coping with lupus

A week after my fortieth birthday I was diagnosed with lupus and at that time I could have kissed the consultant as at last someone had listened to me and done something about it! I had never heard of it but at least I knew symptoms were real and not just in my head. I thought if I took the tablets regularly to keep it at bay It would be okay. 13 years later I am still learning about this illness. It may only have 5 letters in its name but it definitely has many different aspects to it.

I have given up so much to this illness (my job, driving, my independence and various organs that don't now work as they should) but still it wants more.

I have cerebral lupus which has caused epilepsy, loss of balance and short term memory loss ( there is nothing more hurtful than not remembering your own sons name!)

I am on 5mg of steroids daily plus a whole load of other things and my husband now feels like he is on 'drugs run' every time he goes to the chemist.

Can anyone tell me how they cope with the 'you are looking well' (thanks to the flushed cheeks) and yet you are probably feeling like death warmed up and when you tell them that they look at you like you are a real moan?

Also interested in how anyone elses lupus started. Apparently it can start after a shock to the system. Mine was started, apparently, by me getting bit by a tick whilst walking a dog!

4 Replies

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  • Hi,

    I can't bear being told how well I look! Even my GP says it and it is infuriating because inside you feel the complete opposite!

    My lupus apparently began in 1989 when I had a severe reaction to the typhoid vaccination. At the time no one knew what was wrong with me, I became poorly with thrombocytopenia purpura - where my body attacked its own platelets and I couldnt stop bleeding. Then in 1996 after my only son was born, things gradually started to go wrong again but in a totally different way. I started getting terrible pain in my joints, migranes (which were mini strokes) a clot in my bone which caused my metatarsal to fracture, a clot at the end of my finger, and in my wrist. In 2008 I was finally told I had SLE and antiphospholipid syndrome and like you, could have kissed the consultant that in effect, confirmed I was not going mad!

    Lupus is fascinating and monstrous at the same time - every day is a battle.

    Yols x

  • There was a book, ages ago, and it had a couple of pages about how well you looked. so I photo copied the two pages then gave 1 to any body who said how well I looked,

    If I remember the name of the book I put it on the blog

    Ken

  • Hi,

    I too get so bross when people say "you look so well" and underneath you feel like death warmed up !!!

    My lupus was triggered by the birth of my 2nd child, had a bit of a traumatic time but it went undiagnosed for 2 years as i was just put down as a worn out mum !!!

    I too was happy to get a diagnosis but as another Lupie once said Systemic Lupus Erythamatosus - hard to say even harder to live with xx

  • Oh how true - a little name with so many underlying illnesses with it! Nice to know that I am not the only one who feels like screaming when I am told I look so well and it is even worse when it comes from a doctor!!!

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