Hello I am new and worried

Hi Guys.. I am grateful to have found this forum. I hope you donot mind, I have many questions to ask, I am alone, have been for too long, and donot feel like I can cope with anything else, doing it alone, so I hope you donot mind me racking your brains for advice. I have had SLE for nearly 12 years, with all that living with Lupus entails, with it getting progressively worse now with major organ involvement. Last week I had an envelope arrive saying that they would ring me about the new ESA, and WCA and how that would affect me, I was surprised and really worried because, the DWP have not phoned me for many years, anyway Friday morning they phoned and I wasn't able to get to the phone in time, infact when i got to the phone they put it down, that same day they phoned again after 2pm, Again i wasn't able to get to the phone in time. My first question is, do i have to answer their calls?. What should i say ?, does anyone know what they will ask?. Is this call a test as well?. To say I am very stressed is an understatement . I am trying hard to keep calm, and gather as much info as I can, but its beginning to overwhelm me. Will really appreciate any advice that you can give.

4 Replies

  • Hi,

    I might be able to put you mind at ease. Are you on what was called the incapacity benefit. It has now changed to ESA this is the new government initiative to get people back to work. I have been I'll for nearly a year and my SSP ran out on the 28th week so had to claim ESA. I went for my first meeting I think May. They just want to assess your ability to work and whether they can help you back to some sort of work with support. As you know government wants people off benefits. Thee lady I went to see was nice and understood but when I asked her why have to attend meetings as didn't my doctors notes prove that. She said its not people like me who maces a genuine reason for being off work but people who abuse the system who claim benefits fraudulently . I'm not saying g that they are there to scrutinize your every word as they have to do a job. But the lady I saw was good she asked how she could support me. In next 4 months I'm going back for another meeting she is going to send me on a confidence building course to help self esteem as lost my mojo a bit with all this illness. Ring them back and see what they want? It might be just to see how they can help and if your poorly you have no worries as doctors will back you up and they can see for themselves.

    Take someone with you to the meeting if they are ringing to set one up. That way you have support for more than one reason. It does seem scary and its best to have someone who knows how you are day to day. I took all my medical details. Doctors letters and medication etc.

    I hope things go well.

    Andrea x

  • Hi Andrea, Thank you for your kind reply. I have not been able to work since i was diagnosed, It has never been under control, and have kind of been having major flares very frequently, or for example heart ,kidney and lung involvement coming up, all at the same time . I am alone and deal with it alone, I have been housebound and bed bound on and off for years, and have kind of become a hermit, and do not have anyone who has been around me day to day, when i cannot get out bed, I do this alone.

    If I cannot get up to go to the toilet, or go downstairs to make a cup of tea or water, or get some food, I wait in bed untill i can get up, no matter how long than takes. It has been like this for years. So I donot know what to do, Most people who hear that i do this alone, must feel that I am weird, but turning to my family really causes more issues and dramas and stress. I have friends I can turn to, but have not wanted to be a burden, So I do this mostly alone. I have normal days, where things are hard, but not as hard. i can get up go to the loo, make some covent garden soup, go to hospital, I have to pace myself, but these days completely exhaust me and usually mean I have to pay for it , for the next few days.

    I am very worried, there has not been encouraging stories coming from Atos and DWP contact so far, from people who are in a worse position than I am health wise, the thought of having to battle "the big guns", fills me with fear, as i donot know if I am strong enough mentally or physically. Thank you again for taking the time to reply. I will try to stay optimistic x

  • Hi, i can relate to your life as that is also how i lived for years. Nowadays i get a bit more help esprcially at weekends. I think if you can tell one or two of your closest friends just how much you struggle with this illness they might just offer a bit more help. I hsve never bern one to ask for help but fortunately an old and new friend have been a life saver to me as i know i couldn't cope alone especially with dealing with paperwork and the ESA and DWP.

    If possible get in touch witb the citizens advice. They have been a great help to me and cometo mu house to help. I have been on disabilitu for years with Lupus and organ damage. Recently i have been put in the work related activitu group for three years. Luckily i don't have to go back for three months. I am appealing the decision and the citizens advice are doing most of the work. Getting in touch with my.doctors for letters etc. I do feel for you. It is horrible being so isolated. Having a couple of good friends have changed my life. My family have never helped.

    We are here for you. Please keep in touch and if you need to talk i'm here for you. Try not tk worry.too much about benefits as you definately deserve them. Write all your problems downas you remember them and keep a diary of symptoms if possible. As we usually jave a bad memory it is good to keep notes of how this illness effects us from day to day. Praying you get the help you need and deserve.

    Love from Jacqueline

  • Jacqueline, thank you so much for sharing some of your life with me, which sounds so similar to mine in some ways. Sometimes its easy at times to think " I'm the only one", which in turn isolates you further. I am going to take a leaf out of your book, and give an old friend a set of keys, so she can pop in and see if i need anything. I need to reach out more, its just been so hard to do up to now . Thank you for reminding me about my diary, I have kept one, on and off especially when things have been really bad, because I go to the Rheumy and they ask how I am, and I say I am fine, because I am not thinking about how I couldn't move a few days ago etc, only how I am feeling that minute. So now I take the diary with me :o)

    I am definitely going to call the CAB tomorrow.

    I am so sorry that they have put you in the WRAG, I find it inconceivable that they read a persons medical notes, and their answers then assume they know better, It is great that you have the support of friends and the CAB, it will take some of the pressure off of you, its hard enough managing and concentrating on living with any illness or disability without the added pressure of this. I pray your appeal goes quickly in your favour, and that your health remains/gets on an even keel, through out the process. Thank you again. Take care xxx

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