Fibromyalgia: But You Don’t Look Sick!

I have an invisible illness. To look at me you would see a short, fat, middle-aged grandmother. Sometimes I walk with a cane, but most of the time I don’t need it. I have a handicapped parking tag hanging on the mirror of my car. I park in slots designated for people like me and get nasty looks when I get out of my car because I look healthy.

I am not healthy, and unless researchers find a cure I never will be. I have Fibromyalgia, http://www.fmaware.org/. It is a connective tissue disorder related to arthritis and lupus. The health professionals don’t know what causes it, or how to cure it. There is no blood work that says yes, you have it or no, you don’t. It is diagnosed by a list of symptoms and a series of pressure points on the body.

They symptoms of Fibromyalgia are many and varied. What affects one sufferer may not affect another. In my case it is chronic fatigue and chronic pain. The fatigue can be overwhelming. Just thinking about getting out of your bed or your chair is more than you can deal with. Doing everyday things like washing your hair may not be possible because you can’t hold your arms up long enough to lather in the shampoo much less have any remaining strength to rinse it out.

Chronic pain is another major symptom of this disease. It is not like any pain I have ever had. My muscles hurt. My joints hurt. My skin hurts. It hurts to have the lightest touch. Being hugged can be torture. Shaking hands feels like a vise. This is where the pressure point diagnoses comes in. There are eighteen pressure points on your body. A doctor who is familiar with the illness knows how hard and where to press, http://www.co-cure.org/Good-Doc.htm. If he gets a reaction on eleven of the eighteen it is considered a diagnosis. The day I went in because of the pain I had a response to all eighteen pressure points.

There are other symptoms that go along with the illness that do not in and of themselves mean you have Fibro. They can be indicators of other illnesses or mean nothing at all. I have a tendency to drop small items such as keys. I have also dropped large items because I thought I had a good grip on them and didn%u2019t. This is not always constant, and some days are better than others.

It can also affect your vision. Some days it is extremely hard to focus and other days I have clarity of vision I haven’t had in years. Some days I can walk like I did ten years ago and some days it is all I can do to make my legs work. Some days I can eat whatever I want. Some days my stomach is in an uproar and getting any distance from a functional toilet is not an option.

Then there is the %u201CFibro Fog,%u201D http://www.arthritis.org/conditions/diseasecenter/fibromyalgia/fibro_fog.asp. This is not a wonderful side effect of the illness but sometimes it can be down right funny, http://www.geocities.com/cfsdays/follies.htm. I%u2019ve had my moments too. Mine usually are trying to remember why I went from one room to the other. Everyone has this happen at one time or another. For me it is a daily event. Sometimes, hourly. I have sticky notes everywhere.

How does this affect my everyday life? In some ways it has been extremely negative. I have well meaning friends and family tell me about the latest miracle cure. They also give me unsolicited advice such as if you would only . . . fill in the blank . . . you would feel better. Or, there is this wonderful new doctor, treatment or vitamin that will surely cure me. They get offended when I don’t jump at the latest offering or advice, but what they don’t understand is that I have looked at all the treatments and %u201Ccures,%u201D and I found them lacking, quackery or just plain dangerous, http://arthritis.about.com/cs/arthtreat/ht/spotquackcure.htm.

I can no longer work, even part time. The fatigue and pain would put me to bed. I know because I tried working part time. At the end of the first two weeks I was in tears. At the end of the second two weeks I was in the bed for most of the next five months.

My love life is not what I want it to be. It is very difficult for my husband to make love to me knowing that his slightest touch can be painful. This might work if you are married to a sadist, but most folks don’t want to hurt you. The fatigue also plays havoc with my love life. I get very tired very quickly, http://fmaware.org/patient/family/love.htm.

I have two sons nine years apart in age. My youngest son has been cheated. His mom couldn’t do all the things his brother’s mom did. We don’t camp anymore, or hike. Ttravel or visiting relatives who live far away has to be planned well in advance so I don’t get to the point when we get where we are doing I can participate in the activities. I didn’t make it to all of my younger son’s activities.

I have three beautiful grandchildren. I have not bonded with the two youngest as well as I have with the oldest. Because of the fatigue and tendency to drop things I couldn%u2019t hold them as much as I did the first one.

I%u2019ve lost friends. My plans are always subject to change. This makes others feel that you are leading them on or don%u2019t want to be with them. We need our friends now more than ever. The Spoons Theory is best way to make your friends understand your illness, http://www.butyoudontlooksick.com/2006/02/the_spoon_theory.php#more.

All of these combined has led to a tremendous amount of guilt and anger. These have to be dealt with in order to move on with your life. Grieve. Grieve for the abilities you have lost. Grieve for the uncontrollable changes in your life. Grieve for the plans you had that will not come to pass. Grieve for the you, you could have been. Get angry. Find someone who will listen without judging. Who will let you blow off steam. If cussing makes you feel better, use every foul word you ever heard and make up new ones. Get it out of your system. Dealing with the guilt and the anger are not going to happen over night, and once you deal with it doesn’t mean it will be gone forever. You will have periods where they will come back. Don’t be alarmed or get depressed, well maybe for a little while you can be depressed, but deal with them in the way you know works for you. The only exception here is substance abuse. It is very tempting to drink, smoke pot or do pills to make it all go away. However, it is only a temporary fix, and adds to your problems. It is not what you would tell your children or your friends to do. So, don’t you. (End of sermon)

All is not lost. I have been able to make positives out of the negatives. I now work from home as a freelance writer. It has been a slow journey, but I am making progress. I have written a few articles and been paid for them. I was regular book reviewer for a national romance writers magazine, www.romantictimes.com. Once I sold a short story I had to give stop writing for them as the reviewers are all volunteers and unpublished. I am developing an online reputation as a writer doing research columns, writing book reviews and teaching classes via the Internet.

My husband and I are learning to adapt to the illness and have a mutually satisfying love life. My children and grandchildren are learning to cope and know that they are loved in spite of what I can no longer do. We are learning how to modify the things we love to do as a family so that I can participate and everyone can enjoy themselves.

My friends and family are learning to look carefully at treatments and doctors not just for me, but for themselves too.

Now, if I could get people in parking lots to quit giving me dirty looks when a normal looking woman gets out of a car parked in a handicapped spot.

by Deborah Brent

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