Last night, I stared at the ceiling trying to fall asleep and wishing that the sleep would consume me and it wouldn’t. Lying there, I thought about the frustration, the questions, and the confusion that Fibromyalgia and Rheumatoid Arthritis have brought to my life. I thought again about the fact that chronic illness was lonely, and that no matter how much love and people I had around me, I always felt alone in my own body. I want people to understand what I feel and I am not often able to express it in words. Truth be told, no one can understand unless they have walked a mile in your shoes. Not one person, not your spouse, not your parent or children, and not even another sufferer with your condition. Chronic illness is a lonely deal and the more experience you have dealing with your condition, the more you realize that you are alone. It is your trial and error dilemma and not even your doctor really knows what it takes to be you living with your disease.
That trial and error process involves changing your lifestyle and diet in order to minimize and/or eliminate your symptoms. Shortly, after my diagnosis, I felt like I was thrown into no-mans land with no protective gear. I was scared about the road that my conditions would lead me and I was confused. I thought that two to three years later, I would have to leave my job due to disability. What I learned, however, is that I had a choice to be healthy and while there was no instruction manual, there was on the job training.
One of the biggest things I learned early on was that the days where I was too tired or too busy to eat, were the days I felt my best. Would you believe that if I starved myself I felt better? I am not sure if nutrition experts would agree with my method, but I saw a pattern and it came down to my diet. People with fibromyalgia, RA, and other chronic illnesses have food and environmental sensitivities and allergies. Through a process of trial and error, we learn what foods and environmental factors aggravate our symptoms, and when avoided, we have less symptoms. Sounds simple, but it took nearly two years for me to fully understand the specifics behind this thinking. I haven’t really taken on a specific “diet,” but I have learned to take a more careful approach to my diet. Often times, it really comes down to the nature of the food. I try to stay away from chemical additives and preservatives, but considering the food industry is about money and not health, that is not always easy.
My trick has to do with which sections of the store I shop in. I stay away from the processed stuff and do my walk around the outer aisles of the store, the produce the meats, dairy section, etc. That is not to say that that those areas are safe, but it is a work in progress. I buy meats that are only hormone free and pay extra for the eggs that are hormone free (it is only about 50 cents extra). I try to pick up organic produce but it is usually more expensive and when you are always broke, you often decide against the more expensive. I try to visit the local farmer’s market often but it is not always an easy task with two children in tow.
While I have learned to keep many symptoms at bay, in particular my fibromyalgia sensitivities, I still have not figured out the deal with my RA symptoms. The autoimmune symptoms seem to be about 60% controlled, but my pain symptoms are more like 40% or less. I feel like an old lady dragging my painful hips around, and some mornings, it feels like I have been hit repeatedly in both hips with a baseball bat. Then, there are my poor painful hands and fingers forcefully move because that is all they know how to do. I type for a living so my hands have to keep moving. They are stiff and often times, painful to move. My knees, my ankles and my feet often times feel like they want to give up. My shoulders feel like they are carrying the weight of the world. My skin and my eyes feel like they are literally eating me up from the inside out, and while, I have taken on the use of only all natural skin products, I have not had any luck with the issues relating to my eyes. Working a full time job means that I can’t always be sitting in the doctor’s office trying to find a solution to every ailment I have either so I keep plowing regardless of the symptoms and the pain.
On an emotional level, I try be confident because the other choice is more than I can bear. I realize that, while it is okay to express hurt feelings, I have to be willing to set an example for my children. I want them to see that success is possible despite obstacles. This morning, trying to get out of the house after a sleepless night was difficult and I whispered to myself that it was not easy considering how physically and emotionally painful my life can be and how broken I often feel. Then, I looked at my children and brushed aside that feeling of weakness. True, I was feeling weak and vulnerable but I didn’t have to show my kids that I was. They rely on me for my strength and showing them weakness will only scare them. My kids know that I am sick but it does not mean that I get to take away their childhoods by showing them how ugly, how sad, and how painful chronic illness can be.
There is no certain or specific code to living with chronic illness and making chronic illness livable is different for everyone. Trial and error is the only way to determine how livable our conditions have the potential to be. Moreover, lifestyle changes are not permanent because our conditions keep changing, sometimes worse, sometimes better. Chronic illness, for me at least, is about searching for a better quality of life. In order to live a better quality life, I have to be well informed about my conditions. I also have accepted the fact that my conditions make things in my life unpredictable. I never know whether my best laid plans will fail and I accept that. Not because I want to, but because I have to.
Finding a balance between being sick and being healthy means understanding that I have limitations and, at the same token, embracing the things that I am capable of doing and being. While, I didn’t invite chronic illness into my life, I have learned to be successful despite RA and FMS because whether I like it or not, it is a lifelong trial and error learning process.