advice needed

All your fibromyalgia experiences, questions and answers.

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advice needed

Postby paul2304 » Sun May 24, 2015 1:09 am

Hi , new to the forum and to Fibromyalgia

My partner has this condition and she is clearly struggling to deal with it and also struggles to explain the difficulties the condition brings with it

I am trying to get as much help/information as i can as it hurts to see her struggling and not being able to tell me how i can help

Thank you in advance
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Re: advice needed

Postby suzymarsh » Sun May 24, 2015 8:19 am

Hi Paul, all I can advise is that any questions you or your wife have, I would ask on here, you can get help and advice and support from so many of us sufferers, I have had it for 6 years now and find the support of the group fantastic, x
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Re: advice needed

Postby paul2304 » Sun May 24, 2015 10:00 am

The problem is knowing where to start , Joanne has only recently been diagnosed and whenever i try to offer help she cannot tell me how , i actually wish i could feel her pain so that i knew how it is slowly destroying her , i get asked how i can help with her pain , how i can help with day to day things etc

To say i feel helpless is an understatement
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Re: advice needed

Postby thoughtmatters » Sun May 24, 2015 10:41 am

I found that sharing the 12 Spoons analogy with my husband helped his understanding.
http://www.butyoudontlooksick.com/artic ... on-theory/

I also try to give him a percentage of available energy I have for the day (I just ask myself and a number pops into my head unconsciously. So far it's been pretty accurate!) and I also give him a pain rating our of ten.
Those numbers give him a framework for how I'm feeling.

For myself, I want to be able to do as much as I can for myself, but also know that I can freely ask for help when needed with chores, cooking, etc. And encourage her to do as much as she can for herself - including finding the right medication, stretching, gentle exercise, etc.

I wish you both luck as you negotiate this tricky path!
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Re: advice needed

Postby divingforPearls » Sun May 24, 2015 11:18 am

I'm sure you are a great support to her; as a sufferer with a fantastic husband, I would say that his understanding and patience makes it all so much more bearable. The guilt I feel at this basically destroying his life expectations too is huge, my husband struggles too watching my pain. Your post is a reminder that fibromyalgia affects (destroys) not only the individual sufferer but their families as well. Your continued empathy is the best thing you can continue to do for your wife. I thank you, I appreciate how hard this is on those we love. Practically, I find it such a relief when my husband encourages me to rest / takes the kids to school for me / gets the children to help eg unload the shopping or do some washing up / praises and thanks me for any very small thing I have managed to do / gets me the supplements I need -(Floradix for the exhaustion really helps) /gives me plenty of hugs. Hugs are the best medicine! Best wishes to you and your wife. My husband is like a superhero to me.
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Re: advice needed

Postby jojo7143 » Sun May 24, 2015 2:25 pm

Hi
Sorry to hear you're having difficulty with this illness, it's really hard to deal with it and understand when you have it yourself, never mind trying to help care for someone you love.
I have recently read this kindle book, which is good for anyone who cares for someone with fibro. I found it great as a sufferer myself too.

http://www.amazon.co.uk/Understanding-F ... =lisa+lynn

Hope it helps and keep posting questions on here if you need help, advice or support :)
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Re: advice needed

Postby bandj » Sun May 24, 2015 3:48 pm

Hi Paul,
it's great to hear how much you want to support your wife but I'm sad that she, and you, are suffering. My hubby's great too, he's so understanding and kind. He will chase me off to bed if I need a sleep but will help by vacuuming and things like that.
The best advice I can give you is to be patient as you both learn to live with fibro. Don't try and take over but ask her if she would like some help with housework or whatever. And take her out somewhere too, maybe you have a special place you like to go. My hubby encourages me to go out especially when I want to hide away. He took me to get dog food today even though I didn't feel like going out! I'm glad I did get out for a bit now. Watch out for signs of depression as fibro is very difficult to live with at times. Encourage her to talk to her doctor and accompany her if you can.
and don't feel alone, we all know what the two of you are going through and this forum is such s good source of support and help.

thinking of you both x
There are these three things that remain: faith, hope and love. And the greatest of these is LOVE.
1 Corinthians 13:13
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Re: advice needed

Postby paul2304 » Tue May 26, 2015 7:35 am

I have to be honest and admit we live apart at the moment , Joanne refuses to let me help in any way , all i hear is that at 27 yrs old she should be able to do things by herself , It is destroying me as a person knowing she is in so much pain and struggles so much but self pride gets in the way of common sense , i tried to read your kind replies to Joanne yesterday and could not without emotion getting in the way , i thank you all and hopefully your words will help us deal with all this
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