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    • soolin
    • By soolin 6th Sep 09, 5:17 PM
    • 63,165Posts
    • 45,601Thanks
    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 (it's not part of my role to deal with this). Any views are mine and not the official line of
    New to Forum? Guide
Page 21
    • bigzippy
    • By bigzippy 30th Sep 09, 8:24 PM
    • 4,033 Posts
    • 15,643 Thanks
    do other people feel really isolated through there illness. i know i am lucky enough to have car now. but i still fell quite alone at times, because of my illness, i have limited amounts of energy, and i feel my day is only about 4 hours long, as the rest of the time im sleeping or in too much pain to do anything
    Originally posted by kaj70
    Yep. I think we've all suffered from those feelings at one time or another... I've, like pcl (I think it was) said, found the internet a Godsend. I can't imagine how I would be now if I hadn't got messenger, Facebook, and here to stay in touch with "the outside world". I'm not generally bed bound, or house bound, but I do struggle to socialise much and when I first got so ill I felt very abandoned by my friends...unfortunately I'm still finding out, the hard way, who my real friends are. And the more you turn down social events because you're not feeling too well or that you'll be up to it, the less you get asked to go anywhere.:rolleyes: What would've been my closest/best friends a couple of years ago, I now don't see at all unless they come round here once in a blue moon, or I pop round to theirs or organise something myself and invite them.:rolleyes: Even their various birthday bashes It was even like that while I was planning my wedding and altho they said how excited they were and how much they wanted to be involved, I basically saw nothing of them.
    Hello Everyone

    I've come over as 2 people have suggested it now. (Hello BZ )

    I'm 24 and have ME/CFS. Been diagnosed 4 years but specialist thinks I've had it for 6 years and they mis-diagnosed me for the first 2 years (no suprises there)

    Not having a very good day today (or even the last week) my stepsons brought me a nice cold 2 weekends ago and I am now in agony. On anti-biotics and steroids as also asthmatic and have bronchitis developing (just what I needed)

    I'm still trying to work although I'm going to insist me and DH swap cars as driving a manual is Very difficult and his is automatic. At the moment the worst part is my legs, extremely painful and that's when I'm sitting still!! Very difficult to walk, have crutches at home but my arms are just feeling lifeless so I know they would be no use to me as I'd tire even quicker. Time off work would be lovely but unsure if we could afford it right now, SSP wouldn't cover much at the moment and cant afford to lose 3 days pay before it kicks in, so any idea's on how I can carry on would be amazing I work full time (no idea how I manage it) on the third floor of an italian restaurant, I'm the office clerk and will be asking the staff if they can do the jobs downstairs as I can't manage with them at the moment, took me 20 mins to get up them this morning! Started college last week so I have that 2 nights a week till June. But it's to get me a better job with more money so I can reduce hours and still get same sort of pay

    I try to keep my legs as warm as possible but heat is also proving painful as well :confused: (If I were an animal I'd of been put down by now I'm sure)
    Originally posted by bevan840
    Hi bevan I'm sorry to hear you're doing it so tough at the moment - I've no idea how you manage to work full time with all this going on! It's nice to hear of someone around my own age who has ME too
    As far as the heat thing is concerned, I feel your pain! I've been told to do the routine ice and elevation thing with my damaged ankle, but the cold sets off the joint pains and spasms in the muscles. So then I have to warm them up again, which sets off the swelling process again which in turn gives me a weird pins&needles type sensation on the surface of my skin in various places...:rolleyes: You just can't win sometimes can ya?

    Feel free to join us in the (not so old) Crock's Cafe too bevan and kaj70, where the conversation topics are a little less restricted
    Last edited by bigzippy; 30-09-2009 at 8:26 PM.
    "I am indelibly stained by hope and longing" - Nuts in May
  • kaj70
    thankyou, i have great trouble finding the right place to go on this site, is there an easy navigation technique??
    • bigzippy
    • By bigzippy 30th Sep 09, 11:43 PM
    • 4,033 Posts
    • 15,643 Thanks
    thankyou, i have great trouble finding the right place to go on this site, is there an easy navigation technique??
    Originally posted by kaj70
    Lol, if there is I haven't found it yet either! I have to use the forum search and then once I've found it, bookmark it!
    "I am indelibly stained by hope and longing" - Nuts in May
    • black paw
    • By black paw 1st Oct 09, 1:04 AM
    • 1,775 Posts
    • 1,147 Thanks
    black paw
    when you find thread you like go to top of page..thread on that ..subscibe to this on that ..back to on ..then when you log on go to forum click..then to top bit saying...user cp..and drop down will show you the saved threads..just click on the one you go there...took me ages to work that out !
    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.
    • purplecatlover
    • By purplecatlover 1st Oct 09, 1:15 AM
    • 6,586 Posts
    • 78,320 Thanks
    also subscribing to the thread means you can set it to update you instantly or daily by email too...
  • kaj70
    Oooooo thankyou, i miss so many replies and i end up forgetting where i have posted and cant find it again, so far i am doing quite good with this one. it is really good to be able to comunicate with people in the same position.
    its so late, i so tired, but finding it really hard to sleep as i have alot of pain at the moment.

    bevan840 how are you feeling, i hope your pain is easing for you. i admire you fo being able to continue working, i know and understand that its usualy a case of having to. I was working in a school, for behaviour support, they were brilliant to me. they allowed me to work my hours but spread them out throughout the week dpending on my health. as long as i worked those hours, but even then i had to go home a few times due to not being well. last year i had a spel of really bad spell of vertigo, it lasted 3 months, and i was in bed constantly, unable to move, so i had to give it up really, as i ended up exhausted, more than usual and in and out of hospital, i do miss going out and even just being sociable, but as most of yo have agreed..THANKYOU for facebook, msn, this thread. email. and the open uni course i do when i feel well
  • kaj70
    hey.. i see what you mean. the last ost was a while ago now. i hope everyone is ok. i am trying to do an open university course, which is quite tricky as i have mushy brain most af the time.. and just forget it all.. but i will plod on.

    hope your all well xx
  • bevan840
    Hi Kaj

    I think most of them are in another thread now as they were a little unsure as to what they could post on this one, The (Not So Old) Crocks Cafe.

    I'm doing ok for the moment, going back to work tomorrow after having this week off :confused: going to be using DH's automatic car and taking my sticks with me so hoping I'll cope, no choice really as you said, it is more of a neccessity than choice, which is why I'm doing 2 nights a week at college to become an accountant.

    Time to get my a*se into gear and get everything ready for tomorrow, hope your all ok x
    Jan 09. Debt @ LBM - 11936.55 Debt at worst - 12600.55 Current Debt (01/03/2012) 8,859.51 29.7% Paid off
    Honeymoon Fund 410.40/6000 House Deposit 1.50
    Proud to be dealing with my debts. DFW Nerd 1177
  • kaj70
    so should we be on there, because when i joined that one a whils ago, i posted something about mky health, and they told me i should be on this confused!!!!
    i do feel for you, it must be so hard at times though. im fortunate enough at the moment that i dont need to be working. i do admire your determination and strength that you have. good luck for tomorrow when you go back xx
    • jazabelle
    • By jazabelle 11th Oct 09, 8:27 PM
    • 1,690 Posts
    • 4,682 Thanks
    You can chat about anything in the cafe thread kaj70, including your health! Please do stop by there, most people don't come into this thread now.
    • purplecatlover
    • By purplecatlover 12th Oct 09, 7:10 AM
    • 6,586 Posts
    • 78,320 Thanks
    kaj we moved form this thread due to only being allowed to talk about specific illness illness or questions and answers here. general how we are or whats worrying us or causing us problems and other stuff is all off topic in this thread, even though it goes without saying that the problems ilness causes make it more difficult to sort other things out, which leaves not very much to say when we dont want to dwell on how much pain or how bad we are feeling iykwim

    we have moved to the cafe, and facebook. the original idea i think was to leave all the specific fibro/illness/directly related health stuff here, since thats what the first post outlines as the purpose of this thread, but that didnt work very well as its too hard to separate wat was considered off topic form what would not be when everything intermingles anyway.

    im sorry its confused you. do come and try the cafe again, or the facebook group if thats easier
  • kaj70
    sorry to be stupid, but can somone please send me a link of where i am meant to be please... im lost!!! x
    • jazabelle
    • By jazabelle 12th Oct 09, 8:47 PM
    • 1,690 Posts
    • 4,682 Thanks
    The cafe, just underneath this one.
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