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08/18/2010 02:05 PM

My life has changed, yet my family lives on....

riverbottombaby
riverbottombaby  
Posts: 65
Member

I'm honestly struggling at this moment. Fibromyalgia has turned my life upside down. I can no longer do the things I used to. I can't keep the housework up(and that soooooo bothers me b/c I cannot stand clutter and chaos), I can't get the laundry done. I used to be supermom/wife/daughter/sister/aunt....and now I'm just sick. I had always hoped that if I should ever be in a position like this that my family would rally around me and help me out, yet they continue on like there's nothing different. My house is going to sh*t, laundry is piled up, my "men" aren't even keeping the yardwork done. I feel so lost and alone. I stay isolated downstairs in my room...I hate walking thru the house seeing what a mess it is and seeing my family just laying around. I don't know what to do to get them to help and I physically can't hold out to get it all done. I find myself just sitting alone crying all the time. I don't know what to do and this situation for me is getting desperate.Sad
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08/18/2010 03:18 PM
gz55

oh rbb, i'm so sorry you're having such a tough time right now. it can feel awful when it seems you are fighting this all alone - just know that we are all here to talk to and vent your frustrations to and that we understand.

i've had long periods of time when i could barely function and just hated how things were not kept up. and like you said, my family just goes about their business like i'm not suffering and in extreme pain. is it denial, ignorance or what? i sure don't know!

is your fibro being managed well and do you have an understanding doctor? the more i found out (especially from here!) the better able i was to manage this beast and the more i could do. i'm still definitely handicapped and still have horrible days but i'm able to function and cope much better.

i'm so sorry you feel so alone - i know that feeling well. i hope you get some comfort from knowing that we're all out here listening and understanding.

hope to hear from you soon,

gentle hugs,

gail


08/18/2010 03:37 PM
naddya819
naddya819  
Posts: 4435
VIP Member
I'm an Advocate

rbb, you're not alone in this, believe me! Like Gail said, when your fibro is managed well, you'll find it easier to do. Perhaps your "men" need to go to a doctor's appointment with you, or you need to print out some information that will help them to understand. www.fmaware.org has lots of good info to spread fibro awareness! Check out their website. And don't feel alone, we are all here for you in this!

08/18/2010 05:03 PM
riverbottombaby
riverbottombaby  
Posts: 65
Member

I've taken them all to my doctor....the doctor is another hell...He's decided to send me to a specialist, but it's all hurry up and wait. It's going on three years since the whole doctor hell started and I'm still struggling to find one that TRULY understands fibro. I've printed articles and stories, heck I've had them on here reading about how others suffer just like I do and I still get no support. I'm so exhausted everyday, and knowing I have to suffer in silence because my family is tired of hearing about it, breaks my heart. I'd give my life for any one member of my family and to know that it's all been done in vain is excrutiatingly painful. I cry my way thru most days...I'm honestly stuck in a viscious cycle and I don't know how to break it. Hopefully I'll find an understanding doctor who will truly help me. I sooo sppreciate you guys. I really hate posting depressing things, but it's just what i'm going thru now and I have nowhere else to turn. Your support is all that keeps me going at times. Thank you from the bottom of my heart. Hugs and much love.

08/18/2010 05:44 PM
gz55

don't worry about posting depressing things because we truly understand. i was diagnosed with fibro in 2006 and still everyone in my family pretends everything just hunky-dory. i get more compassion from coworkers than from them - go figure!

when will you be seeing a specialist? and is it a fibro specialist? what have you tried so far in terms of meds or therapy?

gentle hugs,

gail


08/18/2010 06:37 PM
naddya819
naddya819  
Posts: 4435
VIP Member
I'm an Advocate

Don't ever worry about posting how you really feel here, that's what this site is all about! We know how you feel and we can say that because we've been there too! I'm sorry I don't have any more words of advice for you, all I can say is that tomorrow is another day. If I were you, I might start looking for a new PCP or try to see a specialist on your own. That's what I had to do and I went through 7 doctors before I got the help I so desperately needed. It's out there, honey! I promise!

08/18/2010 07:00 PM
riverbottombaby
riverbottombaby  
Posts: 65
Member

I've been on every fibro drug out there all with no relief. Since we're military, we have to be referred and I have to wait on my PCP to give me the referral. The whole doctor situation has been a nightmare, I honestly thought this one understood. I've tried just about everything, even crazy home remedies, eating certain foods, staying away from stressors....you make the list I bet I can check it off. I go back to my PCP next week and I hope he's got his referral ready, I sent him a printed out sheet about this fibro institue that's about 4 hours away from our home. I just feel so damned abandonded by my family. I've stood by them thru hell and back and I just cannot wrap my head around their behavior. I try to meditate hoping maybe to go back far enough to see where I've done them so wrong that I deserve their non-existent participation in my fibro. I feel so trapped, not just inside this body that no longer wants to be mine, but in a family who just used me up and are spitting me out......I don't know how to say thank you enough...you guys are all I have. Hugs~

08/18/2010 07:31 PM
gz55

YOU did absolutely nothing wrong and you absolutely do not deserve to be treated that way. i can't explain why some family members are like that. mine sure are - they don't really make any demands it's just that they ignore the whole situation. even when i bring up things like i'm trying this or that there is just a real aggravating silence. i get soooooo frustrated. i'd be so on top of things if it were one of them - looking for new treatments or whatever. once after a surgery, i set up camp in the basement (it's finished) because we had recliners i could sleep in and a big screen tv and i wouldn't have to do the stairs. i pretty much lived down there for a few weeks and would you believe nobody would come down just to say "hi" or to see how i was doing? unbelievable!!!

didn't mean to bring you down further - i can just related so well with your situation.

hang in there and do something fun for yourself!

gentle hugs,

gail


08/19/2010 10:03 AM
riverbottombaby
riverbottombaby  
Posts: 65
Member

You didn't bring me down honey. I thank you for sharing that with me. I don't know what else to do with them other than just let them be. Take this morning for example, I cannot take my meds with our tap water, it contains too much chlorine and winds up making me sick to my stomach, so I always try to keep at least one bottle of water....today there's nothing in there for me to take my meds with. I called my husband and he acted like he could care less. I'm not usually a cryer, but that just kind of hit me hard. I mean, even a simple bottle of water is too much to ask for. If I felt like going to the store I'd go, but the trip to the psychologist wore me out Tuesday and I'm still trying to recover from it. I have to drive at least 45 minutes for any of my doctor visits and I'm barely getting over one before it's time for another one. Oh, I sound like such a sad sack today, but I feel like one too. I refuse to give up, even though my family already has.

Love you all!


08/22/2010 08:13 PM
Tabi
Tabi  
Posts: 180
Member

Oh River sweetie... you are singing the song of the fibromite. Why do you think we have Fibro... you got it... the little red cape flying off our backs. I had the same problem. My youngest son (who is 18) is no longer living at home because of his lack of "believing" me. He was the only one (thank goodness) out of the 3 besides me that wouldn't get on the "Mom needs help" band wagon. As for the rest of them... I bought one of those cool mom organizer calendars and everyone has chores. I'm not saying I do nothing but I don't do EVERYTHING anymore. We also have a "cook calendar" (everyone here are adults) that we all follow so I'm not carrying that all by myself either. No matter what the age... everyone can pitch in. And sometimes just writing it down... literally scheduling it... rather than expecting anyone to read our minds really helps. Your family may be feeling pretty scared and helpless too. I have no idea your family dynamic but it sure helped with mine so I thought I'd share my "cure". I hope it can be helpful to you. I wish you all the best... this is not easy for any of us.

Brightest blessings and lots of love, Tabi

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