a rant..because i have to..

[underscorehashtag]

So a few days ago I was sat on a train,staring blankly out of the window trying to read the graffiti on the walls and bridges anything really to take my mind off the pain and block out the constant chattering of the many on their mobiles. I sank into my seat and attempted to close my eyes,perhaps I thought I could grab a few hours sleep (sleep- now there's a joke I honestly cant remember the last time I didn't have to swallow tablets to sleep more than two hours-anyway I digress) when I heard a word that like a scream in a pitch dark forest had me alert and shaking..the word dear reader was..."fibromyalgia" So whats so bad about that I hear you ask..well its this..(for the purposes of this I shall call the two people involved Ethel and Doris..

Ethel "what?"

Doris "fibromyalgia"

Ethel "an whats that?"

Doris "its what Agnes has got and how she got her PIP"

Ethel "never heard of it"

Doris "its a thing you get aches and tired a lot"

Ethel "and the doctor tested her and found it..like cancer then?"

Doris "that's the thing they cant test just say you got it and put in for PIP"

At this point I was ready to explode,i grabbed my bag unzipped it and emptied Neurontin loperimide fluoxetine zopiclone co codamol and 3 inhalers (ok inhalers are unrelated but they were in the bag) onto the seat next to me I then said (in my outdoor voice) "there are people out there who really suffer from that illness,who aren't pretending,who aren't looking for sympathy or to sit on their fat lazy backsides,i for example take 21 tablets a day plus 3 inhalers (update I'm now taking a duoresp spiromax powder inhaler along with the two I was already on) and I'm far from the worst case in fact I count myself lucky as I don't suffer as much as some" Anyway they both looked sheepishly at each other and never said a word the rest of the journey . I was so angry I barely noticed the other passengers or indeed the silence that fell over the carriage..even relating this story has made me angry..so damn angry

Ill be honest,i don't know why I felt the need to tell this,it just made me so mad..here we are genuinely suffering,struggling daily and there are anuses claiming they...

sorry I'm just so angry now...I got to go before I get banned

have a great week everyone

last words well done FC Barcelona awesome match and don't forget to vote in June folks (I may or may not be back by then only Smarties have the answer)

[rosewine]

Well I for one think your action was fabulous and brave. If we had a broken arm we would have every sympathy but because the illness doesn't show up on some graph so many people think it is something that we have dreamt up to get a benefit. I often say to my OH that I would give up everything house money the lot just to be well. It is such a strange illness with no day or even hour being the same with the effect it has on us.

I should be at a lovely meeting of the local Gardener's Guild but because I had to go to the dentist and do a tiny bit of shopping that is me done for the day so I am propped up on the bed with barely the energy to get in my jim jams. I know what you mean about the pills I feel rather embarassed that the chemist has to put mine in a large carrier bag. Oh the fun of life in the fast lane.

Sorry I am a Real Madrid person myself,lol. Take care.x

[Hidden in reply to rosewine]

Yes, and the real issue is, I think, that even with something like RD, it doesn't "look like" the person is sick, and the tests are somewhat iffy to "prove" that someone has it.

The problem is that FM is totally experiential with some hands examination on that is not recommended in a physician office setting. It is considered too subjective unless the practioner is well trained. (My doc mailed me a 23 page document with everything you would want to know about FM) There are no tests to point to. Sucks. It seems like there should be some way to measure pain realistically...

[bluebell99]

Good for you in standing up against the ignorant and biased, who have obviously never suffered an illness like ours.

It is unbelievable that some people can think you can make up any illness and get PIP. I don't know anyone on our forum who has been able to claim any benefits without a fight, and even then the rate of success is not guaranteed.

Angry? Mad? I am right there with you.

X

[Dizzytwo]

I have to say well done you not just for your bravery for standing up for all who have fibro. But I have to applaud the fact your still out of police custody How did you keep from knocking their heads together lol

Mo

[Dinkie]

United we stand - divided we fall. I'm all for educating the uninformed - perhaps they will think twice about opening their mouths and discussing something they know nothing about. Ignorance is no excuse. Good on you for standing up for us all.

[hebden]

Well done you for speaking up for all of us fibromites. You may have even made them want to learn more. gentle hugs Joolz.xx

[biffbrain]

Well done !! It's bad enough to actually have the weirdest illness going why people would pretend to have it is beyond me. Ur so right to angry too.

[TheAuthor]

Hi underscorehashtag

Well done my friend, you should be very, very pleased with yourself.

All my hopes and dreams for you

Ken

[underscorehashtag]

thanks guys and girls I've managed (just) to calm down xx ps rosewine nobodys perfect haha xx

[Midori]

Great reaction.made them think (if only for a little time!) Good on you!

[Fallabella]

Well done you! That was courageous. I'm not surprised you were angry. It's people like them that give us a bad name and make it so hard to be able to claim any benefits or be believed by anyone. Thank you for what you did. You're a super star ⭐️

[Angelseven]

Well done you! I can't really add any more to the above - it was brave of you - at least the aforementioned ladies did't react in a bad way and give you abuse

[Shazzzy]

Brilliant, you probably educated the whole carriage. You now receive my Medal of the week for Bravery in the face of Fibro !!

[Hidden]

i'd have been flipping angry too and probably done something similar to you- as others have stated why on earth do they think that someone can make up an illness and get PIP or why would they even want to? if i could be rid of my fibro i would get rid of it in an instant but unlucky for me it is a real thing and we're all in very real pain from it. the ignorance of others is sometimes so bad it makes me really angry.

[Hidden in reply to Hidden]

I suspect "Ethel" and "Doris" have the idea that they could get PIP and not have to deal with the pain and fatigue, so for some people that is enough reason.

[Hidden]

I'm so sorry that happened, and I give you major props for doing something about it. So much of the time I would have just looked the other way and fumed, so well done!