September 21, 2004
Hope for Newly Diagnosed with FMS
I've survived the 'Crash after the Miracle'.........support from family and Faith got me through.
I want to post a message of hope for those newly dx'd. It does get better. The first year(s) are the worst. Yes, there will losses of people, activities, parts of your life. Grieve them, you deserve it. After 2 years of being sooooo sick I was homebound, I truly was better from treatment and I had Hope. As bad as the pain and fatigue are now, terrible always, it's not as bad as the confusion + pain + fatigue + bizarre symptoms arriving daily. While I can't work anymore, I have found that I can LIVE. My job is to love my family, and I do it well, even from bed some days. I find more Joy in life and more Laughter in my days and more Hope than before. It's living in the moment which I am forced to do by this disease. And living in the moment brings peace & joy & hope & love, unlike any I experienced pre-FMS (except for the birth of my Jen of course).
Hang on to your Faith, Hang on to Hope, Let those who love you help you & spend time with loved ones, the source of the most Joy, no matter the pain level. A smile and some laughter does a body good.
Blessings, Judy
PS Garrett is in school and adjusting. We're still so thrilled. Frank is enjoying lots of time with his son and is so happy. Jen is better and back into her busy life. Mom is doing better re divorce now that Dad's packed out his stuff. And.....ick, I feel a cold'y' thing coming on, maybe the bug from Jen. I'll do my best not to give in to it!
Posted by on September 21, 2004 03:05 AM
Judy,I get this so much I just can't stand it! I don't even tell people anymore. I'm 25. And I'm very ill. I think a lot of the problem is pain and fatigue is subjective. They may think that we have 'papercut' pain, when really it is closer to chopping the whole darn finger off. I have a friend with FMS that has it much worse than I do, so I know there are varying degrees of it, but he is completely disabled. When he tells people that he has FMS, they say that he must be diagnosed, because you can see his problems. FMS is just a fashionable label placed on hypochondriacs. (!!!!) Someone ACTUALLY said that to him. I don't run in to too many people that haven't heard of it anymore, I used to though. Usually they think I am a hypochondriac, and I sure feel like it sometimes. Doctors tell me I'm too young to have as many problems as I do. Gosh, I guess I can just snap out of it at any time, huh? (insert sarcasm here) Truth is, I've been in three major car accidents, and fractured my neck in one of them. That is enough to cause FMS by itself. Hang in there, they will develop concrete proof someday and put them all to shame. Hugs,Heather
Posted by: HeatherLeigh at September 22, 2004 02:20 AM
Hey Judy,I can totally relate to the "but you don't look sick" thing!!! I get that a lot when I tell people I have cancer. It is depressing and can make clinical depression worse when you keep hearing from people how much they do not believe you. Even if they don't come right out an say it, just by comparing themselves to you and your ailments it is as bad as if they say you are a baby and if they can deal with life so can you. How wrong. Unless people have been through a period where there is no control over some part of their health they wil never understand that it is definately possible to look great and feel like CRAP at the same time.I don't know if that made sense or not. It did to me but that doesn't usually mean to much. Anyway I hope that you are trying to keep well(((hugs))) kylie
Posted by: Possum at September 23, 2004 01:06 AM
Dear Kylie,I've often thought that people with cancer also have an invisible illness and are discounted until the hair is gone/shave your head and they'll believe you have cancer! Isn't that ridiculous!! Again, we don't even really want outsiders to know, but friends and family...."Hello, you are my support circle"!!Oh my Jen had mono the past 2 weeks and I'm beat soooo beat from taking care of her (thank God for my Mom who helped. But I'm home again and gonna go take a nap right now, so I guess I'm starting to take care of myself again.....thx for the note Kylie,Hugs and Blessings, Judy
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TITLE: I survived the Crash.......and about Hope
AUTHOR: Judy in AZ
DATE: 9/18/2004 07:06:36 AM
Posted by: Judy in AZ at September 24, 2004 10:25 AM