living with a chronic condition (part 4)

A question about : 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.

Best answers:

• 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.
• 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'.
• 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.
• 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?
• 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'll have a chat do ds, see what he can knock up
  I wouldn't want us in trouble or posts deleted on here
• 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.
• 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.
• 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.
• 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
• 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.
• 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.
• 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