Ever experience folk comparing you to someone else who...

Posted , 7 users are following.

also has Fibro, and they say, 'well such n such has Fibro and they are fine, they just take it easy and take meds, and they are fine.'

??????

Is it just me that's gets a tad frustrated at the level of ignorance, (not their fault obviously as ignorance is bliss!)

I know I shouldn't get flustered and frustrated at such comments, but it just bugs me to the core some days and doesn't help.  Again it is that 'guilt' thing that creeps in.   Am I supposed to feel better or cured because of this other person, 'such n such' takes it easy and takes meds and they get on with life fine!...  

Well get on kind of well for 4 - 6 hrs maybe 1 day out of 7 months if I am lucky and I'd swear there wasn't much at all wrong with me, Till, later in the evening or the next day, BAM! Practically bed ridden or near to it, sleepness nights etc... ArrrrG!

I then have to try and educate them about folk getting symptoms in only 1 limb or 2 areas, some folk experiencing slightly less pain, burning what ever or mobility restrictions and about the remissions to very little or NO remissions...  Grrrrr  I then still get the feeling that they think your pulling their chain... This part of the living with the dam issue of Fibro gets me down as much as the complaint it self.   Sorry just having a dud few days and feeling a tad low on it.  With the head not wanting to give me a break, ears screaming, and body aching, thumping and muscles in my back and neck want to rip off my bones... grrrrr

When I get like this I cannot use wheat bags as they trigger a Volcanic heat erruption from head to toe...  I hate it.  so I try to keep physically a bit cooler to ward that off those heat flares... 

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19 Replies

  • Posted

    Appologies for my wee rant above... 
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    • Posted

      Don't be sorry Deb, it's a problem trying to explain things to people especially when they don't have much clue what you're on about, and I think all fibro sufferers have things at different levels even if we have some of the same symptoms and people don't always understand that.

      I hope you feel better after your rant 😊 and that you can find some rest for your mind.

      Take care

      Hugs

      Boqer

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    • Posted

      Hi and thank you Boqer..   Yes, just having a wee tantie rantie vent.  In the midst of a wee set back, and then some (again) voiced this similar comparison and it's again plagued me...  Hohummm  if only they knew, but I certainly wouldn't wish even a taste of this on anyone.  

      I'm actually going to take half a sleeping tablet even thought it's 5pm in the morning!  I haven't slept much at all for two days and it's getting me really peeved now.  

      So it's going to be a short day 'today' when I wake up...  I loathe this and it takes awhile to re-establish getting back to a decent sleep pattern.

      Thank you Boqer, take care to...  and Hugs

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  • Posted

    I agree some people just don't try to understand.

    We all feel your frustrations.

    I say to people don't pity me or sympathy with me just try and show a little understanding.

    Gently hugs Deb x

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  • Posted

    Hi deb this really annoys me I have a mother in law that says everyone is being dignoses with that theses days. She really does annoy me as what she's trying to say is your hypercondracted and what next is going to be wrong with you . I just wish ppl would understand by them making stupid comments like this doesn't help us or at least me it makes me worse and makes me feel so guilty for feeling like I do . Sending hugs x
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    • Posted

      Yes, I agree. I had never heard of fibro before I was diagnosed, but now I have found that there are a few people that I know who have it. I think a public campaign to bring awareness of the condition is way overdue.
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  • Posted

    Your rant actually helped as i sit reading at lunch. Im sorry but it feels so,good to know my feelings are a normal part of being ill. Im 58 and have Polymyalgia Rheumatica and Fibro. People just dont get it. A rare individual usually I find older people sometimes get it but otherwise we are very on our own for support and understanding.

    Joanne

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  • Posted

    No apologies needed. Anyone who suffers from chronic pain and fatigue for whatever reason is entitled to 'vent' occasionally! I have OA in spine and multi joints which causes similar problems but do I get an empathetic word now and then? frown  I wouldn't wish constant pain or tiredness on anyone but "BOY", I wish some folk had to deal with it especially some Docs who don't always believe what we do suffer 24/7 year in year out! Plus the depression which goes with it. cry I understand the volcanic heat eruption too, all this seems part of the illnesses we have. Best wishes and Carry on Ranting! lol Ellie X

     

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    • Posted

      I totally agree does us good to have a rant every now and then . I don't mean to be cruel but I just whish some ppl had to suffer like we do just for a week and then say to us you should think your self lucky you've not got so and so coz that really doesn't help when your having a bad day or in a flare up.
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  • Posted

    Hi Debbie I am only knew to fibro have had symptons for sometime but newly confirmed I no of 2 close people with it and we are all different but all have same symptons if you get my meaning and the heat well done t go there lol I'm out the bed most nights and then when you can get to sleep the heat and pain wake you up but I would nt listen to to many you know how you feel I'm having to educate my family on what it's like I am getting there but people look at you some times as if your doing it to suit the situation a very misunderstood condition hope you pick up soon if only short lived better than most x
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  • Posted

    Hi; Deb; whose to say, that "those people" did actually have Fibro....could be they think they have Fibro, and it could have been CFS, and as some people think "it's all the same thing"?????..........don't despair, as I have been having some Bad Days of anger too...........once again it's the same people who think/say "they know....blah blah blah".....but then go onto expect you to do ALL that you were capable of 20 years ago......."and oh, yes; we know you're getting worse, but......can you just do this for me?"......and yes B...Hell...................................know completely why I get Frustrated and Angry....................
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    • Posted

      hmmm  yeah sadkt, those bad days sometimes need not happen if some folk just tried to 'understand and respect the inflicted ones restrictions a tad more than 'not''.... lol...  

       

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  • Posted

    Hi deb97936 Dont appologise for having a rant, no appologies needed. your amongst friends on here and people that understand and feel the same too. I was angry a few weeks ago my mother in law knows 2 people that have fibro. her words to me were, the 1 person is working full tome and went to Australia for 2 weeks with her work has a family  the 2nd lady is a lot older drives herself around every where and helps in church runs meetings. so why cant I work full time and look after my family and home. on sinday she mentioned me working again. she made me feel so bad quilty that I spent sunday afterfeeling so down and in floods of tears. I wouldnt mind but she knows what Ive been through and having to have carers in. Being upset has turned to anger, my husband said ignore her, hes not happy with her at all. fibro affects us all differently to the severity of it. Im at the extreme level of it. I didnt ask for this horrid condition or want it. so flaming fed up of being dam judged all the timesad Im sick of people. sorry rant over. take care hun gentle hugs x
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    • Posted

      Yes Kaz;    we really do feel the guilt, even though we are told "it's not our fault" and "can't do much about it"......but even though these words are all soooooo true, it still does make me angry, and frustrated because I Really Do Miss not being able to work.............I Get sooooo lonely, and Bored.......(& knowing that I will probably have another at least 15+ years before I am likely to pass ..  ) ....I really wish that there was just Something that I could work at (I loved my Career, and worked hard to get it).....but at present, I really am doubting that anyone really undestands this........I want "the Know It Alls to know that I Really would love to be still working, being Independant, not having to see my husband work hard just to keep us in house etc.........even to be able to Pay for my Own Medical Expenses".......but as the cliche says....just can't get into the System, as one Expert wrote to me and "wants to know if I Have Any Proof that I Couldn't Work 30+ hours in 2010"..........how can I answer that Question.......nobody was even prepared to give me a chance, as it costs too much to pay a lady my age, not when they can get teenagers to work for less wages   (this was after I had stopped working in my Profession due to Ill Health).............I certainly understand you guys/gals trying to get what you call PIP..............anyhow that's my beef for today.........goodnight....Bron
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    • Posted

      Hi Bronwyn

      I can relate to all that you have said. Not being able to work or get out much brings loneliness and feeling guilty about all sorts of things. When I was diagnosed with fibro I had never heard of it, but was instantly in denial, I just couldn't understand how with all of this pain nothing showed up on any tests, and instantly felt that people would fell it wasn't real, but it is, and it's a lot for us to deal with. Then people ask us the most ridiculous questions, like your "give me proof you couldn't work 30+ hours in 2010", I mean really! People seem to have no understanding. It's hard enough coming to terms and living with this condition ourselves, without having to deal with other people's denial of things too.

      Anyway, take care

      Boqer

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    • Posted

      Hugs Kaz...   Feeling for you and all of us! 

      So like yourself Kaz, I get so frustrated and a tad down to when folk just 'don't actually want to really know/understand what it is, what the gravity is, what it truly is to have Fibro, at any level.'  

      For me it is the 'continual denial'.. the deliberate denial, even when they have facts explained to them...  It's THIS aspect that really truly grates me!  Hohummm  Takes a deeeeep Breath holds for 10, (turns blue and passes out! hahahaha)  Nah, seriously I just gently shake my head, I do suck in a breath and tsk tsk, and turn away or walk away ....Till the next in my ear or in my face, face off..   

      'It's those low moods, stressed times and quiet times, when the pains and aches wear you down that you tend to also memory bounce all over those 'converstations, situations, certain folk who face off to you, or from behind you.'.... and then it's, vent vent vent... 

      Yes, and I agree, the judgements do hurt.  But I guess the validation is on our side, 'not theirs'... we have to remember to remind ourselves/self of that fact..   Rest well Kaz...  bless ya, and hugs x

       

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    • Posted

      Hi bron Big hug coming to you x Its soooo hard for us when weve always been use to working and being on the go 24/7 to suddenly not be able to. I would do absolutly anything to be out their working, I hate being stuck in 4 walls, Im sick of being judged. if only people could be in our shoes for a day then they would see what it was like, they wouldnt flaming judge then.mad OOOh i get so angry when were judged and told we look well. wish we could turn our bodys inside out so people could see eactly what is going on. when we hit a certain age people arnt interested about employing us its like the only place they think for us is on the scrap heat. I hate the thought of having to put up with this till I pop my cloggs. sorry Having 1 of those days. I just feel for us all wish something could be done for us all. take care bron xx
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    • Posted

      Big hug to you Deb I think Im in the anger stage of fibro at the min. what doesnt help is when we are judged and made to feel quilty where not working is concerned. I would give anything to be able to work and thats what I want to do work. i get sick of seeing 4 walls, not being able to do what I want to. Is the colour back in your face now lol what ya like bless you. you take care  xxsmilex
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    • Posted

      I guess anger is good...  lets us know we are still switched on and sane!!  lol...   I understand about the 4 walls, about not being able to do what you want, about not being reliable for work, and not even being able to go to the supermarket because it's a distance that's to far most days, let alone being able to carry the bag/s.  Hohummmm  I so miss my car.  I just look out the window and see it parked up..  This does really upset me, it is my independance.  I loved the freedom to get out on the road, and being able to go to the appointments, supermarket, Art society room, pool but alais it's 'poof'... it's just only in my dreams now...

      Hugs kaz...  keep on being real, like everyone else and myself your allowed to be angry...'Anger away...  we are listening'...  And I so appreciate it to..  Bless and hugs everyone and yourself kaz..

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