What Would You Do If I Sang Out Of Tune?

What Would You Do If I Sang Out Of Tune?

Sing Out Of Tune
 “What would you do if I sang out of tune, would you stand up and walk out on me?” If you have fibromyalgia or some other chronic pain illness you have probably worried about people walking out on you and can relate to the question. The reason why is that anyone with a disabling chronic pain or fatigue illness feels like they are singing out of tune in the story of their life. Doing so also creates a fear of loss, especially losing your friends or family.
The following is a letter you might relate to if you’ve had a chronic pain related illness for any length of time. If nothing else it may be something, you can relate to or something that might be validating to your feelings over the years of invisible pain.  Feel free to use this note if it becomes necessary in your life to express the despair of having a chronic pain or fatigue illness and need to express yourself to those inclined to walk out on you who may not understand being out of tune.
Would You Walk Out On Me?
Singing out of tune is beyond my control when fibromyalgia presses the pause button in my life. The problem is that I have no control of when the pause button is pressed. I know it’s inconvenient to you because it is inconvenient to me. I don’t like the personal disappointment any more than you like being disappointed. I disappoint myself far more than I disappoint you. I live a life of letting myself down.
There are times when I may have made plans only to feel a flare up of fatigue, pain or other related symptoms causing me to cancel those plans. Those flare ups can be so devastating that my body won’t respond to anything or anyone’s selfish encouragement. All I can do is sing out of tune and hope for understanding, understanding that many times is hard to come by.
It’s hard to feel like I have always got to explain why I can’t make plans or keep the plans that have been made. This is especially true when I know that you are suspicious of me and my motives. Often I know that you don’t have a spirit of understanding and yet I try to please you, to go along with you, even when my pause button is being pressed over and over again.
Frequently things get to the point where I decide to withdraw rather than face the music of disappointing you or other friends or family. I can’t make you accept it, I can’t make you change your mind, only you can do that and I hope you will. In the meantime, I need to do my best to take care of myself. I’m the only one who really knows what I need and how to take care of me the way my circumstances require. Sometimes that means I need to reduce the stress in my life which means withdrawing from your life.
I have tried to explain more than once and so the question comes up how much do I really need to keep explaining when you fail to understand me? There comes a time when enough is enough.
I guess I can’t fault you from not grasping it. I still don’t believe all this is happening to me and yet I suffer every day. It’s been going on for years with no hope or no end in sight. Yes the pain and fatigue is real and yes, it is a constant every day of my life and even though it seems unbelievable, it’s real. They call this an invisible illness, but it doesn’t feel invisible to me. I see why you might not get the picture, but I still need to be understood. If you can’t or won’t accept what I’m saying, then maybe I don’t need the baggage of your unbelief and lack of acceptance in my life. Stress is a major contributor to pain and fatigue and I need to do all I can to minimize stress in my life.
A true friend would understand even if is seemed impossible to understand. Do I have a history of lying to you? No, I don’t. So why won’t you believe me? A true friend would. Family members and relatives are an act of birth, being friends is a matter of choice. I can’t stop being your family, but that doesn’t mean we have to be friends. If you choose to leave me behind or choose not to believe me then what is the point of straining over an unfulfilling relationship? You don’t even need to help me, all I want is to be understood and believed. Now you know why I sing out of tune, I just hope you won’t stand up and walk out on me.
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We Are Not Hypochondriacs . . . But Maybe We Should Be?

We Are Not Hypochondriacs . . . But Maybe We Should Be?

Fibrochondria

There’s always something to say about Fibromyalgia which speaks to the complexity of the disease. There’s always some new information coming out, not always helpful but sometimes that information is a gold mine. There is a lot to talk about when discussing fibromyalgia from fibromite to another.

That is where this article comes into play, discussing fibromyalgia from a fibromite who has more than thirty years of the disease under his belt to another fibromite.

This article is about “Fibrochondria.” What is Fibrochondria? It is a play on words obviously. It comes from fibromyalgia and hypochondria combined. To those with fibromyalgia, that may sound disturbing, but bare with me. Fibrochondria is the need for a diagnosed fibro patient to not confuse new or different symptoms with those symptoms that are known to come with fibromyalgia.

Consider this scenario: You have had fibromyalgia for seven years and by now are well versed in the symptoms you have. Of course you have the chronic wide spread pain and the fatigue but you’ve never noticed in seven years any symptoms related to memory loss or cognitive issues. Then you start to notice you are becoming forgetful. You walk into a room and forget what your looking for. Everyone does that, but in your case it’s happening way to often. All of the sudden you start forgetting words you know that you should know. You can describe the meaning of the word but can’t think of the word. This can come up in a mid sentence. You are forgetting names way too frequently. Other types of memory and cognition problems blur your mind.

You take a look at the symptom list of Fibromylagia and see fibro fog. You look into it a little more and decided that these symptoms are just another part of fibromyalgia. At least, now you know why you are having these troubles. We know that there is no know cure for fibro so you take a deep breath and forge on. At least now you know why you’re having memory troubles . . . or do you?

fibrochondria_1This is a big mistake to assume that the symptoms you are having automatically fall under fibromyalgia. It is very possible that what you have is fibro fog but it could also be a number of other issues with your brain. Don’t assume that a symptom you are having is part of fibromyalgia just because it is on the symptom list. Few fibro patients have every single symptom on the list. It is entirely possible to have just wide spread chronic pain and nothing else. Therefore, you should talk to your doctor first before jumping to conclusions.

We need to be hypochondriacs over every new symptom until we know if it is yet another fibro issue or something else. What I mean by that is that we need to keep on top of our health because we are chronically ill. If we can treat the new symptom then that is one less thing to worry about. So, if a new symptom presents itself, go get it checked out. If the symptom is something else, it could get worse.

I can relate to this. I have had bouts of lightheadedness and extreme fatigue many times over the past years but recently I was going through those symptoms again only it didn’t make sense. My CPAP was properly adjusted, by lungs and heart were both great. I had over come secondary pulmonary hypertension. My heart was healthy and by blood pressure was excellent. I was so fatigued I just needed to sleep. I wasn’t ‘fatigued tired’ but rather ‘fatigued sleepy’ in the extreme. I couldn’t shake the dizziness and lightheadedness and I played with some nausea. A time or two I thought I would faint so I quickly sat down and breathed slow and deep.

I went to the doctor to discover my heart rate was down to 45. The doctor put me through four various tests on my heart and lungs. Two tests were over night tests. I ended up with the Cardiologist telling me my heart is healthy and “looked great.” Since he didn’t want to rush into a pacemaker he instructed me to monitor my heart rate and blood pressure for six months and then go see him. They verified in two of the test that I was running a very low heart rate which, with one test got down to 36. My blood pressure continued to be excellent. All of the other tests “looked great” with one exception which was my cholesterol. It was a little high and since it was caught early I could easily manage it without meds.

As fibro patients we are sick of the term hypochondria because many health care providers have called us that or at least insinuated that we are making up symptoms and sometimes some fibromites have been accused as attention seekers from doctors.

To bring up the term hypochondria is treading on water, but it is something we have to consider. Not all symptoms that match fibro symptoms are fibro related. A single symptom could apply to hundreds of illnesses which is why we must be ever vigilant in determining if new health problems belong under the fibro umbrella or are their own illness or a symtpm of something else. We need to be fibrochondriacs.

Using the word “fibrochondria” is just to introduce a little levity in a despairing illness. This article is just my own opinion and in no way medical advise. Before doing anything that could affect your fibromyalgia or any other health issues always consult with your health care provider.

Troy Wagstaff © Copyrighted

Wouldn’t It Be Nice To Plan On Being Sick?

Wouldn’t It Be Nice To Plan On Being Sick?

I think you all can relate . . . You’re in bed or on your couch curled up under a warm blanket and every muscle in your body hurts. You’ve got the flu. Hot and cold sweets, a fever that comes and goes. You’re dizzy and you’re so weak you can hardly lift your head off the pillow. The noise from the TV drives you crazy. You toss and turn even though it hurts because you can’t get comfortable. You know that in a few days you will be better but until then you feel like you may die.

The worst thing about this situation is that when you woke up that morning you drank your orange juice and you were anxious to get to work. You had your week planned out and you were feeling great. A few hours later you were hit in the head with a 2″x4″ and you were deathly ill with the flu. Your plans for the week are out the window. Now you are laying in misery wishing you were dead.

I am willing to bet the farm that most of you who have read this have had something like this happens more than once in your life. I am sorry for you and that hideous experience you’ve been through.

I know what that is like and my Fribo friends out theirs know what that’s like. Fibro fighters have this sort of thing happen to them all the time. In several different ways.

Unless you have had Fibromyalgia, it’s hard to fully understand the aches, pains and malaise of fibro. Some say it’s like having the flu throughout your body, day in and day out. Other would say it’s like having arthritis in your muscles. Some say it’s like having a migraine throughout your body.

Fibro, The Unpredictable Disease

Fibro, The Unpredictable Disease

Pain aside, it is the unpredictability that is another hard thing we have to contend with.

You wake up eating a good breakfast, you leave for work feeling on top of the world and within a few hours you’re laying sick in bed with the flu.

Just like the scenario of feeling good in the morning and then by the time the evening news rolls around you’re fully engulfed in your flu bug.

This is one of the predictable things about Fibromyalgia. It is unpredictably good and being predictable.

We can wake up one morning feeling like we go on a nice long walk, ten or twenty minutes, and then before we actually get our walking shoes on we get a migraine or a flare up that feels like a heart attack or a broke hip.

It is often less dramatic. We can cycle through feeling well (well is a relative term) and then an over whelming malaise and back to feeling good, three or four times a day. Does this sound hard to believe? It’s true.

I have had Fibromyalgia for thirty-one years and I am telling it to you straight. No exaggerations.

Fibromyalgia is not the least bit predictable. One minute is good the next minute is bad.

What inspired me to write this piece on the unpredictability of Fibromyalgia, is that two days ago, on Sunday I was walking down the hall, I turned a little putting my back against the wall so my wife could pass. Just as my back rested on the wall I got shot suddenly with a bout of dizziness and weakness. I just stood there in shock. Apparently I looked awful because my wife asked what was wrong. I was shocked at how suddenly my health had turned on me again. No warning.

I stood there for several minutes and then felt barely good enough to get back to my recliner. Less than an hour I was feeling as fine as Fibro allows.

What I m writing sounds like fiction but it is not fiction. It’s a weird and frustrating fact of life with fibro. If you don’t believe me ask someone you know with Fibro.

There is one more thing about this disgusting unpredictable disease. You are a poisoner to your own body. You are getting ready for an evening with friends. It’s been a good day. Then just as you are ready to go out you suddenly feel lousy. Your muscle and joints ache all over. You have to call and cancel plans for the third straight time.

Many people with Fibromyalgia find that after several years with this awful illness their pool of friends is much smaller, if not dried up.

Fibro is an illness of contradictions, unpredictability, pains and it is very real with no end in sight.

Troy Wagstaff © All Rights Reserved

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