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  • FIRST POST
    • soolin
    • By soolin 6th Sep 09, 5:17 PM
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    soolin
    living with a chronic condition (part 4)
    • #1
    • 6th Sep 09, 5:17 PM
    living with a chronic condition (part 4) 6th Sep 09 at 5:17 PM
    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 the Board Guide for the Ebay Board , Charities Board , Dosh & Disability , Up Your Income and the Local MoneySaving-England board which means I volunteer to help get your forum questions answered and keep the forum running smoothly. However, do remember, board guides don't read every post. If you spot an illegal or inappropriate post then please report it to forumteam@moneysavingexpert.com (it's not part of my role to deal with this). Any views are mine and not the official line of MoneySavingExpert.com
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Page 1
    • purplecatlover
    • By purplecatlover 6th Sep 09, 5:54 PM
    • 6,575 Posts
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    purplecatlover
    • #2
    • 6th Sep 09, 5:54 PM
    • #2
    • 6th Sep 09, 5:54 PM
    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
    • By soolin 6th Sep 09, 6:23 PM
    • 62,968 Posts
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    soolin
    • #3
    • 6th Sep 09, 6:23 PM
    • #3
    • 6th Sep 09, 6:23 PM
    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 the Board Guide for the Ebay Board , Charities Board , Dosh & Disability , Up Your Income and the Local MoneySaving-England board which means I volunteer to help get your forum questions answered and keep the forum running smoothly. However, do remember, board guides don't read every post. If you spot an illegal or inappropriate post then please report it to forumteam@moneysavingexpert.com (it's not part of my role to deal with this). Any views are mine and not the official line of MoneySavingExpert.com
    New to Forum? Guide
    • purplecatlover
    • By purplecatlover 6th Sep 09, 6:44 PM
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    purplecatlover
    • #4
    • 6th Sep 09, 6:44 PM
    • #4
    • 6th Sep 09, 6:44 PM
    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
    • By soolin 6th Sep 09, 6:51 PM
    • 62,968 Posts
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    soolin
    • #5
    • 6th Sep 09, 6:51 PM
    • #5
    • 6th Sep 09, 6:51 PM
    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?
    Last edited by soolin; 06-09-2009 at 6:54 PM.
    I'm the Board Guide for the Ebay Board , Charities Board , Dosh & Disability , Up Your Income and the Local MoneySaving-England board which means I volunteer to help get your forum questions answered and keep the forum running smoothly. However, do remember, board guides don't read every post. If you spot an illegal or inappropriate post then please report it to forumteam@moneysavingexpert.com (it's not part of my role to deal with this). Any views are mine and not the official line of MoneySavingExpert.com
    New to Forum? Guide
  • Careful with that Axe
    • #6
    • 6th Sep 09, 6:59 PM
    • #6
    • 6th Sep 09, 6:59 PM
    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

    My attitude depends on my Latitude 49 55' 0" N 6 19' 60 W
    • Unity
    • By Unity 6th Sep 09, 7:00 PM
    • 1,493 Posts
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    Unity
    • #7
    • 6th Sep 09, 7:00 PM
    Expand the boundaries a little?
    • #7
    • 6th Sep 09, 7:00 PM
    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.
    Originally posted by soolin
    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.
    Originally posted by purplecatlover
    Hey PCL - I've had enough trouble finding you after agreeing with you on the 'Disability Parking Rant' so don't disappear.

    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 .

    Time for another Glayva
    Last edited by Unity; 06-09-2009 at 7:03 PM. Reason: To allow for my mind being read :)
    Some people hear voices, some see invisible people. Others have no imagination whatsoever
    • Paparika
    • By Paparika 6th Sep 09, 7:03 PM
    • 2,388 Posts
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    Paparika
    • #8
    • 6th Sep 09, 7:03 PM
    • #8
    • 6th Sep 09, 7:03 PM
    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
    • By Jojo the Tightfisted 6th Sep 09, 7:06 PM
    • 25,781 Posts
    • 106,341 Thanks
    Jojo the Tightfisted
    • #9
    • 6th Sep 09, 7:06 PM
    • #9
    • 6th Sep 09, 7:06 PM
    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.
    Last edited by Jojo the Tightfisted; 06-09-2009 at 7:09 PM.
    I could dream to wide extremes, I could do or die: I could yawn and be withdrawn and watch the world go by.

    Yup you are officially Rock n Roll
    Originally posted by colinw
    • Paparika
    • By Paparika 6th Sep 09, 7:09 PM
    • 2,388 Posts
    • 2,352 Thanks
    Paparika
    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' so don't disappear.

    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 .

    Time for another Glayva
    Originally posted by Unity
    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?
    • Jojo the Tightfisted
    • By Jojo the Tightfisted 6th Sep 09, 7:16 PM
    • 25,781 Posts
    • 106,341 Thanks
    Jojo the Tightfisted
    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
    Originally posted by Paparika
    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.

    Yup you are officially Rock n Roll
    Originally posted by colinw
    • Unity
    • By Unity 6th Sep 09, 7:19 PM
    • 1,493 Posts
    • 3,180 Thanks
    Unity
    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
    Originally posted by Paparika
    Well, I know it's about benefits but it is in relation to fibro etc. as I'd be interested to know if any of us actually receive any help from the local authority that would in any way justify the government's proposal to pay the benefit to the LA instead of the individual? :rolleyes: Needless to say I don't - unless you count the portable loop system I just received, but anyone who is deaf and wears hearing aids can get one of these.

    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.
    Originally posted by Jojo the Tightfisted
    I have certainly talked about shoes in the past - as if I hadn't got my MBT's I think I'd still be permanently in the wheelchair. They are the most comfortable shoe I have ever worn and my only complaint is that they don't really look good with anything other than trousers .
    Some people hear voices, some see invisible people. Others have no imagination whatsoever
    • purplecatlover
    • By purplecatlover 6th Sep 09, 7:20 PM
    • 6,575 Posts
    • 77,916 Thanks
    purplecatlover
    unity yeah it was, benefits and work was the site that launched the campaign, there are a few thread on mse titled threat to axe disability benefits or similar.

    cwta i wont disappear..after almost a year of talking to you lot daily i am too interested in whats going on with you all to not keep up, but i wont be posting anymore. i feel like many of us have been told of for not mentioning fibro or whatever illness in every single post in the thread, especially given the places suggested we post instead in the op.

    even this post of mine is breaking the illlness related only rules because oops i havent specifically mentioned living with chronic illness and connected benefits and moneysaving issues.
  • raeh
    Soolin i think its a great idea for it to be entitled something different to include other conditions as we have often found links to other conditions when discussing our own.

    pcl please dont go, I was the one who said i felt unable to post now and so started this

    jojo of course you could discuss shoes when your condition affects what you can buy, i hope things arent going to get silly on here now and people start to make facetious comments about what they can/can't say. The problem was most of the posts werent anything to do with fibro/me or any other disability condition and it was difficult to find any posts related to advice or get posts answered inbetween normal 'chat'.

    As soolin said there are lots of forums and threads on mse, so there will be places for regular posts about other daily things. No one is saying we cant ever mention anything not to do with disability but I had felt unable to post and was inhappy with that as this thread has been a good support for me in the past. Im sure people will be unhappy with some of the things i have said and I apologise but foremost we want this thread to be a support for people, as we all know finding out you have a 'disability' and learning to cope is extremely difficult.

    I do hope everyone will continue to post as even when I dont feel 'up to' posting myself I like to read how others are getting on.
    2009-7500 2010 10800 2011 2000


    Thank you to everyone who posts comps xxx
    • Jojo the Tightfisted
    • By Jojo the Tightfisted 6th Sep 09, 7:28 PM
    • 25,781 Posts
    • 106,341 Thanks
    Jojo the Tightfisted
    I have certainly talked about shoes in the past - as if I hadn't got my MBT's I think I'd still be permanently in the wheelchair. They are the most comfortable shoe I have ever worn and my only complaint is that they don't really look good with anything other than trousers .
    Originally posted by Unity
    Really? Do tell more...I am almost permanently in Vans or Adidas Superstars. Even with my smartest trousers and layers of clothing for the inflammation related temperature fluctuations. It means I look like a frustrated old surfer hippy chick.

    Oh. Hang on.

    I am a frustrated old surfer hippy chick.

    Ah.
    I could dream to wide extremes, I could do or die: I could yawn and be withdrawn and watch the world go by.

    Yup you are officially Rock n Roll
    Originally posted by colinw
    • Paparika
    • By Paparika 6th Sep 09, 7:45 PM
    • 2,388 Posts
    • 2,352 Thanks
    Paparika
    DS is tapping away upstairs for us... so if you guys n gals want to discuss what you want then it will be available soon..

    Jojo that sounds just like me hehe
    Life is about give and take, if you can't give why should you take?
    • Unity
    • By Unity 6th Sep 09, 8:01 PM
    • 1,493 Posts
    • 3,180 Thanks
    Unity
    Soolin i think its a great idea for it to be entitled something different to include other conditions as we have often found links to other conditions when discussing our own.

    pcl please dont go, I was the one who said i felt unable to post now and so started this

    jojo of course you could discuss shoes when your condition affects what you can buy, i hope things arent going to get silly on here now and people start to make facetious comments about what they can/can't say. The problem was most of the posts werent anything to do with fibro/me or any other disability condition and it was difficult to find any posts related to advice or get posts answered inbetween normal 'chat'.

    As soolin said there are lots of forums and threads on mse, so there will be places for regular posts about other daily things. No one is saying we cant ever mention anything not to do with disability but I had felt unable to post and was inhappy with that as this thread has been a good support for me in the past. Im sure people will be unhappy with some of the things i have said and I apologise but foremost we want this thread to be a support for people, as we all know finding out you have a 'disability' and learning to cope is extremely difficult.

    I do hope everyone will continue to post as even when I dont feel 'up to' posting myself I like to read how others are getting on.
    Originally posted by raeh
    Wot ^she^ said - absolutely

    Really? Do tell more...I am almost permanently in Vans or Adidas Superstars. Even with my smartest trousers and layers of clothing for the inflammation related temperature fluctuations. It means I look like a frustrated old surfer hippy chick.

    Oh. Hang on.

    I am a frustrated old surfer hippy chick.

    Ah.
    Originally posted by Jojo the Tightfisted
    Hi Jojo - I have tried all different makes of shoes over the years including Doc Martens as the 'Airwear' soles used to help, although they seemed to get uncomfortable as they got older. Then I went into Merrell's - the shoes first and then the sandals - but I always knew there was something not quite right..

    I saw MBT's http://uk.mbt.com/Home/Benefits.aspx advertised when they first came out and was shocked at the price 139 but I have found them on sale since then at Amazon for instance where you can see from this link: http://www.amazon.co.uk/s/ref=nb_ss_1_3?url=search-alias%3Daps&field-keywords=mbt+shoes+women&sprefix=MBT they are cheaper than the Skecher equivalent.

    The instruction DVD for how to walk in them is here: http://www.youtube.com/watch?v=zrg8W8wwgZg and they do take a bit of getting used to. The good thing I have found is that they last and last. I am very rarely out of mine - simply because when I go back to ordinary shoes my back/legs/ankles and feet all ache.

    I hope that's helpful
    Some people hear voices, some see invisible people. Others have no imagination whatsoever
    • Paparika
    • By Paparika 6th Sep 09, 9:48 PM
    • 2,388 Posts
    • 2,352 Thanks
    Paparika
    well we now have somewhere to go and chat.. not sure that i can advertise it here, but pm me if i haven't pm'd you

    It's unfortunate that our thread got..tided up but we don't want to be breaking rules of mse.
    Life is about give and take, if you can't give why should you take?
    • soolin
    • By soolin 6th Sep 09, 10:13 PM
    • 62,968 Posts
    • 45,341 Thanks
    soolin
    I'm trying out a new title..is it too unwieldy, should I call it something else?

    I am open to suggestions, I don't want to exclude anyone who has a condition that affects their lives. Whilst some living advice will be condition specific I'm sure a lot of it will be of use to anyone who has pain or mobility issues or indeed any other form of condition.

    Lastly, while I am aware there is an off MSE discussion now, and of course that may well have benefits in that you can discuss medical advice as well that would also be prohibited on MSE I am happy to assist anyone who wants a new thread started in the Arms or any other board that is appropriate. If you wanted to start a purely chat thread about non condition related issues I could also send it to the Arms once it was established and leave a link so you could find it. If not, then that is fine too.
    I'm the Board Guide for the Ebay Board , Charities Board , Dosh & Disability , Up Your Income and the Local MoneySaving-England board which means I volunteer to help get your forum questions answered and keep the forum running smoothly. However, do remember, board guides don't read every post. If you spot an illegal or inappropriate post then please report it to forumteam@moneysavingexpert.com (it's not part of my role to deal with this). Any views are mine and not the official line of MoneySavingExpert.com
    New to Forum? Guide
    • Paparika
    • By Paparika 6th Sep 09, 10:18 PM
    • 2,388 Posts
    • 2,352 Thanks
    Paparika
    awww soolin it's a bit of a mouthful

    But i can't think of a suitable name right now, i'm sure it wouldn't sound right
    Life is about give and take, if you can't give why should you take?
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