MDJunction - People Helping People
 

Why wear a ribbon?

 
"I have Fibromyalgia and Chronic Pain." (dwjames)

MDJunction to me

nvrsubtle"Not having any local Bipolar support groups where I live, MDJuntion has given me a place in which people understand what I am going through and has given me a new outlook on life with support that is real and good. Without
the support that I receive from MDJunction, I would be wandering through
life with no one who understands me. I owe so much to MDJunction for giving
me a life line to help get me through the toughest times.
" (nvrsubtle)

more testimonials
Fibromyalgia Online Support Group
A community of patients, family members and friends dedicated to dealing with Fibromyalgia, together.
Join This Group
Group Home   Forums   Articles   Members (7583)   Diaries   Videos   Leaders   Guidelines
FMS Group RSS Feed
05/04/2008 11:48 PM
Cjay
Cjay
 
Posts: 22
Member

I'd wonder how can you get your daughter to be so supportive.. All mine says is that I'm lazy when I say I can't do something. She doesn't think there is anything wrong with me.
Reply

05/05/2008 12:10 AM  Top
cadburry
cadburry
 
Posts: 543
Member

Mykids are young so I don't know how they would feel if they were older. My kids are 7 and 5, but they see me cry even though I try to hide it, they will catch me occasionally. It's sad because my 7 year old daughter heard me laughing one day and she stopped what it was she was doing and came running to me and got in my face all serious and asked, mom are you laughing? It dawned on me then that I hadn't laughed in so long that it shocked my daughter to hear me laugh. I try to make sure I laugh more now.

Hmmm, how old is your daughter?

I would say if she is young enough you could make up a story about a girl that was so sick, but didn't look sick and people would call her lazy and a lier and how sad it made her feel. Again I'm not sure how old your daughter is.

If she is a teenager then I would write a paper about your condition and how it makes you feel, and that when people say things like "Your Lazy" that it hurts your feelings really bad. I would then make her read it and talk about it with you.

I'm sorry but this is the only thing I can come up with.


05/05/2008 05:27 AM  Top
Cathy0402
Cathy0402
 
Posts: 251
Member

this is so hard but my 17 year old daughter is really starting to realize that mommy got an illness just like other people do and to all that have firbo it came up in my daughter school the other day in health class and the hole class had to do a report an firbo and i just cryed cause my daughter A IT CAUSE SHE WROTE ABOUT ME AND KNEW ALL THE MED AND ALL THE THING I DO TO HELP MYSELF SEE THE WORLD IS TALKIND ABOUT US THIS FIRBO ITS GETTING OUT THIER AND THIER GONNA BE A CURE SOON DONT GIVE UP YOUR KIDS WILL UNDERSTAND ONE DAY
cathryn

Previous discussions I participated in:
Lyrica
Hi All
Help

05/05/2008 06:06 AM  Top
cadburry
cadburry
 
Posts: 543
Member

Wow Cathy! Thats pretty cool that the schools are even talking about it! Glad to hear your daughter got an A.I'll bet she had the most informative paper there!Thats to cool Smile

05/05/2008 06:21 AM  Top
mcbeth
mcbeth
 
Posts: 1559
Senior Member

If you find out how to make your children understand let me know.

My daughters are 28 & 29. They aren't supportive at all. One lives 5 hours from me so she doesn't see me on a daily basis and doesn't understand that I have bad days.

The younger one lives here in town and I see her all the time. Try and tell her that I can't do something and she blows a gasket. If I say I don'e feel well or hurt, well she is always sicker or hurts more than me.

It is not easy and I know where you are coming from. How old is your daughter?

When you stumble, make it part of the Dance

Mary Beth

Previous discussions I participated in:
ER trip
newbie
change in pain

05/05/2008 06:46 AM  Top
AngelBooze
AngelBooze
 
Posts: 289
Member

Hi yall, I just wanted to say that I am lucky with my child, she's 13 almost 14. See she grew up with me having Fibro and she is great with me. She is always helping me and telling me to just sit and she will do it. My step-children, they do not know what to do about this, they are 20,19, & 17, The youngest was 6 when I got together with their father. They lived here for a long time then they moved in with their mom because she lets them do whatever whenever. Anyway, Nikil had given me a poem in a hug. I thought that it was great so I copied it for my family and friends that do not understand, including my boyfriend. So when I heard about your daughters, McBeth I thought that this might help you and your daughters. You can give them a copy and have them read it. So here it is.

The Thief of Many Lives

I am constantly on the prowl in search of new victims. I do not discriminate--health care workers, teachers, students, airline personnel, teens, and innocent children are my prey. If you are dynamic and have a lust for life, I will seek you out, and I will find you. Just when you are at the peak of your endeavors, climbing that career ladder or building your family and home, I will find you. There is nothing that you have in your life today that I am not capable of destroying tomorrow, your career, your education, your goals, your dreams, your family, and your life. I will have it all. I will strip you of your ability to function at any level above minimal, and from this day on you will refer to that minimal as a "good day."

I have the ability to create an invalid out of you overnight, and I will. It will take a marathon effort for you just to get out of bed. At a cellular level your immune system will be in a constant war battling itself and unnamed viruses which will painfully be replicating in your brain. I promise you despair along with isolation and losses far beyond what you can ever imagine. Your mind will be in a constant "fogged" state, your expression will be unable to express, and your eyes will have a noticeable "glazed over/drugged out" look. You will find it most difficult to pay attention, concentrate, or even process the simplest of thoughts.

Making change from a dollar may well be beyond your ability now. Your mouth may feel like it is full of marbles when you try to speak, as your tongue twists and nothing you try to say comes out right. Who would believe your level of education when you can't even string enough words together to make a complete sentence ... or one that makes any sense. I promise you, at any unsuspecting time, severe abdominal pain, nausea, vomiting and diarrhea along with a host of gastro-intestinal disorders. I will make you weak and lifeless as one could be without being confirmed dead. You will be house-bound or in bed for several years if not the rest of your life. As part of incapacitating you, I will make your heart race and your head pound; your throat will constantly be sore and your lymph glands will swell. That will all seem trivial after I inflame and spasm muscles throughout your body. Crushing a grape may take too much energy or be too painful now. On those nights that I allow you to sleep, you will awaken drenched with sweat and throbbing with pain. Perhaps I might even throw in a little seizure activity. On those nights that I do not allow sleep to occur, I will torture you with thoughts of death.... Not suicide, but death. Simply because you have not come to realize that this is your new life, and that you are not living. I have also done a few things that you may not be aware of yet. I placed some lesions on your brain (have you noticed how you have difficulty with balance and memory yet?) and have permanently turned your immune system on high. I have shorted out your nervous system so that you have intermittent numbness and tingling which might resemble an electrical current zapping you from time to time. Now I have you, I have taken over your body and mind. I have stolen your life but left you alive, not very functional, but by clinical definition you are still alive. Your family will not be able to give you all the constant care that you need on a daily basis. As for your friends, well, they're still on that ladder climbing up. I'll find them soon. By now you must have learned the definition of isolation, if for no other reason just so that you do not have to explain how you feel to others because they won't understand anyway. Isolation will save you all that energy. Your health insurance has already been or will shortly be discontinued as you lost your job from not being able to "keep up." Perhaps you got caught dozing off or called in sick one too many times. Now that you are no longer employable or insurable when you seek medical care, any doctor who figures me out will diagnose you and say that what you have is presently not curable. Now it is time for you to seek out medical care, nation-, if not world-wide. You will give more blood samples and have more examinations than you ever imagined existed. Then you can take the results to dozens of doctors in search of a diagnosis. One that is valid and accepted by the medical community and insurance companies. One that does not label you as depressed or say that "it is all in your head!!!" Most doctors will suggest a vacation, weight loss diet, new or increased love life, help with the children, or change of scenery as the "cure," mainly because you look like the picture of health. This is my mask of deception. You will pray for a positive word from current research. Research which you will soon learn is quite limited due to lack of funding and government support. You will learn new vocabulary which contains words like: T-Cells, Cytokines, Nuclear Antigens, Natural Killer Cells, Immunoglobulins, Cytomegalovirus, Seratonin, Cerebral lesions, and Immune Dysfunction are among a few. However the most important words that you will need to know and fight for the most are Social Security Disability and Medicare. At one point I may give you a false sense of recovery or remission. let me assure you, I'll be back, as you are my prisoner and that makes me your keeper. I have placed the lives of millions of people nationwide in limbo. I would consider this an epidemic, wouldn't you? Eventually I will bring the government, health care workers, and society to its knees in search of unraveling my complexities, which are crippling humanity. I leave it up to you, my victims, and your caretakers, to educate the public and let them know that I am very real and that you are very sick.

I AM Fibromyalgia

wriiten by

Kathleen Houghton, Director, Alaska CFS-MCS Association

Information Provided By:

http://www.smilingfibros.net/id37.html

{{Soft & Gentle Hugs}} to all of you

{{Soft & Gentle Hugs}}
Angelbooze

Previous discussions I participated in:
Hi All
Surgery and Fibro
PRAYER NEEDED

05/05/2008 07:10 AM  Top
Tuffy
TuffyPosts: 233
Member

Shocked WOW - that was so powerful!! I may have to make a copy of this and give it to my 'non' believing sisters and also as a 'reminder' for my DH! Thanks for this, this morning. Today, this lil' bugger is hiding somewhere in the bushs, but I'm prepared, as always, for Fibro to jump on me like a lion and drag me back to his den to eat me alive! Happy Monday to everyone!

Previous discussions I participated in:
New but Long Time with Fibro
DHEA
newbie

05/05/2008 09:08 AM  Top
cadburry
cadburry
 
Posts: 543
Member

AngelBooze, thank you so much for sharing this poem with us! I just posted it over on one of the sites I write blogs on! I just feel that this poem will explain everything to my friends there! My friends have been wonderful as we have all been talking for a couple of years now on the computer, but some of them say get well soon, and then when I talked about having my arthritis surgery it was like they all forgot about Fibromyalgia and said oh so this is whats wrong with you. This poem couldn't have come at a better time Smile

Post edited by: cadburry, at: 05/05/2008 11:09


05/09/2008 05:27 AM  Top
Cathy0402
Cathy0402
 
Posts: 251
Member

angelbooze that my friend was the most AMAZING THING I HAVE EVER READ i am so in love with that it saids it all thank you for that just wanted to give you a big hug for it and sharing it that was the best
cathryn

Previous discussions I participated in:
Lyrica
Hi All
Help

05/09/2008 02:02 PM  Top
PDW
PDW
 
Posts: 223
Member

Cjay,

I'm sorry to here about how you are treated.Sad I don't have any problems, my child is 18 and remembers 3 years ago we were still hiking and walking for ever. It's hard for me to because I was always a very active person. Until this stuff took over my life.Shocked

Reply

Health Topics: Cytomegalovirus, epidemic, Gastro, Lymph
Share this discussion with your friends:
Members who viewed this page also read:


Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.
Contact Us | Bookmark Us | FAQ | Awareness Ribbons
About Us | Terms & Conditions | Privacy | Spread the Word | MDJ Advocates | Advertise
Copyright (c) 2006-2013 MDJunction.com All Rights Reserved