braces on both wrists to train myself to use my hands the “right” ergonomical way. I could barely eat a meal because I was so drugged up and was either sleep too much or never sleeping enough and that made life worse. I became a mother who took care of her child when she was awake which was not nearly enough time as it should have been, to this day I beat myself up with how much my son suffered because I suffered. I had developed other issues from this one condition such as arthritic issues in my wrists, skin sensitivities, allergies, seizures, accidental overdoses that landed me in the hospital twice, painful cortisone and Botox injections, the removal of my uterus due to too much additional menstrual pain and a total emotional shutdown. I applied for disability and was shot down each time because doctors didn’t believe I really had a real issue because FMS was and still is in some people’s mind a made-up thing that crazy people create. I felt like I was going crazy and my world came crashing down all around me but all of that changed when I really understood what that title on that page in that book meant and took control of my situation.
I had let this condition control my life – I stopped being me – but I wasn’t supposed to stop living I was supposed to adjust to living a different life from the one I was used to. The realization came when I met a nurse during my many appointments who told me that she too lived with FMS and that the first five years would be the worse and they were. When I finally begin to understand what I was supposed to do to live a better life I got into action by learning what my body was going through from the inside out. I purchased books on it, joined online support groups, saw a therapist for depression and began anti-depressants. I learned my body and how it was operating with this condition. I took control of the medications and learned what each one was and did to my body because for over two years I was taking a drug faithfully when a nurse practitioner informed me that the makers of the drug wanted it removed because it reacted like crack cocaine does in the system. It was then I realized how addicted I was to that medication as well as Vicodin. From that point on I stopped that med which put me through a two week detox, informed my doctor of my Vicodin addiction and began therapy twice a week versus once but all of that came at the price of losing faith in all doctors to treat me the right way.
Once off all medications my body went back to its painful state where my bones true strength begin to show all over my body among other things but something great came from that whirlwind experience – I finally learned to mourn the old me and welcome the new me who was a 30 year old mother that lived with a pain condition that hindered certain aspects of her day to day living but with research and healthy practices, she could become a self that she could like. I developed a way to deal with my condition: First, I never took a medication until I researched it and it’s interactions with other medications. I began exercising and watching the food I ate and the effects it had on my body and pain levels. I took therapy and made the best of it and began an anti-depressant that finally worked. I worked at my own pace and learned my body’s limitations such as my inability to run without terrible pain or that I can’t wear heels or stand for too long unless I wanted my ankles to feel broken. I knew that waking up and getting out of bed would be the worst part of my day but I worked with it. My sense of style changed when I found boots that were stylish allowing me to be me in fashion and yet be comfortable with pain. I eventually stopped the Botox and cortisone injections as my body no longer responded to them anyhow and rediscovered yoga and meditation to help ease the pain and then I owned it. My aunt would say, “Stop owning that condition, give it to God” but I am not religious so I couldn’t do that, so I owned up to my condition instead of it owning me and now I have the wheel of this vehicle.
Today I am 32 years old and living with fibromyalgia. I manage my depression and pain with one medication and OTCs when needed. I now know every inch of my body and its pain and what causes that particular part of me more pain. I still suffer from insomnia and skin tenderness along with a slew of other fibro related issues but we, fibro and I, live in unison to make life work for me. I know what to do to my arms when they start to hurt and how to self-massage myself, I know what foods aggravate the pain, the temperatures I operate best in, the length of time I can wear heels before my ankles start talking to me and I ignore the idiots who believe this condition is not real. For years I literally could not say the word disabled because I refused to believe that I was disabled but I now can say it and know that my disabling issues are not incapacitating. I am alive and well, breathing, laughing, and being me; a newer Mo Merrell than the old but it’s OK because I accepted those adjustments as growth.
Fibromyalgia is difficult to understand and deal with and in the beginning I thought that I would never get a hold of this thing but once I stopped the background noise and listened only to myself and my instincts about MY body, life became so much better. I am physically as normal as I can be, my son and I go on hikes and bike rides together, we exercise together and most importantly he is now aware of what I suffer from so that when I have a flare-up and get angry because nothing is working, he gives me my space. I cope by thinking of my ancestors and not just my slave ancestors but my human ancestors all the way back to the first bi-pedal humans and I think about how they lived in a world where pain crippled them and they had no technology and various pills to rid them of the pain . . . I say to myself: “If my human ancestors could live through the pain without all that we have today in medicine then so can I.” I look back on all of my pain journal entries and lists of medications and I get so filled with emotion because I am surviving this condition. I know that I will never be “normal” again and not feel this pain I feel every day but I have so much more life to live than living in a tomb of my own personal hell and I hope others also find their pathways to a better self.
There are a few quotes that get me through my flare ups which are: “Damaged people are dangerous. They know they can survive.” – Josephine Hart, “I am not who I am going to be. I am always becoming.” – Ruby Dee. Those two quotes help me to understand that surviving is more than just breathing, it is tackling all of life’s challenges and conquering them and knowing that we are never stagnant as beings, we will constantly grow physically, emotionally, and mentally – we will get ill and weakened by life, we will fall and rise until the day we take our last breath so I keep becoming. This last quote is what I live by on a day to day basis, what has gotten be through the introduction of fibromyalgia and getting me through my mother’s death; “Perfer et obdura; Dolor hic tibi proderit olim.” (Be patient and endure; one day this pain will be useful to you.) – Ovid. I have lived a very painful life emotionally, physically, and mentally from childhood and onward yet until I took control and is still taking control of my emotional, physical, and mental states I did not realize how useful my pains has been to me and can be to me. What I have learned, discovered, and witnessed about myself and my limitations has been amazing. Getting diagnosed with fibromyalgia saved my life because I was forced to value myself more than I ever had before if I wanted to live in a world where pain did not control me. I did not know that while working on the pain from fibromyalgia, I was working on myself as a whole – from childhood scars and onward. I mourned my old self and welcomed a new me that my suicidal 15 year old self never would have met had I gone through with my early expiration. I am now in control and it’s an awesome feeling, even with the pain.