Lupus SLE

I was diagnosed last August after constantly visiting my GP with various symptoms. I thought i was going mad, and that it was all in head! Anyway blood tests revealed the Lupus. I had never heard of it. Am still learning what i can and can't do. Try to remain positive though especially as i have a sister having treatment for a rare form of cancer. I sit with her when she is having Chemotherapy treatment. There is always someone else worse off. Not easy though when you are in constant pain and swelling joints etc. This is very alien to me as i have always been active. At the moment walking etc is difficult even driving can be a challenge. Everyday tasks are difficult. Friends have suggested applying for DLA not sure about that. Anyway am finding everyone's blogs a great source of info. Onwards and upwards .

8 Replies

  • Hi Daphers

    You will get there and you'll adjust and still manage to get a lot out of life, you'll just have to pace yourself. Glad you've joined the forum, you will find that talking to the rest of us on your bad days willl keep you going and help you stay on track.

    Look after yourself and hope things get better for you and your sister

    All the best


  • Thank you so much for your support. Yes I am learning to pace myself. Not feeling too good today, had to get my son to cut up my toast!! Hands are bad today and lots of joint pain. Take paracetamol and codeine for that. Have you tried any pain killers if so how effective are they? Thanks again will let you know how things go with my sister. Take care love and best wishes Daphers.

  • Hello I got diagnosed nearly 3 weeks ago. Have they started you on any sle tablets? I am taking hydroxychloroquine but still no results as yet. Like steadilymovingforward said take it easy as the simplest task like cleaning or washing dishes maybe a walk up the shop can wear you out leaving you feeling exhausted. Worrying can also make you feel exhausted I hope they are doing the most they can for your sister. Anything you are worried about feel free to ask we are all here for support of one another. Family and friends don't understand what it is like with this condition unless they are going through it themselves.

    Like I said we are here for support and to answer any questions you may have.

    all the best

  • Hi I have been on hydroxychloroquine since last August, not sure that they are doing any good though. Am seeing my Rhumatologist on Monday am taking a list with me so that I make sure I ask her about all the things that are going on at the moment. Yep you are right even the simplest of tasks are difficult. Fortunately I do have a supportive family and my husband is brilliant as he knows how it feels. He is recovering from Chronic Fatigue Syndrome. So he totally gets it. Am very blessed. Must go things to do all the best onwards and upwards as my sister says.

  • Sending kind thoughts to you and your sister, your sister is so lucky to have you. Be sure you don't neglect yourself whilst taking care of your sister. It's easy when we are preoccupied with caring for others to forget our own needs. But you will need to rest when you can and eat healthily and regularly as overdoing things will take it's toll on you.

    All the best to you both.

  • Thank you so much for your kind words. Yes it is easy to forget about your own stuff. Having a chill day today catch up again soon take care and thank you.

  • Hi Daphers, welcome to the world of the "lupies". I was diagnosed almost twenty years ago and in that time have come to recognise my limitations. You must be having a really tough time right now and my love goes to both you and your sister and as slowmo says don't forget to look after yourself while you are taking care of your sister. I must admit that other people with lupus have often been the best place for me to go to for imformation and comfort as they can really see where I am coming from so hopefull we will be able to offer you hope and comfort. One point that I would like to make to you is if you are spending lots of time in hospitals and other places like that make a point of noticing whether they have unshielded flourescent lighting as if you are photosensitive - which a lot of lupus sufferers are it is worth protecting your skin, with long sleeves and trousers and any exposed skin at least a factor fifty suncream. I am so sensitive I were gloves and scarf in places with low energy bulbs or tube lighting as it makes my symptoms loads worse.

    Good luck to you both

    Madmagz x

  • Thanks Madmagz great stuff. Hadn't even thought about the lighting thing. Will make sure I cover up the next time I am at the hospital with my sister. I put sunblock on and cover up when I go out. I am quite overwhelmed by all the support from everyone its lovely. Hope your are having a good day if you know what I mean will catch up again soon take care.xx

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