New Year, new me..... maybe :): Feeling a little... - LUPUS UK

LUPUS UK

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New Year, new me..... maybe :)

jayfer profile image
37 Replies

Feeling a little nervous but feel I'm doing the right thing. After 6 years not working and fed up of being at the beck and call of family who don't understand lupus , I have a new job ( of sorts) starting in the New Year. I am a mystery shopper and my 1st assignment is overnight stay in a hotel, I'm hoping this will help with my confidence and self esteem but at the moment I'm shaking at the thought of it, yet at the same time excited. now do I have to tell ESA or wait to see if I can do it :)

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jayfer profile image
jayfer
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37 Replies

Not sure that anyone will want to encourage anything illegal. If I am right, and please say if not, is ESA employment support allowance ?. I am fortunate to have a husband to support me financially but please don't think I am frowning on you. We are not well off by any means and know how hard it is. You obviously don't want the rigmarole of having to claim from the beginning if you find your health is not up to working. But stress is not good for lupus and the worry you are putting on yourself will not help. Remember, you can moan back at family, but work is mandatory. The fact you are excited is good and maybe the new challenge will be enough to take your mind off your symptoms. Give it a go, it sounds interesting but please don't do anything silly. Good luck in your new job.

jayfer profile image
jayfer in reply to

Thank you for your reply. The job is not paid as such, just expenses reimbursed. I don't want to go through all the channels of reporting 'voluntary' work if after this 1 I decide I do not have the confidence etc to continue, it's definitely not for monetary gain, and probably at the most 1 assignment a month if I do decide to continue. If it were a 'proper ' job I would be very happy to inform benefits x

in reply to jayfer

Sorry for misunderstanding I don't want to 'burst your bubble.' Hope you enjoy it and are well enough to continue. I really do understand your dilemma, don't think me a prude. Like I said, it sounds interesting if only part time. It may help your confidence to have an outside life from your family. Take care.

jayfer profile image
jayfer in reply to

thanks. You are right in what you are saying, I have the same beliefs re claiming and working and wish I didn't have to be on benefits after years working. I would be too scared to try and work while on them. It's this silly mind that doesn't put things across correctly, not your misunderstanding :) I just get a hotel room paid for a night with dinner and then tell them what I thought of the service. Could be a nice break lol

anbuma profile image
anbuma in reply to jayfer

I would be careful.any work whether voluntary or paid should be declared.I know of a local firm to me who get checks periodically by dwp to ensure they aren't employing people in receipt of benefits.doing voluntary work means you might be classed as being fit for work.

jayfer profile image
jayfer in reply to anbuma

I'm going to do this 1 then see if it is for me, if so will ring. It's not even regular work, maybe once a month. Never realised the outcome it could have. Thank you for your comment x

Well done to you! You will be fine doing the job. If it was me i would tell benefits because they always find out. You are allowed to work but only up to twenty quid a week without them deducting off your benefits. Honesty is besr policy. I a goody two shoes! Happy new year and good luck!

jayfer profile image
jayfer in reply to

Thank you for that. I definitely won't earn £20 a week ! I just want to feel worthwhile and useful in some little way again. If they decide I did ok in 1st assignment and offer more I will definitely tell benefits office. Happy New Year xx

uzi41 profile image
uzi41

Oh wow what an exciting job. Good luck stay positive and try and enjoy it. Also put yourself first, sometimes I think doesn't what you try and do to make family members understand what we go through they don't get it.

Focus on you and all will fall into place. All the best. Big hugs. Xxxx

jayfer profile image
jayfer in reply to uzi41

Thank you, and Happy New Year to you x

in reply to jayfer

Just to end my twopennoth!!! I was a head receptionist before lupus, at a budget hotel. I looooved you sort of guests. I had a mystery guest who arrived one morning when the night before, a guest had killed themself.!!! The restaurant had been used as a police interview room all night, and the mystery guest marked us down as there was not both flora and anchor butter on the breakfast table.!!! So just go easy on the poor staff. Lol.

jayfer profile image
jayfer in reply to

Aww that wasn't nice. I will be kind to them lol

jayfer profile image
jayfer in reply to

Hmm. they tried to poison me lol. Assured me 100% no cheese in my meal as I'm allergic to it, but there was. They got me a taxi to chemist for antihistamines, but then charged me for the meal when I checked out after spending the evening in my room vomiting :(.

in reply to jayfer

Well thanks for letting me know, take it was a budget hotel then. This makes what I said a sob story, but it was true. I know my hotel would not have charged and prob called a dr to your room. But then it was my job to make these decisions and I did work at a budget hotel. Hope you ignored my advice and totally slated them. Lol. Hope this is the step you needed to grow in confidence and get out in the world again. Take care.

anbuma profile image
anbuma

are you in receipt of ESA -wrag or support if you don't mind me asking?

jayfer profile image
jayfer in reply to anbuma

I'm ESA support, although to fill the dreaded forms in again soon as on contribution based. I don't get full amount as I have pension from work. I have letters from consultants stating I'll not work again, 1 dated 2010 and 1 this year ( they were written in support of getting pension from work)

anbuma profile image
anbuma in reply to jayfer

I am on ESA support(was IB)and have a small works pension.not affected .maybe my pension is smaller than yours?

jayfer profile image
jayfer in reply to anbuma

I fought for what I thought was ill health, but it was preserved benefits. Ombudsman is looking into the ill health retirement now. I had worked for council from 16- 50 when they finished me due to time off with lupus, so although not a pension I can live off totally, it's not bad

misty14 profile image
misty14

Hi Jayfer

Good luck to you for your new job, I'm sure it will do your self-esteem the power of good. I've always wanted to be a mystery shopper, interesting work you'll love. Be very careful what you say to DWP . You can do voluntary work on ESA and if I were you I 'd ask at CAB first before doing anything. I've heard of people losing everything when they were just reporting a change of circumstance. Best of Lick with your health. X

jayfer profile image
jayfer in reply to misty14

Thank you, I'm beginning to wonder if it's worth it with DWP now. I just thought it was ideal, pick and choose when/if I can do anything and I doubt it will be regular x

misty14 profile image
misty14 in reply to jayfer

Hi Jayfer

As your in the ESA Support Group you can do voluntary work without it affecting your benefits and if I were you I'd see how you manage it before saying anything to DWP. Also Ask CAB first too. Good Luck, hope you enjoy it. X

Twilo76 profile image
Twilo76

Hi there, well done to you for making this huge step. I think you should contact the ESA and enquire about what work you can do etc, are you on work related ESA? Even check out the website, they certainly don't make things easy for you, you want to be honest but they can be so quick to stop your benefits and then you have a lot of trouble trying together back on them if things don't work out. They penalise you for trying to better yourself! I finished on ESA when my partner started full time work in March. He is due to stop work end of January, i have been very lucky with my health (hopefully this will continue) and since august I have been working part time as a nursery auxiliary in my local school, I felt the same as you, with regards to relying on family etc, I was so depressed and fed up with my life I had to make changes, however, when my partner stops work we will be worse off as my pay isn't as good as when I was on ESA. As I said before, find out as much information as you can from the benefit dept and then decide from there. As a person, I feel great and so much more positive about myself making this change. Good luck with it all :-) I wish you all the best for your future

jayfer profile image
jayfer in reply to Twilo76

Thank you. I'm going to do this 1 then make an appointment at local Job centre to speak to someone as I think over the phone they do not assess properly and I have a hearing disability so miss some of what is said. I have written evidence that I will not work again. I'm in support group ESA. If I could work again I would, I hate being dependent on anyone else. I have a small pension from work so at least have a little income of my own. Best wishes for 2014 x

Twilo76 profile image
Twilo76 in reply to jayfer

I just noticed justy14 saying to go to citizen advice bureau, it think you should speak to them first too before contacting dwp, CABs are there to help more so than DWP. Yes go for it try the first one out and see if its for you, and if you like it, surely the DWP will want to help you out!!!???!!! The best thing, I think, is to go in armed with as much information as you can before speaking to the job centre, then you will be more confident speaking to them. Good luck jayfer and all the best to you too! X

sandwiches profile image
sandwiches

congratulations on getting a job. I know what it is like when family and friends don,t understand when you have lupus. I am hoping next year to get a job as people seem to think that when you are unemployed you are at the beck and call of other people. I was recently taken off DLA after my appeal failed, so i am looking forward to doing things for myself and not other people. I was asked the other day to be someones cleaner even thou she knew what a hard time i have whilst having lupus, but she seemed to dismiss it as if to say "you're be alright". I turned her down and she has been funny with me ever since. But i need to look after myself not other people. hopefully next year will be a better year for me. Good luck in all you do.

jayfer profile image
jayfer in reply to sandwiches

Thank you, mum is worst!! She told a relative ( in front of me) that she had to pay for a decorator when I could wallpaper. She just doesn't understand. I know I won't work full time again but am hoping I will work part time eventually, this will help rebuild my confidence. I hope 2014 is good for you x

sandwiches profile image
sandwiches in reply to jayfer

I hope you get a job soon. It would be brilliant for you to get out of the house. Take care. x

Maureenpearl profile image
Maureenpearl

Congratulations on your job. my son gets ESA and he does voluntary work at three different places per week, at one they sometimes give him £5 for expenses and he also attends college. He goes to the jobcenter plus once a month to see an adviser. he knows about the voluntary work and college. There are a lot of people who cannot have a paid job but can do voluntary work so I would ask the adviser at your job center if you are entitled to do voluntary work while receiving ESA.

All the best with your job. Happy New Year and good health for 2014

jayfer profile image
jayfer in reply to Maureenpearl

Thank you, I am going to check, I'm in support group so don't have to go in at all at the moment. Best wishes for 2014

lizzidrippin profile image
lizzidrippin in reply to jayfer

Hi Jayfer all I can say is well done go for it...this is such a confidence robbing disease, that if you can do it I dont blame you! Though heed all the advice.

I might want to explore the pension bit with you. I too worked for the council who then sacked me for not being able to do my job. Occy health stitched me up saying that with medication I would probably be able to work in the future! Been diagnosed with chronic residual pain syndrome and told this is as good as it gets!!!

My pension is waiting until I'm 67....I'm 56 now.....

How do they get away with it?

Anyway I stray from the point. Go and try and enjoy the job, however it works out.

Hugsxxx

jayfer profile image
jayfer in reply to lizzidrippin

Hi, thank you, by all means PM me re pension. I'm 57 now, was finished at 51 x

anbuma profile image
anbuma in reply to lizzidrippin

I am sure I read or heard somewhere that originally anyone born before april 1959 would not have to wait til they are 65+to get a pension btu still get it at 60.think its all wrong expecting people to work til there are 66/67.howmany people are goign to be fit enough taht age to work-especially physical jobs like builders etc.noone will have a retirement to enjoy.

jayfer profile image
jayfer in reply to anbuma

I think you can still access your private pension at 60 - I agree with you, it's unfair to change the pension age x

bam1993 profile image
bam1993

I just want to say Congratulations on your exciting new job!!! What a confidence boost!!! I don't know anything about the ESA-as so far have not claimed-not because I don't need to, but am baffled by all of the forms.....I was working 48hours a week until beginning of 2012-when I had to go part-time because of my Lupus-now only working 22 and half and really struggle with the money as am on my own with a mortgage. I have already had to have time off again due to meds not agreeing with me and flares-and really worry about what would happen if they get rid of me-I think I would just give up and not be able to move off the sofa/bed all day! I have PIP forms to fill in, and have made a resolution to at least look at them this year! ANYWAY....Good Luck in your job- I am sure it will give your moral a 100% boost! :-) x

jayfer profile image
jayfer in reply to bam1993

Thank you. I had 2 jobs , both with the council , before I was finished, so lost them both. Like you ,on my own with a mortgage. I fought for my pension so at least I could almost pay off my mortgage. Get help from DIAL/ welfare rights/CAB with your PIP forms. They know wording needed to be successful. Hope 2014 is good to you and you are able to continue in your work x

wotshernameagain profile image
wotshernameagain

I hope your 1st assignment went well!

At least you were out of the house for the night.

I think you would need to tell ESA

jayfer profile image
jayfer in reply to wotshernameagain

Hi, it was a disaster :( I ordered my meal and asked twice if there was cheese in the dish as I'm allergic to it..... there was. I only ate a little before asking again but then spent the evening vomiting after being taken to chemist for antihistamines to stop lips going numb. I'm waiting for feedback but it made me realise I was out on a limb, no insurance as it's not a paid job, too vulnerable, so don't think I'll be doing it again. Oh well, it would have been good lol

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