Typical reaction

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Typical reaction

Postby pwinstanley » Sat Nov 09, 2013 5:26 pm

My wife came downstairs this afternoon and asked if I was alright because I was rubbing my eyes. I said 'Yes, well no actually. I'm really tired' (I had been helping a Cub group that morning). She then did an exaggerated sigh and said 'Is that your way of getting out of jobs today then'. My 14 year old chipped in my telling me to 'Man Up'.

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Re: Typical reaction

Postby bumblebee57 » Sat Nov 09, 2013 6:20 pm

Hi. it makes things worse when our own families dont understand. Fibro drains everything out of our lives and it doesnt take much to do so. Its not a case of "Man up" or "get some exercise", "eat properly", "get enough sleep" and all the usual stuff. None of that stuff helps. I personally know 3 men with fibro and it must be hard to not look a bit feeble, even tho its not your fault how you feel. i sympathise.
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Re: Typical reaction

Postby Kyomii » Sun Nov 10, 2013 1:26 am

Ask your wife to read this, it was written by a Registered Nurse, who didn't believe in fibro until she got it:

I'll creep into your life when you are young and carefree,
so subtly you won't know or even recognize me.
I'll start with a little tingle, perhaps some numbness or a little pain
I'll kick you when you are down, when it's cold or starts to rain.
Ignore me and explain the little things away,
but as the days go by I'll settle in to stay.
Fibromyalgia such a medical term
for something so sinister, cruel and so stern.
Tell your doctor I am here-he won't be able to see.
No tests, no broken bones, no lab to prove it's me.
When you awaken in the morning after years I have progressed,
you'll be hurt and feel so stiff you'll hardly get dressed.
I thrive on every crisis or pitall of emotion,
I'll drown your soul like silent waves crashing on the ocean.
You know they'll call you crazy, insufficient, even lazy.
Your mind will be a fog at times- your memory even hazy.
The pain will get intense as slowly pass the days,
then you'll have to pay attention, I won't go away.
The little hints of tingling will turn to burning hell
You'll think you've lost your mind in my silent evil spell.
You'll feel so bone deep tired, I'll be worse than the flu
But you look so healthy, I'll be sure they don't believe you.
I'll attack you in your sleep like you never went to bed
Your family may believe I'm just inside your head.
They say you don't have pain; It can't be that bad.
Some aspirin and some sleep fixed the flu that they had.
Am I a virus, a chemical, or something that you lack?
Be assured that if I leave, I'll always be back.
At times you may return to what you use to be.
Enjoy it when you can because I will not set you free.
I'll take away time with your children, rob you of your joy and smile.
Send away your friends and family--- I'm back for a while.
Fibromyalgia is my name for those that believe I am for real,
Such medical terminology for the way I cheat and steal.

By Debra Van Ness, RN (a fibromite)

Also have her read the spoon theory http://www.butyoudontlooksick.com/wpres ... on-theory/

She might then begin to understand.
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Re: Typical reaction

Postby pwinstanley » Sun Nov 10, 2013 2:43 am

Thanks guys. I really really appreciate your support. It means so much to me right now. Thanks

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Re: Typical reaction

Postby sensualitykj » Sun Nov 10, 2013 12:47 pm

Hey, sorry to hear your wife and son aren't being supportive. It's definately not a case of manning up! I could be here all day giving examples of unhelpful reactions. One example from recently, me and my mates were talking about emptying the dish washer, I said I find it hard to fill and empty, however it's easier now I have a pc chair on wheels in the kitchen so I can sit and empty it etc. My mate's reaction was "everything is about your disability", I said "yes it is, and it will be until I die!". He clearly doesn't realise, no matter how many ways I've tried to tell him, that my disability affects every moment of my life! However I have to remind myself that FM is hard enough for me to understand, so I can't expect others to. I think trying to explain fatigue is the hardest, fatigue stops me doing stuff more than pain etc. Showing your wife that poem is a good idea, I think educating others is the way to go. Good luck. :-)
Be in the present moment. The past is a memory, the future isn't here yet. So enjoy the NOW!
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Re: Typical reaction

Postby pwinstanley » Thu Nov 14, 2013 1:13 am

Thanks sensuslitykj

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Re: Typical reaction

Postby painprincess1 » Thu Nov 14, 2013 11:54 am

aww hun isnt it rough when your loved one think your taking the p.have u ever asked her to read this forum to see how many ppl suffer alone like u do.i no its hard for anyone to understand when they don't have it.if only we looked ill but we don't.i think id ask her to read up or go to the dr with u if u have a good dr maybe it will help her understand more.
smiles and the world smiles with you. cry and you cry alone.
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Re: Typical reaction

Postby pwinstanley » Fri Nov 15, 2013 4:26 pm

Thanks pp1

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Re: Typical reaction

Postby Tracie » Sun Nov 17, 2013 12:38 pm

Sorry you not being supported
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Re: Typical reaction

Postby pwinstanley » Sat Dec 07, 2013 3:10 pm

Hi Kyomii. Just to say thank you for that poem. It's amazing!

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Re: Typical reaction

Postby dotty lotty » Sat Dec 07, 2013 3:50 pm

Hi pwinstanley sorry to hear you are not getting family support. Agree with others get her to read the poem and some messages on the forum. Sending you :hugs: :hugs: :hugs: :hugs: and a loan of my :teddy-bear:

I have also found some good video information on Pain Association Scotland web site which I am working my way through.
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Re: Typical reaction

Postby pwinstanley » Sat Dec 07, 2013 4:46 pm

Bless you and thanks:)

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Re: Typical reaction

Postby Kyomii » Mon Dec 23, 2013 2:13 pm

You are welcome pw Stanley, also read the spoon theory I posted a link to, this should help your wife understand your lack of energy. The way I explain it is healthy people have duracell batteries on full each morning to run their day from, we have cheap foreign batteries that aren't even fully charged ;)
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Re: Typical reaction

Postby pwinstanley » Mon Dec 23, 2013 6:14 pm

Thank you. I managed to show her the poem at an opportune moment and it did make her think and I think has made her more understanding. I also like the cheap foreign batteries analogy! Thank you all for your support with this - really appreciate it. Please all have a happy, and gentle, Christmas.
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