Even after all this time since I was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome, I can tell that most of the people who are close to me, have absolutely no clue what it means to live with these illnesses.
Perhaps it's my own fault, I may not have explained thoroughly what kind of effect these two illnesses does have on me and my life? After all, most of the time, I'm embedded in this thick fog, called fibro-fog, with the outcome, my mind and speech does not cooperate, and often, I have difficulties remembering words. When I try to explain, it usually do not come out the way I had planned it in my own head, and it may sound unclear and confusing to you, and believe me, it's extremely confusing to me, with the outcome, I feel dumb and slow.
Perhaps it's because when my friends and family do see me, they see me only on those days when I feel fairly well, not realizing, my pain is still with me and so are my exhaustion. They assume, I must feel fine, pain free and full of energy, since I join them for a stroll in the park or go shopping together. They do not understand, it's tiring and exhausting to present myself to them as normally as possible, not letting them understand how much pain I'm in.
This chronic fatigue and pain-based illnesses can fluctuate quite rapidly from one day to another. Or from one hour to another. Just because, I took a nice walk in the forest yesterday, doesn't necessarily mean, I can repeat this today. And since I took that nice walk in the forest yesterday, my pain and fatigue have escalated. and I'll pay for it dearly today, the day after, and many times, even longer.
On those days when I'm up and around, I feel strong mentally. That's the only difference from those days when I can't crawl up from bed, but remember, I'm hanging on by the thinnest of threads since my pain and exhaustion are pretty bad. Each step I take in the park are filled with pain and exhaustion. The loud noise in the movie theater is terrible painful to my ears, and it will take days to recover from it. All those cars and people on the street, leaves me unfocused and tired. The bright lights and loud noises in the stores, turn my fibro-fog into a nightmare. Trying to follow a conversation leaves my mind and body exhausted .
Perhaps it's because when my friends and family do see me, they see me only on those days when I feel fairly well, not realizing, my pain is still with me and so are my exhaustion. They assume, I must feel fine, pain free and full of energy, since I join them for a stroll in the park or go shopping together. They do not understand, it's tiring and exhausting to present myself to them as normally as possible, not letting them understand how much pain I'm in.
This chronic fatigue and pain-based illnesses can fluctuate quite rapidly from one day to another. Or from one hour to another. Just because, I took a nice walk in the forest yesterday, doesn't necessarily mean, I can repeat this today. And since I took that nice walk in the forest yesterday, my pain and fatigue have escalated. and I'll pay for it dearly today, the day after, and many times, even longer.
So please, do not assume I'm fine just because you see me up and walking. Do not assume I'm pain free and full of energy. In fact, nothing could be further from the truth. It takes all of my willpower and energy to be up and out of my safe, quiet environment. However, I too, want to live once in a while, so I push myself to do things, but please remember, I'm still in pain, and tomorrow, I'll pay for it dearly.
