| I have an invisible illness. To look at me you would see | | | | part time. At the end of the first two weeks I was in |
| a short, fat, middle-aged grandmother. Sometimes I | | | | tears. At the end of the second two weeks I was in |
| walk with a cane, but most of the time I don't need it. I | | | | the bed for most of the next five months.My love life |
| have a handicapped parking tag hanging on the mirror | | | | is not what I want it to be. It is very difficult for my |
| of my car. I park in slots designated for people like me | | | | husband to make love to me knowing that his slightest |
| and get nasty looks when I get out of my car | | | | touch can be painful. This might work if you are |
| because I look healthy.I am not healthy, and unless | | | | married to a sadist, but most folks don't want to hurt |
| researchers find a cure I never will be. I have | | | | you. The fatigue also plays havoc with my love life. I |
| Fibromyalgia, It is a connective tissue disorder related | | | | get very tired very quickly, have two sons nine years |
| to arthritis and lupus. The health professionals don't | | | | apart in age. My youngest son has been cheated. His |
| know what causes it, or how to cure it. There is no | | | | mom couldn't do all the things his brother's mom did. |
| blood work that says yes, you have it or no, you don't. | | | | We don't camp anymore, or hike. Ttravel or visiting |
| It is diagnosed by a list of symptoms and a series of | | | | relatives who live far away has to be planned well in |
| pressure points on the body.They symptoms of | | | | advance so I don't get to the point when we get |
| Fibromyalgia are many and varied. What affects one | | | | where we are doing I can participate in the activities. I |
| sufferer may not affect another. In my case it is | | | | didn't make it to all of my younger son's activities.I have |
| chronic fatigue and chronic pain. The fatigue can be | | | | three beautiful grandchildren. I have not bonded with |
| overwhelming. Just thinking about getting out of your | | | | the two youngest as well as I have with the oldest. |
| bed or your chair is more than you can deal with. | | | | Because of the fatigue and tendency to drop things I |
| Doing everyday things like washing your hair may not | | | | couldn%u2019t hold them as much as I did the first |
| be possible because you can't hold your arms up long | | | | one.I%u2019ve lost friends. My plans are always |
| enough to lather in the shampoo much less have any | | | | subject to change. This makes others feel that you |
| remaining strength to rinse it out.Chronic pain is another | | | | are leading them on or don%u2019t want to be with |
| major symptom of this disease. It is not like any pain I | | | | them. We need our friends now more than ever. The |
| have ever had. My muscles hurt. My joints hurt. My | | | | Spoons Theory is best way to make your friends |
| skin hurts. It hurts to have the lightest touch. Being | | | | understand your illness, of these combined has led to a |
| hugged can be torture. Shaking hands feels like a vise. | | | | tremendous amount of guilt and anger. These have to |
| This is where the pressure point diagnoses comes in. | | | | be dealt with in order to move on with your life. Grieve. |
| There are eighteen pressure points on your body. A | | | | Grieve for the abilities you have lost. Grieve for the |
| doctor who is familiar with the illness knows how hard | | | | uncontrollable changes in your life. Grieve for the plans |
| and where to press, If he gets a reaction on eleven of | | | | you had that will not come to pass. Grieve for the you, |
| the eighteen it is considered a diagnosis. The day I | | | | you could have been. Get angry. Find someone who |
| went in because of the pain I had a response to all | | | | will listen without judging. Who will let you blow off |
| eighteen pressure points.There are other symptoms | | | | steam. If cussing makes you feel better, use every foul |
| that go along with the illness that do not in and of | | | | word you ever heard and make up new ones. Get it |
| themselves mean you have Fibro. They can be | | | | out of your system. Dealing with the guilt and the |
| indicators of other illnesses or mean nothing at all. I | | | | anger are not going to happen over night, and once |
| have a tendency to drop small items such as keys. I | | | | you deal with it doesn't mean it will be gone forever. |
| have also dropped large items because I thought I had | | | | You will have periods where they will come back. |
| a good grip on them and didn%u2019t. This is not | | | | Don't be alarmed or get depressed, well maybe for a |
| always constant, and some days are better than | | | | little while you can be depressed, but deal with them in |
| others.It can also affect your vision. Some days it is | | | | the way you know works for you. The only exception |
| extremely hard to focus and other days I have clarity | | | | here is substance abuse. It is very tempting to drink, |
| of vision I haven't had in years. Some days I can walk | | | | smoke pot or do pills to make it all go away. However, |
| like I did ten years ago and some days it is all I can do | | | | it is only a temporary fix, and adds to your problems. It |
| to make my legs work. Some days I can eat | | | | is not what you would tell your children or your friends |
| whatever I want. Some days my stomach is in an | | | | to do. So, don't you. (End of sermon)All is not lost. I |
| uproar and getting any distance from a functional toilet | | | | have been able to make positives out of the |
| is not an option.Then there is the %u201CFibro | | | | negatives. I now work from home as a freelance |
| Fog,%u201D This is not a wonderful side effect of the | | | | writer. It has been a slow journey, but I am making |
| illness but sometimes it can be down right funny, | | | | progress. I have written a few articles and been paid |
| I%u2019ve had my moments too. Mine usually are | | | | for them. I was regular book reviewer for a national |
| trying to remember why I went from one room to the | | | | romance writers magazine, Once I sold a short story I |
| other. Everyone has this happen at one time or | | | | had to give stop writing for them as the reviewers are |
| another. For me it is a daily event. Sometimes, hourly. I | | | | all volunteers and unpublished. I am developing an online |
| have sticky notes everywhere.How does this affect | | | | reputation as a writer doing research columns, writing |
| my everyday life? In some ways it has been | | | | book reviews and teaching classes via the Internet.My |
| extremely negative. I have well meaning friends and | | | | husband and I are learning to adapt to the illness and |
| family tell me about the latest miracle cure. They also | | | | have a mutually satisfying love life. My children and |
| give me unsolicited advice such as if you would only . . | | | | grandchildren are learning to cope and know that they |
| . fill in the blank . . . you would feel better. Or, there is | | | | are loved in spite of what I can no longer do. We are |
| this wonderful new doctor, treatment or vitamin that | | | | learning how to modify the things we love to do as a |
| will surely cure me. They get offended when I don't | | | | family so that I can participate and everyone can |
| jump at the latest offering or advice, but what they | | | | enjoy themselves.My friends and family are learning to |
| don't understand is that I have looked at all the | | | | look carefully at treatments and doctors not just for |
| treatments and %u201Ccures,%u201D and I found | | | | me, but for themselves too.Now, if I could get people in |
| them lacking, quackery or just plain dangerous, can no | | | | parking lots to quit giving me dirty looks when a normal |
| longer work, even part time. The fatigue and pain | | | | looking woman gets out of a car parked in a |
| would put me to bed. I know because I tried working | | | | handicapped spot. |