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Bleak.

Discussion in 'Finances, Work, and Disability' started by Stitch, Jan 23, 2012.

  1. Stitch

    Stitch

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    So, I don't really know if this entirely the right place for this post to go, but why not. I'm so upset right now, I can't even breathe.

    I am one of the lucky ones as this condition goes. Having been worse with it, I feel blessed to have some health right now, to be able to do a little more than stay on the sofa. I'm in so much pain all the time with it (my hands/arms/fingers are particularly bad) but I WANT to be well so badly, I'll try ANYTHING often pushing things and making things worse.

    On bad days my legs are jelly and I walk with a cane, but one day a week I put on a pair of skates, roll up and down a hall a few times (it's easier than walking and is good for the core muscles) and this incorporates a little gentle exercise into my week that I feel I could credit the little health I've clawed back to. It's a roller derby team and they're very accommodating to my illness. In exchange for their help, I maintain their website.

    I am aware that my ESA is to be reviewed in April and I'm fairly sure I won't qualify as I am not as bad as I was last year. I thought I'd start now with finding some work as I HATE not doing anything and I am in the 18-24 bracket which has crazy high unemployment as it is. A PERMANENT 20 hour a week job as a Museum Assistant came up, basic sitting at the front desk role and I went for it via a company called Manpower. 52 other people went for it and I got it! I went in for my first day only to be told that it's TEMPORARY, 3-4 weeks until they change up and get a casual in and because I'd be earning over the permitted work, my benefit would stop.

    It was 7.20 an hour for 4 hours of an afternoon, just sitting, reading as the museum was so quiet and maybe answering the phone twice in that time. Wages are higher in the south so finding something that meets the permitted work requirements of 16 hours a week (if you work dead on 16 hours, that's too much) and at minimum wage to meet the 97.50 a week limit is nigh on impossible. Lower wage work consists of wholly manual work which is impossible with this condition :eek:(

    I'm so angry as I could've managed the job itself. So, I quit at 3 days so as to not exceed the "permitted work" limit but I still fear that this will have messed things up and have negative repercussions.

    So help me, I'm not even depressed, but ending it all just seems exceedingly logical of late. I am not sick enough to be "disabled" but I am not well enough to be a valid member of society and I am SO SICK of the in between.
     
  2. Esther12

    Esther12 Senior Member

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    Sorry to hear about all that Stitch. Being ill, and having to work within such a stupid and demeaning system is really difficult. I'm really sorry that I don't have any helpful advice for you, but just wanted to send my best. Hopefully things will improve for you soon.

    Pilates can be helpful for core muscle strength, and might be more convenient for times other than when you can skate? After a frustrating experience like that, I'd advise you trying to make some time to do some pleasant and relaxing things (There's a thread of comedy clips here, but you may prefer to do something else). Hopefully you'll feel a bit less frustrated by this experience soon, but it is a ridiculous situation to be in. Good luck with it all.
     
  3. CJB

    CJB Senior Member

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    Oregon
    :hug:STITCH:hug:
     
  4. currer

    currer Senior Member

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    Stich you are ill.

    It is the "benefit" system that has been deliberately created that is denying you recognition of this. Do not accept this false evaluation of your condition. You deserve more help than the benefit system will allow you - but that is because it has been deliberately created to block support that used to exist for the sick and has been made a discriminatory and deliberately unjust system.

    You need to give yourself credit for having to fight your way through such an unfair and inhumane situation. But do not blame yourself. Try to get some welfare advice. There is a good website "Benefits and Work" for those in the UK.
    http://www.benefitsandwork.co.uk/

    Do not give up. Make contact with other people locally in the same situation. The benefit system in the UK has become so unjust that I do not think it can continue much longer like this. I hope things will change soon. Unfortunately, it is your generation that is bearing the brunt of all these right wing changes.
     
  5. justy

    justy Senior Member

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    Hi Stitch, so sorry to hear of your situation. Are you on income based ESA, or contributions based? if its incme based then you should'nt lose it at review unless you are substantially better. Are you familiar with the (dis)ability scale
    http://www.drmyhill.co.uk/wiki/CFS_Ability_Scale_-_a_rough_measure_of_how_disabled_you_are

    I think that sometimes we dont recognise how ill we are. Another option is to ask to speak to the disability advisor at your local jobcentre plus office. If you really are genuinely ready for work then they can help you to find work that is suitable for your level of disability - there are also schemes in some areas to support disabled people in their work, for example discussing reasonable adjustments in your place of work etc.

    I know myself how terrible frustrating it all is. I get contributions based ESA and DLA, mt husband does work, but is very poorly paid - we cant manage as it is and i will lose my ESA in April because of the new time limit. We are already in debt and trying to sell our much loved home so that we can afford to live ( the basics) of course if i could work it would help and we could probably stay - BUT although i am much better than last year i havent found a job yet that will take a woman with anxiety issues who just HAS to rest whenever she needs to and i cant do anything remotely strenous.
    Please keep posting here, there are people that care. I am concerned about your statement that 'ending it all seems logical' If you are making plans to do this then i seriously urge you to talk to someone about it. There are lots of good phone lines that will help you to talk through your feelings.

    :hug: Justy.
     
  6. SickOfSickness

    SickOfSickness Senior Member

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    Welcome to the forum. Sorry about this job turning into temp, and the evil benefit limit. Sounds terrible after you went through all that. I agree, being in the middle is just unfair, the system fails.

    I am frustrated like you, I just want energy so I can work and have a life. So many of us are hard workers and bright and creative and we are forced to just lay on the sofa.

    Maybe quitting after 3 days can be used in your favor for ESA. You can claim you had to quit because of pain and other problems, and it was too much to handle even those low hours where you mostly sat there.

    Maybe you can find some cash paying unreported work. I know it's hard.
     
  7. markmc20001

    markmc20001 Guest

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    Shoot buddy. I kind of know where you are coming from. One day at a time, things will hopefully get better.
     

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