The "S" Word

I’ve had so many different specialists over the years. I’ve been, and still am, a patient of a Rheumatologist (lupus), Cardiologist (heart), Nephrologist (kidney), Gastroenterologist (liver/ hep B), Gynecologist (women's parts), Neurologist (stroke/brain), Hematologist (blood), Immunologist (immune system), Psychiatrist, Psychologist and my General Practitioner. That’s 11 all up! Who has more? I dare you to compete..?

I have 3 autoimmune Chronic illnesses; SLE Lupus, Fibromyalgia and Hepatitis B. Also, during the process of writing my autobiography I developed Neurological Functional Disorder (NFD also known as FND).

Chronic illness is sickness that cannot be seen from the outside, many people find it difficult to understand when I say that I’m tired and or sore,“Living with an invisible illness is more difficult and stressful than living with one that is obvious”. I have had to learn not to beat myself up when I don’t get all that I wanted to do during that day and not let others who think I am just being lazy dictate to whether I should listen to my body telling me to rest or deciding if I have the capacity to keep going, therefore most likely having a ‘sick’ day the following day. I’m constantly misunderstood by others. People don’t understand what you’re going through, especially because the illness can’t be readily seen. They may judge, be indifferent.

Let’s think about the spoon theory. For example I wake up with 12 spoons for the day, and each activity I do during the day uses up a spoon, such like getting up is one spoon, dressing is about one and a half spoons, pulling the covers up on the bed is half, already I have used up 3 spoons with only 10 spoons left for the rest of the day. Each day I have to think about what is important for me to get done, knowing that I have only a certain amount. Chronic illness is erratic where some days you feel like you have all the energy in the world, and then the next couple of days you’re exhausted with just the thought of leaving the house. I struggle daily with how erratic Chronic Illness is because I have a very ‘on the go’ brain but I feels trapped in my body because I get body fatigue, walking more predominantly with a limp and or I may have sore joints and muscles that makes walking small distances harder and more spoon usage having less for other tasks during the rest of the day.

“Chronic is an interesting word, especially when it’s linked to “condition” or “pain”. A chronic condition has been defined as something that is “prolonged, doesn’t resolve spontaneously, and is rarely cured completely.” One doctor said that having a chronic illness is like having a career. You can do poorly or well at it. Doing it well doesn’t mean being cured; instead, it refers to your ability to cope and make needed adjustments. It’s learning to live ‘in spite of’.”

“A chronic illness is “forever” (with a few exceptions) and is often painful. And what accompanies it is fatigue, depression, and a number of other symptoms, depending on the specific condition. Chronic illness necessitates constant involvement with the medical community. Your life is changed, often dramatically.”

“Everyone has his or her own style of being sick”.

“I have “learned” how to be sick”. I’m constantly having to problem solve and adapt to new ways of living as there is no guarantee I will have loads of energy that lasts everyday, for example if I want to work everyday on developing my business/website, I now work in bed as I’m using less energy in bed rather than at my desk, also I no longer have a large to do list, now I focus on one goal per day, so I’m not setting myself up for failure.

• Quoted text from Coping with Chronic Illness by H.Norman Wright and Lynn Ellis.