I have lived with pain in some degree for close to 25 years. As a child, situations became overwhelming because of overstimulation. Noise made me irritable, I would go into another room to find quiet away from too much activity- even at Christmas! In my teens, I had a hard time sitting in one place, such as when we traveled. Sitting in the car for hours made my hips ache terribly. I had strange skin sensitivities and rashes that the doctors said were allergy related, although no allergy medication did more than make me drowsy.
I tried not to complain when I was hurting or tired because of the many times I heard, “It’s just growing pains,” “If you get up and do something, you will feel better,” “You are just trying to get out of doing___,” or “There is nothing wrong with you, it is all in your head.” Because of this, I thought it was just me, and that the amount of pain I had was normal- everyone had it.
I often went months with no problems, and had times where I practically lived outside, walking and riding my bike all over town. Eventually, during one of the worst times, I complained so often about the pain in my hips and knees, my mom took me to a doctor who told me I had arthritis. He said to take ibuprofen when it hurt, which did not help stop the pain at all.
Searching For An Answer
In my twenties, I got married and had my son. Surprisingly, in hindsight, I had no pain issues while pregnant, and other than being highly fatigued with occasional swollen ankles, no other pregnancy concerns either. Shortly after having him, I began to have health problems including kidney stones, migraines, knee, back and hip problems, and other random aches and pains. Some mornings the pain in my hands and feet were so bad I could hardly make it through a shower, down the stairs and through breakfast with my son. After seeing a few more doctors, I was told I had Rheumatoid Arthritis. I went to physical and occupational therapy, took medications that did not help me and which had awful side effects, as well as the potential of causing long-term harm to my eyes and liver. I got counseling. I lived in fear that I would be wheelchair ridden, physically disabled before my son was even out of high school.
Through all of this I worked, usually full time. I was a wife and mother. I had my first house and all it entailed. I opened and ran a used bookstore. Many times, I didn’t have the energy to do the household chores, or run errands. My friends would come over to help with my dishes or laundry. They and my family were my saving grace in a tough time. I spent many days flat on my back in terrible pain. I often had my parents or grandparents take my son for the day because I just couldn’t take care of him. I would make plans to do things, and then have panic attacks, because of the pain I knew would come if I became too tired. Sometimes I would be so tired or miserable; I could not follow through with the plans at all. I stopped making plans. Routine shopping made my skin crawl, and gave me headaches- especially at Christmas time- or in a mall.
My ex-husband would tell me I was lazy, or a slob because I couldn’t keep up with the house. He called me a hypochondriac when I would mention aches and pains, or say I felt I needed to see a doctor for something. When I would miss some family function because of pain or fatigue, he would say I was making excuses not to see his family. I spent a lot of time with friends because they were understanding and helpful. The frustration of an unsympathetic marriage became immobilizing. I had severe depression because of all he told me I should be doing, but knew I was unable to do, and the guilt I felt because of it. In part because of my low self-esteem and feelings of failure, I filed for divorce.
Around the same time, I had a work-related accident, which left me with crippling back pain. After months of physical therapy, I found I needed back surgery. I went to a Rheumatologist, afraid I would trigger even worse flares of the Rheumatoid Arthritis, or that it would attack my back. Since the original doctor I had seen had moved out of the area, I saw a new one. He spent about 30 minutes talking to me about my symptoms, the timing of them, frequency, etc.; he spent another 30 doing tests- blood work, physical limitations, and a tender point test. That test just about sent me through the roof! This doctor listened more closely than any other doctor I had ever been to. He did not just make a conclusion based on 5 minutes of knowing me, he was very thorough! He said he did not believe I had RA, but needed to wait for my blood work to come back to see if I did have RA or another rheumatologic disease such as Lupus.
When the results were all in, the doctor had me return for a consultation. He told me that what I had was Fibromyalgia. I was elated! Instead of a progressive degeneration of my body, which would cripple me, I had a Syndrome, one that worked in flares and regressions. I could handle that, right? Just give me the meds and I will be on my way!
What Is a Good Day Like?
I have some degree of pain every day. On good days I can get showered, dressed and go to work. I can get through my day without anyone asking if something is wrong, and without losing patience with others. I have re-married. When I get home, I can probably do some errands, and manage to feed my family. I could pay attention to my husband and kids’ needs without being snappish. My pain on days like this is likely limited to achy feet in the morning, and stiff neck and back if I sit too long. At the end of the day, I probably need to sit and read in order to relax tense muscles before bedtime.
A Bad Day?
A bad day is usually preceded by a night with little sleep, aches and night sweats (the kind where you have to get up and change…ick! Night sweats are a symptom, but also a side effect of the medication I take for sleep and chronic pain.) When I wake up, my feet typically feel like the bottoms are bruised, my joints sound like Rice Krispies, and my neck is locked up. I take a shower (hot, because cool water actually feels as though it burns) and try to stretch. I dry my hair in stages because my arms get tired while I do it. I blow dry my face on cool so I can put makeup on, otherwise my skin is too moist, and lets the makeup slip right off (my make up only usually lasts until lunch on these days.) Then I go through my closet trying on outfit after outfit until I find clothes that do not hurt. Some fabrics are painful to wear because my skin often feels sunburned. Others are too tight and feel restricting (especially bras and elastic bands). (Read Katrina’s article: Dressing from head to toe)
When I could go to work, I could usually tune out the worst of my pain. Those that know me best know that I was passionate about my job and can be totally consumed by it. As an in-home behavioral therapist, I was up and down on the floor with children, and driving between clients. Once I was driving, it was all I could do to get to the next home. When I finally got home, I would put on the loosest, baggiest clothes I have, take a painkiller and muscle relaxer and hit the couch. I have recently left my job because of this.
Usually I will read a little, and then take a nap for an hour or so. On the worst days when I am asked what is for dinner, the answer is, “Whatever you can find.” These are the days I am on the couch until it is time to go to bed. These are the days I have everything from migraines or random shooting pain, to crippling muscle cramps and hot flashes. They are the days when hugs hurt and when my husband lightly rubs my back or arm to comfort me, he gets his head bitten off because it is so painful. My temper is short and my words sharp. The weekends following these flares (and they can last days, or weeks) I move from bed to couch, back to bed. The dishes and laundry pile up, the floors get sticky. I feel useless and pathetic. I have been more frustrated and ornery with it this time, but it has also forced me to accept that this is part of who I am, and learn that I have to recognize it will always be with me to some degree. I am still grieving for the things I could do yesterday, which I want to do today. I am acclimating to the push-crash cycle I tend to put myself into.
How I Cope
I try to evaluate every situation; how will this situation affect me tomorrow, or next week, if I skip it? I know I have to live in the moment, and have learned the rules of “play and pay”. I have to weigh chores, trips, and tasks with “is it worth the pain I will pay with if I do it?” I try very hard to look at each day individually. Am I always able to do this? No, I have many days when I have little pity parties. Sometimes that is healthy, as long as they do not last too long!
I have been more frustrated and ornery with it this time, but it has also forced me to accept that this is part of who I am, and learn that I have to recognize it will always be with me to some degree. I am still grieving for the things I could do yesterday, which I want to do today.