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So Upset
7 Replies
AmberRose - October 12

Today i was watching the news and they are saying my city (calgary) is super short of paramedics. A year ago i would have been estatic because thats my dream job ever since i was in elem.schoo. i started getting all my stuff toghther to get training and go to school for the job and now i can't. because of fibromylagia. How frustrating is that? All my dreams down the tubes becuase of something so god damn stupid. Something thats not even a disease......its syndrome how do you explain that to yourself?????Theres no way id ever be able to do that now i can' teven take my dog for a walk let alone lift people on to stretchers............

Ive never ever been so frustrated!

 

Stephanie417 - October 12

I understand AmberRose, I have a beautiful child who is my world, my being, my life and a husband who I love very much, I want desperately to have another child, its always been a dream of mine to have two children, sometimes it seems hopeless thinking of being pregnant and even taking care of more than one child with Fibro, I can only say that Keeping your dream alive is not a bad thing, do not give up that easily.. You are young, like me, and tomarrow is another day.. Everything happens for a reason, I believe this and I bet that you will find something that truly makes you happy and may compensate for faded dreams..

 

carm - October 12

It is frustrating but maybe there still is a chance to be an EMT or maybe in dispatch that is more of a sit down job. I hate the word syndrome also because it seems like it is all in your head but it's not. If alcoholism can be a disease why which starts out self inflicted why can't FM be a disease which we have no control over.

 

BrandyO - October 12

I might be wrong here but I think to be called a disease they have to know what causes it and they don't know what causes Fibro so it is a syndrome rather than a disease.

 

TERESA - October 12

AmberRose you are not alone in this!! At least you didn't waste three years of your life & thousands of dollars going to college to get a degree you may never be able to use again, like I did!! I was a RN in surgery prior to this diagnosis! I graduated top of my nursing class & with second honors in the entire university, only to have a degree I can't uses. I worked for about ten years before it got to much. Now I have a low wage go nowhere job that bearly pays the bills,no insurance, & have to go to a clinic for my healthcare.(Enough of my pity party)I said this all to make you see that I do understand!!!

 

AmberRose - October 12

Oh my teresa that would be frustrating !!! I feel for you i do ! and i know that to be a disease fibro needs a cause , i jsut think it would be alot less frustrating if it was called disease, and carm is right it is like its all in your head...i hate telling people i have it becuase i feel i need to explain tell the cows come home

 

AmberRose - October 12

And thanks for all your kind words! It totally helps.

 

barbar - October 13

Hey Guys, this is a power issue, between the medical community, who have the power of life and death over everybody, and us, who have a very, very real disease. We all have to come to grips with having a DISEASE. We know it's a disease even if it doesn't yet fit the protocol standard for that definition. What I find frustrating is having a disease that other's don't understand. But our first step is reconcilling ourselves to our condition. Once I did that---I mean, I took a week and just laid on the couch in the most comfortable position I could find and said yeah, if this works so well, that is, if I could find a remedy like this, then this is a REAL and SUBSTANTIAL thing. They say we tend toward perfectionism and maybe that's it, but we all seem to want to actually have lives. We want to be able to DO something and we cannot reconcile ourselves to the fact that our bodies will not let us do it. That's right. Our bodies are just not cooperative. So once I reconciled myself to this, to the fact that this was a disease whether the AMA wanted to agree, my life became easier and better to manage. I increasingly looked for patterns of disability when I didn't feel like doing things so that I could provide empirical evidence over time that indeed it was my body and not my attitude that was interrupting my dreams. My lengthy point here is that I think much of the frustration reflects a need to accept the reality of this thing. WE ARE DISABLED. Maybe you don't want to say we're sick (I don't mind saying it), but we surely are disabled. Our problem is that we are are about a generation away from the medical community uniformly agreeing. However, so what? When it comes to the psychology of this thing, of having to live with it everyday, we ARE the data. So, AmberROse, maybe it would be helpful to explain it to yourself by understanding that you are in fact AHEAD of the medical community on this one. While we're suffering, we are waiting for them to get their act together and get some real science done to figure this thing out and provide some relief. We have to be very proactive in our own treatment because in addition to fighting our pain and the impact on the quality of our lives, we are fighting such a wide range of ignorance. And on top of it all, we fight the politics of suffering, as it is currently managed by the medical community. That's my story and I'm sticking to it.

 

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