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Hopefully

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DX FIBRO
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There are lots of theories out there about FMS/CFS. It's a thyroid problem, it's a digestive problem, candida, it's an autoimmune problem, etc. But not enough research is being done to get to the bottom of it. The reason for that is twofold, in my opinion.

1. Fibromialgia and chronic fatigue are not visible disabilities. Supposedly, 'it's all in our heads'. It has a huge stigma attached to it like mental illness because the 2 are closely interrelated. Unless you have a sign on your chest saying "I have FMS/CFS " people assume you're lazy, unmotivated, lacking in ambition, etc etc. It changes who you are as a person.

Society values winners, go getters, high energy, multitasking people. Our buzz words and phrases are 'just do it', 'live every day to the fullest'. You know the rest. I cringe when I hear/read these phrases. I want to scream, "oh ya? Live a day in my shoes! Because I'm lucky if I manage a shower and prepare a meal today."

Because we lack the energy to even sit up (sometimes I have to lie down or fall down), because every movement causes pain, we opt out of so many meaningful things in life. Slowly we slip down the ladder of esteem of what society values.

On a few good days you get out there and try to participate so you see, there's nothing really wrong with you. It must be in your head. How many have heard those words? I don't feel bad enough for my lack of ability to do everyday things so my 83 yr old mother and my 79 year old neighbour feel the need to rub it in when they go out to shovel the driveway and point out how old they are compared to me.

Should it be really be necessary for me to tell everyone I meet that I have FMS/CFS and then explain what it means?

2. The second reason there is so little funding for research is because no one has ever died from it. At least FMS/CFS has never been shown as cause of death. But don't be fooled. It is a killer. It kills very slowly and painfully. It kills our will to live. It kills our ability to provide a decent living for ourselves and our families. It reduces most of us to a poverty level existence.

I read this morning on another fibro website that research shows that swearing, using cuss words can help alleviate the pain. Really? There are no other more vital uses of the few research dollars available on this issue? Is our pain and struggle to survive such a trivial issue?

Is it any wonder most of us just want to give up, throw in the towel. I've spent the morning crying for no reason really. Just sheer frustration.
 

1sweed

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1,956
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DX FIBRO
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Hopefully,
Please don't give up. And don't start swearing either, that is a rather nasty habit. I know life with fibro can be down right depressing, but you only get one chance in this life so you don't want to loose out on any of it. Be strong and know now that others here care about you and want to offer you encouragement and support. Take things one day at a time and try some of the coping skills and products mentioned, that will help improve sleep and ease your pain.

Try a new hobby or work jigsaw or crossword puzzles, look out your windows and enjoy nature, read books, watch funny humorous movies, visit or call a friend, seek the help of a counseler if depressed, relax and pamper yourself, relieve stress by not pushing yourself or allowing others to push you.

Each day with fibro is a challange, but it takes belief in yourself to keep moving and to not let the disease win. I will be praying for you in hopes that you see some good in each day and that the sun will brighten your mood and last through the days ahead. :)
 

Hopefully

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Jan 21, 2014
Messages
14
Reason
DX FIBRO
Diagnosis
01/2000
Country
CA
State
ON
Thank you 1Sweed for your kind words of encouragement. I did feel a bit better after my rant. It also helped to get out of the house for a few hours. I live in my mothers basement apartment because I can't afford to live anywhere else at this point. If I don't get outside even in this frigid weather, I get depressed. Today I had to drop off some forms to my doctors office and ran some errands. The weather this winter has been brutal on my poor aching body. I do lots of crossword puzzles, sudoku, computer card games, and read continuously. It helps pass the time somewhat but what I need is something to help me feel useful and vital. I guess this polar vortex is really getting me down. Well just a couple of more months and we should get some relief.

I really believe that there is a specific cause to this disease, and once they figure it out there may still be no cure but there may be some preventive things that can be done. There has to be more information but it seems that no one takes it seriously. Just like most people don't take us seriously. I guess that what gets me down when I think outbound it. And I have way too much time to think .

On the up side, today was relatively pain free for me so I have that to be grateful for. Hope this continues for a while.

Thanks again for your support.
 

Corvid

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06/2012
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**
Hopefully, thank you for putting so articulately what I often have felt. It's so hard to feel worthwhile when society's definition of a "successful life" is based on valuing money--how much you have, how well you make it, what expensive trinkets you can buy with it. If society valued things like perseverance, endurance, courage, fortitude, and patience, we folk who live with chronic illness would be on the covers of magazines and signing autographs. We are either lazy fakers or superheroes, depending on the values you choose to judge by. I want to believe in a reality where character is more important than money, so I choose to believe we are superheroes. Just don't make me wear red tights under my compression stockings!
 

Trellum

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Joined
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Messages
1,788
Reason
DX FIBRO
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04/2011
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NL
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Hopefully, I completely agree with you and feel so sorry you feel so frustrated. I also wonder why they don't invest more on researching this disease, so at least we know what causes it and how to treat it. Maybe a cure? But to be honest I'm not ery surprised we are till in the dark when it comes to fibro, because there are many other diseases that are also in the dark, at least in terms of treatments, just look at cancer and PCOS!

Cancer treatments sometimes cause more harm than good, and they don't always work... unless they detect your cancer very early. As for PCOS... they're not sure what causes it, they just know the effects it has in a woman's body, but they haven't found a way to cure it. Now that I think about it... how many of those big diseases have a cure?! Not fibro, not HIV, PCOS or cancer... this really makes one wonder... mmmm.
 
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