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!