It's Heartbreaking

It's heartbreaking to have this disease.  The people in my life don't understand or get angry with me for my seemlingly lack of interest in doing things, it's not that I don't want to spend time with them, it's the disease.  I'm constantly fatigued and weak.  I miss out on many things I enjoy doing, because of this disease & the chronic pain.

I feel bewildered at times.  When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels.  As I try to maintain my dignity the Demon assaults me at every turn. Please try to understand….

Just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner; the next day or even in the next hour I may not be able to walk to the fridge to get a glass of water because of the intense pain throughout my body has taken it's toll.  My muscles have begun to cramp and lock up; I feel weak & tired. And there are those who say “but you did that yesterday!” “What is your problem today?” The hurt I experience at those words scars me so deeply that I have let my family down again; and still they don’t understand….

The pain & fatigue & weakness come on with no warning.  I call it an episode.  I cannot tell you in advance because I do not know in advance.  So if I cancel plans I made at the last minute, it's not because I don't care, or am unreliable, it's because I am forced to relinquish to my pain, fatigue, & weakness.  Please understand . . .

My version of this true story

Copyright of Written by Ronald J. Waller

PiscesDream PiscesDream
51-55, F
9 Responses May 11, 2007

EXACTLY! I wish my family would be more sensitive to this disease. I struggle to even get out of bed, and here they expect me to go out and run circles with them in town, and they get upset and hurt when I can't do it. Lately my mother has just stopped asking me to go anywhere with her because even when I feel well enough to go, I get really tired after about an hour and beg her to take me home.

Thank you for sharing this story.

I personally do not have fibromyalgia, but my mother has been diagnosed with it recently after many months of psychological visits because the doctors always suspected it was anxiety or depression. She suffers from pain daily and she's always on WebMD and other similar sites researching her condition which causes her great distress. Since the diagnosis, she's been keeping to herself more and your story helped me understand her condition a little more. I will be more understanding from now on.

My heart goes out to you as this is such a hard disease to explain to anyone when it changes so often. As you say one day you can do something and the next you may not be able to do it for a week. Have you heard of the 'Spoon Story' I think you can google it as this helped me explain things better. Have been bed ridden for 3 days and today felt so good I could not believe it. So went to have so girly time with my best friend and now I am paying for. She is so understanding and noticed how tired I was getting so we came home. Thank God for family and friends. I pray that things will improve with all that you are going through.

Thank you for the recommendation of Spoon Theory. It\'s awesome.

I can see the frustration in your story and my heart goes out to you. I have started understanding this myself with fibro. My symptoms are not as severe yet but it gives me courage reading posts like yours. You have so much courage to face all these challenges and even if you have people who support you, know one really understand because they can't 'see' it. Live day by day and enjoy what you can, I always try to be thankful I don't have a terminal illness that others have to face, but this doesn't lessen what we feel either. I hope you did something that helps.

amen on all counts!!!!!<br />
and nothing is worse than the feeling when you say that you are in pain and you look up to see disbelief and scorn in the other person's eyes. <br />
it both breaks my heart and absolutely enrages me.

Hey PiscesDream, I know what you are going through, I go through the same thing every day of my life. I wish that I could help to ease your pain. There is a place that I go to, and talk to many other people just like us. It is a chat room, but it is very highly protected. If you would like the info on it, send me a private message and I will glady give it to you.

Thank you so much. I appreciate the fact that I'm not alone. It helps tremendously, especially with this so-called invisible disease. Bless you.

I can relate to every word that you have said. I too suffer from the pain, misunderstanding of friends and family, and the day to day differences of this disease. Some days I sound smart and intelligent, other times I can pull up to a drive thru window or be asked a simple question and suddenly I am at a loss for words, simple words. Mine moves, like an alien that has taken over my body. I can hurt for several weeks/months in one certain area, then after doctor visits and they can't seem to find anything or I just try to ignore it, the pain will move somewhere else. It affects my mid upper back, right rib cage, right knee (actually the back side of my knee) pretty much all of the time. Other times I will have the tingling in my hands or feet. Sharp shooting pains anywhere and the overall feeling of being exhausted. But if I take a nap during the day or try to go to bed early, then I really have a restless sleep. So, if I just fall into the bed late, get up early for work and go all day, I at least feel as if I crash and sleep for a while I am some what rested. I have days where I hurt so bad, but if I keep on going I do better than if I give into the pain or discomfort. Somedays I wonder if I'm having a heart attack, or a stroke with some of the symptoms that I get, but then it passes. I so understand how you feel, how others look at you like "You look well" or "Cat got your tongue?" I am not one to take medicine and I don't even bother going to the doctor anymore for them to think that I am crazy. I fully understand about the people in your life that don't understand or don't even try to understand. I just thought that you would like to know that you are not alone. I have felt that way for many years.

my heart goes out to you with this disease. i don't know anything about it, however my panic disorder sometimes limits what i do as well. THAT i can understand. only true and loyal friends stick by you through anything and everything. i wish i had one of those.... god bless and keep in touch.,

I have that one friend. I\'m so lucky in that way. It took me a long time to find that friend, but I feel truly blessed.
I wish it for you pretty with all my heart. You deserve to have that.
Most people do not have that. Most people are in it for themselves. It\'s all about: \"what about my needs\".