living hand to mouth

worry is consuming me,

i can only work 4hrs a week due to the exhaustion and pain (main two things) that lupus gives me.i went to CAB whom took my and my husbands income and said we would be intitled to help with the rent and council tax and to ask DWP for benifit advice.

i applied for rent and council help for the first time in my life and were told no as my husband earns £340 a wk and thats plenty to live on. i have either worked full or part time since i was 16 depending on the ages of my children. im not a scrounger neither is my hubby we have always paid our way and have been healthy until i became ill in 2005.

we dont have holidays,days out are very rare and we dont waste money. we havnt had heating for the last two winters and this winter will be the same as we cant afford to use the storage heaters. ive rynaulds and wear gloves indoors.

DWP said that because i must have at least one day a week that i feel well i shoudl work then,and said i dont qualify for anything.

my work are reluctant to give me more hours as 4hrs is like running a marathon and i make stupid mistakes and forget my words when talking to customers.......i dont know what to do, im failing as a mum, im ment to provide for my kiddies.....feel so down

7 Replies

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  • So sorry to hear your worries. I have Lupus but I am the lucky one it doesnt effect me to often. anyway, the only advice I can really give you is keep trying. My husband was told by doctors he could not work anymore and yet it took us 3 times appling and a year later for disability that he finally got it. Don't take no for an answer keep trying. Don't know if that will help you any. And you are not failing as a mum you love your children, you may have to cut down buying what they want, but you are providing the main things for them. I dont know how old they are but I am sure they understand if you have explained it to them what the situation is but doing things with them at home or going to the park. Children do like to interact with their parents. Hope you feel better soon.

  • hi so sorry to hear you are having such a tough time but please don't give up on the DWP they notoriously make it difficult to claim. If i have read your post right (bit foggy today!) CAB thought you would be entitled to help. They don't often get it wrong. Have you thought of getting a second opinion from your local DIAL group? just google DIAL and you will find your local group. They were so helpful to me especially with form filling. I don't know but there are other benefits and perhaps you might be entitled to something else. its worth persevering do hope things improve for you soon.

  • I've just asked a question similar to this about my ESA.. Hope you find something to help. All I'm doing now is worrying :/ x

  • Canine crazy!!Im pretty new to this blog ,but have just read about your situation,i too feel like you in the sense of being unable to work as much as we need to and not get any support whatsoever from the goverment,its so sad we live in a society where so mant people refuse work who are perfectly able bodied and have good health and seem to claim every benefit going ,its so wrong!i often feel whats the point????but i look at my daughter everyday ,she brings so much joy and thats why we have to keep attacking ;))i really feel for you and only hope things get easier ,keep well, brave ;)

  • Hi Canine crazy, the only advice I cna offer you is to keep trying the DWP as someone else said they do make it difficult the first time I applied for it I was turned down wthout them even doing a medical me the second time I was given it I only get the low rate but it is a bit extra coming in each Month I really feel for you, as for failing as a Mum of course your not your children will grow up as all children do but they will appriciate their belongins I know I did we were very poor when I was a child I didn`t have a new pair of shoes till I went to work but I knew the love and support of a family who all gre up without much hope this helps a bit(((((hugs)))))))

  • a BIG thankyou to jennyhe,brave,teecayc,tupa and lason.

    my children are 21yrs and 14yrs so do understand how lupus affects me,they do sometimes get annoyed when ativities get cancelled due to my fatigue. it annoys me too :( but they are good kids and growing up so fast. they have been taught to earn thier pocket money (only my son gets it now) by doing small chores etc.they save up for things they want so they understand the value of money that way.

    tupa,thankyou i hadnt heard of DIAL but i will google that and see where my nearest group is.

    i will go back to CAB when my hubby can book a days annual leave from work as i dont drive and bus journeys tire me quickly and they make me feel panicky.

    i will try again with DWP but they are so rude and lost my forms twice even though i sent it recorded delivery the second time, i checked and it was delivered but was lost within the building!!

    a BIG thankyou to you all, im new to this site but its good to know im not on my own living with lupus. its like a deck of cards...you never know what hand you will be dealt each day (symtom wise) xx

  • You put that so well living with Lupus is just like a deck of cards, I am so pleased you have found this site I know you will get all the help and support you need here.

    I know the DWP are rude and they lose forms my Hubby is self employed and had to have a few weeks off work earlier this year, we wrote and told them he had returned to work and we kept getting letters asking for his recent sick notes grrrr iin the end I put a reply on one of their letters saying wasn`t it about time they sorted their paperwork out we had no more letters, but honestly there are people like you who need DLA and deserve it please dont give up you deserve some DLA take care abd keep posting (((hugs))

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