She says if I had Fibro I would never be able to manage to work full time.
No one but me knows what its costs me to get up at 6am every weekday and go to work. I often sit in the toilets at work and just cry with pain and/or frustration. The simple fact is I cant afford not to work. I cant survive on benefits. I have to keep going for myself and my husband. But it costs me. Normal people enjoy a long bank holiday weekend - go out and about etc. I have slept for most of mine as I am just exhausted and I am dreading going back to work tomorrow.
I am tired, stiff and in pain but I will get up in the morning and go to work because I have to and even though I will struggle I will get through the day even if it feels like its killing me. What choice is there?
Am just upset to be judged in this way by someone who should know better.
Sorry, rant over!
Written by
catleigh
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yes who ever said this to you should know better ,
does that meen i dont have it either ,i may not get paid for my job ,but i work really hard ,iam a mother of 5 children ,there is no one else to do my job !
so i like you drag myself out of bed at 6am every morning ,because i have to ,
i have to do the school run ,i have to do the cleaning ,washing etc etc ,and i cry in pain and in frustration too ,but you can assure your friend that i do have fibro !
so you should rant hun ,what an unbelievable shortminded thing to say ,lots of people work on this site so tell her to join and then she can see for herself
Hi Katleigh, How wrong that someone has said this to you. Theres alot of people on here that work. Just like theres alot on here that dont. I give my Son a lift to college, and have to drag my self out of bed. Thank god he doesn't go every day.
You have your rant hun. And also if i were you, id tell the person to come on here. So they can educate them self. Because this person clearly has no idea.
hi and just to let you know how much i admire you xxx
Sadly some of us have little choice but to work. I work full time as a social social worker......very stressful..but you just have to get on with it. I too sit at my desk with chronic pain in my legs wishing I was at home. I had to take a year of work last year I was so ill and it was terrible I felt like I had totally lost my place in society.
I have friends who glaze over if i talk about fibro, my husband is the only one who really knows what its like for me. I have grown a very thick skin. We have enough to think about everyday just to get through it without worrying about other ignorant small minded people.
here here, i work a 45 hour week in a manual job i too find myself hiding in the toilets and living on painkillers that i would rather not be taking i have very good friends in work that cover me when i am slacking i sleep through my lunch hour and would like to pack it all in but in reality we need to keep fighting if we give up we wont have a life. who ever said this to you is well out of order it would be nice if sometimes they could spend 24 hours in our shoes. i bet they could not manage 12.
I'm genuinely appalled - as if the world in general aren't ignorant enough without fellow sufferers feeding the ignorance. I work full time too and know exactly what you go through. There have been afternoons where I've just burst into tears at my desk as my shoulders scream out in pain. I'm very lucky in that my employers have made reasonable adjustment, I work flexi time, I have a disabled car parking space and I also have a laptop that lets me connect from home when I'm too bad to drive. Without these things I genuinely don't know how I would cope and I take my hat off to you for doing so. xx
Hi Catleigh, I admire you greatly that you are still able to go to work, so you RANT all you want!! & how dare that person say you dont have FM they should try it for just 1 day. All of us on here know how you feel & we fight it every day & sometimes we cry & sometimes we do need to rant, I'm 20 yrs down the line & wished there had been this such support then!! xx
When you come to the end of your rope, tie a knot and hang on. "
~ Franklin D. Roosevelt
Hang onto that knot Catleigh and slowly you will climb back up the rope again. I know its difficult when you feel so awful, but I've found the only way to deal with these sort of people is to rise above it. Keep calm, simply smile at her and don't answer back. If she sees shes getting to you she will keep on. Then one day when youve given it some thought and know exactly what you want to say and when she's least expecting it, you can have your say to her.
I hope you feel better after a rest at the weekend, but the main thing is dont worry about it, say to yourself that she will not get to you, you know what you have got and how much it affects you, you are right. Concentrate of yourself and don't let her suck the energy out of you. You need every bit for YOU. Good luck and keep in touch via this Forum Love and big hugs Lizzie xxx
but what i will say is she has not got it she thinks she has for if she did have it she would now that is the one thing you never say
we all have things we have to do that meens we are in pain and exorsted . but you will fined that this person will be somone who playes on it and she has a daft hubby who belives it
she is also somone who gives the real fb people a bad name
and i take my hat of to you i am the person who would love to go to work but no i am not abel
and i am very very looky i have a husband who has a jobe that means i don't have to but YOU ARE SO BRAVE AND STRONG so if she was a freind then stop being one to here you keep being strong for you and your husband
and doing what you have to do to live be strong and i am sending you love and any streghth i can send to you and your husband and if i could send profanitys on the site then i would you go girl soft hugs and you come on here and rant to us when ever kathxxxx
Hi Catleigh, maybe ou should direct that person to this site so they can read everyones blogs to see you are just putting on a tough exteria to get you through each day as we all know, plus you are amounst TRUE FRIENDS here
Wow - thank you so much for taking the time to not only read my rant but to reply and offer so much good advice and support I really appreciate it more than I can say so thank you very much
Im ok - feeling much better than I did thanks to you guys
This place is wonderful for support - you all inspire me so much so again, thank you xx
Hi Catleigh, you echo everything I used to say and do when I was working, I slept to go to work to get money to pay bills to come home to go back to bed and then it starts all over again. In the end I was off on sick leave for so long I eventually had to give up work. It has been hard, especially having to fight the benefit system but at least now I dont have so much of a struggle. I really felt life was passing me by and although I dont have a very exciting life now at least if I do go out it is with the knowledge that tomorrow I dont have to get up at some ungodly hour and push myself for 8 hours plus in so much pain and under so much stress.
You have already been given loads of good advice here but please do go and discuss this with your GP as there is things they can do for help.
As for the person that is telling you this, maybe they are not as bad as you and have given up work and now feel guilty when they see you trying to struggle on. I think I would be avoiding this person where possible as you don't really need their feedback.
Take care of yourself and don't be upset, you have a lot of support on here and can always send any one of us a personal message if you need to. Keep in touch and let us know how you are getting on, and also let us know if you need help.Love Angela xx
Hi whoever said that seems very ignorant to fibromyalgia and bsefore they say flippant comments like that they should read up on it and really study all the literature on it i think then they would praise you up so much i commend you for working i think it is arvellous that you manage to get yourself to work every day and struggle through like you ay the price you pay for that is no life when you get home bless you i would just ignore that ignorant pwrson and i hope one day they dont end up with it or someone close to them as they will be looking at you very sheepishly love to you and give youraelf a big hug and a pat on the back you are truely an inspiration for what you do and deserve to be recognised
It is appauling but not uncommon I think. People may believe it when it suits them. I no people that are sympathetic one minute then almost forget the next. I have cut my hours at work from 5 days to 4 but we're struggling with money even now. (mind you I am on min wage to start with!). I am off to a tribunal hearing in the courthouse this morning and feeling very scared as I can walk unaided etc, dont think I will get it! But when I talk to people about getting a little bit of benefit thats when they all of a sudden forget and don't agree with me getting it!
I think it is just such an unfair illness as we are so variable day to day and some of thoses days we cover up well and other days we dont. I just wish I was braver to talk about it more but as somebody at work asked me if I was suffering as a so called joke 'hypochondia syndrome' this has put me off!
Sorry but now I'm having a mini rant!!
Hope we all have a good day 'soldiering on' in what ever we do!
Sharon thats awful Some joke - not. I am not surprised it has put you off.
Thank you all so much for your support - I feel so much better than I did about all this so thank you xx
I am at a loss for words, apart from I agree with what everyone has said.
I admire you for continuing to work and can only just imagine how you are feeling.
Jobs are so scarce these days you need to hang on for as long as you possibly can. my heart goes out to you and this 'other' person' should be ashamed of what they said to you. xx (((hugs)))
I work almost a full week and have four young children...there are days (like today) where it hurts to type/walk/smile and there are days where all I have is a headache.
I can't afford not to work, there is no way I would get disability because there are so many things I can do myself (on a good day!) so I have to struggle on.
People like this other person should be ashamed and should know better than judging people by what they see on the outside.
Dont let these comments get you down. Many of us as you can see also have to go to work and manage. I work full time. It takes me one and a half hours travelling each way to work every day and when I get there I am exhausted. Then I put in a full days work and travel home...exhausting! But we do it cos we have to...I have a mortgage which will not get paid if I do not work. Many can work, many can't...we shouldn't judge each other, we should support each other. Are you sure your friend has fibro????? If so, get her to come on this site and pick up a few tips.
We all have to do things that hurt sometimes. As I've tried to get across to a lot of people (including at 2 tribunals!) just because we do things doesn't mean it's not without struggle and a lot of pain. I live on my own so do struggle to do things and suffer for it. But there are some things you have to just get on with. Gentle hugs, Val x
i thought i was the only one hiding & sleeping in the toilets, i held 5 partime jobs just 2 have a break in between.. it was horrible i finally gave up work;; i dont think my doctors take any notice of me, i have been signed off incapacity benefit .. got my tribunal next week dont know what 2 expect,, i know a friend of mine was at theirs for 2 hrs and was totally drained with their questioning
i had 2 finish work as i was working on auto pilot, & was putting my self & others in danger. i just wish some could walk a day in our shoes xxx
I've been there too guys! Fight for better treatment and support so you can keep working without it being a nightmare.
Hi Catleigh
I know where you're coming from. You're friend isn't much of a friend to say that. I worked in a full-time job and travelled 20 hours a week to get there. I came in on a Friday night and stayed in bed until Monday morning. I eventually left my job because it required more brain than I had left and I was sick of a bullying manager. I subsequently had my home repossessed, lost everything I had worked 30 years for. That is the choice you face when you have fibro so I understand that you have no choice. I often question the choice I made.
I'll be thinking of you today when you are no doubt back at work. Sending gentle hugs xxx
Well just thought I would let you no that I am back from the tribunal and was right, I didn't get it! I felt quite intimidated actually, but that didn't suprise me either as the posts on here have said what its like. I don't think anyone should be put off going for it though. I think I will put in a new claim though in a few weeks. I would like to no how many people do get it for fibro, not many I guess?
At least we can all sympathise with each other on here without getting inflammitary remarks!
I wish that all the people that have to make these decisions about us could just have what we have for a month of their lives and maybe just maybe we would have different decisions!!
hi wouldnt it be great if all of us could just stop hen the pain hits but im sure majority of us have had to just get on with out any consideration for ourselfs as mothers wifes and full and part time workers i do feel for you hun and your friend should no better than to judge you i think you need to revise your list of friends and supporters as this person obviously doesnt have your best interests and to be honest with you hun you dont need ppl like that in your life stressing you out any more than you already are oh and you need to ask her when she got her doctorate and as allowed to asses ppl and diagnose lol
You are right - I do need to revise my list of supporters. A true friend would not have said this to me.
I think everyone on here does a stirling job just in getting up each day despite all the pain, brain fog and depression etc People on here are a constant inspiration to me xx
Hi Katleigh sorry just read your blog and wanted to say people are quick to judge, I really really wanted to go back to my job, but because of the nature of it my GP deemed that I was unable to. I grieved that I was unable to return, and I have a huge amount of respect for your battling everyday.
Soft Hugs to you x x x xx
Awwwww bless you whoever said this to you doesn't know what they are talking about!!! I so know where you are coming from,i myself cannot afford not to work etc etc i am going back next week after being signed off for 5x weeks due to exhaustion,the rest has been wonderful but back to reality next week and like you any days off etc will most probably be spent trying to recover from being on the go non stop! As hard as it is take no notice of this silly person,friends are supposed to support one another and uplift each other through good and difficult times,some people are just misinformed and too quick to judge!! Please look after yourself,sounds like a holiday is in order for you,gentle hugs sent your way xxxxx
i am so angry reading that post i was told that i cant be that bad as i work full time. But they do not see the pain i to have cried at my desk with pain and exhaustion. when we can work we are lucky, one day i know i will have to fight the evil dragon of the dhs, so take no notice of theses people they are poorly misinformed, an our on this page is all they need. xxxx
I don't have any friends anymore, I was fed up to the back teeth of them suggesting "I'm Lazy" when I was too tired or ill to go out clubbing with them, I told them many time there was something not right with me but they just kept saying lazyness because I slept so much on my days off, I worked all my life, They didn't they we're all stay at home mums on benefits, I had a mortgage and couldnt give up work and live on benefits so I struggled on with a full time day job and a part time evening job just to pay the bills.
Did you say this friend has fibro too? If thats what you mean't she needs to come on here and tell all the other women/men who still work that they don't have it, is she a doctor? we are all different and suffer differently, I've had fibro and m.e for at least 20 years, I lived a normalish life through my 20's even though I had pain and tiredness.
Then in my 30's it became progressively worse and I gave up my evening job and just worked the full time one which helped a bit but by time I was 36 I couldn't work anymore, my body just gave up, I made a choice to give up work as it was a very manual job and I suffered badly, I did try a few part time jobs afterwards but just couldn't do it anymore, it was a choice between my health and money, I chose my health, I don't miss my friends they let me down when I needed them and can do without comments like that in my life, your friend should be ashamed of herself, especially that she has fibro too, she of all people should know the ignorance toward people with this illness.
Its not easy living a normal life with this illness and just because you can work doesn't mean you haven't got fibro, just ignore her silly little comments, my cousin had cancer does that mean because she worked through it, she didn't have it? lol pfffttt! she sounds like an idiot to me and you should just let comments like that go over your head, people like that you can do without in your life.
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Some joke - not. I am not surprised it has put you off.
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