Hi, I thought it a good idea to say hello to other Members of Lupus U.K. Lupus has been with me since 1973 but diagonosed only in 1983. I was diagnosed as having SLE. I am 73 years old and now reside in North Yorkshire; I was born in Hertfordshire. I lived outside of the UK. for many years returning in 1983. I worked from 1984 to 2015 when I retired in October. My Lupus first appeared in 1973 when I developed a very swollen thumb joint which I could barely move. I thought I had knocked the joint when cleaning windows but the swelling reduced along with the pain after a week approximately. A few weeks later my shoulder became extremely painful and I could not move the arm. I wasn't sleeping with the pain and I sought the GP's advice. and was prescribed medication. To cut along story short I was submitted to hospital with very swollen painful legs and Lupus gradually took over my body. With determination and a marvellous specialist nurse and special treatment I eventually gained use of my limbs. Whilst in hospital I experienced bleeding of the stomach and kidneys owing to some of the drugs I was taking, I had surgical hand splints which helped enormously to straighten the fingers and support them as well as the wrists. I thought at times I was losing my mind as I was forgetful and disorganised, which was totally opposite to my 'normal' self. To name a few issues, I experienced very bad headaches, loss of memory, extreme fatigue, loss of hair and self confidence. I wore the 'Butterfly' rash and had the rash on the back of my hands and my legs, I was not a pretty sight. I eventually recovered enough to be able to take up work and although at times I just wanted to stay in bed and tell people how I felt but the real world did not want to know. Once the rash disappeared and my hair grew back and I became fit enough for light work nobody understood how ill I felt at times and when I returned to work from sick leave colleagues remarked how well I looked, whereas in reality I felt so much pain and wanted to return home to go to bed. When I experienced flares people did not understand. I stopped joining in social activities because I was too tired and often in pain and eventually people stopped asking me. I expect my story sounds only too familiar but I honestly say since being officially diagnosed and having various treatments I am now on medication that helps me lead almost a normal life. Yes, I still have occasional flares, headaches, memory loss and my hair is ultra fine and lacks some of Its curls but managing my medication and myself I can say that I my I lead an almost normal life. I fought the 'wolf' with sheer determination and grit and I even joined the gymn again. Love and hugs to you all Dessi72. Xx
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