Saturday, July 11, 2015

It does not define me, but it does sometimes limit me...

I try not to go on much about my health.  Today is one of those "exception" days.  Consider it a public service announcement :).

While there is nothing about me (yet) that will cause my death, my laundry list of ailments causes me pain or discomfort 24/7.   Anyone who is in pain 24/7 knows that it can affect your mood or attitude, no matter how hard they try to keep a smile on their faces.

Fibromyalgia is the biggest threat to day to day attitude.   Fibro is a day to day, minute to minute, unpredictable threat to my ability to leave my house....  even leave my bed on some days.   The discomfort, pain, and sometimes severe pain that comes with fibro, on an unpredictable timetable, can incapacitate me, force me to cancel or leave events, get grumpy, or just seem "drunk".

It is a silent illness...  you can't see it so how can you know I have it?.  People may not understand why I sometimes act inappropriately, and thus, judge me on my behavior.   As a very wise person once told me, "What other people think of you is none of your business.  They base their judgments on their own experiences... or their ignorance, neither of which is your problem."

I found some easily understood information on a few of the oddest of the fibro symptoms on and I am sharing a shortened version with you.

I do not want you to avoid touching me, avoid making plans with me, feel sorry for me, distrust me, or look at me differently.   I still want hugs, I want grandkids to sit on my lap, I want to enjoy outings with friends, and I want to meet my commitments.  I make every attempt to live a normal life and I want those around me to do the same.  If I can not, know that I wanted to.

Allodynia. You might not give a second thought to rubbing a loved one’s shoulders or patting a friend on the back. But for someone with allodynia, being the recipient of these simple gestures can result in excruciating pain. Allodynia is a heightened sensitivity to touch, which results in pain from things that normally would not cause discomfort.

Sensitivity to fragrance. This fibromyalgia symptom is almost directly tied to allodynia and occurs for many of the same reasons. “Increased light, sound, and smell sensitivity are all common,” says Teitelbaum. “We have an enormous amount of sensory input coming in, and it takes energy to sort through all of this to separate the noise from the static. Fibromyalgia predominantly represents an energy crisis, and as the body has trouble sorting through the signal from the noise, it reflects as increased sensitivities.”

“Fibro fog.” Also called “brain fog,” this is a very serious fibromyalgia symptom that leaves many people in distress. “Brain fog or fibro fog is a classic component of the energy crisis we call fibromyalgia,” says Teitelbaum. Some of the common signs of fibro fog include a difficulty with word finding or substitution, loss of short-term memory, and occasionally even episodic disorientation that lasts for about 30 to 60 seconds. “With this disease, calling one’s husband by another man’s name is not a Freudian slip,” Teitelbaum notes. He explains that there is no single cause for fibro fog; rather, it can be caused by a combination of many factors including low thyroid levels, poor sleep, hidden infections such as Candida, and alterations in blood flow to the temporal lobes of the brain, which regulate speech.

Paresthesia. Paresthesia is an unexplained feeling of tingling and numbness that people with fibromyalgia may experience. Often it’s related to anxiety or nervousness over the disorder and can be accompanied by rapid, deep breathing. This in turn can lead to acroparesthesia, a tingling in the hands and feet from lack of carbon dioxide.

Excessive sweating. Some people with fibromyalgia perspire heavily and may even believe they have a fever. This is due to what’s called an autonomic dysfunction within the hypothalamus, the almond-sized area in the brain that controls sleep and regulates sweating, bowel movements, and other automatic body functions. “The autonomic dysfunction causes the increase in sweating,” Teitelbaum says.

I know that there are many, more serious, disorders and illnesses out there in the world. 

I am blessed to have been given illnesses or disorders that are not considered critical. 

And I am blessed with amazing and wonderful family and friends.

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