Hello Im new and just looking for advice

happy_feet
happy_feet Member Posts: 93
Hi all,
Im 43, just been diagnosed with arthritis and really upset as Ive always been very active and now feel like a cripple, I cant believe how fast this progresses! Ive known for a while something was wrong and years ago went to the docs and had blood tests but nothing showed up, this time I had Xrays and blood taken, and my Rhumatoid factor is raised and the x rays showed arthritis.
My main problem is the Jobcentre, I have epilepsy (controlled) and depression and went on the sick last year but was told after the medical I am fit for work, and to receive jobseekers allowance I have to be actively seeking work - which I have been doing but I am finding it a struggle to go on...I didnt realise you had to chase up every job they offer you from the screen and they have stopped my money because I have failed to follow one up, so now I have no money and have electric and gas meters, which means I will have no gas, electric or food. Sometimes I feel so low, and in pain I find it hard to even get through the day but I cannot tell them at the jobcentre because I have to be actively seeking work, yet I am not ill enough to be on the sick. I have no painkillers yet and the next available appointment at the doctors is two weeks, I cant take brufen as I get terrible stomach pain (Previously had an ulcer)
Can anyone advise me what I can do please? Im at a loss because if I tell the jobcentre I am ill sometimes they will stop my jobseekers allowance, yet they wont let me claim sick, although they dont know yet about the arthritis.
Thanks in advance for any replies.

Comments

  • dorcas
    dorcas Member Posts: 3,515
    edited 30. Nov -1, 00:00
    Oh Wendy! what a terrible time you are having...so much going on for you....you need to get help today...
    Need to prioritise...you can't be left without food, elec etc. Phone CAB right away...tell them what has happened and that you need their help with getting immediate money/ Jobcentre.. If you don't feel up to it get a friend to do it for you. Once you get CAB involved everything else will fall into place.

    Phone doc surgery..they must have emergency appointments and you need to have pain relief. Could also ask doc for letter confirming your diagnosis..am sure he would be horrified at your predicament and want to help.

    One step at a time lovely. We are here for you. Irisx

    Wish I was closer I'd be right over to help xx
  • happy_feet
    happy_feet Member Posts: 93
    edited 30. Nov -1, 00:00
    Thank you so much Iris. Im going to call in to CAB today, they are stopping my money from 13 November to 24 November, Im not due a payment yet but its all spoken for when I get it, and I have just enough gas and electric to see me to my next payment each fortnight. I struggle to start with as I have £20 rent arrears each fortnight, and I got internet at £20 a month thinking it would help me find work, I have to pay that as its through my sisters bank and I dont want to start letting anyone down or causing trouble for them. The pain I can cope with it seems the last of my worries at the minute, I just feel really down about the system, its like youre punished for being ill. When I went for the medical last year the doctor was awful he kept saying "Well why dont you find yourself a job you might feel a bit better" I wish it was that easy! I dont think I could go through that again.
    Thanks again for the kind words.
  • dorcas
    dorcas Member Posts: 3,515
    edited 30. Nov -1, 00:00
    Hi again Wendy,
    How'd things go today? did you get help from CAB?
    Your experience of how people with arther are treated by some unfeeling docs is not unique...when you read posts from others you'll see what I mean..

    Good thing is that there is help & support through the forum and the helpline folks are great.

    Don't know how long you have been suffering with arther but noticed you also have epilepsy... have you thought about applying for DLA? CAB could do the application with you. Although not an immediate solution I thought this might help you financially in the longer term.

    Also, at moment you are signing on but with your confirmed diagnosis & other health issues you might be better getting sick note from doc cause sounds as though you are struggling with the pressure of jumping through the jobcentre hoops...after I think 16wks you would then go on to Employment and Support allowance....
    I am definitely not an expert in this, but CAB can help you through this too....

    I do hope you got some help today... let us know what's bin happening.

    I'm sure there will be others in the forum along soon who can also offer words of advice and support. irisx
  • happy_feet
    happy_feet Member Posts: 93
    edited 7. Feb 2010, 15:50
    dorcas wrote:
    Hi again Wendy,
    How'd things go today? did you get help from CAB?
    Your experience of how people with arther are treated by some unfeeling docs is not unique...when you read posts from others you'll see what I mean..

    Good thing is that there is help & support through the forum and the helpline folks are great.

    Don't know how long you have been suffering with arther but noticed you also have epilepsy... have you thought about applying for DLA? CAB could do the application with you. Although not an immediate solution I thought this might help you financially in the longer term.

    Also, at moment you are signing on but with your confirmed diagnosis & other health issues you might be better getting sick note from doc cause sounds as though you are struggling with the pressure of jumping through the jobcentre hoops...after I think 16wks you would then go on to Employment and Support allowance....
    I am definitely not an expert in this, but CAB can help you through this too....

    I do hope you got some help today... let us know what's bin happening.

    I'm sure there will be others in the forum along soon who can also offer words of advice and support. irisx
  • chris7
    chris7 Bots Posts: 2,696
    edited 30. Nov -1, 00:00
    Wendy

    I'm so sorry to read this and see how much you are struggling. I really don't understand how you can be treated so badly by the Jobcentre though know from other posts you are sadly not alone. Please never apologise for long posts, it does help a little to get it in writing. I have read your posts through several times and it sounds to me like you are certainly not fit for work at least at the moment. Do hope you can get a doctors appointment soon and that they can offer some support. Or as Iris suggests the CAB can help. I can't advise as am fortunate to still be hanging on to my part time work, but do sympathise over the money issues. I am sure others will be able to offer practical advise when they catch up with this one, but I just wanted to send a hug in the meantime.
    Try and be nice to yourself today, take care.
    Chris
  • dorcas
    dorcas Member Posts: 3,515
    edited 30. Nov -1, 00:00
    Hi Wendy,

    Don't apologise...ever.. for a long post. Everyone at times needs to get out what's been happening to them, especially when things are tough and it helps us others support and understand you better. ':)'

    Arther makes you tired and lethargic and when you add stress to the mix then you#re bound to feel washed out.!!

    having read your post it seems to me that you have real guts and determination in there...so tap into that when you need it most...sometimes when we feel overwhelmed we forget that we are not just our arther!

    I hope you've had an OK kind of day...and that tomorrow will be better. keep posting ':wink:'
  • happy_feet
    happy_feet Member Posts: 93
    edited 30. Nov -1, 00:00
    Hi,
    Thanks again for the kind words and advice. Youre all very patient. Had a bad day today pain wise Im sure its this weather, took brufen and Im not meant to take it I had an ulcer years ago, I didnt care though the pain was awful and at least the brufen took the edge off it.
    Something else I was wondering, Ive heard the Medical centres that deal with ESA tell you to take more, or different meds if theyre not working enough to push you back into work? Do you still get the flare ups when the meds are working? And do you have to take the meds continuosly or just when a flare up happens? Its the fatigue thats getting me as well as the pain, the thought of being pushed into looking for full time work is filling me with dread when I feel like this. I know I cant do it. The doc offered me Codeine and that will wipe me out totally so I said Id think on it, but not got an appointment for ten days.
    Thanks again and really sorry to be a whinge I promise Im not like this all the time, Im just so lost and confused with it all :?
  • dorcas
    dorcas Member Posts: 3,515
    edited 30. Nov -1, 00:00
    Wendy,
    it's really concerning that you are in such pain and yet been left without effective painkillers.....worse that you have had to resort to taking something that you know can affect your stomach ':('

    Am no doctor but a bit surprised about maybe starting on codeine as I thought that can also irritate the stomach? maybe others on the forum can comment on that from their own experience.

    No matter what, you need to see a doctor and get your meds sorted out, including something to deal with the current flare up.

    Have you been referred to rheumatologist? if not perhaps you should ask to be referred.. you would get the advice and info. you are looking for about your condition and about what there is available to help you (types of meds) and when and how often to take them (varies depending on what you're on).

    can't answer your question about the ESA and about potentially being told by them to take other meds....not had that experience.

    CAB and the doc on Monday would be my advice in the short term to deal with your immediate needs....once you get things started it won't seem such a struggle. hope you can get some rest tonight. ':|'iris x
  • happy_feet
    happy_feet Member Posts: 93
    edited 7. Feb 2010, 14:32
  • ritwren
    ritwren Member Posts: 928
    edited 30. Nov -1, 00:00
    I have only just seen your post Wendy. You're having such a tough time I'm not surprised you're exhausted. You've had some great advice from here and I'm glad to see you're going to GP monday.

    You really do need to get a sick line from him and don't worry about him/her thinking you don't want to work. There is no way you should be seeking work at the moment and it's only adding to your exhaustion and not doing you any good at all. So, get your sickline for at least a month. Although you have had an ulcer in the past you can still get good pain relief from your GP so do make sure you explain just how bad your pain is. If you're not already on something to protect your stomach you can get something from your GP too. For sure I would insist the GP referr to Rheumatology dept, you may have to wait a while for an appointment but at least you'll be on the right track.

    I'd make another appointment to see CAB, perhaps a different person and find out what benifits and help you can get while you are off sick. You are a very strong person, you would'nt have gotten this far if you were'nt and it's your disease and the system that is bringing you down. Stay strong and believe me when I say you are not a malingerer or faking and your GP will see this. Take some time to rest your mind as well as your boday and get some strong painkillers. You should see an improvement soon I hope.

    I find it helps to make lists, writ things down in point form when going to see GP it might help you too. Good luck and do let us know how you get on.
    Bye for now rita
  • happy_feet
    happy_feet Member Posts: 93
    edited 7. Feb 2010, 14:32
    ritwren wrote:
    I have only just seen your post Wendy. You're having such a tough time I'm not surprised you're exhausted. You've had some great advice from here and I'm glad to see you're going to GP monday.

    You really do need to get a sick line from him and don't worry about him/her thinking you don't want to work. There is no way you should be seeking work at the moment and it's only adding to your exhaustion and not doing you any good at all. So, get your sickline for at least a month. Although you have had an ulcer in the past you can still get good pain relief from your GP so do make sure you explain just how bad your pain is. If you're not already on something to protect your stomach you can get something from your GP too. For sure I would insist the GP referr to Rheumatology dept, you may have to wait a while for an appointment but at least you'll be on the right track.

    I'd make another appointment to see CAB, perhaps a different person and find out what benifits and help you can get while you are off sick. You are a very strong person, you would'nt have gotten this far if you were'nt and it's your disease and the system that is bringing you down. Stay strong and believe me when I say you are not a malingerer or faking and your GP will see this. Take some time to rest your mind as well as your boday and get some strong painkillers. You should see an improvement soon I hope.

    I find it helps to make lists, writ things down in point form when going to see GP it might help you too. Good luck and do let us know how you get on.
    Bye for now rita
  • jeanniep
    jeanniep Member Posts: 42
    edited 30. Nov -1, 00:00
    Hi wendyx, sorry you are having such a hard time of it at the moment.

    Have you ever seen a DEA (Disability Employment Adviser) at the Jobcentre? They should be able to offer you much more support and help than the frontline staff who usually take your signature. They should also be able to look at your Jobseekers Agreement and review it. It seems a bit tough to me, with having to contact Jobseekers Direct 7 times a week as well as all the other things. You are allowed up to 2 periods of sickness a year while claiming JSA.

    To clarify the procedure, if you are given details of a vacancy and they put "matching" on the system, then if you don't follow it up they can put on a sanction (stopping your money). If they only put "jobpoint", because you have found the job yourself through the machines, then they can't sanction you.

    I would apply for DLA as soon as you can, if you haven't already, as if you get that even at a low rate, that will open up more benefits such as working tax credit for when you do start work in the future. I know it might seem impossible now, but you won't always feel as bad as you do now. When you are officially "disabled", you can also get working tax credits if you are self-employed - remember this if you start your dog-grooming business. There can also be help through the jobcentre to become self-employed, depending how long you have been getting JSA. JobCentre may have DLA forms.

    Good luck with all this
    jp
  • jeanniep
    jeanniep Member Posts: 42
    edited 30. Nov -1, 00:00
    Hi
    Forgot to mention Employment Support Allowance (ESA). Were you claiming this when you were "on the sick"? if they have stopped it, have you appealed against the decision? I have heard that many people have had their claim stopped, but when they appeal, it has been reinstated. Not sure of the percentage, but someone who works for CAB told me this.
    jp
  • happy_feet
    happy_feet Member Posts: 93
    edited 7. Feb 2010, 14:30
    jeanniep wrote:
    Hi wendyx, sorry you are having such a hard time of it at the moment.

    Have you ever seen a DEA (Disability Employment Adviser) at the Jobcentre? They should be able to offer you much more support and help than the frontline staff who usually take your signature. They should also be able to look at your Jobseekers Agreement and review it. It seems a bit tough to me, with having to contact Jobseekers Direct 7 times a week as well as all the other things. You are allowed up to 2 periods of sickness a year while claiming JSA.

    To clarify the procedure, if you are given details of a vacancy and they put "matching" on the system, then if you don't follow it up they can put on a sanction (stopping your money). If they only put "jobpoint", because you have found the job yourself through the machines, then they can't sanction you.

    I would apply for DLA as soon as you can, if you haven't already, as if you get that even at a low rate, that will open up more benefits such as working tax credit for when you do start work in the future. I know it might seem impossible now, but you won't always feel as bad as you do now. When you are officially "disabled", you can also get working tax credits if you are self-employed - remember this if you start your dog-grooming business. There can also be help through the jobcentre to become self-employed, depending how long you have been getting JSA. JobCentre may have DLA forms.

    Good luck with all this
    jp
  • ritwren
    ritwren Member Posts: 928
    edited 30. Nov -1, 00:00
    What a carry on at the jobcentre. There's no way they should be treating you like this and I hope you get a sick line for at least a month, apply for DLA with the help of CAB experienced benifit officer and any other benefit they can get for you. It might be worth your wile to get in touch with the helpline who's number is at the top of this page. They could also point you in the right direction.
    I do so very much hope you get sorted soon.
    bye for now
    rita
  • happy_feet
    happy_feet Member Posts: 93
    edited 30. Nov -1, 00:00
    Hi again,
    Just another quick update...doctor gave me a sick note for three weeks, he wrote on it "Joint pain" I was a bit shocked at that I hope that will be ok for the Jobcentre? and he gave me Codeine, 15mg and said take one or two up to four times a day. He said theres nothing else to do but wait for the appointment at the clinic and that they would get in touch, but he says to contact him if I get worse.
    On his computer screen it said something about osteo in the Xrays, oh and something about cysts in my hips? He said something about wear and tear but the fact I have raised Rhumatoid factor could be that I have either rhumatiod or Polyarthritis? Im so lost and Im scared about having an autoimmune thing, God knows whats going on here. :(
    Does anyone know how long it takes for the Rhumatologist to get in touch? Roughly? I have no idea and havent a clue what to expect, do they do all seperate tests to find out exactly what kind of arthritis you have?
    And what do I do if I need another sick note? Will the doc give me one or do rhumatology give you them? What if Im ok then have a flare up a week after I come off the sick? Do I have to go through the whole palaver of changing my claim again?
    Sorry for all the questions I hope Im not being a nuisance here. :?
  • ritwren
    ritwren Member Posts: 928
    edited 30. Nov -1, 00:00
    Please don't worry, you're not being a nuscience (sp) at all. I can well understand that this is all new for you. I will try to answer your queries as best I can.

    That's great you got a sick line. If you are no better when your time is up then simply tell your GP and get another. Some Dr's and others describe Osteoarthritis as "Aches and pains" "wear and tear" "joint pain"and use other dismissive terminology. :roll:

    When I was referred last year to Rheumatology my appointment took nearly 4 months to come.Different places vary in the amoung of time it takes but this I think, was about average. It was a waste of time and the Consultant was very dismissive. The Rheumy I have now is a different one.

    On your 1st appointment they may check your urine, do your blood pressure, temperature and pulse or they may not. They may do some blood tests on you and they may send you for x rays. At my first appointment with the not very nice Rheumatologist they did all these things but clinics may vary. They will also take a full medical history.
    HOpe this helps to reassure you.
    Glad to hear you have some stronger painkillers and hope they work.
    rita
  • happy_feet
    happy_feet Member Posts: 93
    edited 30. Nov -1, 00:00
    ritwren wrote:
    Please don't worry, you're not being a nuscience (sp) at all. I can well understand that this is all new for you. I will try to answer your queries as best I can.

    That's great you got a sick line. If you are no better when your time is up then simply tell your GP and get another. Some Dr's and others describe Osteoarthritis as "Aches and pains" "wear and tear" "joint pain"and use other dismissive terminology. :roll:

    When I was referred last year to Rheumatology my appointment took nearly 4 months to come.Different places vary in the amoung of time it takes but this I think, was about average. It was a waste of time and the Consultant was very dismissive. The Rheumy I have now is a different one.

    On your 1st appointment they may check your urine, do your blood pressure, temperature and pulse or they may not. They may do some blood tests on you and they may send you for x rays. At my first appointment with the not very nice Rheumatologist they did all these things but clinics may vary. They will also take a full medical history.
    HOpe this helps to reassure you.
    Glad to hear you have some stronger painkillers and hope they work.
    rita

    Thanks Rita,
    Sorry to hear about your first consultant, how did you manage to get another did you tell your doc you werent keen or do you see different ones anyway? Sounds an awful thing to say but I wish the ones that are dismissive could have just one hour with this pain and they wouldnt be so quick dismiss anyone again.
  • ritwren
    ritwren Member Posts: 928
    edited 30. Nov -1, 00:00
    No that was it I was discharged from Rhumy and it was up to my gp to manage my "wear and tear" Told I had nothing to worry about. I asked for and recieved copies of the letters that the rheumy sent to the GP and he described it as such and said I was reassured.
    My GP then looked after me and my OA until I got so I could'nt even walk and ended up in hospital in august past where I was properly diagnosed with PA as well. I am under the care now of the consultant who happened to be on call that day and he's been pretty good so far.I started on methotrexate right away because of my condition and that's it up until now. The whole thing still upsets me and I think always will.

    rita
  • happy_feet
    happy_feet Member Posts: 93
    edited 30. Nov -1, 00:00
    ritwren wrote:
    No that was it I was discharged from Rhumy and it was up to my gp to manage my "wear and tear" Told I had nothing to worry about. I asked for and recieved copies of the letters that the rheumy sent to the GP and he described it as such and said I was reassured.
    My GP then looked after me and my OA until I got so I could'nt even walk and ended up in hospital in august past where I was properly diagnosed with PA as well. I am under the care now of the consultant who happened to be on call that day and he's been pretty good so far.I started on methotrexate right away because of my condition and that's it up until now. The whole thing still upsets me and I think always will.

    rita

    OMG Rita how did they miss that? Did it not show in blood tests? You would think with them being specialists they would get your diagnosis right, and of course its something to worry about when youre in that kind of pain. Is PA Psorisis Arthritis? I hope youre feeling a bit better with the meds x

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