living with a chronic condition (part 4)

Unity · 6 September 2009 at 7:19PM

Paparika wrote: »

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

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.

Jojo_the_Tightfisted wrote: »

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 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

.

purplecatlover · 6 September 2009 at 7:20PM

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 · 6 September 2009 at 7:27PM

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.

Jojo_the_Tightfisted · 6 September 2009 at 7:28PM

Unity wrote: »

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 .

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.

Paparika · 6 September 2009 at 7:45PM

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

Unity · 6 September 2009 at 8:01PM

raeh wrote: »

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.

Wot ^she^ said - absolutely :T

Jojo_the_Tightfisted wrote: »

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.

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

Paparika · 6 September 2009 at 9:48PM

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.

soolin · 6 September 2009 at 10:13PM

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.

Paparika · 6 September 2009 at 10:18PM

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

black_paw · 6 September 2009 at 10:21PM

i have nike shox trainers and with out them i could hardly walk, they have spings in the heels , so my neck doesn't jarr so much on walking ..
so sad thread is closed as it was high lite of my day , to catch up with dear friends. while we struggle to have a normal life ..as not being able to get out .means no friends to listen and natter to you .......so sad.......just of to depression thread ........if that still there

living with a chronic condition (part 4)

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