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A Letter To Normals…..This is MY Disease!

Hello  Friends and Anyone Wishing to Know Me,

Please read my “About Me” and allow me to begin by thanking you for taking some time out of your day to spend here with me on my blog . In our hectic lives a person’s time is their most valuable asset and yours is appreciated always!

I want to talk to you about Fibromyalgia (FMS) and Chronic Myofascial Pain Syndrome (MPS). Many people have never heard of these conditions and for those who have, many of you might have been misinformed. And because of the misinformation many judgments are made that may not be correct… So I ask you to keep an open mind as I try to explain who I am and how FMS has assaulted not only my daily life and my marraige, but all of those around me whom I love as well.

 I suffer from a disease that you cannot see. It is a disease that there is no cure for, no simple lab test for and one that keeps the medical community baffled on how to treat and defeat this illness that attacks our bodies relentlessly. My pain works silently by stealing my strength and joy and replacing it with painful tears. On the outside I look normal and  you won’t see my scars as you would if a person has suffered a car accident, although I’ve had many of those as well. You won’t see my pain in the way you would a person who is visibly suffering…. This is MY daily struggle, because I seem to look just fine, happy and healthy. However, my pain is just as real and just as debilitating as anyone who suffers chronic pain! And in many ways my pain may be more destructive because people just can’t see it, they may not believe it and they often just do not understand it!

Please don’t get angry at me if I show a lack of interest in doing things or just want to stay in bed today or the next; I punish myself enough, this I assure you. Many tears I have shed at times when no one is around, and the bathroom has become a haven for my sudden emotions. My embarrassment is often covered up by a joke or laughter, but inside I want to curl up and die. Most of my “friends” are gone (by choice) because I could not keep up with them or the drama in their lives. I have been accused of “playing games” for another person’s sympathy and even of abusing painkillers. I have been called “unreliable” when I am forced to cancel plans suddenly at the last minute, because the burning and pain in my legs or arms is so intense I can’t even put my clothes on or get off the couch.  I am again left in tears as I miss out on another activity I used to love to do or once participated in with great enthusiasm. Even going shopping is a chore….now what girl doesn’t like to shop? I still want to do it ALL, but this damned disease just keeps sucking the life out of me!

I feel like a child at times…The other day I put the milk I bought at the store in the cabinet on the shelf, instead of in the refrigerator. Ofcourse by the time I noticed it, it had gone bad. I’ve lost or misplaced my keys more times than the people in my life care to think about, and I’ve had plenty of personal rescuers to help me get back into my car or my locked apartment doors, including the police. When I talk to people, I often lose my train of thought trying to answer a question or forget the simplest word  to explain or describe something. Some forgetful moments can be cute when they’re in private…..like when my boyfriend kindly just laughs it off, because he already knows what I meant to say and doesn’t want to embarrass me.

Imagine how it feels to be as young as I am and have another person go behind you in your home to make sure the stove is off after you have cooked an occasional meal . Please try to understand how it feels to “lose” the cup of tea you’ve just made yourself, somewhere in the house and not have a clue. So please my friends, I ask you to try to understand if I don’t call you back all the time, or come visit you or even want to talk to you sometimes. I try to maintain my strength and dignity, but this Demon assaults me at every turn.

Then there’s Sleep. Aaah….my favorite past-time! Even when I do get some, it’s often restless and I wake up so much, because of the pain that the sheets can cause on my skin or because my leg muscles twitch uncontrollably. I walk through many of my days in a haze with the “Fibro-fog” laughing at me as I stumble and grasp for clarity. Very often I lose my balance, bump into walls and things and bruise myself all over my body as I wobble around in this fog…. almost as if I am tipsy. Well….what would you think?

My Fibro-Fog!

And just because I can do something one day, that doesn’t mean I will be able to do the same thing the next day or even next week. I may be able to take a walk after dinner on a warm summer evening or go groom my horse for an hour; then the next day or in the next hour I may not even be able to walk to the fridge to get a cold drink, because my muscles have begun to cramp, lock up or spasm uncontrollably. And there are those who say “But you did that yesterday with no problem!” “What’s wrong today, you look fine?” The hurt that I experience hearing those words scar me so deeply, because people forget that Looks can be deceiving, and I have let my family or friends down again and they still don’t understand my pain….

 

On a brighter side I want you to know that I still have my sense of humor, after all Laughter is the best medicine. If you take the time to spend with me or even to just chat, you will see that. I love to tell a joke or share a funny story to make someone’s face light up and smile at my wit. I love my kids so much, especially when they give me big loving hugs or ask me to go bike riding or take them someplace fun. They do understand that Mom has some painful days filled with migraines and body aches, but I am fun to be with if you will spend the time with me on my own playing field; that’s not too much to ask is it? I love my family and friends and want nothing more than to be a part of your life. And I have found that I can be a strong and reliable friend in many ways by showing great patience. I am a friend, a lover, a supporter and a hard worker. Many times I will be the one to do the research for my boss’ latest project or report. And many times I will be your biggest fan and the world will know how proud I am of your accomplishments and how honored I am to have you in my life! This my friends…… you will know for sure!

So you see, we are not that much different. I too have hopes, dreams, goals… but this damned disease…. Do you have an invisible demon that assaults you and no one else can see? Have you had to fight a fight that crushes you inside and brings you to your knees? If Yes, then we have alot in common and I will be by your side win or lose….. I promise you that! I will be there in the ways that I can be. I will give all that I can as much as I can, when I can, I promise you that. But I have to do things my way and at my own pace. Please understand that I am in such a fight with myself and my body and I know that I have little hope of a cure or effective treatments, at least for right now. Please understand if I seem stupid or selfish at times, it’s my pain that gets the best of me!

Thank you for spending your time with me reading this. I will continue to work through this thing as I have the past 12 years, taking it day by day. Please understand that I am just like you, and I just have my bad days too! The last few days have been exhausting as pain has taken over my body in ways I’ve not yet felt. I am not sure if getting older (the big 4-0 is right around the corner, ugh!) has brought on additional pain, but it triggered me to write this blog to get it out! Thank you!

MORE INFO ABOUT FIBROMYALGIA:

Fibromyalgia pain ISN’T…..”All in patients’ heads!” a new brain study finds. Well then…….thank god I’m not completely crazy! LOL…..

Alone With My Pain...

Fibromyalgia Syndrome (FMS) is often called the “invisible disease”, because outwardly we may look perfectly healthy. Inside though, we have intense pain throughout our bodies in our muscles, tendons and ligaments. We may be constantly fatigued and weak, we may be dizzy, act confused, lacking sleep, have numbness and tingling, suffer from digestive disorders, and generally just living a stressful and poor quality of life. There is no known cure for Fibromyalgia, but there are ways to help treat the symptoms, and to improve that quality of life. I have personally tried Psychiatrists, Psychotherapists, Chiropractors, Physical and Massage Therapy, several prescribed drugs, alternative medicines and I even was part of a Clinical Trial for a new drug that has yet to be approved in the US. The drug trial showed much improvement in the year and a half I was on it, but now I can’t have it? Should I buy it from Canada? What the hell is the FDA waiting for?

  FMS is a type of neurotransmitter disorder, in which the pain-signals that our brains receive are intensified,  our muscles do not get the healing nutrients they need and they take longer to regenerate after excersize or injury. The current diagnosis is usually made by a Rheumatologist who will find 11 or more “Tender Points” on your body. Out of the 18 Trigger Points of the body I often have atleast 16 burning with pain at all times…OUCH!! And if a person with FMS gets a cold or virus or any type of injury these “Flare-ups”can take weeks to go away and suck the life right out of you. 

Trigger Points

If you have this disease or think you might have symptoms, there are more resources now than ever with incredibly helpful information on the web. One of the first sites I visited was Fibrohugs.com. It’s a great place to start. Many new Doctors have begun to dedicate themselves to specializing in or treating this confusing disease. There are many books out there that have been written over the last ten years as they have advanced in testing and diagnosing this illness. Dr. Don L. Goldenberg is a doctor that I see in Massachusetts and he was one of the first to take an interest in helping his own wife work through this disease. He has written a handful of books over the last 15 years and has taken on many of the Clinical Drug Trials specifically to help FMS pain at his practice at Newton-Wellesley Hospital.

There is help out there, but unfortunately for me the medical costs can be overwhelming. The treatments I need would be atleast 3 times a week with a chiropractor, doing therapuetic massage and ultrasound on a regular basis. It’s just too much work, too much time and way too much money! Sorry, don’t mean to rant on and on…..

Thank you for hanging with me and reading about me and FMS. I hope I am able to help or atleast guide someone in the right direction for some answers.  And I’d be glad to talk to anyone out there who’d like to share their pain! I certainly can’t make your pain go away, but talking about it can help bring it to the surface where maybe it can slowly be released!!

Tender Hugs~ Jenn

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