Do You Just Look Healthy?
All too often people look at you, as a Fibromite and they think that you are healthy because you look healthy. This is a good thing, looking well. However, it is frustrating to realize as long as you look good few will take you seriously when you say you don't feel well.
In one sense of the word, you are healthy. (In that Fibromyalgia will not actually kill you.)That having been said, however, does not negate the fact that you hurt like heck.
Fibromyalgia is a disease that is frustrating from the get go. It takes forever for people to understand what the disease is all about. Once they comprehend just a small amount of what you are going through folks tend to be in a silent denial. This is because they actually do not understand fibromyalgia.
And Most who do not understand the disease also do not fully comprehend chronic pain, or chronic anything.
I used to carry a card with me that would say, “If I look good today I am very grateful for that. I actually don't feel very well. I feel as though someone ran over me with a truck. My head hurts my legs do not want to stand up and my back is in pain.
The fact that I look good is very important because it makes me feel better to know that I'm not putting my burden on someone else. I hope that you feel as good as I look. Have a nice day."
People who have Fibromyalgia never actually feel good. We are constantly in some sort of pain. We realize that others do not understand nor do they want to necessarily understand the disease called fibromyalgia. They do not have to live with it.
This is not because others do not care; it is because life is so busy and so full that our brains have a hard time wrapping around a disease as ambiguous as fibromyalgia.
If you will check out my hub entitled Sharing Your Diagnosis of Fibromyalgia,you will find some of the things I did to help others understand me and my disease.
There are tons of books out there that explain Fibromyalgia. It is not an easy task - explaining this disease. Each of us are different and yet we are the same.
There are so many symptoms of Fibromyalgia, that to list them all would take more time than I have available.
Here are just a few that I share with others:
Rigid nails (that I use Fungi Care on and it helps)
Constant drip from my nose (Puffs are great!)
Pain in my extremities (legs, arms toes) Pain Medications
Severe Back Pain - Pain Medications
A lack of balance (I get treatment for this twice a year)
Confusion at times (Where am I? or Where did I park the car? Etc.)
Sporadic Blurred Vision
IBS (irritable Bowel Syndrome) In my case, the flow flows, on and on.
My legs shake, usually one at a time.
Occasional Depression (I take daily meds for this)
Insomnia (sometimes the meds help, sometimes not)
Well, enough of that! You get the idea. The life of a Fibromite is more or less controlled by their active symptoms. Fortunately, all symptoms do not occur at once. Some do.
Having said that please understand, the disease does not rule you; it simply suggests that you need to make certain allowances on this day. You are in control; the disease simply talks to you constantly.
Self-esteem takes a hit after so many times of being told “it’s nothing, just weak muscles - exercise and you’ll feel good in no time.” So you exercise and find that you feel even worse than you did when you started.
Exercise is a delicate prescription to take. Each of us respond in different ways. I personally only use water therapy that is my type of exercise. When I am in the water I have no pain and no stress factors other people find it very refreshing to stretch for their exercise. Again we are each different and each must find our own path.
Sugar is a huge problem for Fibromites. More on that another time.
I work hard to stay mentally alert. I play word games, special games, memory games; any games that challenges my brain. I have this, probably unfounded fear, that if I do not work at using my brain it will turn to mush! I know that is silly, but it is what it is.
Now my secret is out. I’m human and full of fears and faults. However, a caveat - I am a positive person and that goes a long way to preserving sanity.
Staying positive also aids in good self-esteem. Sometimes you have to work at it, but it is well worth the time you put in.
That is not just a “feel good” statement. It is a matter of fact. I once heard that in Florida there is a cardiac surgeon who has all of his patients go through a month of something similar to a smile school. His goal is to make sure that his patients have a positive attitude going into surgery. I hear he has a 95% rate of success. Now that is proof that an attitude does make or break you.
In another example, the Comedy Connection at the Morton Plant Mease Health Care in Clearwater, Florida has been supplying and distributing hospital hilarity since 1989. The Comedy Connection oversees programs such as comedy carts, clown alley, and outreach programs to ensure that patients have an opportunity to laugh on a regular basis.See how they do it in this video. This is from the Society of Certified Senior Advisers
Yes, sometimes you will feel the lightening from within you, wanting to strike...don't let it out.
My take is, be as positive as possible, but never lie to yourself. If you practice finding the positive in life, when you need it most, it will find you.
Have a wonderful winter. Look for the sunshine inside. Smile a lot.
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