Be it Lupus, Rheumatoid Arthritis, Multiple Sclerosis, or another one of the painfully debilitating chronic diseases, you will find some very similar fears and concerns facing those of us that deal with them. With each one of these diseases, we face times where the disease is flaring and very obvious, but also some will be lucky enough to find times of disease remission. It is during these times of flaring that progression and new symptoms may arise. It is in these times of bad flares that I face my biggest nightmare.
I have lived with an undiagnosed disease for the last 4 years. Doctors have tossed around the idea of Rheumatoid Arthritis and Lupus, though they are now leaning more towards Multiple Sclerosis. With either one of these diseases, the possibility of progression and loss of function in the limbs and more is a possibility. I also suffer from a severe chronic back condition, which has already required major surgery, though not very successful. It is with the combination of both of these conditions and an active flare that I am faced looking my biggest fear directly in the eye. What will the morning bring? Will I wake up with my arms not working? Will I wake up and not be able to get up because of no feeling or function in my legs? Will I wake up to only find myself still in the dark because my vision has left me?
It is the unknown answer to these questions that leaves me not wanting to go to bed, thinking that if I don’t fall asleep, it won’t happen. However, with my condition also causing chronic fatigue, not being able to stay awake usually wins out. While some people may say that I am expecting the worst and need to stay positive (these are usually people that are lucky to not suffer from one of these conditions), I have had this fear realized on many occasions, though the symptoms were short lived and resolved themselves with time. This fear of mine is not some crazy manifestation in my mind, as all of these are a real possibility with any of the conditions they believe I have. I have woken up in the morning and gone to get out of bed only to find that my legs would not support my body and I fall to the floor. When my condition started, within 6 months I had gone from an active person to someone requiring forearm crutches to walk and difficulty holding objects. This fear is a real possibility, as one of these days this short lived loss of complete function may just not be short lived.
This fear is only a fear that can be understood by those facing one of these conditions, as healthy people don’t understand what it is like to live the life those faced with a chronic condition are required to live. The unknown becomes our normal. The phrase “live every day like there is no tomorrow” becomes our mission statement, as we never know what tomorrow might bring. While this fear is something that I am always thinking about in the back of my mind, it has taught me to live every day taking full advantage of what I am given. The fear that tomorrow may bring an end to the way my life was today is always there, but I am determined to make the best of what I have each day. I encourage those that are walking in similar shoes as I am to take advantage of what you have today, and try not to worry too much about tomorrow. But trust me, as I say that previous sentence, I know just how hard it is to do that. No matter how hard we may try, the fear and worry is always there. We just have to TRY not to let it take control. Be it Lupus, Rheumatoid Arthritis, Multiple Sclerosis, or one of the many other autoimmune or chronic conditions, we must do everything we can to not let them define us.