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The UKFibromyalgia Forums • View topic - Taking off my 'mask'



Taking off my 'mask'

Any tips on what helps you including alternative medicine.

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Taking off my 'mask'

Postby MonkeyFeatures » Sun Feb 20, 2011 2:26 pm

I went out for something to eat then drinks with the girls last night, we were out early (5pm) and it was a really good night. Although there were times when I was uncomfy it wasnt too bad most of the night but it got to about 10pm and the pain started creeping in and I was home before 12.

My friends were great and got a taxi home with me and dropped me off first but in the taxi they we're asking what it's like and it made me realise how much they really don't have a clue how much pain I'm in and just how much a struggle things are at times :( but how am I supposed to show them that without just sounding like a whinge bag! I'm so well practised at hiding things that I'm struggling to take off my 'mask' when I need to :s

Any tips? X



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Re: Taking off my 'mask'

Postby shazq » Sun Feb 20, 2011 2:44 pm

Hi Cherry
Glad you were able to get out and had a good time, it does you good to get out of the house once in a while. :hugs:

I tell people that i have a neurological problem and my body gives out the wrong signals to muscles and nerve endings and our thermostat is broken so our body has difficulties controlling our temp.

If you dont want to go into to much detail print some info and ask them to have a read through it in their own time, that way they get an understanding in to your everyday life.
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Re: Taking off my 'mask'

Postby Ldyalb » Sun Feb 20, 2011 4:20 pm

I haven't explained fibro much - just to close friends/family and my former colleagues - I usually give 'chronic pain and fatigue' as a short answer, I usually say it used to be called Rheumatism - that stops the 'oh that's a new fangled disease' thoughts coming up, I find 'rheumatism' is easier for older people. Dad (71) says he knew loads of people with Rheumatism when he was a boy, so it's usually a simple way of getting people to be like 'ah, I've heard of that'.

If I elaborate further I say something similar to Shaz, that I have a neurological condition which causes pains in the muscles, tendons etc.

I think the spoon theory works well when you're trying to demonstrate what it's 'like' to have a chronic illness

http://www.butyoudontlooksick.com/artic ... serandino/

It helps people to 'get' why you can do x and y but not z.
'Think of all the beauty still left around you and be happy' - Anne Frank

TMJ, RLS, HMS, Fibro, Dyspraxia - ASD + Dyscalculia overlap, Eczema + Rosacea + suspected Psoriatic Arthritis.

Being an Adult is nothing like it said in the brochure...!
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Re: Taking off my 'mask'

Postby georgina.hiam » Sun Feb 20, 2011 11:03 pm

Hi cherry

To close friends and family I have shown one for non believers post that us on here but to others I say that is like having arthritis of the muscles, but it's not centred to one area xx
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Taking off my 'mask'

Postby MonkeyFeatures » Mon Feb 21, 2011 11:51 am

Thanks ladies! Yeh I kind if describe it like arthritis all over.

The thing I struggle with though is actually admitting that I'm in painor how bad it is, I tend to just suffer in silence x




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Re: Taking off my 'mask'

Postby loubie » Tue Feb 22, 2011 7:40 am

think we all do that cherry
we all wear that mask :(
when i was first ill with this, my hubby used to say....you are so much brighter
when your out of the house....you are better when people are around you.
he knows now, its the mask i put on. :(

we probably don't do our selves any favors because of the mask.
people don't see the pain we are in :(

glad you had a good night out with your friends :hugs:
loubie xx

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Re: Taking off my 'mask'

Postby nutty1 » Sat Feb 26, 2011 1:23 am

i wear that mask too ,infact when really bad i hide away ,only my oh has seen me real bad.not even my grown up kids .i say same as shaz the brains sending wrong signals but i have dystonia too .with regards to fm i say the long word then say it used to be called fibrosis (the older generation understand that one . :wine:
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Re: Taking off my 'mask'

Postby jazzy » Wed Mar 02, 2011 11:36 pm

omg ive been sat here thinkin today im doing the same thing ive got 21 year old twin girls n one of them keeps sayin mum u shouldnt be doin that u shud be restin and im sayin no im fine i be ok but really im thinkin omg i feel so ill but dont want the kids to know that xx :needhug:
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Re: Taking off my 'mask'

Postby loubie » Thu Mar 03, 2011 8:52 am

jazzy :wave:

i think we all do it in one way or another, because we have always been strong and just got on with
every thing.
i don't hide it from my kids now, well they are all grown up and don't live at home but
when they come to see me if i am bad then i am bad, i don't have the energy to put
my face on for them anymore.

be yourself with the ones that are around you, i do think that is were we are all going wrong
with this, we hide it to much. :yikes: :yikes: :yikes: :hugs: :hugs: :hugs:
loubie xx

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Taking off my 'mask'

Postby MonkeyFeatures » Thu Mar 03, 2011 9:20 am

Thanks guys, it's good to know I'm not alone. It's in a way like I've had to learn to be myself instead of acting!

I've also found it hard to ,take my mask off' to the health professionals which is something I need to do if they're going to support me properly. My GP I'm ok with but anyone else I find the "yeh I'm fine" coming out of my mouth before I even have chance to think!! x



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Re: Taking off my 'mask'

Postby nana » Fri Mar 04, 2011 9:35 pm

I can so empathise with all of the comments and replies on this thread!

Ive done the mask thing for so many years I think its glued on permanently!
:yikes:
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Re: Taking off my 'mask'

Postby supersha » Tue May 24, 2011 5:31 pm

Hi everyone!
Im new to the site and new to fm, well, just diagnosed and iv felt like such a Hypochondriac for years that iv got used to saying "yeah im fine" when im far from it! But reading so many of the posts have made me realise im not alone! Im seeing my G.P next week to start me on meds and I should be starting physio soon as well, after reading lots I realise im not going to get a cure but at least I dont feel like im going mental anymore :) Maybe now il be able to take my mask off now and again.
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Taking off my 'mask'

Postby MonkeyFeatures » Tue May 24, 2011 6:44 pm



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