LUPUS UK
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Stressed & Frustrated

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

P.s I inadvertently put this post on IBS forum Brain Fog Strikes Again!!

16 Replies
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Hi Mrsdoozer,

I'm sorry to hear that you are in this difficult situation at present. Have you spoken with a Welfare Rights Adviser at your local council or your local Citizens Advice Bureau to see if there is any other financial support available?

We recently published a blog article about financial management in lupus with covers a range of areas and has some useful links. If it is of interest to you, you can read it at lupusuk.org.uk/managing-fin...

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Hi Paul

Thank you for your suggestions. I did speak to one of their advisers a month ago as I knew I could not carry on working much longer. The answer was being part time self employed you are probably not going to have paid enough National Insurance and she was right sadly and paying the shortfall has gone only towards my pension. I am only 51 its a long way off . She also told me that due to my husbands inheritance I would be unable to claim . Her words were in the eyes of the government your husband has to support you that is what marriage is about!! I totally understand and get that , but I have paid into the system all my working life and I used what little savings I had to pay the shortfall only to be told it makes no difference. I only would like to have the help that I have personally paid into . It is so wrong . Sorry rant over and thank you for your help and suggestions i do appreciate it

Kind Regards

Angela

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Would early ill-health retirement be an option so that you can get access to the pension?

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I can only offer sympathy, Mrs d.

I worked partly employed by the NHS and partly self-employed but several times in the past I was tempted to go fully self-employed. It was good job I didn't, and only a kind of general mistrust of all the deregulated pension market that made me hang onto my NHS salaried work. As it is, my ill health pension is very small, and I don't suppose I'll be having too many foreign holidays during my enforced retirement! Making provision to guarantee that their chronically sick citizens aren't also paupers is one of the basic tasks of government imho x

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Hi Whisperit,

Thank you for your reply. You were very wise to to not go self employed x I wish i had not, thought i was doing the right thing at the time hindsight is a wonderful thing I guess.Time for me to build a bridge and get over it as my kids say nothing i do or say is going to make any difference so just have to try and battle on as best i can xx

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You're right of course - things would have been quite different if I had known 4 years ago what I know now....and we have no alternative but to look forward and show our kids what tough old blighters we are!

x

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have you applied for pip - its not income related.

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Hi

Yes I have DLA for the moment .I was awarded it indefinatley just waiting for dreaded brown envelope to drop through letterbox, as i have not been re assessed yet. x

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Hi Paul,

That is something I had not thought of I should to look into thank you. I am not sure how to go about it but i will investigate. x

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This guide from the Money Advice Service may be a good place to start - moneyadviceservice.org.uk/e...

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Thanks x

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Thanks everyone on this post. Learnt a lot and making me think about how I should plan too. I will start to look into all of this. As I have stopped working still early days for me.

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Hi Leave-me-alone

Yes please think carefully and plan well. I have learnt the hard way and i am sure there are many of us out there in the same position xx

I made the stupid mistake of thinking that holding a small earnings certificate and paying my voluntary National Insurance contributions I was safe guarding my ability to claim ESA & pension in the future. I have since found out paying voluntary NI contributions only goes towards the pension and that as i only manage to work part time and earn under £6000 I am not entitled to any ESA help at all as I am unable to contribute willingly or otherwise to the necessary NI band . I find it a bitter pill to swallow as like a lot of us Lupus sufferers we are trying to pay our way and do the best we can. It feels like we are penalised because of our illness we are not lazy we genuinely have a chronic disease and still try hard to do the right thing. So i feel i have no choice but to go working for someone else or a company, doing what goodness knows! I am 52 not a youngster!!I Just hope that they will understand that some days are good, some are bad. Hope i can hold the job down long enough for at least 2 years and earn over £6000 a year so i can then pay the correct National Insurance contributions to ensure i can get help when my chronic back condition becomes worse as predicted and the Lupus & Sjgreons flare due to the stress of it all .If not I will be back to square one again i am afraid!! Ho Hum!! My consultants and doctors wont be happy with me but the way i see it there is no choice. Yes i am unfit for work and I am unlikely to hold a job down but I will certainly give it my best shot. Stronger painkillers will be the order of the day to keep me functioning and upright.Unfortunately I do not have a private pension and i cant access my state pension until retirement age HMRC tell me, so early retirement is not an option either. Thank goodness I have a wonderful loving husband who supports me 100%. But he is not without his health issues either bless him. I know marriage is about support in sickness and in health and all that goes with it "whats yours is mine" but I have always contributed to the house etc now I feel ashamed and such a burden to him. He would be devastated and so hurt if he thought i felt that way .My pride, self esteem and health is taking a real hammering at the moment :-( but keep on moving forward .....all be it slowly and creaking with stiff swollen joints

Love and Light To All

xxx

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I totally understand how you are feeling. Is only my first 4 months off work feel totally useless already. Is so hard to get anyone to understand what we are going through. We are not disabled but like you said just good, bad and extremely bad days. Just sound so hard to get support. I worked all my life. I have saving and my own house, don't even think I will be qualified to get anything now I need help.

Even today I flet so bad I don't give up my seat on the airport train. I am only 38 look 28. Everyone says to me I don't look sick. Makes me angry, they have no idea about the pain I am going through. Sorry different topic here, but feel like sharing too.

Hope it will get better for you.

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Hi

I know how you are feeling xxx This is a great place to share , we are always greeted warmly and always welcome. Everyone is so kind and understanding , we are all fighting the same war just different battles. Along with my back problems I am unable to stand for long periods and need to sit down, I i still find myself still giving up my seat. I just cant bear the looks and mutterings of judgemental people as I look ok.

People do not realise what we go through,they do not see me struggling to get out of bed or trying to bend to put my socks on. Or struggling to pick something off the floor for the 5th time as my hands lose power and are stiff and I drop things on a bad day. Or the huge amount of pills we have to take each day or the carrier bag of medication we all collect from the chemist each month. Or the hunt for the CD I was kindly bought but could not find until I opened the fridge door and found it sitting next to the cheese!! Oh that is were I put it!!! Well I thought it was a cool CD! Thats what I told the family as they rolled around in laughter with me,it does have its funny moments occasionally :-)

On here everyone understands good days and bad . Thank Goodness for this forum. So you are not alone we are all out here and in the same army :-) always here for a chat or sounding board.

I hope things improve for you soon

Love & light xxxx

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Lol. Totally read my life. Lovely to have shared with you. Xx

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