I feel so helpless...
#108826 - 09/28/04 11:46 AM
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Hubby and I JUST moved to this new community. And I don't have cancer G-d forbid or anything like that. How can I tell these people I need them to make food for us for the holidays (7 meals!) when I don't even have a diagnosis? And why can't i cook for hubby and I? I can't even do the dishes  I am SO FATIGUED and my body aches...
I sleep a LOT but it's interrupted sleep. I dream most of the time I sleep. Can it still be fibro that's plaguing me? Could fibro be the little burning pains I get every now? Could that be why I'm so tired and helpless?
I am just SO DOWN! We are starting to make friends here...I don't want toc all these people up and ask them for meals...I barely know them! I feel like such a bad wife...I feel so helpless! I just need to rest and use the heating pad most of the day it seems. Errands are exhausting and I come home needing a nap.
I feel like crying. Am I alone in this? Or is this just what it's like to be chrnically ill? How do uyou guys withg fibo do it? How do you live like this? I've been living like this for over a year...but in our old community people OFFERED meals...I never had to ask. I'm so embarassed! And my poor husband...he has to stay home too. My mom said he was gonna trade me in for a better model cause I'm falling apart. She was joking, but the words stung. Bad. I have fears of my husband leaving me...I guess his is why.
I often wonder why he stay with me? Especially at times like this...it's difficult for me to see why he loves me. When I can't even do our dishes and my body seems to be falling apart.
Anyway, please let me know if things will get better if it IS fibro and if you think it's a possibility if I get tons of dream sleep that's interrupted. I just don't know...I mean I feel like I have the flu or a virus a lot of the time.
I just want to get better already! I feel like a party pooper. And I don't want to call people up and ask for meals...how embarassing! I feel like crying at tht ethought. I really need your support everyone, I am just SO feelign awful.
I love you guys,
Ruchie
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Formerly known as Ruchie
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I'm sure as they find a diagnosis things will get better.. meanwhile- talk to the rabbi/rebbetzin.. or if there is a mitzvah corp in the shul, talk to them... you'd be amazed.. people will come out to help in droves if they know you need it and it will lead to getting to know them better and making friends.. one option is to talk to the rabbi about people bringing meals OR bringing a meal to share and eating with you... because you aren't contagious, just too sick to cook for yourself right now... and who knows it may lead to something you can in turn return to the community when you are feeling better.
Good luck, but I know at least in our shul we have welcomed even new members with extreme needs and made sure all was taken care of and I know my parents have foudn the same- mom has some pretty serious medical issues, including but not limited to Crohns and a problem with her back and knees that sometimes leaves her bedridden. they have opted to drive on holidays and shabbos but only to things that they would walk to if she was healthy, which has allowed them to accept dinner invitations, etc..
good luck!
Amie
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Dietetics Student (anticipating RD exam in Aug 2010)
IBS - A
Dairy Allergic
Fructose and MSG intollerant
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Ruchie
#108866 - 09/28/04 01:07 PM
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Linz
Reged: 09/01/03
Posts: 8242
Loc: England
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Oh honey! I was just gonna ask how you were doing and here you are.
I still think it sounds like you could have Fibro. My bad-Fibroey-sleep is interrupted with periods when I half wake up or really wake up, so my sleep is really bitty. If you remeber lots of dreams, then you must be coming out of deep sleep or you'd only ever remember the last dream you had. And feeling flu-ey is CLASSIC Fibro! Talk to your doc!!!!!!!! Please? Something to make you sleep through the night could help you so much.
Don't fret about feeling down. Almost everyone does when they're in this stage with Fibro. It sucks big-time. I found it was like I'd been in a mega accident, but one that no-one else would admit had happened. I had no clue how to minimise my symptoms. I just felt like death all the time. I repeat - IT SUCKS! Don't worry about feeling you can't cope - it's NORMAL! Ditto feelings of worry/guilt about partners. It's a hell of a lot for both of you to come to terms with. Yep, this is what it's like to be chronically ill. It sucks, but it will get easier, I promise.
With meals, how about pasta and sauce from a jar? I can make that most days. Or noodles with soy/sweet chilli sauce? Or if you have one day when you feel up to cooking, make lots and freeze/refridgerate it. I often find I'm better mid-afternoon than in the evening, so I might get dinner ready then instead of trying to do it when I'm tired out again.
On a bad day, doing the dishes involves a strong painkiller and caffeinated tea for me. Sometimes even that doesn't cut it. My Mum really struggles to understand that, but I think she's realising how awful this DD can be. I mean, how crappy is it that you can't do the dishes when you WANT to do the dishes????!!!! 
Talk to your Rabbi about all this. Don't be embarrassed about telling your neighbours that you're ill. This is nothing to be ashamed of. Loads and loads of people have Fibro or CFS. Millions. You are not weird and you are not alone.
Check out the forum on Fibrohugs. It's not as good as this one, but they're very sympathetic there. Please email me if you want to chat off the boards - I'll respond as soon as I open it!
{{{{{{HUGS}}}}}}
Love Linz
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Formerly known as Ruchie
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Amie,
I e-mailed the Rabbi...I was too embarassed to call.
People know I'm sick..and it's just so embarassing to ask for meals/help. But I don't have a chouce...
I wish you were here!  I can tell you would come hang out with me...but I hope you wouldn't be upset if my face landed in the soup cause I couldn't keep my eyes open 
Thanks for responding...knowing youc are means a lot! I hope you have a wonderful Succos, Chasima V'Casima Tova!
Love,
Ruchie
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Formerly known as Ruchie
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and no- I wouldn't be upset, between relatives and friends with major illnesses, I'm sorta used to it... and I know Bill would gladly take food elsewhere for a dinner because he wouldn't have to clean up our house for it...
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Dietetics Student (anticipating RD exam in Aug 2010)
IBS - A
Dairy Allergic
Fructose and MSG intollerant
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Oh, Honey!
#108887 - 09/28/04 01:48 PM
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Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
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You are not alone Ruchie! We are all here to support you. It is okay to feel the way you do. And it is normal! I am newly diagnosed and have just recently started the meds so they have not taken effect yet. The doc said it will take 2 weeks to build up in my system and take effect. So you really need to press the issue with your doc so you can get started on the meds and feel better. I am on day 11 of the meds and I still feel so darn tired I fall asleep at my desk and have aches most days.
I have started to get sleep where I remember having a dream but I still feel tired. I don't think it is enough deep sleep happening and this is probably what is going on with you. You are getting some deep sleep but not nearly enough.
And I know how you feel about the hubby. I sometimes feel that my husband thinks I am just making stuff up since there is no concrete test for any of my ailments but he keeps reassuring me that he sympathizes, understands, and loves me. I am sure your hubby feels the same way for you.
And don't feel bad for asking for help. Everyone needs help at some point in time in their life. If I can't do the dishes or the laundry well than it waits or my hubby pitches in and helps. And I would do the same for him if he was ill. Don't worry yourself to death, just focus on feeling better. And again press that doctor for a Fibro evaluation.
I am praying for you and I hope you feel better soon. If you need to keep on venting we are here to listen and support you. You are a wonderful person and don't you forget it. 
Christie
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Christie
~Hoping and Praying for Sleep!~
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This might be stupid/obvious/out of your price range, but is there a Kosher deli nearby that you can order some food from? Are those places closed on the holidays? I'm sorry for my ignorance, please don't be offended.
I hope you feel better soon.
Panda
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Amanda
I live in the Big Apple, but I don't eat the skin
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Have you been checked for mononucleosis and the epstein barr virus? It seems a bit long to be suffering, but I was sick for over 4 or 5 months and still get very tired easily and achy. I had mono 7 years ago. Also, my mom suffers from fibro. She is achy a lot and doesn't sleep well. She takes tylenol pm so she can sleep. A lot of the time, when I am on nights, she will call me at 2 or 3 am because she can't sleep. I'm sorry hon...please keep us posted on how you are doing.
J9
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Ruchie, I'm so sorry about what you're going through. Sometimes it's so hard to understand why terrible things happen to good people. I wish I could offer you some advice... but all I can do is pray for you, and I certainly will do that. You'll be in my thoughts, Ruchie. Hang in there!
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"Anyone can exercise, but this kind of lethargy takes real discipline." -Garfield
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