Your browser isn't supported
It looks like you're using an old web browser. To get the most out of the site and to ensure guides display correctly, we suggest upgrading your browser now. Download the latest:

Welcome to the MSE Forums

We're home to a fantastic community of MoneySavers but anyone can post. Please exercise caution & report spam, illegal, offensive or libellous posts/messages: click "report" or email forumteam@.

Search
  • FIRST POST
    • soolin
    • By soolin 6th Sep 09, 5:17 PM
    • 62,940Posts
    • 45,316Thanks
    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
    New to Forum? Guide
Page 3
  • raeh
    sorry forgot to say hello invasion I think you will find not many of us just had fibro but many different illnesses hence the new title and also a lot of conditions as we have found seemed to be interelated [is that the right word? :confused:, is it even a word? ]

    Dont worry about what people think in my old[er] age i've just stopped caring lol
    2009-7500 2010 10800 2011 2000


    Thank you to everyone who posts comps xxx
    • purplecatlover
    • By purplecatlover 7th Sep 09, 3:15 PM
    • 6,571 Posts
    • 77,712 Thanks
    purplecatlover
    For what it's worth, Echinacea sends me straight into a flare, and I've known other Lupies have the same reaction.:confused:


    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.:confused: 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.
    Originally posted by LameWolf
    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? :confused:
    Originally posted by raeh
    i disagree, (not with you raeh but with the statement that we can discus things other than conditions and symptons. see below for why


    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.
    Originally posted by soolin

    so what does that leave if not only illness and specifically illness related stuff?
    • soolin
    • By soolin 7th Sep 09, 4:14 PM
    • 62,940 Posts
    • 45,316 Thanks
    soolin

    so what does that leave if not only illness and specifically illness related stuff?
    Originally posted by purplecatlover
    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.
    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 7th Sep 09, 4:25 PM
    • 2,388 Posts
    • 2,352 Thanks
    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
    Life is about give and take, if you can't give why should you take?
    • SaucySecrets
    • By SaucySecrets 7th Sep 09, 4:29 PM
    • 2,213 Posts
    • 3,975 Thanks
    SaucySecrets
    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
    • By purplecatlover 7th Sep 09, 4:38 PM
    • 6,571 Posts
    • 77,712 Thanks
    purplecatlover

    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.
    Originally posted by soolin
    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
    • By Paparika 7th Sep 09, 4:40 PM
    • 2,388 Posts
    • 2,352 Thanks
    Paparika
    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!
    Originally posted by SaucySecrets

    nooooo your not an outsider, never think you are.

    Invasion where are my manners, welcome
    Life is about give and take, if you can't give why should you take?
    • purplecatlover
    • By purplecatlover 7th Sep 09, 4:40 PM
    • 6,571 Posts
    • 77,712 Thanks
    purplecatlover

    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!
    Originally posted by SaucySecrets
    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
    • By Jojo the Tightfisted 7th Sep 09, 4:44 PM
    • 25,780 Posts
    • 106,325 Thanks
    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?
    Last edited by Jojo the Tightfisted; 07-09-2009 at 4:47 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
    • Unity
    • By Unity 7th Sep 09, 5:09 PM
    • 1,493 Posts
    • 3,180 Thanks
    Unity
    Thanks for the support
    Hello and thanks for the support (I knew the fundamental ethos of this thread wouldn't change ), 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' 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."
    Some people hear voices, some see invisible people. Others have no imagination whatsoever
  • 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!
    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
  • Careful with that Axe
    Jojo I nearly fainted when I read your post! Wish my hospital would take a leaf out of that book - Rheumi clinic regularly runs 2 hours late.
    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
    • Jojo the Tightfisted
    • By Jojo the Tightfisted 7th Sep 09, 7:27 PM
    • 25,780 Posts
    • 106,325 Thanks
    Jojo the Tightfisted
    Don't be too shocked - the hospital usually cancels Rheumatology appts for 6 - 9 months (and you have to get through to the consultant's secretary and beg for an appt only 4 months later than the one originally given) and appts are usually doubled booked to the extent that there are 4 -6 people waiting for the one appt slot.

    The tests though - they used to be even worse than the outpatient appts. At this rate, I will have had all tests completed and reported upon by the time my rheumatology appt is cancelled and rebooked twice...
    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
  • kassandra
    Invasion, welcome. With a name like that I'm surprised that you felt you couldn't intrude

    Unity, big hugs to you and the family. Although they're arms length hugs

    LW, aaaaaww sorry you're feeling like this. PM me if you want to rant/get something off your chest xxxx

    You know they say you shouldn't put everything down to Fibro.........well I do and was told the other day at physio that she thinks my hip problems are either down to my hypermobility or a problem with a joint that connects the spine to the hips........scoli/something or other? Any idea's cos I want to do a bit of research before my next appointment and can't remember the name! Surprisingly :rolleyes:
  • anniea
    Joint
    Could be the iliac joint - joint between spine and pelvis
    • zzzLazyDaisy
    • By zzzLazyDaisy 7th Sep 09, 9:46 PM
    • 12,134 Posts
    • 18,762 Thanks
    zzzLazyDaisy

    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.
    Originally posted by Unity
    http://forums.moneysavingexpert.com/showthread.html?t=1917115

    Hope this helps
    I'm a retired employment solicitor. Hopefully some of my comments might be useful, but they are only my opinion and not intended as legal advice.
  • kassandra
    Thanks anniea, I'll go and have a look.
    Also thanks to zzzLazyDaisy.

    Has anyone seen bz? I'm a bit concerned cos she hasn't been on here or facebook for the last couple of days and although I know she has looooaaads on, she normally pops her head round the door.
    • black paw
    • By black paw 7th Sep 09, 10:41 PM
    • 1,775 Posts
    • 1,147 Thanks
    black paw
    what
    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? :confused: but the last thread had become something completely off topic and not related in the slightest and had put people off posting at all? I hope you will post in here and as i have said, I have found everyone a good support in the past and hopefully you will all continue to be.
    (((( Hugs)))) if you arent feeling great today and I hope you can come and chat about it xx
    Originally posted by raeh
    then why is the thread closed ?? it was about our life and how we cope, doing day to day things ..such as going to the shops ect. :confused:
    the truth is out there ... on these pages !!
    Last night I lay in bed looking up at the stars in the sky and I thought to myself, where the heck is the ceiling.
  • morag1202
    I subscribed to the fibro thread and lurked on it, really enjoying all the off topic posts it was the sort of mutual support thread I had hoped the Old Crocks Cafe would be when that was started. I'd love to join in a chat/support thread like the fibro one used to be. I have RTA back problems.

    Can I please urge you all to come and chat about your day in the Old Crocks Cafe?


    http://forums.moneysavingexpert.com/showthread.html?t=1224675
    Last edited by morag1202; 08-09-2009 at 1:47 AM. Reason: to add link
    Murphy was an optimist!!!
  • raeh
    then why is the thread closed ?? it was about our life and how we cope, doing day to day things ..such as going to the shops ect. :confused:
    Originally posted by black paw
    Im not sure why you put an angry face on the title when asking me a question? :confused:

    As I said before the fibro thread has been closed and reopened twice before and there was no problem carrying on posting, hence this one being titled part 4. Why can you not can you not post here about how you cope day to day? I think its sad that such a big deal is being made of this rather than carrying on posting! :rolleyes:

    Kass I always said its easy to just blame everything on fibro pains and i ignored a strained shoulder thinking it was a little bit of extra fibro pain :rolleyes:

    cwta im glad you had a good time with your friend, sometimes its worth some extra pain to enjoy doing something you enjoy I hope it doesnt last too long

    LW hugs to you as you havent been back in, I hope you are ok x
    2009-7500 2010 10800 2011 2000


    Thank you to everyone who posts comps xxx
Welcome to our new Forum!

Our aim is to save you money quickly and easily. We hope you like it!

Forum Team Contact us

Live Stats

329Posts Today

2,717Users online

Martin's Twitter