In society if you have something wrong with you which can't be seen then you are just plain lazy! ITS ALL IN YOUR HEAD.
...Really upsets me sometimes. I am far from lazy!
Try switching places with me for a day, feel my pain, feel my burn.
You think your life's hell. Well I'm burning in mine.
It will never stop, it will never go away.
Do people honestly think I wanted or asked for this?!
here here !!!!!
Absolutely agree. I work with kids 10 hours a day and it's really tiring. I was so hoping to not get a diagnosis of this but unfortunately it was.
So many people don't seem to have heard of it and those who have can't possibly understand it can they if they haven't felt the pain.
It;s true, the only person who understands FMS and how you feel is another person with FMS !!!!
Exactly Ebony. No one can understand the misery. just wish those rotters who sit on the tribunals had some of it. May have not lied about my tribunal saying i could walk easily into town in 2o mins,
I'm waiting for results of another attempt to get my DLA back. Some chance.
Couldn't agree more -I guess it's why they call it the invisible disease. I have a disabled car parking space at work but unless its a really bad day and people can see how badly I'm walking I constantly get the feeling people are watching and questioning why I should get a space! I sometimes wish people could experience what we feel for just one day of their lives, then they'd understand. x
Sorry guys, think back to before. Before we all had anything wrong how ignorant were we? Now we know, but think of all the times we thought someones backache was to get out of doing something? Think of all the times we have thought someone was on the scrounge who wasn't really deserving of that benefit, and think of all those people, us included that now have to really fight to prove we do!
I even spoke to someone being pushed around the supermarket and helpfully tried to suggest she use one of the stores scooters so she could choose where she went rather than being stuck in a corner - but she politely told me she was blind. She didn't have dark glasses and looked lovely in her fur coat, but I was guilty. I apologised.
Please don't be guilty of judging people - we are not in their heads. These people do not mean to be rude, unkind, nasty, to upset us - they do not know. That is not a crime.
Instead of being angry or upset, educate them politely. Make sure people around you know you hurt and why - don't moan or they will switch off; don't go on or again they will switch off. Maybe get some information posters and put them up around work, local shops etc.
Although it will still be hidden, it will become better known and understood. Be pro-active - use that anger you came here with and maybe feel about my preaching.
It has taken a while and another site connected with the USA has taught me a lot - at least we have the NHS - over there, they have to go without the medication because they cannot afford it, and they also have problems with doctors not knowing about it. We must fight to help ourselves and help those who cannot.
I hope your venting helped you. You are entitled to, I do too. But now you have, what are you going to do about it?
I was born with fibro and only know a world of pain. I have never thought this way.
This isn't a rant about all people. Just people I work with.
I did bring in hospital letters and booklets on Fibro and gave them to my DM, boss and other members of staff. They never bothered to read them and later found them in a bin.
I was told by my DM 'Your illness is your personal life, the company doesn't need to know about it'. They already knew I was slower than others and found some things difficult but was being given help anyway. So at the time didnt really matter.
What am I doing about it? Suing their bums for constructive dismissal and attending a grievance meeting this week. I have been trying to educate them and am currently fighting them with the help of USDAW for the way I have been treated. Telling me that the company will terminate my contact because they want someone without a illness, that CAN do everything isn't nice and really upsets me. Every day I fear for my job and they have already planned my replacement and have been training them behind my back.
I have been with the company over 5 years. As soon as I get a diagnoses they want rid of me.
After my diagnoses I received a complaint from my DM. He told me another member of management had complained that I wasn't pulling my weight. This person was cover management for the week as someone was off sick. I'd asked this person to help me move a heavy object and they refused and told me I was soft. My Dm demaned proof of illness, even when I told him and asked for help months ago, and sent me to see a company Doctor who confirmed my illness and gave a list of things I shouldn't be going. Since then my life has been made hell. After he got the report from the doctor I was dragged into the office and the dm said 'Right I've received your doctors report, you cant do this this and this. If you cant do these things I will have to terminate your contact'. Didn't even ask how I could be helped etc, wasnt bothered by the things I CAN do.
People are not interested in understanding. I am just an inconvenience.
Of course I really feel for people when they are in pain.
My deepest apologies Sloth, but you do see what I mean don't you? Because I did not know the full story and probably still don't, I judged you on what I did know and think.
I was unaware of how long you had suffered with FM or anything else and I should be more careful in what I say, but in some circumstances my words could be valid, just not for you.
You are going through a horrible unjustified time at work and I really feel for you. I sometimes think that this is what will happen to me eventually. Currently they are still at the 'show we are doing everything we can' stage that they use when they want to oust one of the naughty children from my school where I work. However I am planning on what I am going to do when this happens, including selling my house so we can survive on one income.
I will fight. I have to. It will not just be for myself, but for the other people at work. 3 have fallen on the stairs and now have permanent damage to their knees, none have sued. No one has ever tried that here. I hope I don't have to. Work were shocked when I got Access to Work involved. They did not expect that.
We have to fight for our rights. Its a shame, but its true. I wish you the very best of luck with your fight and hope you win, because you did everything you could to make sure they knew how things were for you. They should be ashamed of what they have done and are doing to you. They should also be ashamed of making you fight for your rights when you are ill and the fight could make you worse.
I wish you the very best of luck and in the meantime good health so you can win in more ways than one.
=) Soft hugs
Well said all of you , some very valid points , this site is so good to get different points of view.
Yes some great points made, we have to remember that this is an invisible disease and one that is not widely known about...although it is getting there.
It's hurtful when people are calling us lazy....I know...but it's also hard for people to understand what we have to go through.
Is FMS awareness day coming up?...maybe we could all go out and spread the word!
Some years back I had a bad accident and smashed my leg to pieces, (may have been the start of Fibro), I spent a lot of time in Hospital, five operations I think I had, over two years on crutches and attending outpatients. Eventually the plaster went and the crutches but a shame the pain did not go with them. The accident was in December 94 today and every day I still suffer the most unbearable pain with it. The point is the same people that gave sympathy, support, would have done anything for me who I thought were best friends and good family, because I don’t have anything visible now they brand me lazy and all the other things people on benefits get called. I will swap with them any day. Don’t let them get you down, most of them can’t see any further then page 3 of the Sun newspaper. That’s why it is good we can all support each other.
There are two theory's on Fibromyalgia, well this is what my Doctor told me.
One is that it is triggered off by trauma and stress, such as an accident. We all have a fibro gene, its just at what point its set off and triggered.
Two is that it is just genetic and we are born with it, its there, always there and its passed on. My doctor always told me I could have fibro but just kept trying other things first as she was one of these doctors that dont believe in it.
My gran had Fibrositis (the old name for Fibro), My mum has Fibro and I have Fibro. None of the men on her side or my brother have shown any signs, just us girls. Maybe all they need is some form of stress/trauma to trigger it.
Hi,
I have had a dx of fibro for 3 years, but had something wrong since a teenager.
I recently have had problems with my legs and balance, and was referd to a neuro and had an mri for MS, this came back clear.
When people thought i had MS they were so good with me, but when i told them it was not MS and the neuro believes its my fibro playing up, they changed. My motherinlaw says do you not think a little job will do you good, WHAT I AM STILL ILL. is what i want to shout.
I just wish if they had nowt better to say then dont say it. People have drove ne to tears with comments they dont need to make.
kel xxx
Sorry, what is dx of fibro?
I think many of us have been classified as hyperchondriacs for years because there are things building up to the diagnosis.
Hi Sarah,
Sorry dx of fibro means diagnosis of fibromyalgia.
I get carried away with myself and always write in text language without realizing hence i cant spell neither lol.
kel xxx
So your life sucks you say. I have not lived your shoes and nor do i want to. But i can tell you this, everyone has problems, and life sucks without friends. So let me ask you? Are you in for a friend, or a complainer
So, How are you?
Struggling with fibro fatigue -no support 
Discussion time
Happy to find people like me.......
