Fed up: It would be really nice just... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Fed up

Annleea profile image
7 Replies

It would be really nice just for one day for some one (my so called friends near where I live ) just to ask how I am, but no, people really don't give a crap fibromyalgia might as well not exsist in might, woke up feeling really crap today just want to sleep all day!!!! Does having fibromyalgia mean nothing!!! Sorry guys but I've never felt this alone in all my life!!!!!

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Annleea profile image
Annleea
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7 Replies

yre not alone you have all of us on here.but yep i d feel lonely all time and i have my best mate with me and friends but they live away.my family dont understand and never ask me how im doing?

its a illness you cant really see so they dont get it.i have m.e too and am sick of posters up in flat and talking baout it.#

they just stare at you and move on .im sorry but things will get better .ive been told to find a hobby so im back to learning again and trying to just stay postive which is hard..

were all going through same thing.

give yre mates leaflets from here or posters,tell them how you feel about being ignored and it would be nice if they nipped round once in a while...

or get new friends..x

Dixiesdaughter profile image
Dixiesdaughter

Hi there just wanted to say hi and let ya know your def not alone in how your thinking or feeling, im sure everyone on here has felt isolated fed up ignored and alone at some point in their fight with fibro. Getting people to understand and empthaise with our 'hidden' health condition is an uphill battle nd as a result we often feel misjudged and looked down upon. Here on this site you are among friends, people who not only understand but share your pain symptoms and frustrations, please call on us when your feeling low we will support sympathise laugh and cry alongside you because were your fibro friends. Take care stay positive and keep fighting im praying that your friends eyes may be open to your reality soon xxx

marzy profile image
marzy

Hi.

Its so true. If you mention it you almost feel like apologising for saying anything as there seems to be a total lack of understanding towards it. I gave my office leaflets to read so they had some idea what it was about. Dont get me wrong, I am glad that friends and colleagues still greet me the same/treat me the same but sometimes on sore difficult days they can seem remote and impatient if I am not my usual efficient self (well used to be a lot better before fibro took over my head).

At least on this forum we can moan and let off steam and enjoy listening to the good stuff other do.

Hope your weekend improves and look after yourself :)

x

I think that when we are ill we inevitably have to slow down our lives a bit to cope. Unfortunately it is hard for other people to adjust to us not being what we used to be and we get left behind. We can try to keep up with them but perhaps we are just better off finding new friends who also have to pace themselves and live life in the slow lane. Can I suggest that you look for a local support group to join? You could also look on this forum to see if anybody here lives near you. They might welcome the chance to meet up for a chat and a bit of fun, particularly if you have some joint interests. Wish your old friends well and move on to find new ones who are worthy of your company. Life is full of opportunities but it is up to us to look for them and sometimes kick open the door! Good luck...and remember that we are all here when you want to chat. Jane x

Bongowench profile image
Bongowench

This may seem wrong to fellow sufferers but I learnt a long time ago that people do care but don't really want to ask about your health because with Fibro it never gets better so what can they say.

There's nothing they can say or do to take away the pain and sheer inconvenience of Fibro so, like most people are with the physically disabled, they tend to ignore it.

Someone with a cold, or a broken bone will get better, Fibro sufferers don't, they just have good days and bad days.

Personally I prefer it if my friends ignore my problems. I am still me even if I suffer and can no longer do some of the things I did in days gone by.

My friends always ask me how I'm doing now because I don't tell them. They know by how I get up or walk if today is a good day or a bad day and being true friends they do what they can to help without being asked or taking away my independence

I have learnt that everything in this life must be paid for whether with money, time or pain. so I do my best to enjoy every minute that is pain free. A bottle of wine will enable me to go out with the girls and dance, next day I cant walk but I spend my pain-time remembering the fun I had. I look it that its a bit like going out and spending all your money on a good night and then being broke for the rest of the week, so spend your good days having fun and accept the pain as the payment for those times.

PLEASE don't frighten your friends away by moaning about your pain all the time. Do the best you can with a smile and greet those friends with pleasure, ask them about their days and the things they do and they will respond by helping you when you need it.

Sad people are not fun to be with, concentrate on getting the most fun you can out of each day and your friends will be there to share your fun and you'll find your pain less when you concentrate on other things

Don't let this problem rule your life xx

Ginsing profile image
Ginsing

Morning

I often feel like this and it is so true they do not ask how you are ( well it would be boring same answer). But it would be so nice I have one very old friend who constantly pours her heart out about her health her activities how many people are coming to stay where she is going and then just at the end of the phone call when my sounding board is tired she say "Oh and How are you" to late "I am fine" well it embarases her to know the truth so I don't burden her.

Having fun for me now is a stimulating new group I have joined once a week , they know I am poorley but we don't talk about it . We just have a giggle about life. :) I enjoy listening to them it is something I have never known infact a way of life I am learning about. We make things handy crafts or not as the fancy takes us :) xgins

sue57 profile image
sue57

Oh, oh, oh, how true!! I think a lot of people don't really understand Fibro whatsoever. I use the spoon theory a lot. It really does bring home to people just what we have to put up with each and every day. When I tell people I have Fibro they just stare at me with the 'but you look fine' stare! I may look fine but, believe me, I'm NOT!!

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