living with a chronic condition (part 4)

purplecatlover

LameWolf wrote: »

For what it's worth, Echinacea sends me straight into a flare, and I've known other Lupies have the same reaction.


Hear Hear!! I'd be terrified to have to go to the Moneysavers Arms - far too scary in there for me. and far too argumentative the few times ive ventured in there for me
I must've missed that somehow, as I don't remember anything about it. i remember the suggestion but not the site

I guess that just about wraps it up for me. I actively try not to go on about my illness (not always successfully, it's true). So my posts will prob be seen as off-topic. Shame, cos I'm really in need of some support today.
whivh is also why i said i wouldnt post in here anymore...not anything to do with any of you,but i dont feel i can ask about how life things for all of you ahve gone, or tell you about my cats latest exploits since theyre specifically illness related.

raeh wrote: »

Lamewolf I think everyone is getting the wrong idea totally about this, the thread is still here. soolin isnt saying all we can discuss is our conditions and symptoms, after all sometimes talking about other things generally is a way that we cope with an illness?

i disagree, (not with you raeh but with the statement that we can discus things other than conditions and symptons. see below for why

soolin wrote: »

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 so pretty much anything relating to benefits, such as the campaign to save dla etc is not allowed here unless it is a specific question about the specific illness.
Family issues should go to MoneySaving in Marriages, Relationships & Families thus people worrying about parents, children, significant others etc is not allowed here
Special occasion chat should go to Special Occasions & Celebrations thus anything wedding, anniversary, birthday, etc related is not allowed here
general chat needs to go to the The Money Savers Arms.
so anything to do with daily activities, what we are planning on doing for the day, what we are having for dinner etc etc is not allowed here.

so what does that leave if not only illness and specifically illness related stuff?

soolin

purplecatlover wrote: »

so what does that leave if not only illness and specifically illness related stuff?

As an example I assume that most people would see the shoe discussion as relevant to this thread as suggesting different footwear to aid stability or to provide relief from pressure on certain bits is surely directly resulted to the various conditions.

I really don't feel that it benefits new users to this board though to have to read what amounts to journal style reflections when they maybe just want to ask a specific question about something related to their condition.

This board is open to everyone, we must welcome new users maybe even those recently diagnosed and at a loss where to go and what to do for the best. We all get friends on boards, but that by its very nature can seem to outsiders to exclude them sometimes especially when serious issues get lost in the daily life updates.

No one is stopping people just chatting and keeping up with the gossip, but this is not the board nor the thread to do so.

Paparika

I'm not keen on the marriages, relationships one as its just too full of trying to get pregnant, trying after 1 year plus ....

that should be in a league of its own because unless i am having a thick day, it isn't money saving, like us here its a support network that they need, reassurance, from those who understand..

sometimes we just want to come on here and say how carp we are feeling etc

HopeAndDriftWood

I'm sad to see that this has changed, as I am an 'outsider' myself, and always enjoyed reading about BZ's wedding and people's days, as it was inspiration that you can learn to cope with this illness. There are times when it seems no one else understands, and having a thread like this one has been immensely helpful to me.

Could there not be two threads, one for updates and fibro chat (because this illness does affect EVERYTHING, and the chat was so helpful) and one for questions etc? I will miss this thread if it stays as it is, keeping up with several threads seems horribly stressful!

purplecatlover

soolin wrote: »

I really don't feel that it benefits new users to this board though to have to read what amounts to journal style reflections when they maybe just want to ask a specific question about something related to their condition.

This board is open to everyone, we must welcome new users maybe even those recently diagnosed and at a loss where to go and what to do for the best. We all get friends on boards, but that by its very nature can seem to outsiders to exclude them sometimes especially when serious issues get lost in the daily life updates.
yes which is fine, which is why i suggested a separate thread for all the daily stuff, and let this one go back to specific stuff only.
No one is stopping people just chatting and keeping up with the gossip, but this is not the board nor the thread to do so.

but they are allowed in other threads on other boards so long as one post here and there fits the on topicness. many of the other daily chat threads have initial posts that say chat about anything and everything, not anything and everything related specifically to competions or debt free for example, the odd post mentions what they won or want to win or what dfw things they have done/plan to do that day but its not all specific related like we have been told it must be here.

my point was that there is little i can say in here that is on topic because i dont wish to go on and on about the problems i have.

and as this is also off topic accoring to the rules i shall bow out now.

Paparika

SaucySecrets wrote: »

I'm sad to see that this has changed, as I am an 'outsider' myself, and always enjoyed reading about BZ's wedding and people's days, as it was inspiration that you can learn to cope with this illness. There are times when it seems no one else understands, and having a thread like this one has been immensely helpful to me.

Could there not be two threads, one for updates and fibro chat (because this illness does affect EVERYTHING, and the chat was so helpful) and one for questions etc? I will miss this thread if it stays as it is, keeping up with several threads seems horribly stressful!

nooooo your not an outsider, never think you are.

Invasion where are my manners, welcome

purplecatlover

SaucySecrets wrote: »

Could there not be two threads, one for updates and fibro chat (because this illness does affect EVERYTHING, and the chat was so helpful) and one for questions etc? I will miss this thread if it stays as it is, keeping up with several threads seems horribly stressful!

that was exactly my suggestion and what i pmed soolin about, asking permission to have anew thread for the more chatty stuff thus leaving fibro 3 for specific stuff. only for the last thread to be closed a couple of hours later and being told that chatty stuff doesnt belong on mse...at least in relation to disability and dosh!

btw saucy did you get the email attachments i sent ok?

Jojo_the_Tightfisted

Had an x-ray on my right ankle today. The GP insists I have sprained it - I have done no such thing for about 12 years. I just tried to sit cross legged for meditation one morning and the pain was rather intense and my foot refused to turn under. (So now I sit in horse pose, astride a whole bunch of zafu cushions). Despite the GP's convictions, she referred me about 10 days ago.

My appointment was at 10.45. I got there at 10.40. By 10.46, I was leaving the hospital, having had the x-rays already.


I was practically incapable of speech. In and out again within 6 minutes? That's (starts counting on fingers and toes) 360 seconds!!!!!!!!!!!!!!!!!!!

Surely that is a world record for the NHS - or can someone better that?

My previous best was for my last bloods - I took the ticket and they called my number before I had time to turn it over and read it. But that took ten minutes, as they needed a good armful for all the tests.

What happened to the NHS when I wasn't looking?

Unity

Hello and thanks for the support (I knew the fundamental ethos of this thread wouldn't change :T), I've just had one of the worst days, after taking the first Tamiflu, vomiting every half hour until 4p.m. DH has it now and DS is in 'the East Wing':D until we get over the worst. .It's true what they say - if you think you have SF you probably haven't:rolleyes:.

"This is hell, nor am I out of it." :(:(

Careful_with_that_Axe

lw Sorry to hear you're having a bad day. What can we do to help you?

Invasion Welcome! I'm a Lupite, rather than a fibro sufferer, but ME/FMS/SLE do seem to go hand in hand somewhat as raeh said.

Unity Poor little porker *g*. The reason I didn't take the Tamiflu was partly the side-effects and partly poss interactions with other meds. I hope you recover soon and that nursing DS isn't taking it all out of you on top of illnesses.

I had a wonderful weekend with Sam, but am knackered now and hips are really bad which is a bit of a new one for me. Normally it's only lying on my side in bed that sets them off.

Need to have a restful time prior to leaving for THE WEDDING OF THE CENTURY.Flying up on Saturday and need lots of rest before then. Then try to rest up again before 70th Birthday for Dad's wife at end of month. Roll on a month with nothing to do but recover!