What the Heck are They Talking About: Neurological CFS: Carl'a Stevens on Life with Chronic Illness

Carl'a Stevens: My description of my life with chronic illness . . ..

In the simplest of words I want to say cheated, robbed, debilitating, crippled, my life stolen from me and anything else you can think of that explains the death of your old life as a human being on this earth. In other ways I can say I found a new life, with more meaning. A life that has humbled me, teaching me new ways to adapt to what has been changed.

I have watched myself go from walking miles to walking only minutes. I have seen my face change from vibrant to stressed and my body from youthful to aged in a matter of a couple years. I have seen myself go from running up flights of stairs to crawling up them and scooting down them on my rear end. At times I wonder, am I 31 or am I 71?

I question my future . . . Will I still be walking or in a wheel chair? I use a cane on bad days, but will it become a way of life for me later? Will I be able to go to my son's football games shouting from the stands, or will I be on the sidelines watching in uncomfortable pain?

People who do not understand this illness cannot possibly understand what goes on in our thoughts daily. The questions, the concerns, the worries.

No matter what we are told about taking it one day at a time and how we need to relax and make the most of our life, no matter how often we hear this, it still doesn't seem to leave our focus. It is what we think of when we wake up and what we think of when we go to bed at night. It is in our thoughts all the time because we feel the relentless pain and fatigue all the time. We wake up feeling it, we focus our meals around it, we socialize based upon how we feel for the day and how much we can handle activity wise, we take meds or don't take meds depending on what we are going thru . . . all these things affect every aspect of our lives. It is an indescribable feeling. Those who have this illness know the unpredictability of it. We never know how we are going to feel from one hour to the next. It all depends on what "IT" wants to do.

Once in a while we find ourselves having a day that is so blissful . . . no pain. . No fatigue, everything is like a dream. We forget our limits in that moment and live the day out like we are totally normal.

Then just as quick as it has come, it leaves and our bodies respond to all the activity we brought upon it on the good day. In spite of how gloomy this all sounds, I have found peace with it. I do have bad days as most all have with this, but yet in the midst of it all, I have learned how to manage it some and how to live with it. I have no choice but to live with it.

I do not want to become a statistic to the suicide trend that Fibro had become for many. I don't want to give up and let it dissolve my life either. I am not ready to give into it all yet. I am not ready to accept that I am disabled due to it. I am not going to let it take my dignity and rule my life. It has to a certain degree, but it cannot have it all.

I am still my own person, my own woman wanting to have some control yet of my body. I want freedom to make choices on my own whether or not I can or cannot go to the store, walk to the park with my son, go to a family function, work, and talk on the phone.

All these things can be robbed completely from me but I won't let Fibro take what is left of me. I have no control on to what degree the Fibro wants to attack me. It can bring me to my knees, but it will not defeat me.

I will not let it take from me my as a whole, my dreams, and my independence. I need to hang onto what little bit I have and fight it all with the will power I have. I am too young to suffer this way and say, ok you have me. I may have to suffer, I may cry, I may struggle, I may yell and feel robbed, I may complain and I might try to find a cause of it all, but yet, I am still here with it, living, breathing and I am still alive.

I have a purpose and am trying to find a reason for it all, a meaning for why it has selected me. I know I am not alone and there are others who feel as I do. If I focus on the ifs, why me, and what will become of me I am only wasting my time in finding meaning to it all.

I will never find the purpose for it, but I know that God knows His reasoning. I am thankful for this illness in a way because it has changed me in so many ways that are positive that I had never expected.

I have found peace in knowing that thru this illness, I can use it to help change the way people treat those with chronic illness. I have an opportunity to help change the world's thinking and help spread awareness and hope.

If anything I can say about all of this is that I have been humbled as a person, sensitive to others needs. The desire to find all the answers has been instilled and the wanting to help others cope ...This has been my therapy. Trusting the Lord with every aspect of my life and finally learning to let go and let Him take over. Knowing that I don't have all the answers and trusting that some day I will see the true reasons why.

Until then, I would be selfish in just sitting and complaining and not doing anything with it. I think in all our lives with Fibro and chronic illness in general, we find this to be true. We have a bond that no one can even understand.

I have great supportive friends, supportive Husband and family, yet I know they cannot possibly really know what it is like to feel like you have the flu everyday. They don't know what it is like to hurt and ache all the time. Their headaches are our good days.

I am grateful to the people in my life who have made a difference and do support me though. They help me keep going. With my faith in God, my family and friends, life with their burden may seem much lighter.

It is important to find support. Some aren't as fortunate and have no one in their lives, but finding a support group or support network is the best way to cope when you feel you have no one. The groups develop friendships that last a lifetime and the much needed support to handle life's tough days.

~Carl'a Stevens

Kate's note: Sometimes (probably many times) someone else says it better than I, and on such occasions I hope to post the thoughts of others in addition to my own. However, nothing will ever be included without the author's permission, which Carl'a has graciously provided. Carl'a's website is chock full of information and provides a spiritual home for people who are trying to reconcile their faith with what is happening to them. Please take time to visit her.

What the Heck are They Talking About: Neurological CFS

Carl'a Stevens on Life with Chronic Illness

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