I feel so at a loss and alone. I have been persevering for the past 2 years trying to get the health system to understand.

[jengrian]

I used to work but have been unable to do so for the last 6 years. Incapacity benefit has been taken off of me even though I can't even do some the most basic things for myself such as brush my hair and tidy up (not heavily clean) my house. I am unable to make any plans as I always drop out at the last minute because I feel ill. The last thing that they told me to apply for (DLA) was not successful. I asked for reassessment which was also denied. So no job, no help. I find it unable to keep a job because I may be able to do 1 or 2 days a week from time to time but I can't do them every week on the same and time. I am now exhausted. I can't go on. What can I do? Any input would be wonderful.

[Carolha]

Hello, I feel so sorry that you have been treated this way as the extra stress just makes the illness worse.

I think it is about time that we started lobbying our MP's the more point them in the direction of this website and then they might support the people who put them in that position!

They all have surgeries and we should all ring our respective MP's secretaries and make an appointment in January! Let's get them talking in the highest ranks and the lower ranks might get the message!

January meet our MP day!

[Paul_Howard Partner LUPUS UK]

Hi Jengrian,

I'm sorry to hear you're having so much stress over your financial situation. When you applied for DLA and ESA in the past, did you get any help with the applications? Sometimes it is good to get input from someone like the Citizen's Advice Bureau because the responses to the questions do need to be phrased just the right way sometimes.

It may also be worth seeing if your consultant has an occupational therapist on their team. They may be able to do an assessment for you at home, recommend some stuff to help around the house and also provide a report which could help greatly with future applications.

Please try not to give up. It is a rotten system, but generally I have seen that persistence pays off.

If there's anything you need, let me know and I'll do my best to help.

[Hidden]

Paul is your man for this. He is so right. I can't add anything extra to help but just wanted to reply so as you don't think no one cares... Lupus is such a multi- system disease, that it is hard for anyone to advise. We all have different mobility issues and some are able to work, while others are not. I know when I look at all the marathon runners in ' lupus news and views', I have to remind myself that they don't all have lupus. But some do, so as I say, we are all suffering differently with the occasional overlap. I really hope you get sorted.

[jengrian]

Thank you so much. I've never joined a forum before and I was somewhat apprehensive...but thank you both so much for the advice. My pain wakes me up every morning about now so I wanted to replay before I take my meds and drop off. Have had help from wonderful people in Nottingham but still no joy. What is so frustrating is that there has been a pattern all through my life and I wish so deeply that they could see how damaged my life has been..........Anyway..........Thank you once again.

[Carcrashgal]

Now you've found the forum it will help just to want to people in th same position who understand what you're going through. I echo everyone else's sentiments: don't give up! Very best of luck! Jo

[misty14]

I echo what Paul says, your local Citizen's Advice Bureau will help you do an aAppeal for DLA. They know how to phrase these forms. I got my DLA using them. Good luck x

[Maureenpearl]

You can also use your local Welfare Rights Officer and they will even come to your home and fill the form in for you and get in touch with your consultant's secretary for the necessary letter to accompany your claim form. If you need to appeal they will also help you. You can get in touch with your local council office for their number.

I use them to get DLA mobility component as I have SLE (MCD) with lung involvement, and they turn me down the first time but the Welfare Rights Officer helped me with the appeal and I got it. A couple of years later when I could hardly move because of the pain and need to pay someone to help me I ran the officer to ask to come and help me to fill in the form for the care component, which I got at the medium rate and I did not have to appeal for this.

Hope this helps, all the best and keep trying xx

[jengrian in reply to Maureenpearl]

Thanks so much for the reply. It feels so odd talking so openly about things I'll have a go xx