The following information is given to help you better understand the psychological affect of living with chronic pain conditions. During the 8 years I facilitated a support group for people living with chronic pain, I found people need to know they are not alone. There are others out there going through some of the same issues. You are not losing your mind. And what you feel is real. I share this part of my life with you in hopes you will know you are not alone. If I can help, please don't hesitate to contact me by email at: firstname.lastname@example.org
From 1990 until 2003 I was living a fairly holistic lifestyle. I was married and raising three children while living at Heritage Lake. I went back to school at age 30 and started my own massage therapy & yoga practice near our local hospital. I was journaling and meditating daily, and living most days filled with Spirit. Life seemed to be going quite well. For the most part, we were living the dream.
Sometime in 2003 I started having bouts of pain and fatigue that would last several days at a time. My loved ones kept telling me I was doing too much or I was under too much stress. Eventually the bouts of pain and fatigue became more frequent and more intense. The doctors told me I was depressed, overweight, and too sedentary. They ignored the fact I was running my own business, teaching yoga classes, and raising three children or that I had no other symptoms of depression!
Instead of taking the anti-depressants recommended by my doctors, I turned to what I knew about holistic health. I incorporated essential oils and yoga into my daily routine, I got weekly massages, and I stopped eating white flour and sugar. I tried to exercise but that intensified the "flares" of pain and fatigue. I thought I was managing this off and on but I had no guidance and I was gradually going down hill. I was losing "who" I used to be. I felt like I was losing myself and my ability to have a sharp mind.
Now I was becoming depressed, but it was because I was now in constant pain and nobody seemed to know what to do with me. I saw one specialist after another. Each one implying they had the answer but would soon send me to yet another specialist. I finally landed at a pain clinic where I met a doctor that started me on anti-depressants, anti-seizure medication, anti-anxiety medication, and too many others to name. Before I knew what had happened, I was taking 14 prescription medications; all from one doctor! Every visit she changed something; a dose or a new medication. I was becoming a zombie... My life was falling apart; I was going through a divorce and eventually lost my home, and then my business.
Is Fibromyalgia Deadly? It almost was for me...
Standing at the kitchen sink I was losing myself in the sunset falling over the ice-glistened cornfields. Feeling the cold air coming from the window sill I contemplated, “How far would I have to walk before freezing to death? How much more could it hurt? How long would it take to become unconscious? Would anyone ever find me?”
I had been thinking of ways to end my life for several months now. I didn’t want my children to find me. Maybe if I walked out into the middle of a frozen corn field nobody would find me and my children wouldn’t have to know I wasn't strong enough to live with the indescribable pain that no-one else seemed to understand. One day I would just disappear and nobody would ever need to know what really happened. No body, no funeral. Just gone. (This is how a depressed mind works.)
An hour later, sitting on my bed with the door locked, I poured every pill and every patch into a gallon bag. Fentynol Patches, Lidoderm Patches, Roxicodone, Tramadol, Lexapro, Vicodin, Xanax, Cymbalta, Neurontin, Xanaflex, Flexeril, Synthroid, and Prozac. I then drove down a dark country road, parked my car, and spent several hours crying, gathering up enough courage to start swallowing what was in that gallon bag.
While sitting alone in my car, the memory of my co-workers funeral passed through my mind.
I stood near her casket with her two older boys (12 & 17) seated to my left and her husband and 4-year old son seated in front of me on a small love seat clutching one another. I remembered the pain those children felt from losing their young mother.
Then I imagined my children sitting on that small couch clutching one another and sobbing over losing me.
I screamed at the top of my lungs, "What am I doing? God, this isn’t me! I need help!” Then I cried some more and I screamed some more. I can't say exactly how long I sat there, alone, in the dark, on a dead end street. But I was safe for that night because I kept the image of my children in my mind and I would never want to hurt them like that.
The desire to end my life was so tremendously strong, I knew it wouldn’t be much longer before I had no strength to see through the depression and stop myself. Eventually, I drove to my mothers’ home and asked her to take me to the hospital. At first she didn’t realize how bad I was. Then I showed her the pills and told her about my thoughts. Her baby girl was no longer the person she watched grow up into a strong woman. She knew I had Fibromyalgia but she didn’t understand what it was like to live with it every day. Neither of us knew just how much she was about to learn.
My mother took me to the hospital. I don’t know that I ever felt so afraid or alone. I sobbed when I had to say good-bye. Neither of us knew how long I would have to stay. I wanted to turn away and run just before the double doors locked behind me but I knew I had to stay. I knew it was the only way to find that person inside of me that I had lost.
I spent almost a week in the psych unit at the hospital. I requested help getting off the medications given to me by a pain management doctor. Since they only work with depression on that unit, they had to call in a pain specialist to see if they could get me off the narcotics safely. If not, I would have to be transferred to another unit for observation while going through withdrawal. The specialist wanted to try a drug called Suboxone. He said it would allow me to stay in the psych unit by limiting the effects of withdrawal after the first 24 hours. He said I had to be off all the other meds for 24 hours then he would start the Suboxone before the withdrawal symptoms started taking effect. So we stopped all meds and I was to see him the next morning.
The specialist didn't show up until 10pm the next night! He wasn't answering his pager. There was nothing anyone could do until he ordered the Suboxone. Hours 24 to 36 were pure hell! The pain searing through my body was worse than the fibro pain. The sharp stabbing pains in my stomach caused me to sweat but I was freezing cold. I couldn't sit still and the nausea just wouldn’t let up! They couldn’t give me anything to calm the withdrawal. I just had to wait it out, alone and in a unit that didn't know how to treat patients with narcotic dependency.
Finally the doctor showed up and within 30 minutes of taking the Suboxone the nausea stopped, the chills and sweats stopped, the stabbing pains in the stomach stopped. And for the first time in 18 months the intense fibro pain was gone. I wasn’t sure if I was happy to be without pain or angry the pain management doctors put me here instead of treating me properly. It was several more days in the psych unit before I would go home. That is entirely another story in itself.
The next six weeks I spent my days in the intensive outpatient therapy facility. Six hours a day, four days a week I was in intensive outpatient counseling. The pain was under control and I was no longer suicidal on a daily basis. At least for now I had the tools necessary to help myself.
In January 2009 I had an appointment with Dr. Arbuck at Meridian Health Group to learn how to manage my pain and depression. I was afraid to go. The last two pain centers just sent me to physical therapy and gave me prescription narcotics with anti-anxiety and anti-depressant medications. When the pain would get worse, they simply increased the meds and stopped the therapy. Pretty soon my body became dependent on the narcotics and they would stop working. So the cycle continued, they increased the meds until they stopped working again. I didn’t want to go through all that again. I wasn't strong enough to go through it again.
Much to my surprise Dr. Arbuck and his assistant, Nicole, were convinced they could get me feeling better in about 2 months without narcotics. Dr. Arbuck promised it would not be easy and I would want to quit before those two months were over. He was right. I wanted to quit but more so, I wanted my life back!
I did everything they asked of me. I started out with physical therapy, occupational therapy, and counseling. Dr. Arbuck created a combination of medications that worked with my body then made very slight adjustments as needed. They did x-rays on my legs, feet, hands, neck, and back. I had a sleep study and was fitted for cpap equipment. I saw a podiatrist, had injections, and was fitted for orthotics. I saw a neurologist for my sleep apnea and narcolepsy. I saw an anesthesiologist for injection therapies. I spent time in the oxygen chamber, got trigger point therapy injections, x-ray guided injections for the deteriorated discs in my cervical spine, cranio-sacral therapy, I.V. therapy, and nutritional supplement infusions. I learned to use a TENS unit and ice massage. I still see different therapists as needed and my physicians’ assistant, Nicole, who monitors everything and tweaks medications as symptoms change.
At Meridian Health Group, now known as Indiana Poly Clinic (IPC), they got me stabilized, put me on a maintenance plan, then started weaning me off the medications. It is their goal to get each patient on as few drugs as possible with the most effective treatment outcome. They never looked at me like I was just overweight or a hypochondriac. Every person I met called me by my name and smiled with compassion. They treated me like I was a human being with feelings, a life, and a future.
I am still compliant with all medications, treatments, therapies, and exercises. I know this will be a life-long process for me. But because of Dr. Arbuck (and his entire staff) caring enough to show each and every patient compassion and understanding, I have found that person inside of myself that I had lost. Because of Meridian Health Group (now IPC) I have a quality of life I thought was gone forever.
From the day I got out of the hospital until the spring of 2011, I lived with my mother (for the first time since I was twelve years old). With the support of my father, clients, and friends, she cared for me for that entire first year. My father would pick me up and take me out for long talks over lunch reminding me he was never too far away. We spent a lot of time together reminiscing and sharing and this was a huge part of my healing process. He and his wife would send me essential oils to ease the side effects of the medications and induce healing. My clients sent me cards of concern and gifts. One client even made me a blanket (that represented all my clients) to wrap myself in during my daily naps so I would know I wasn't alone. My community of family and friends came together to support the work I was doing to get my life back.
I eventually started working again and very gradually built my strength and stamina. Then I was able to return the favor by caring for my mother while she went through two knee replacements within 6 months of each other. I consider those three years to be sent from Heaven. I always thought my mother was my best friend; now I am sure of it.
I have recently built a home with my life-partner, Jerry, in the Fishers/Fortville area where we can be closer to my mother and other family members. I am fulfilling my lifetime dream of working from my own home and have finally found my place to plant new roots.
My journey with Fibromyalgia isn't over. I manage it every single day with the help of my entire support system (family, friends, co-workers, doctors, holistic healthcare practitioners, and more). Together, they make up an awesome team that works together for the betterment of my life. It's my mission to help others as much as I have been helped. You can read my blog to learn more about how I've dealt with the day to day issues of living with Fibromyalgia.
Bless you, my friends. Every single one of you are worthy of a journey that is filled with love and light. Please find your light and let it shine! As you do, your light will be reflected back and you will see just how beautiful you really are.
I have found my light through an organization call the Human Awareness Institute (HAI Midwest). I have completed three levels of personal weekend retreats and look forward to attending more.
For questions or to speak with Lesley about her journey, please send an email to Lesley@livingbetter.life or text her at 317-730-6811.