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  • FIRST POST
    • soolin
    • By soolin 6th Sep 09, 5:17 PM
    • 63,138Posts
    • 45,577Thanks
    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 20
  • kaj70
    Ohh thankyou, its very nice to have somewhere to discuss things like this. and a cup of tea would be good with the pew!!
    • pipkin71
    • By pipkin71 28th Sep 09, 12:53 AM
    • 19,360 Posts
    • 87,170 Thanks
    pipkin71
    I have been told, several times, to fill in the forms as if it's your worst ever day. Everyone (of us that I'm aware of at least) has the better days and the horrid days, as well as the ones somewhere in between. You have to fill it in as if it's the worst tho, as the worst come round all too often and the support has to be there for when it is the worst.
    Originally posted by bigzippy
    I disagree with this bigzippy.

    Yes, many do have the worst days, the better days and the days in between, but to fill the forms detailing only the worst days and not mentioning how it was on the other days would be untruthful imo.

    I filled in the forms giving examples of what it was like on both the bad and my better days and was awarded DLA. The decision maker even states on my award that although my needs vary, it is based on my needs as a whole, which is the bad days, but I'm happy I was truthful and put how life is on the better days.
    There is something delicious about writing the first words of a story. You never quite know where they'll take you - Beatrix Potter
    • bigzippy
    • By bigzippy 28th Sep 09, 5:36 PM
    • 4,033 Posts
    • 15,643 Thanks
    bigzippy
    I disagree with this bigzippy.

    Yes, many do have the worst days, the better days and the days in between, but to fill the forms detailing only the worst days and not mentioning how it was on the other days would be untruthful imo.

    I filled in the forms giving examples of what it was like on both the bad and my better days and was awarded DLA. The decision maker even states on my award that although my needs vary, it is based on my needs as a whole, which is the bad days, but I'm happy I was truthful and put how life is on the better days.
    Originally posted by pipkin71
    I was stating what I was told, but I take your point. And I did actually state for each activity/symptom that it varies.
    "I am indelibly stained by hope and longing" - Nuts in May
    • purplecatlover
    • By purplecatlover 29th Sep 09, 9:08 AM
    • 6,585 Posts
    • 78,317 Thanks
    purplecatlover
    my last dla renewal was filled in with on a bad day/episode i need help to do task followed by giving an example. there was lots of when i am struggling with this i need this aspect, when i am struggling with that i need this etc tec. i did put a qualifier in somewhere stating that my condition was variable and there were times when i needed less help than others. it was renewed with a statement saying something like that although my condition is variable they believe the help would be of benefit to me most of the time.i think that the fact that i acknowledged that it was variable helped, as it made it clear i was not saying i was this bad 100% of the time....im pretty sure that up to date advice has changed to say that filling it in as at your worst only implies that you are always that bad, and doesnt get believed/accepted by the decision makers/computer program which they compare with.

    for help with dla i seriously reccomend dial uk or affilite if there is one in your area (can be checked on the dial uk website). or joining benefits and work and downloading thier guides to claims and apeals etc. both organisations are up to date with current rules and regs and are specific to disability benefits. cab is only good in some branches, if you are lucky, and i was given completely the wrong advice about how volunteering would affect my dla by my local cab, whereas dial were spot on with correct advice.
  • Careful with that Axe
    pcl I would be interested to hera what the correct rules are about volunteering. I've often thought of helping out at Cats Protection but ws unsure whether this is allowed or not. Also I can't commit to certain times/days as it'll all depend on how my health is that day.

    Hi kaj. Hope we can be of some help here and in the Cafe with coping with illness and just life in general.
    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
    • mesb210776
    • By mesb210776 29th Sep 09, 1:29 PM
    • 178 Posts
    • 2,161 Thanks
    mesb210776
    I would apply for DLA, but don't get down if you are rejected at first. I have just been told I don't qualify, but both CAB and my doctor believe I qualify and have said that more often than not DLA is turned down at first then awarded on appeal. The point is all you will have lost is a couple of hours, but you could gained so much more by applying xxx
    2019 win
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    2020 win(s)
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    • black paw
    • By black paw 29th Sep 09, 1:46 PM
    • 1,775 Posts
    • 1,147 Thanks
    black paw
    i think you allowed to volunteer ..but think you have to tell the job centre that you are they register on your forms,,can earn upto aswell i think 20 ...i had it done as at first i could do this ..but the doctor said no more retail for me ! so far have'nt done any as feel to poorly at times to to ok to do such day such time ..as i change feelings all the time..hopefully understand that
    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.
    • bigzippy
    • By bigzippy 29th Sep 09, 3:49 PM
    • 4,033 Posts
    • 15,643 Thanks
    bigzippy
    I think you're right blackpaw. I had a friend who was a volunteer at a charity shop whilst on disability and he was allowed to do so long and only earn upto 20 a week I think it was.

    I'm in so much pain with this ankle this arvo. I might have to have a nap... see if that helps me cope better. My stupid doctor (not normal, preferred, GP) actually said the words "how do you overdo it with ME?". He did a home visit and didn't even look at my ankle. And refused to comment on whether the spasms were normal or not, or how to cope with them - just said "however you think's best"! It's almost as good as me asking for crutches from the hospital yesterday and her suggesting Nurofen...!:confused:
    "I am indelibly stained by hope and longing" - Nuts in May
  • sammy10
    Thanks for the advice. I called for an aplication form and the man (well he sounded about 12!!!) said "Oh youve just got epilepsy, doubt you will get it for that do you still want the form"
    I told him I did and said I hadnt realised that they were so short staffed that they had the decision maker answering the phone.

    Guess I wont hold my breath then:rolleyes:
  • Invasion
    Thanks for the advice. I called for an aplication form and the man (well he sounded about 12!!!) said "Oh youve just got epilepsy, doubt you will get it for that do you still want the form"
    I told him I did and said I hadnt realised that they were so short staffed that they had the decision maker answering the phone.

    Guess I wont hold my breath then:rolleyes:
    Originally posted by sammy10
    Sammy, I'd say that you've got a very good chance of getting DLA with epilepsy, needing supervision for a substantial portion of the day would get you middle rate care, watching over in the bath or shower, whilst near hot pans/oven etc. and lower rate mobility for needing supervision in unfamiliar places if you were to need that too. If you were to fit in the night and need help for more than 20 minutes, or more than once in the night, then you might get high rate care. I'm not totally with it this eve, but I'm going to PM you something that will hopefully help with your application.
  • sammy10
    Sammy, I'd say that you've got a very good chance of getting DLA with epilepsy, needing supervision for a substantial portion of the day would get you middle rate care, watching over in the bath or shower, whilst near hot pans/oven etc. and lower rate mobility for needing supervision in unfamiliar places if you were to need that too. If you were to fit in the night and need help for more than 20 minutes, or more than once in the night, then you might get high rate care. I'm not totally with it this eve, but I'm going to PM you something that will hopefully help with your application.
    Originally posted by Invasion
    Thank you, and dont wory about not being with it Im like that all the time
    • bigzippy
    • By bigzippy 29th Sep 09, 10:26 PM
    • 4,033 Posts
    • 15,643 Thanks
    bigzippy
    I told him I did and said I hadnt realised that they were so short staffed that they had the decision maker answering the phone.
    Originally posted by sammy10
    Nice one! It's ridiculous, what he said.
    "I am indelibly stained by hope and longing" - Nuts in May
    • black paw
    • By black paw 29th Sep 09, 11:15 PM
    • 1,775 Posts
    • 1,147 Thanks
    black paw
    well said sammy good one ! have to try to remember that one !
    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.
  • kaj70
    On my application for DLA i did just write my bad days down. but i also made a statement to say that i have explained how i am at my worse. it helps and i found it reasuring that this was backed up by a Dr's letter, because on some days i dont feel to bad. so with the evidence coming from the specialist and gp i didnt feel such a frued!

    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
    • Paparika
    • By Paparika 30th Sep 09, 2:03 AM
    • 2,390 Posts
    • 2,352 Thanks
    Paparika
    I feel very isolated, i need a wheelchair to go out, but whilst i can't get the chair over the doorstep unaided, then i am kinda housebound, but then again, getting yourself a good support network is a must, we have our fibro grp on fb that keeps me going, i may not always post, and just read... but it helps that i know i am not alone
    Life is about give and take, if you can't give why should you take?
    • purplecatlover
    • By purplecatlover 30th Sep 09, 6:34 AM
    • 6,585 Posts
    • 78,317 Thanks
    purplecatlover
    cwta volunteering is allowed, must get a letter form place volunteering for stating no one else would be paid to do what your doing, your not getting paid and how many hours you will be working...that was for income support, but i assume incap benefit is the same as they count it as a change in circs. for dla unless your reporting a chage/improvement in your condition you dont have to tell them. (though cab told me the is would be fine and my dla would be looked at again and possibly reduced and if i started without telling them and they found out they would stop it). cats protection...i almost went to them too, ill tell you abut that elsewhere, and if i forget nudge me.

    sammy for many people epilepsy causes no care or supervision needs, and does not stop them fomr being able to work etc as it is controlled by meds. for the unlucky few like you its a nightmare and i agree with invasion. well done on relying thus to him on the phone.

    re isolation without the computer and internet connection i would be very very isolated. i have a few friedns around me irl, and i see them regularly but its online i come if im having a bad day. i know i couldnt cope without it, and without the general natter and support form online friends who read between the lines and help and provide distraction form my own crap.
  • kaj70
    I know what you mean about the internet and computer, i would be lost without it. it really is a lifeline for many people. msn is great to chat to your friends when you cant get out, and sites like this offeer great support. and thanks to the internet i am now doing an Open University course. just to keep my brain working.
  • bevan840
    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)
    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
    Hi Bevan,
    wow, how on earth do you manage, i have just walked downstairs and im in agony. Its hard to find relief from the pain, as to hot makes it worse, then being to cold aggrevates it aswell. i do find my tens machine very relaxing, it doesnt take the pain away, but on the right setting it can be very theraputic. have you tried one of these. i wouldnt be without mine.

    I am not sure of your circumstances, and i dont mean to be rude or sound out of order, but do you claim dla, that would help with the car issue. i managed to get the higher rate with the same illness as you, i have suffered for ten years with it. although in my medical notes the words "MS" pop up quite a bit. although it has been discussed on my occasions its not my diagnosis. i have a brain scan almost every 2 years, so its as if they are waiting for it to happen.

    I feel for you and also admire your ability to cope, although i know it is extremely difficult to carry on everyday. i dont work, i was in the local secondary scholl doing behaviour support, but i had to give it up as i got to ill again. i have 3 children and on my own it gets very lonely sometimes, and i get very down by the way things are. sorry that had nothing to do with what i was writing to you about ...sorry
    • jazabelle
    • By jazabelle 30th Sep 09, 8:14 PM
    • 1,690 Posts
    • 4,682 Thanks
    jazabelle
    Welcome Bevan


    Just so you know, daily chat for people with chronic conditions takes place in the cafe thread. It's a bit of a support group, share your woes, and general stuff! More people post there than in here. Just wanted to let you know!
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