i need help and advice

mumoftwoboys
mumoftwoboys Member Posts: 24
edited 21. Jun 2012, 17:21 in Living with Arthritis archive
ive been seeing a rheumy for 4 yrs and still none the wiser. he thinks its sero negative inflammortory RA. ive been given different meds to try and thats it. im suffering at work and at home with pain and limited mobility. although some days are ok. ive not been given any advice or help in anyway. could i speak to an occu therapist or social worker or citizens advice or anyone else. im sooo peeved off been like this and i dont know what to do next. i had a mouthful off someone at work this morning as i missed a day as i couldnt even stand up. what am i supposed to do. i need the money.
im really depressed and just keep crying im sick off it all the time.

Comments

  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    oh dear hun.
    Well at least you have found the right place.. This forum is great for advice etc.
    There is a helpline at the top of the page, maybe they could get you on the right path?
    Your work should not be allowed to treat you badly, you didn't ask for this disease..
    And you're suffering enough without the grief from them.
    I can't advise with the work stuff but I really hope you get something sorted out.
    And feel free to get it all of your chest on here. We all understand.
    Best wishes..
    Let us know how things go, keep posting :D
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    Hello mumoftwoboys and welcome to the forum. I’m afraid, like Tony, I’m no good at advising on the work front. However you ask if you could speak to an Occupational Therapist, a Social Worker or someone from CAB. I’m sure you could speak to any or all of them but why not start with out own Helplines? As Tony said, the number’s at the top of the page.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • mumoftwoboys
    mumoftwoboys Member Posts: 24
    edited 30. Nov -1, 00:00
    thanks for that. i think i might get the courage up before i call the advice line as im feeling really low at the moment and i will proberly just start balling on the phone and they will not understand me. i have an appointment with welfare rights tomorrow and im goin to see citizens advice.
    i feel better knowing that i can come on here to read other peoples experiences and im sure you will hear a lot more from me. i will be on here a lot from now on.
    thank you
    chelle
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    well, I hope you find this place as helpful and friendly as I do hun.
    I'm sure you'll get the courage to ring them when you're ready..
    God luck :wink:
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP
  • earthspirit
    earthspirit Bots Posts: 278
    edited 30. Nov -1, 00:00
    where i am, i found welfare rights at the local council far more helpful clued up and on the ball with the help and support they gave me, than citizens advice who in my case were totally useless as i did not look ill at the time (i think)
  • ruby2
    ruby2 Member Posts: 423
    edited 30. Nov -1, 00:00
    Hi
    I have found the occupational therapist very knowledgeable re all aspects of work matters so its well worth trying to get a referral through the rheumy department.
    Many of us here have turned to the helpline they are trained to deal with our emotions don't be worried about that, do get in touch with them.
    Good luck with it all
    Ruby
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
    Hi mumoftwoboys
    Sorry I cant help with the work thing, but has for the helpline, I have balled my eyes out a couple of times, they really are used to it.
    You have us lot to talk to now, so please dont feel you have to go through this on your own.
    I do wish you well with everything, good luck with the work issues x
    Love
    Barbara
  • julie47
    julie47 Member Posts: 6,041
    edited 30. Nov -1, 00:00
    hi mumoftwoboys :)

    just wondered how you feeling today?
    Hope that you are feeling reasonably well and that you may have managed to speak to the helpline for advice.

    Love Julie PF x
  • mumoftwoboys
    mumoftwoboys Member Posts: 24
    edited 30. Nov -1, 00:00
    thanks for asking, im still feeling crap. been to see CAB this morning and dont know why i bothered. im soo fed.
    I work in a shop, theres the boss (not there most of the time) and 4 other women. the one who employed me said yesterday that im not a team player, im not commited, i dont want this job and its the wrong job for me. ive been there since march so not there long and i had a few hours off cos my husband was taken into hospital and ive missed 1 day when i couldnt even stand up. they really dont want me there. they only took me on to cover holidays and sickness cos they didnt want the extra shifts.
    my husband told me to go back into work but i really dont want to be there with them ignoring me, talking about me and giving snide comments. i have enough trying to stay strong with the pain im not strong enough to put up with that aswel. i keep crying when i think about it. if i leave i wont get any help. i cant get ESA cos my husband works park time. and i cant claim job seekers cos my husband works. what help can i get.....NOTHING...
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Have you thought about applying for DLA? That is not an income-based benefit, the-powers-that-be are increasingly reluctant to give it to those who would benefit but it could be an option. It takes time and energy though to fight the battle and I suspect you are too low at the moment to cope with that, let alone anything else.

    Please ring the Helpline, they are used to people bawling their eyes out, they will wait and listen until the sobs subside, and may well be able to talk you through your fears and worries. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • lululu
    lululu Member Posts: 486
    edited 30. Nov -1, 00:00
    Ring the Helpline chelle they are very good. You also need to ring Occupational Health.
  • mumoftwoboys
    mumoftwoboys Member Posts: 24
    edited 30. Nov -1, 00:00
    im building up the courage to ring the helpline. Dont know why i need courage think im been stupid. what do Occ Therap do. how will they be able to help. im not bothered about changin things at work i just dont want to be there full stop.
    ive applied for DLA last year when i thought i had Fibromyalgia and again this year.both times knocked back. im lost, ive been seeing rhuemy for 4yrs and still dont know whats going on.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    You have a diagnosis of sero-negative inflammatory RA so that is a starting point. inflammatory arthritis can be a difficult beast to identify - I was classed as an 'inflammatory arthritis' case for a few years, then my skin helpfully obliged with a bout of psoriasis and ta-dah! New label but nothing else changed, not the treatment nor the effects of the disease. I hadn't realised that you had already applied for DLA so I apologise for that less-than-helpful suggestion.

    You are not being stupid in thinking you need courage to ring the helpline. It's a big step, to talk to people who you don't know about something so personal that is causing you so much distress but they can help with listening and may well have some pertinent information for you. Another new person here, Avrielle, has just posted about speaking to them and they have helped her by the sounds of things.

    As for OT, I have no idea about them as I have not yet come into contact with that side of things. That may be something to talk to your GP about - how helpful and or supportive is he? Mine leaves the rheumatology side of things to the hospital but does help on other fronts where possible. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • ruby2
    ruby2 Member Posts: 423
    edited 30. Nov -1, 00:00
    Hi M
    My OT sorted out ant gadgets that may help me do 'anything' I was finding difficult and painful.
    They are usually the people who make you splints and try to help you adapt how you do things.

    She is also mine of information regarding employment laws and what benefits to apply for, so no doubt they will have information about leaving work, retiring.

    She has advised me on changing jobs or rights when applying for jobs , sickness entitlements and rights when you are sick with a long term condition.

    I would recommend seeing one.

    Good luck.
    Ruby
  • joollywoolly
    joollywoolly Member Posts: 8
    edited 30. Nov -1, 00:00
    hi mumoftwoboys i'm sorry to hear u r feelln so miserable. I understand how hard it is 4 u. I have 7yr old son & 4yr old daughter and have had seronegative RA for 5yrs. From wot i can gather sero-ve can be somewhat difficult to manage coz we dont have rheumatoid factor in blood its harder to diagnose. I do think u do NOT need this extra stress with IDIOTS u work with! We are covered in employment by the disability act & it is against the law 2 discriminate against us. We r entitled 2 time off 4 appointments etc! Dont let them bully u! Do u have a rheumatologist nurse specialist coz mine has been a tower of strength 2 me. If so ask her 2 refer u 2 OT they r very gd usually with tips on making life a bit easier. She could also refer u 2 physio. Fitn in appointments wih kids can b hard but worth it and u know u actually feel like someone cares!! I have had 2 retire from full time work recently at the ripe old age of 44 but we manage & life is a wee bit easier although still v painful! Can u claim contribution based ESA? Please keep your chin up and dont let the blighters get u down!

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