more of a rant but.. ignorant people

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Re: more of a rant but.. ignorant people

Postby dazzleship » Sun Sep 07, 2014 9:22 am

kayhealey wrote:Does anyone else ever get the comment about looking well so you must be feeling fantastic? And is anyone else sensitive to odors,
dyes and other chemicals? I hope to get answers back from YOU. I wonder if this is related to FM or something else.
Sorry I wrote a book today! I haven't had anyone to talk to all day!!


I sometimes get a variation of this at work which is just as annoying. I'll be sitting there in abject pain trying desperately just to get through the day before my brain stops working, and someone will say "you look like you've been doing better lately". :shock: :-x

what the heck? do I look better on the outside when I'm feeling rubbish inside?

and I totally get what you mean kay about dressing up. of course we always try to do our best to look at least half decent when we go out anywhere, that's only natural. doesn't mean it didn't completely wipe us out to get looking that way.


as for chemical sensitivity.. well. several years ago (a few years before my fibro diagnosis) I had a bad bout of sinusitis and shortly afterwards discovered (when I reacted badly to painkillers for my hip) that I can no longer take aspririn or ibuprofen, anything like that. I was never allergic to them before but now I can't take them.

(that may or may not be why I can't handle most fibro painkillers)

the sinus problems have continued and I now find they are made worse by eating certain foods (I was told I could have a salicylate intolerance so I have to watch what foods I eat, but recent self-experimentation has found that it might be things with wheat in that make my nose worse).

as for being sensitive to other chemicals - well its a long time since I've been able to smell anything :-? but last time I did have a sense of smell, I would sneeze terribly around strong perfumey-type smells. :roll:
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Re: more of a rant but.. ignorant people

Postby *Lisa* » Sun Sep 07, 2014 12:22 pm

This is not about toilets but changing rooms!

I have not long had an operation and mum took me out as i needed some fresh air and ended up at a supermarket. With my mum by my side i was able and confident to potter around a little and looked at the clothes. I saw some bits but needed to try them on.

There was a disabled changing room available but no others and there was a que. With needing mums help to get dressed/undressed from the surgery we walked passed and went in.. well the stares and digusting looks and sneers were unreal!! :yikes: I felt so embaressed i said to mum im getting out of here :penguin: :penguin: mum said nooo way!! :nono: if they wanna say something then let them as im ready for them! :oops: :oops: so with that we continued...

Just makes me annoyed that we have to go through such ordeal :evil:
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: more of a rant but.. ignorant people

Postby dazzleship » Sun Sep 07, 2014 1:08 pm

lisa how terrible for you. just yet another example of how ignorant people can be :evil: towards people that don't look "traditionally disabled" aka in a wheelchair.

i wonder if that's it - most disabled signs etc depict a wheelchair icon, I wonder if somehow some people can only associate disability with a wheelchair, so anyone not in one must not be disabled :-|

well done to your mum for encouraging you to stay though - I must admit I would have been as upset as you.
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Re: more of a rant but.. ignorant people

Postby rich44 » Sun Sep 07, 2014 1:34 pm

That's exactly it no wheelchair = no illness in a lot of people's minds. Just getting to the point where I'm going to use one out of spite, I can walk a fair bit.

I'm glad tax discs are going because they're another way of identifying you. A neighbour goes round picking out the motability cars because "they get free cars & insurance etc" I said no they don't they surrender their DLA money which PAYS for the car it's not free. He gets a huff over every car under 3 years old with disabled nil tax disc.

Miserable old git he is, pardon my French
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Re: more of a rant but.. ignorant people

Postby MPSGuy » Sun Sep 07, 2014 4:26 pm

I often use the disabled facilities if possible. I have a bit of 'toilet anxiety' and I often just cannot physically go if I'm in a busy mens room and someone comes into the cubicle next door, sometimes it is so bad I even involuntarily stop mid steam. As for using the urinals, no chance. Also a number 2 is to be avoided at all cost in public toilets.

I prefer the additional privacy of the disabled loos or even the mother and baby rooms offer, plus they are usually cleaner which is a bonus.

I might feel mildly embarrassed if someone obviously physically disabled was waiting when I left the toilet, apart from that I don't care what others think. So many disabilities are 'hidden' that people really should not judge who is 'disabled' based on looks anyway.
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Re: more of a rant but.. ignorant people

Postby Libby Clark » Mon Sep 08, 2014 12:24 am

Oooohhh I so understand, quite recently i was at Meadowhall shopping centre with my daughters, I walk with one or two crutches or have the baby buggy to use like a walker if my young grandson is with us. I am very wobbly and have the bruises to prove it!

I used the disabled loo and my daughters waited outside with the buggy and little one.
As I came out a young woman in a wheelchair was also waiting to use the loo, she took one loo at me and said in a very loud voice, that's a disabled toilet not for fat old grandmas who can't be arsed to walk another ten steps!

I was stunned, felt very embarrassed and dint quite know what to say, I have chronic degenerative disc disease as well as FM so I do really struggle to get around, we were only visiting two shops to get shoes for my grandson and pick up something from the apple store for my husband,otherwise I would have also been in a wheelchair.

Before I could think what to say, my eldest daughter spoke up, For you information my mother is disabled, the fact that she is not in a wheelchair means she can't sit down to do everything like you and so those ten steps make a difference. Now shut it!
Still stunned this was then added to by another young woman in passing, who said, ignore her love she is one of those disabled people who think the world owes her, she should be more like you, get her hair done, get her makeup on and some tidy clothes and stop feeling so sorry for herself, have a nice day ladies.

I just walked off pushing the buggy shaking my head and giggling at the same time, being a crip can be very funny sometimes. :-D
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Re: more of a rant but.. ignorant people

Postby dazzleship » Mon Sep 08, 2014 7:24 am

ohh Libby that's just awful :shock: the more and more of these stories I read on here I just can't believe how rude other people are :evil:

well done to your daughter and that other woman though, hopefully they put the wheelchair woman in her place.

I really don't know how we all can cope with these kind of people though. it makes me so sad.
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Re: more of a rant but.. ignorant people

Postby Zia2014 » Mon Sep 08, 2014 5:18 pm

Oh this is all so familiar sadly!! This thread really proves the saying "invisible illness" :(

I use the normal loos at the moment but often find they are really hard to get in and out of, I don't know why they think all woman are 8 stone with no hips and bum :roll: I wouldn't hesitate to use a disabled loo especially if the normal ones are upstairs, but I've never had anyone say anything to me. I'm the sort of person who doesn't say anything at the time but maybe I should start.

And yes I had the "you look well" comment - from my GP!!!! :lol: For crying out loud!

Libby, your daughter sounds bloody fantastic! :mrgreen:
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Re: more of a rant but.. ignorant people

Postby rich44 » Mon Sep 08, 2014 5:45 pm

You can tell how well I'm feeling by the length of the stubble as shaving is the first thing to go when I'm bad.

Although I'm not sure I should go around inspecting ladies legs in a similar fashion ;)
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Re: more of a rant but.. ignorant people

Postby Libby Clark » Mon Sep 08, 2014 8:01 pm

My girls are awesome and to be honest I wouldn't go far if it wasn't for them nagging me. I am very lucky that they support me as much as they do, as does my husband, but I am sure sometimes he thinks I am just being lazy..
Today has been a sofa day because I have do e too much the last few days to get things I wanted to do sorted.
Today he has emptied the coat cupboard, lined all my shoes and bags up on the lounge sofa and filled the sitting room two seater sofa with my coats and jackets, I. The vain hope of inspiring me to sort them out.

My answer to that in my head is you can bo@?!£&ks

Some days it's just not worth it, pick your fights Libby cos this is one you cannot win!

Oh well tomorrow is another day :-?
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Re: more of a rant but.. ignorant people

Postby Queenie_70 » Mon Sep 08, 2014 9:28 pm

Being disabled comes in all shapes and sizes.

My daughter who passed away when she was five, was in a modified stroller as she could never walk. I parked in a disabled bay and was told in no uncertain terms that a veteran should park there because they had more right. I explained that my terminally ill daughter would thank the veteran for his service if she could, but as she never learned to talk, walk, or would have the life expectancy his friend has had, I will park where the hell I liked to get her around.

Some people think that they are "more" disabled than others. It is not a contest. We all bear a burden whether visible, or for those like us, invisible....

Gentle hugs and hold your heads high, you are all amazing!
"Life is not measured by the breaths we take, but by the moments that take our breath away."
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Re: more of a rant but.. ignorant people

Postby Zia2014 » Thu Sep 11, 2014 5:20 pm

Oh wow Queenie that is so rude and heartless :( Good for you for replying, I bet they would think twice about saying anything in future.

((hugs))
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Re: more of a rant but.. ignorant people

Postby kayhealey » Thu Sep 11, 2014 8:33 pm

Thank you dazzleship! So good to have someone reply to my posts. I am new and need to make friends here, but don't know how to do it. I appreciate your answering very much. My husband still doesn't really get FM (kind of suspects it is a ploy to get out of doing stuff, which makes me furious b/c i would really.love to give my condo a clean) and when I'm coming out of a flare, as i am right now, expects me to go full steam ahead--did you.do this, did you do that, etc. and sometimes it is easier to go ahead and empty the dryer and fold the clothes and put them away when I know it will set me back, than to try to explain for the millionth time and watch him roll his eyes and/or pile clothes in hamper so they are all wrinkled and I have to iron--no way!!or start all over again. Anyway long way of saying thanks for understanding and being a FM friend! <3. <3. <
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Re: more of a rant but.. ignorant people

Postby Zia2014 » Fri Sep 12, 2014 10:08 am

Hi Kay,

I know what you mean, I joined recently too and it's a lovely community where people really understand you :-)

My partner has always thought I'm lazy (and to be completely honest, I am!) but when I first had symptoms he was often doing this :roll: :nono: at me! He genuinely thought I was overreacting, but now he has seen me in bed, going through dozens of tests and nearly falling over I think he gets it a bit more.

There is a wonderful story on here called the spoon theory, and I told him a version of it. That really helped him. Hang on I'll find it...
http://www.butyoudontlooksick.com/navig ... Theory.pdf

Let him read that and see if it helps.

Whereabouts are you by the way? Do you have a local support group?
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Re: more of a rant but.. ignorant people

Postby dazzleship » Fri Sep 12, 2014 12:21 pm

Kay and Zia - I'm so sorry you don't have supportive partners to help you with the Fibro. All I can offer you is hugs I'm afraid :hugs: :hugs:

I consider myself very lucky to have a wonderful husband who is constantly supporting me and helping me and never once has he said anything bad to me. I really couldn't manage without him.

The only thing he struggles with of course is really understanding what it feels like to have Fibro - and that's hardly his fault because how can he know.
So one thing that I did the other day to try and get him to understand that, is I gave him my crutches (adjusted for his taller height of course :lol: ) and got him to walk around the house, try and pick things up whilst using them, etc. He realised how hard it was.

Then I said 'now try going upstairs like I do'. (which is basically hold the banister with one hand, and use one crutch in the other hand. it takes me forever if I'm having a really bad day).

Well, he did it, and straight away he said "that was really difficult!".

And you know what? That one simple sentence brought tears to my eyes cos I knew that then he had a much better understanding of what it is like for me.

So.. I don't know if a similar thing you can get your partners to do? They can't have the pain and fatigue etc of course, but if they get a taste of what it is to move about like you do, etc, perhaps they'll start to be more understanding?
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