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Stressed & Frustrated What Next?!!!

Hi Everyone

I hope you do not mind me posting and having a bit of a moan & rant . I am usually quite a positive person but please forgive me for this indulgence I am totally bewildered, frustrated and at a loss what to do if anything next.

I have been a fellow Lupus & Sjgreon patient for 17 years. I have worked throughout that time on and off when I can. In 2013 I returned to work after a 2 year break, the dreaded wolf being held at a bay with a concoction of drugs. It was not easy but I tried to push through and worked part time but between 16/20hrs a week employed as a Senior Housekeeper for a Nursing home. I did not earn enough to pay National Insurance or tax and stupidly thought nothing of it , and nobody in the accounts approached me to tell me to protect my future NI contributions. I was just concentrating on trying to keep going and ignore the wolf when it reared its head. With the hospital tweaking my then medication and painkillers it got me through. In my infinite wisdom ( maybe not!!) i decided to go self employed as a Housekeeper and my clients were very understanding if some days i couldn't manage to get out of bed let alone get into work. I was completely honest with my clients regarding my health problems from the beginning but I was lucky my reputation & references went before me . My clients were happy for me to take as long as i needed and paid me per session rather than per hour. I paid my National Insurance and had held a small earnings certificate. All was reasonably good. Skip forward to 2016. I was having severe back pain and trying to work, I struggle to walk, bend,sit and even lay in bed at times had me in tears. MRI scan showed I have chronic degenerative disc disease in my spine along with Spondylothesis, at the same time just for good measure the Menopause starts to hit in all its glory on top of everything else. My hospital consultant retired and I saw a new one at my last appointment. He decided it was in my best interest to add Azathiropine to my medication with a view to hopefully wean me off Steroids, having asked me what was I doing on Steroids for 17 years?!! Umm, doing as I was told and trusting my then consultant!!!! Now I have to go for a Bone Density Scan and been referred to a hand specialist as my hands are stiff and swollen and I keep getting ganglins and nodules aggravated by my work .So I am now signed off work. Being self employed I have no sick pay I have to claim ESA. I am unable to claim income related as my husbands father died recently and left him some money so my only option is claim contribution based. I put the claim in only to be turned down as I had not paid enough National Insurance for a couple of years whilst I was working at the Nursing Home. I asked if i could pay the shortfall which i did bringing everything up to date, only to be told I still could not claim as they were the wrong class it only went to my pension. Now I am in a position that I am unfit for work having been signed off and cant claim anything at all even though I have paid up to date . I am now faced with having to go back to work even though both doctor and consultant agree i should not be working and im flaring due to all the stress. My husband is self employed so its not that easy, he is supporting me and helping me as much as possible but I can not contribute to the household and the little bit of inheritance wont last forever . I have always worked from the age of 16 apart from children and SLE . I have tried to do right by returning to work and in being self employed paid my dues throughout the years , but now I need some help im not getting it . Oh well back to work I guess and see what happens;-( . Sorry for the long rant , im sure there are other people out there in similar circumstances or worse i should count my blessings.

Love & Light To You All

Angela xxxxx

7 Replies

I'm so sorry for your very difficult situation and awful health problems. The only thing I can suggest here is maybe write to your MP and say what you have said above, this is not fair to have to suffer like this.

Sorry I can't help further.


Hi Crazyfitness

Thank you for your kind thoughts , I think I will do that this weekend!!



I really hope you do as I cannot think of any other way and if there is something I feel strongly about I always write to my MP - you can't go on like this.

Take care





The worrying thing is that I am sure there must people out there totally unaware of the situations like I was. It is all kept very quiet and only becomes an issue when you need to claim. I assumed that paying voluntary NI contributions would cover sickness benefit. Its bad enough trying to work part time when we have Lupus, let alone to then find out that because I could not manage to earn over £6000 the voluntary NI contributions I have paid have only gone to my pension pot. I might not live to claim my pension at this rate !! I am in the process of writing to my MP ,i just hope my voice can be heard in all the chaos of Parliament . I am lucky to have a wonderful husband who supports me the best he can. But other people might not be so fortunate who are in the same position as me or heading down that path. Unaware of the nightmare and stressful time ahead, and we all know how the Lupus reacts to stress !!:-(

Hope you are managing to keeping well

Love & Light xxx

1 like

Well done to you for putting a letter/email together to send to your MP, I can't see another way. If that doesn't work then I would try the newspapers next. There are enough people that claim benefits but shouldn't get them and it's people like yourself that are left to suffer, as you say, you paid your NI contributions so you should be entitled.

Only other thing I can think of is if you don't get anywhere, which I certainly hope you do, is a petition and I would be sure to sign it that's for sure.

I really hope you get somewhere with this, please keep everyone updated.

Very best of luck to you.

Alicia xxx


Hi Alicia

I have sent my email to my MP today , so will wait to see what he has to say!!

Thank you for your support I appreciate it, and will let you know when i hear anything

Kind Regards

Angela xxx


Hi Angela

Well done and here's hoping for a positive reply; there are many people out there that think the State should look after them yet when it comes to people like you who are trying to help themselves they seem to try and bleed you of whatever you earn.

I have a friend who managed to earn a little extra money to help her and her son; she lives with her son and he wasn't working when she earned the extra money. She declared everything and yes, you've probably guessed it, they dropped her Child Tax Credits so she worked extra for nothing. My friend has no luxuries whatsoever, has never been on holiday and when she has leave from work she makes crafts to try and sell to earn some extra money to help with finances. It's sad to say but it doesn't always pay to be honest but I couldn't be anything else but honest.

I have said the above just to say how hard it can be for us honest people who only try and help themselves.

Very best of luck to you and I look forward to hearing what your MP has to say.

Alicia xxx


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