I have Hughes, Lupus (SLE) and Sjogrens and have been diagnosed with these things in the past year. I have always worked full time but really struggled over the past 3 years to manage the working, housewife and Mum roles... too tired, aching, daily headaches and migraines and seriously struggling. I was prescribed a medication for the Lupus but had a severe reaction and ended up in IT and off work for 6 months and on Chemo - the reaction has left me pretty unwell and it is expected that it will be another 6 months before the reaction itself has left my body. So, due to the reaction I am not being medicated for the Lupus apart from the warfarin - this makes life very difficult and to be honest very scary..
To top it all I have now been made redundant from work - a career of over 13 years that I loved. Now I am getting quite worried as to the future - i.e. will I feel well enough to work again? Will anyone want to employ me? How can I financially cope as I hear there are no diability benefits available for Lupus patients??
Any advice or thoughts gratefully received.... Mary.