living with a chronic condition (part 4)

Welcome to the new thread.

This thread is for the discussion about living with fibrmyalgia and connected benefits and moneysaving issues.

Discussions about pure benefits should be taken to Benefits & Tax Credits
Family issues should go to MoneySaving in Marriages, Relationships & Families
Special occasion chat should go to Special Occasions & Celebrations
general chat needs to go to the The Money Savers Arms.

Many thanks for your co operation.

My wording on this is terrible and I apologise-I am open to suggestions on how to start the opening post so that newbies can see what is appropriate to post here and which discussions will be moved.
I’m a Forum Ambassador and I support the Forum Team on the eBay, Auctions, Car Boot & Jumble Sales, Boost Your Income, Praise, Vents & Warnings, Overseas Holidays & Travel Planning , UK Holidays, Days Out & Entertainments boards. If you need any help on these boards, do let me know.. Please note that Ambassadors are not moderators. Any posts you spot in breach of the Forum Rules should be reported via the report button, or by emailing forumteam@moneysavingexpert.com.All views are my own and not the official line of MoneySavingExpert.
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Comments

  • sorry guys, as there are chat threads elsewhere i didnt think asking for one here would lead to being told off and closed down.

    i shall clear off and leave everyone alone in this thread since me opening my gob and asking permission for a chat thread is what got other one closed down and also since i dont have fibro and now the rules for this thread state it is strictly fibro only.

    those of you who enjoy the chatter and banter in amongst the support for living with disability/illnesses who want somewhere else to continue it shout (here or pm)...if its wanted i (or someone) can easily go create a forum for the purpose.
  • soolin
    soolin Posts: 72,034
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    I did take advice and it seems that 'chat ' threads on other boards do still have a link with the overall theme of that board. A general chat thread would not seem appropriate here unless it had some link to the board theme 'Disability and Dosh'.
    I’m a Forum Ambassador and I support the Forum Team on the eBay, Auctions, Car Boot & Jumble Sales, Boost Your Income, Praise, Vents & Warnings, Overseas Holidays & Travel Planning , UK Holidays, Days Out & Entertainments boards. If you need any help on these boards, do let me know.. Please note that Ambassadors are not moderators. Any posts you spot in breach of the Forum Rules should be reported via the report button, or by emailing forumteam@moneysavingexpert.com.All views are my own and not the official line of MoneySavingExpert.
  • most days pain comes into the conversation somewhere. its general chat related to illness and disability and more importantly support form people who understand how difficult it is to undertake daily activities with an illness/disability without it having to be spelled out
    every single sentence.

    i dont have fibro, i do have an illness, i do get dla because of it, and it does affect my ability to undertake and cope with normal everyday things...which others can relate too and get where i am coming form.

    many of the other chat threads (ive just had a look) have intro posts stating chat about anything, the few pages ive skimmed in one or two of the dfw chat threads and the compers inn dont appear to be related to dfw or comps, but thats a snap shot of a few pages, maybe one day when i have the concentration i will go through every page of one of the threads and make siure every single post sis completely on topic and not just appearing to be chatter about plans for the day etc.
  • soolin
    soolin Posts: 72,034
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    edited 6 September 2009 at 5:54PM
    How about we rename this thread living with a chronic (or debilitating) condition? (or something like that) to encompass people who have say ME or MS and other debilitating conditions. We would still have to limit it to actual day to day issues relating to living with those conditions rather than just general chat but it may be more open.

    EDIT: That would still mean people could post their daily updates but we would cut out the threads within a thread that sometimes build up on completely unrelated topics.

    What do people think?
    I’m a Forum Ambassador and I support the Forum Team on the eBay, Auctions, Car Boot & Jumble Sales, Boost Your Income, Praise, Vents & Warnings, Overseas Holidays & Travel Planning , UK Holidays, Days Out & Entertainments boards. If you need any help on these boards, do let me know.. Please note that Ambassadors are not moderators. Any posts you spot in breach of the Forum Rules should be reported via the report button, or by emailing forumteam@moneysavingexpert.com.All views are my own and not the official line of MoneySavingExpert.
  • pcl Don't stop posting lovie. I think what Soolin has suggested is a fair compromise and we can always open up a thread of our own in The Arms or go elsewhere if enough people want to? I have no idea how to open a thread elsewhere or I would do it myself - anyone want to take on the task?
    I must go, I have lives to ruin and hearts to break :D
    My attitude depends on my Latitude 49° 55' 0" N 6° 19' 60 W
  • Unity
    Unity Posts: 1,524
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    edited 6 September 2009 at 6:03PM
    soolin wrote: »
    Welcome to the new thread.

    This thread is for the discussion about living with fibrmyalgia and connected benefits and moneysaving issues.

    Discussions about pure benefits should be taken to Benefits & Tax Credits
    Family issues should go to MoneySaving in Marriages, Relationships & Families
    Special occasion chat should go to Special Occasions & Celebrations
    general chat needs to go to the The Money Savers Arms.

    Many thanks for your co operation.

    My wording on this is terrible and I apologise-I am open to suggestions on how to start the opening post so that newbies can see what is appropriate to post here and which discussions will be moved.

    Hi Soolin,

    Could I make a suggestion that the thread might include in addition to Fibromyalgia, other associated conditions like M.E. and in fact other diseases that compromise the immune system including Lupus etc. These diseases are often mistaken for one another in the process of being diagnosed. In addition things that are found to help one, often help the others as well.

    I see you read my mind!
    sorry guys, as there are chat threads elsewhere i didnt think asking for one here would lead to being told off and closed down.

    i shall clear off and leave everyone alone in this thread since me opening my gob and asking permission for a chat thread is what got other one closed down and also since i dont have fibro and now the rules for this thread state it is strictly fibro only.

    those of you who enjoy the chatter and banter in amongst the support for living with disability/illnesses who want somewhere else to continue it shout (here or pm)...if its wanted i (or someone) can easily go create a forum for the purpose.

    Hey PCL - I've had enough trouble finding you after agreeing with you on the 'Disability Parking Rant' :D so don't disappear:eek:.

    Was it you who posted about the govt. trying to take away DLA and similar benefits and pay them to the local authority? I have been trying to find the website for that again but even doing a search hasn't helped me so far.

    Echinacea - Can anyone tell me whether taking this is a good idea or not?:confused: I used to take this regularly once the end of summer appeared, but I have read somewhere that for those whose immune systems actively work against them, it isn't a good idea to take this. This leaves me in a quandary as I am coughing like mad, with a headache, temperature and runny nose and don't know what to take :o.

    Time for another Glayva :D
    Some people hear voices, some see invisible people. Others have no imagination whatsoever :D
  • Paparika
    Paparika Posts: 2,476
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    I'll have a chat do ds, see what he can knock up

    I wouldn't want us in trouble or posts deleted on here
    Life is about give and take, if you can't give why should you take?
  • Jojo_the_Tightfisted
    Jojo_the_Tightfisted Posts: 27,228
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    edited 6 September 2009 at 6:09PM
    Hmmmm - if I were to chat about shoes, is it relevant to the thread because I have plantar fasciitis in one and arthritis in the other and thus have heck of a time finding anything that fits, never mind that doesn't hurt? If I chat about the family/DD's BF decorating today, it's because I can't do it myself because of RA not fibro, if I generally want to whinge, it's because things can be pants when in pain (even if I don't always want to dwell upon it). It could be my HMS instead. Or SLE as the rheumie spotted a beautiful malar rash across my face at my appointment last week. More blood tests follow...

    Quite frankly, in the great scheme of things, the fact I yelp when someone pokes at me is fairly low on priorities. But I can post when some of the regulars can't, just because of one autoimmune medical condition?

    Seems silly to me.
    I could dream to wide extremes, I could do or die: I could yawn and be withdrawn and watch the world go by.
    colinw wrote: »
    Yup you are officially Rock n Roll :D
  • Paparika
    Paparika Posts: 2,476
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    Unity wrote: »
    Hi Soolin,

    Could I make a suggestion that the thread might include in addition to Fibromyalgia, other associated conditions like M.E. and in fact other diseases that compromise the immune system including Lupus etc. These diseases are often mistaken for one another in the process of being diagnosed. In addition things that are found to help one, often help the others as well.

    I see you read my mind!



    Hey PCL - I've had enough trouble finding you after agreeing with you on the 'Disability Parking Rant' :D so don't disappear:eek:.

    Was it you who posted about the govt. trying to take away DLA and similar benefits and pay them to the local authority? I have been trying to find the website for that again but even doing a search hasn't helped me so far.

    Echinacea - Can anyone tell me whether taking this is a good idea or not?:confused: I used to take this regularly once the end of summer appeared, but I have read somewhere that for those whose immune systems actively work against them, it isn't a good idea to take this. This leaves me in a quandary as I am coughing like mad, with a headache, temperature and runny nose and don't know what to take :o.

    Time for another Glayva :D
    Echinacea well they say it is supposed to be good, i have a pot here but keep forgetting to take it, but your only allowed to do it 2 weeks on then 2 weeks off rotation, and perhaps i shouldn't be taking them because my immune system works against me
    Life is about give and take, if you can't give why should you take?
  • Paparika wrote: »
    Echinacea well they say it is supposed to be good, i have a pot here but keep forgetting to take it, but your only allowed to do it 2 weeks on then 2 weeks off rotation, and perhaps i shouldn't be taking them because my immune system works against me

    I feel great when I'm ill - perhaps it's because my immune system is so turbocharged, if I've actually managed to catch something, there's nothing left to beggar up the rest of me and I'm actually pain free and pretty mobile for a change. I think the last thing I would need would be to rev it up even more. As it is, I get ill about once every 2 years, usually for about 5 hours. The 3 - 5 colds per year, plus bugs and flu for the 'average' person is alien to me. The kids say 'Mummy doesn't get ill'.

    So I would be embracing the grottiness with steaming hot orange juice with manuka honey and propolis, together with some decongestants and paracetamol (but I take that already, so no change there)!
    I could dream to wide extremes, I could do or die: I could yawn and be withdrawn and watch the world go by.
    colinw wrote: »
    Yup you are officially Rock n Roll :D
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