How can I accept having lupus?

[shell2138]

I've just had my bloods taken and 2 of my family members have been diagnosed, I'm wanting to know how bad this could be andany help or tips on how to cope with it, my symptoms have been getting worse the older i get.

[Hidden]

Hi shell2138, there is a lot of info out there to scare you, or you can be sensible and request info from this site, that will help and advise you. Lupus is a multi-system disease, that can affect any part of your body, but for lots of sufferers, they just have fatigue, and joint/muscle pain. (Not trying to imply, they don't suffer, by the way.) lots of these people, have their lupus managed by low end meds, and mostly, live life as normal. But as with all sufferers, you have to pace yourself. Listen to your body, and rest, when needed. Avoid, full on exposure to the sun, and take your meds regularly. Life goes on however you manage it. As hard as it is, you have to keep going. Having lupus means living life differently, sometimes. It doesn't mean, no life. !!! Arm yourself with good positive info, and go from there....

[faetheness]

Hello shell2136, I'm in the same boat too. I was "diagnosed" a year ago with mild lupus, and all I knew about it was from a TV series with Ben Fogle taking people with disabilities on exciting treks; the girl with lupus really struggled with the pace, and had to abandon the trek early. She was exhausted. That's all I knew! Now, at the age of 58, I've got a diagnosis; but hey-ho, it could be something worse. AND I have to rest, so that gives me an excuse to read and do craftwork, and chat to people over a cuppa. And leave the housework until another day! And properly listen to music. Actually, I don't have time to do these as for most of the time I'm OK and CAN go for long walks over the hills. So don't despair; this community is so good - you are never alone.

[Natura]

Shell....I was diagnosed 4 months ago and in the same boat as you. I think I may have had my whole life, but didn't come out until after I had my daughters. Started with muscle weakness and tiredness. I struggle too with accepting this disease, but this forum helps tremendously. I still have bad days when I get a pain here or there. Wish I could help. You are not alone though. Take care...

[shell2138]

Your all so lovely, thank you for all your advice and kind words, I do have a question, why should I not go in direct sunlight? I am light sensitive and have to wear shades most of the time, but is there another reason? I can see me using this site a lot x x x

[barbdockeray]

Yes tiredness and your skin burns more easily invest in a hat .my head is so sore when been in sunlight ..and good sunscreen factor fifty + ...hope this helps xx

[shell2138]

I just thought I had fare skin, but I get sun burn in minutes and always end up with headaches. Your advice does help thank you very much x x x

[madmagz]

Hi Shell, I would say that it is all very well being prepared with knowledge of how bad things can get but is more important to try to stay positive. I have had to give up a lot of things in my life due to my health, I have had lupus nearly twenty years, and so have my children as they have been my carers since they were three and five - they are twenty one and twenty three now. Yes lupus can be unpleasant at times but you can still have good times and enjoy many good times in your life if you look after yourself and protect yourself from the things that make you worse. Lupus UK can give you some very good information on the basics of the disease but you can help yourself a great deal too. I had to give up work so I took up volunteering and in doing this I meet some very interesting people and enjoy helping them which keeps my spirits up. The organisers are very understanding if I need time off as I told them from the start that I may need time off and they accept that. I am lucky in that I have a very good doctor and found this site so my fellow lupies who have been very helpful and supportive and they are the best people to help you accept having this unpredictable disease, I hope you have more ups than downs and may your problems be little ones.

Chin up and all the best

Madmagz x

[shell2138]

Thank you madmagz x