Getting to know me: Hi every one. Ive just joined... - LUPUS UK


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Getting to know me

Mybe profile image

Hi every one. Ive just joined. Ive had luspus over 30 years. Ive also got other health issues has well. Ive not been to good lately. Ive just have to live with my lupus. I have hobby's love doing knitting and sewing. And i am crazy for dophine's. I would love to swim with them. But it's just a dream. Well just a bit about me. I get very bad headache's. All so get very tied. That's one of the thing's with lupus. Sorry it's not much but i am very shy untill i get to you all. Look ford to writing more.

9 Replies

Hi, You are a fab example of a true Lupus warrior. Iris a great achievement to cope for 30years with this terrible disease. I hope you get all the support you need. I am only in my 24th year of the fight. Keep well.

Welcome Mybe

Please do post as soon as you feel able - there's no entrance test! And I'm sure many people here can learn something from your experiences. x

Mybe profile image
Mybe in reply to whisperit

Like i said be for ive had lupus for 30 years. And at 1st doctor's did other test but not a lupus test. It took over 20 year. Then i got lucky because my doctor was away. And the stand picked it up. By that time i was very poorly. And ive been lucky it's not played untill 2 month ago. It's because i am getting older. And ive other health issues has wll. I try and eat a healthy diet. I do not smoke. But now and agiain i have a small glass of wine. And soon will be ging swimming which will help. I get very tied. So in the after noon i take a nap. I all so get very bad headache. And all so get the butterfly rash when i not well. This last 2 weeks ive not been well. So i been under going test. I hate it. It's nice to talk to some one that has lupus. I find it hard to talk to people who do's not have lupus. They just don't know what we go through. That's why i joined the lupus group. To to people who has lupus.

Mybe profile image
Mybe in reply to whisperit

Thank you for your e mail. It took me over 20 years to be told i had lupus. I got very lucky one day. Becase my doctor was a away and the stand in doctor took the blood test for lupus. I get very bad headache all so get very tied. And all so i get the rush on my face. Some day's i just stay in bed and try to rest. I soon will be tring out a hot tub. To see if that would help.

Hi Mybe,

Welcome to the LUPUS UK community forum. I'm really glad you've found us and I hope this site will be a useful resource of information and support for you.

We have a couple of blog articles which may be of interest because they relate to a couple of symptoms you have mentioned.

Our article about managing fatigue is at

Our article about headaches is at

If you'd like more information about lupus and LUPUS UK, we have a free pack which you can request or download from our website at

Mybe profile image
Mybe in reply to Paul_Howard

Paul howard thank you for the email adress'. Ive sent away for the pack. And ive read the two fatigue and headaches. Very use full. I will be trying some of them.

Hi Mybe

You may have been lost, but now u have found HU Lupus!

Welcome. You will be well supported here. X

Thank you for the email. Soon i will be trying out a hot tub to see if it would help me. I get very bad headaches. Plus the rush on my face. And i get so very tied. It take me all morring just to get going. I feel that i am in 1st gear and can't get to 2nd.

Hi Mybe

Great to meet you ! I ve had lupus for a long time to ! And I really hate it although have managed to actually start coming down on some of my meds now . Although it has not been easy .Sounds to me you are doing really well with knitting and Sewing .(my fingers aren’t great at having to mend my clothes sometimes as you have to.) Dreams are good always dream it can only be good! I’m so sorry your having headaches and do make sure you check in with yr doc about that? I’m relatively shy so that’s no problem at all. We are all here to help each other so keep writing! Take care and look after yourself! 😊

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