If you read last Tuesday's blog post, you know that I began my very own, Fibromyalgia and Chronic Fatigue Syndrome awareness Day. Every Tuesday, I'll share with you my own ordeal with these illnesses, and also provide you with important facts about Fibromyalgia and Chronic Fatigue Syndrome.
Hopefully, by sharing my everyday struggle, I may help someone in the same situation, not to feel so lonely. I hope, too, that non-sufferers of these debilitating and often "invisible" illnesses, will learn and understand better what it means to live with this, and how it affects our everyday lives.
Hopefully, by sharing my everyday struggle, I may help someone in the same situation, not to feel so lonely. I hope, too, that non-sufferers of these debilitating and often "invisible" illnesses, will learn and understand better what it means to live with this, and how it affects our everyday lives.
Tough pill to swallow
Last week, I mentioned that it took many years, before I finally was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome. As soon as I was diagnosed, it helped me mentally, because I finally knew what was wrong with me, but it also brought me grieve. The thought of never feeling "good" for the rest of my life is a tough pill to swallow.
I'm a person that hardly ever complains when I'm having a flue, or a headache, or any other aches or pains, so when the symptoms of chronic pain, aches and exhaustion started, I never let anyone knew about them. I figured, I had been working too much, or had been under too much stress, or it was the signs, that I was getting older.
I'm a person that hardly ever complains when I'm having a flue, or a headache, or any other aches or pains, so when the symptoms of chronic pain, aches and exhaustion started, I never let anyone knew about them. I figured, I had been working too much, or had been under too much stress, or it was the signs, that I was getting older.
Even the tears that trickle down my cheek are painful. . .
However, the weeks and months past by, and so did the years. It was exhausting years, filled with frustrations and chronic pain. It did not matter how much I rested, I was constantly exhausted and in pain. Many times as I did a chore, I just fell to the floor and cried, and even the tears that trickled down my cheek was painful. However, I would never let anyone see me in this state of mind, or show in any way that I was suffering. Instead I put on a bright smile, and told everyone, I was fine.
Surrounded by a thick, gray fog
In addition to the pain and fatigue, I developed symptoms of memory loss, hard time to concentrate, sensitivity to bright light and noise ( watching TV was not enjoyable anymore,) nervousness, anxieties and apathy. My surroundings appeared very diffused and muddled, like I was embedded in a thick, gray fog all the time. I had a hard time focusing when people spoke to me, and I had difficulties to find words when I spoke.
People closest to me started to lose patience with my loss of time, memory and my disability to focus. My chronic pain woke me up constantly during the night, which left me exhausted in the morning. Any kind of stress and anxiety would make my symptoms even worse. I avoided more and more to socialize, and my ability to work and pursue any quality of life, became radically affected.
The severity of Fibro-fog varies from day to day and from person to person.
Symptoms of Fibro-fog:
- Inability to concentrate
- Mental confusion and fatigue
- Impaired thinking
- Inability to recognize familiar surroundings
- Inability to comprehend written or spoken words
- Absentmindedness
- Loss of short-term memory
- Disorientation
- Trouble with directions
- Short attention span (seems like ADHD; sometimes speaking over others)
- Acquired dyslexia (includes difficulty speaking known words)
Lack of knowledge
Except for the physical torment, there is also the emotional pain of misunderstanding and/or lack of knowledge from family and friends. Perhaps rejection from spouse or your loved one. In many cases there could be financial and social ruin, since the person with fibromyalgia often lose their jobs. The overwhelming feeling of pain and hopelessness, combined with feelings of failure, guilt and broken dreams can lead to social isolation, severe depression, and even suicide.
Except for the physical torment, there is also the emotional pain of misunderstanding and/or lack of knowledge from family and friends. Perhaps rejection from spouse or your loved one. In many cases there could be financial and social ruin, since the person with fibromyalgia often lose their jobs. The overwhelming feeling of pain and hopelessness, combined with feelings of failure, guilt and broken dreams can lead to social isolation, severe depression, and even suicide.
BUT YOU DON’T LOOK SICK!
The one thing that makes fibromyalgia so hard to live with is the fact that you do not look sick. Fibromyalgia is also called the invisible disease, so even the people closest to you have a hard time to understand your situation. Usually, people who are suffering from fibromyalgia, try their best to give an appearance that nothing is wrong with them. They take extra care to look their best and when they meet people, they sound and look very cheerful, hiding the pain and exhaustion they really feel. However, all this takes very much of our energy, so we often try to avoid socializing all together. This behavior usually after some time becomes a quality of life, where you get more and more isolated from family, friends, and finally the world.
More facts on Fibromyalgia and Chronic Fatigue Syndrome, as well as my own story, how it is to live with these illnesses, will appear on this blog next Tuesday.
