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