Posted in chronic, Fibromyaloga, rheumatoid arthritis

The Hardest Part

The hardest part about living with chronic and deliberating conditions is the fatigue and lack of energy. I have spent most of the day lying down and not really being as productive as I wanted to be.

For years, researchers have spent time looking at the correlation between chronic illness and fatigue and they have found that fatigue is more deliberating than the illnesses themselves. In some instances, people are disabled simply because of the fatigue related to their illnesses. For me, that is not something I want to hear because I cannot slow down and the thought that I would have to become dependent on others scares me.

If you ask people who live chronic illness, they will tell you they suffer from fatigue more than the disease itself. To suffer means that the fatigue wrecks havoc on their lives and does not allow them to do the things that they like to do, i.e. their jobs, their hobbies, and family time. Now this does not just apply to fibromyalgia and RA, this applies to other conditions such as diabetes, heart disease or asthma. In addition, doctors do not look to treat fatigue because their focus is on treating the condition itself. This is a mistaken approach because if we perceive that treating a disease is more important than addressing fatigue, we are still pushing people into a disability. Ignoring the fatigue component of disease does not help the patient if treating the disease is working. Therefore, fatigue should be treated separately. Fatigue is disabling because it limits a person’s ability to live a normal life. That is a disability if you ask me.

I have spent a lot of time being sick, and all I can do is keep trying and looking forward to the good days. I don’t make plans anymore because I have no idea how they well turn out. The only planning I really do is thinking about what needs to be done and prioritizing. I am a type A personality and fatigue turns my life upside down not just on physical level either. It is very depressing to feel weak and unable. Therefore, I figure if I stop moving, then my conditions win.

Friends and family tell me that I take on more than I should but I want to feel useful. I don’t want to rely on others, but I know I have to. I cannot carry my toddler any more, and I rely on my husband and my ten year old. I am in the legal field and I type and write for a living. My biggest fear is losing control of my hands. I express myself best through my writing and I don’t know what I would do if I could not use my hands. The mornings when I wake up with my hands curled up bring me to tears but I have learned that crying solves nothing. I guess, at some level, I have become numb – that is really the only control mechanism I have against my diseases.

I write about my conditions and what I go through on a daily basis because I know it helps others who live with the same fears that I do and who can’t express them as well. It also gives me a voice because I feel like RA and FMS take that from me through the fatigue, pain and the weakness. I have to deal with many weird symptoms living with these conditions and they can be frustrating and embarrassing. For example, a few evenings ago, we were out for dinner, and I kept getting these shooting pains on my left side and I really needed to get up and move around. However, I didn’t want to walk around the restaurant looking like an idiot so I just stayed there trying to keep myself together.

I am frustrated that I am sick and I will never go back to living a normal life, but at least, talking about helps me relieve the stress and it also helps others who are afraid to talk about their fears and their struggles. I have also learned that I am not alone. After all, the majority of the United States population isn’t healthy – nearly one-third of the American population lives with some kind of chronic illness. Considering that in July 2009, the U.S. population was 307,212,123 – that is a whole lot of people.

So, what are the ingredients for living with a chronic illness? (I will address these separately in later posts but here they are.)

• A Positive Attitude

• Willingness to take Personal Responsibility

• Courage

• Assertiveness

• An Open Mind – Especially to New Experiences and Information


7 thoughts on “The Hardest Part

  1. Wow, 1/3 of the population suffers from a chronic illness??!!From what I've read on your blog, it seems that you have all 4 of those ingredients!

  2. I agree with your first statement. It seems like I have really hit a "wall" with this fatigue and vaguely remember what it is like to really feel refreshed and alert. I never know if I am going to be able to participate in things that normal 35 year old adults participate in. It is so frustrating, but I guess I just have to take it day by day. That's all I can do.

  3. I don't really believe that we won't go back to a normal life. I believe we are just in transition right now. Our bodies are taking us in new directiions and while it is navigating us to where we need to be, it feels frustrating. But, a normal life will return. It may not be the life you had before, but it will be a good life. A lot is happening to you right now with disease, family life and work, but you have will power and you can erase those pictures of curled up hands and see yourself laying next to your baby on the couch or doing something fun with your 10 year old. That's what I have to do anyhow. Take it easy. Be good to yourself and know that you will come out of this and be that much stronger.

  4. You are so correct about the fatigue being worse that the pain from what I live with. I hate this for all of us. For me, it's not just the fatigue either. There are days I have to shut myself down emotionally just to be able to get through the motions of day to day life.

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