I've never been big on the rah-rah stuff.
I'm still not.
I just want to be out standing in my field.
I just want to be out standing in my field.
I've always disliked going to motivational speakers. When I was selling homes it never failed; about once a year they'd have some yay-hoo come in to pitch about attitude and then sell the tickets to his "show." I'd be the one in the back with my arms crossed listening to the crap they'd spill and waiting for the subject of money to come up.
It always did.
I do believe that attitude can help or hinder just about everything in your life. It can push us beyond "the can't." I understand that. Having said that, however, I do not believe that attitude can cure Fibromyalgia. I believe it can definitely help with the management but I don't believe it can cure. Wouldn't it be nice if it does? We could sprinkle fairy dust and, voila! Now it seems that we are bombarded by Fibromyalgia and Chronic Fatigue motivational speakers. If we just improve our attitude then our symptoms will go away.
It makes us sound like we are the masters of our own demise.
I just read an article called Mindfulness Therapy No Help in Fibromyalgia Trial. It seems that the use of yoga and mindfulness therapy doesn't help the pain.
Really?
Ya think?
Where do they get these people? How did they round up 177 people? We can't find anyone to agree on anything concerning Chronic Fatigue and Fibromyalgia let alone how to manage it. What I find reprehensible is that they still make reference to depression and how people with Fibromyalgia aren't in touch with their own emotions or how to manage those emotions.
That really pisses me off.
See how in touch I am with my emotions?
There are many people with Chronic Fatigue and Fibromyalgia that can pinpoint the onset of their symptoms to major physical or emotional trauma or an episode with an illness. It seems that we've been dismissed because it couldn't possibly have started in this way.
HOWEVER........for just 29.95..................
If we change our diet we can be cured! JUST buy the book. There are tons of nutritional supplements out there and if we'd just take them we'd be cured. Everyone has the answer but somewhere they always manage to place the fault of Chronic Fatigue and Fibromyalgia squarely on our shoulders. Somehow we have trouble with our emotions, depression, vitamin deficiencies, marital problems, childhood issues, abuse problems, diet problems and a myriad of other issues that we can't control.
What is it going to take to get proper research? Just take the information released about the XMRV retrovirus. It seems that everyone wants to disparage the little research that has been done. Why are Fibromyalgia and Chronic Fatigue such a hotbed of controversy? With the numbers of people being affected increasing, why can't we get research and funding?
If someone really famous had this disease and watched their career go down the toilet, I bet then something would be done.
The people that have had their lives decimated by these illnesses are becoming increasingly vocal. We don't want to live this way. We don't want to watch our lives go by and live it on the sidelines. We don't want to be dependent on anyone else. We would love to have our life and careers back.
I think no one in our society is allowed to be tired or sick. It's weak. We're supposed to just suck it up and multi-task our little stressful lives to the fullest. We're supposed to be tough and push through pain and fatigue. It's not too much to ask is it? Life is supposed to be lived at Mach two with our hair on fire. If we can't do that we're a burden and a weak sister.
That's what we are.
Weak.
Just cut us from the herd.
I do believe that attitude can help or hinder just about everything in your life. It can push us beyond "the can't." I understand that. Having said that, however, I do not believe that attitude can cure Fibromyalgia. I believe it can definitely help with the management but I don't believe it can cure. Wouldn't it be nice if it does? We could sprinkle fairy dust and, voila! Now it seems that we are bombarded by Fibromyalgia and Chronic Fatigue motivational speakers. If we just improve our attitude then our symptoms will go away.
It makes us sound like we are the masters of our own demise.
I just read an article called Mindfulness Therapy No Help in Fibromyalgia Trial. It seems that the use of yoga and mindfulness therapy doesn't help the pain.
Really?
Ya think?
Where do they get these people? How did they round up 177 people? We can't find anyone to agree on anything concerning Chronic Fatigue and Fibromyalgia let alone how to manage it. What I find reprehensible is that they still make reference to depression and how people with Fibromyalgia aren't in touch with their own emotions or how to manage those emotions.
That really pisses me off.
See how in touch I am with my emotions?
There are many people with Chronic Fatigue and Fibromyalgia that can pinpoint the onset of their symptoms to major physical or emotional trauma or an episode with an illness. It seems that we've been dismissed because it couldn't possibly have started in this way.
HOWEVER........for just 29.95..................
If we change our diet we can be cured! JUST buy the book. There are tons of nutritional supplements out there and if we'd just take them we'd be cured. Everyone has the answer but somewhere they always manage to place the fault of Chronic Fatigue and Fibromyalgia squarely on our shoulders. Somehow we have trouble with our emotions, depression, vitamin deficiencies, marital problems, childhood issues, abuse problems, diet problems and a myriad of other issues that we can't control.
What is it going to take to get proper research? Just take the information released about the XMRV retrovirus. It seems that everyone wants to disparage the little research that has been done. Why are Fibromyalgia and Chronic Fatigue such a hotbed of controversy? With the numbers of people being affected increasing, why can't we get research and funding?
If someone really famous had this disease and watched their career go down the toilet, I bet then something would be done.
The people that have had their lives decimated by these illnesses are becoming increasingly vocal. We don't want to live this way. We don't want to watch our lives go by and live it on the sidelines. We don't want to be dependent on anyone else. We would love to have our life and careers back.
I think no one in our society is allowed to be tired or sick. It's weak. We're supposed to just suck it up and multi-task our little stressful lives to the fullest. We're supposed to be tough and push through pain and fatigue. It's not too much to ask is it? Life is supposed to be lived at Mach two with our hair on fire. If we can't do that we're a burden and a weak sister.
That's what we are.
Weak.
Just cut us from the herd.
First, my apologies for uploading the article and making you pissed!
ReplyDeleteSecond, thank you for getting pissed.
Third, that was my reaction.
I think there is this new mindset that it is our fault we can't get well. I mean, we -humans - can do it all so why not think ourselves into wellness.
I'm like you. I get really fed up with this stuff. My doctors, after 20 years, have recently told me to exercise (not good for severe ME/CFS) and asked me why I don't work? They know the reason I'm disabled and yet they have started asking that question a lot lately.
I'm getting where I hate going to the doctors. And I hate those ads you mentioned especially the "Fatigue to Fantastic". Tried it. Failed me miserably!
Anyway, I hope you still love me! :-)
It used to be cancer that got that treatment. Mind over illness. Right. There used to be snake oil salesmen, now there are self-help authors and 'magic' supplements. You kinda just have to let it float on by without engaging it. Like zen.
ReplyDeleteThis is a really good blog! I followed the link just for a look see, and thank goodness you're real! (Not one of those loud looking sites consisting of lots of colorful CAPITAL LETTERS and schmaltzy pictures with something vaguely helpful to push if you want to part with some cash via paypal.)
ReplyDeleteI've been sick for many years, and I believe FMS and CFS are caused by a virus...I have thought that for years, and FINALLY it looks like the collective medical THEY are figuring that shit out.
Some days I don't know how I get past the "I can't" part when I first wake up, but I do. I get up every morning, walk my dog, feed the cats (and of course the dog too), still put in a full day at the day job, come home at night, and thankfully, our son is old enough to be independent, if I feel like cooking dinner, I cook; if I feel like soaking in a tub of hot water with a beer for dinner...well, no one is going to stop me if it's what makes me feel better! And, oh joy, I'm in the throes of perimenopause just to make things even more interesting! I'm probably one of the few women who enjoys hot flashes because I'm ultra sensitive to the cold, the heat feels like heaven to me!
I believe my success is due to the things I love to do: art, photography, writing books (and I do love my day job working for an art collection). I try not to let the pain define me...but there are days when I feel like I'm in a trash compactor and it's hard to breathe. So I breathe anyway, and turn my attention to something else, walk the dog (if I'm at home), do my rounds in the galleries (if I'm at work), I stretch, I breathe and breathe some more. I keep telling myself, "the good news is, it's not going to kill me." And I'm stubborn, so I guess that helps too.
I'm going to add your blog to my blog roll so I can link back to you, and my readers can find their way to you as well!
Best wishes in the New Year!
Laura
You are not going to want to read my post for today then, yipes!
ReplyDeleteI'm sorry this pissed you off so much. I agree that there isn't enough being said, done, or researched about CFS and FMS, but I do think we can control certain aspects of it with our attitudes. Each of us is different, but I know for me a lot of things changed when I accepted the illness and adjusted my attitude.
You know the saying "the more you sit the more you want to sit, the more you move the more you want to move?" It's kind of like that. When are full-out depressed we just want to sit around. When we take control {when in our ability to do so} and try to be happy about it, sometimes we do feel happier. When we set our minds to feeling better about ourselves, it does work sometimes. I know stay at home moms who say they feel the worst about themselves on the days they don't do their hair, or makeup, or change their clothes. They feel the best on the days they do that stuff and feel prettier.
I know that in a lot of ways those of us with this illness can't help certain things. We can't force our bodies to do things they don't want to do. But I do think we have a certain amount of energy that we can pour into being better, stronger people when we are having good days. When we think the worst of ourselves, our bodies often have a natural reaction to our mentalities and feel worse too.
Anyway, not even sure this makes sense I'm so tired, but just wanted to add these thoughts to the mix.
Hang in there!
Rochelle, I think your comments are right up to a point. And that is the point of this post. What we are able to do, we all do it. None of us sits around because we want to. Most of us continue to push beyond our limites regardless.
ReplyDeleteFMS is helped by exercise to a degree. M.E/CFS however is not. It we push, we pay. Pacing and resting are paramount to us adapting a living with this illness.
A positive attitude is a wonderful tool, but, these article don't seem to allow for those days that are so hard, getting out of bed is a miracle for the day.
In essence, they diminish what many of struggle with every day.
Lastly, because of the varying severity of FMS and M.E./CFS, one plan of action doesn't work for everyone.
Oh and one other thing. Sorry. I think, for me, it was the tone of this particular article. Very condescending and high and mighty. If you do this, of course this will be the end result.
That rarely is the case.
I'm glad to hear that you are finding way to move forward that work for you. That is awesome. :-)
I just want to say....WOW! I agree with you, sister!!
ReplyDeleteThanks guys for all your comments! I agree attitude is important, but again, people want to say that this is our fault and I take exception to that!
ReplyDeleteLove to you all!