WeAreLupus.org - The Social Support Network for People Living with Lupus & Fibromyalgia

Anita

What has helped me the most would be my Fiance. I know it sounds so corny, but until i met Regan i really had no support base...I also went through the worst of my illness with him, and no matter how hard it was he made everything seem so possible. I love him dearly:)

 Also i have always been a bubbly positive person and i always know that there is someone worse off than me, i come accross the odd whinger everyday in my line of work where they complain about a petty flu or cough  and cannot "work" i believe that you need to beat the illness not let it beat you or you will be consumed with it that in turn you will make yourself more sick. YEs we all have our days where we seriously wonder why we take all these meds, bother getting tests done every week....or bother even trying to get better when we feel so yuk!! But at the end of the day life is short focus on what you have now...you never know what tomorrow will bring

Anita

38 months ago

Dawn

I agree with Anita.  Being positive and kind to other people helps me forget how bad I feel sometimes.  Also, doing things to take care of myself, pedicures, hot baths, cooking, gardening, etc.  And I also make it a point NOT to make a lot of plans and have a lot of time to myself.  Making plans stresses me out because I'm always afraid I'll get down and not feel like doing them.  If I keep my schedule open - or schedule things in advance so I can prepare myself - then I cut way down on stress.  

38 months ago

lasonja

having a strong support system with my family including God first, my husband and other family members. I also joined a support group and participated in the Broward County Walk for Lupus this past October. Staying positive and working as a nurse, I see other patients with illness on a daily basis so I try to count my blessings and not complain. I am also learning to tell people NO and not feel guilty when I'm tired. I must learn to be my biggest advocate.

38 months ago

Stephen

I agree that a support system is perhaps one of the most crucial parts to living and dealing with Lupus. I think that with something like Lupus it is important to connect with people that really understand what you're going through. Glad that you've shared your thoughts!

38 months ago

Kimber

I AGREE, A POSITIVE ATTITUDE AND A GREAT SUPPORT SYSTEM HELPS ME. ALSO AN UNDERSTANDING DR IS ON THE TOP OF THE LIST. ALSO, I KNOW THIS IS STRANGE, BUT WHEN MY LUPUS IS ACTING UP AND I AM STRESSING, I LISTEN TO ELVIS MUSIC AND IT HELPS CALM ME DOWN.

37 months ago

Vanessa

A positive attitude and good focus, also golf :) i play for my county. I have found that sport or some form of challenging activity helps take your mind off Lupus and also competing in sport  competitions or other activities helps remind oneself that Lupus isn't in control of me :)

36 months ago

Maria

Taking this illness day by day and trying not to get to down about myself helpes me deal.  I am still trying to learn my boundries and listening to my body.  I went from having a active life of working and being with my husband to having to be fully taken care of my my husband and not being able to really do anything so needless to say I have had to make major adjustments. My husband has been great and my mother in law has also been an amazing support to me.

33 months ago

Thomas

What helps me deal with lupus is keeping my mind occupied.  I love photography and when I am in the view finder I am in my zone.  Nothing else exists except what I see in that view finder.  When I'm not able to physicaly shoot,  I plan my next shots.  This has kept me a good place and makes me happy, that in turn leaves little time for fretting and stress.  That in turns help me keep flair ups in check.  Find a passion,  find one that you can do when you are feeling well and when your not.  It is amazing what it does for your attitude and general health.

32 months ago

Lilykat

What helps me deal with Lupus? hmmm. Nothing makes me forget I have it. It's there in my mind as soon as I wake up and whenever I look in the mirror. The red rash from the Discoid is an ugly reminder. But doing the normal everyday stuff helps make me feel, well, normal. I love cooking for the family. And laundry can wipe me out, but I like doing it for others. I guess I like to feel like I'm needed here and that I'm useful. I never want to feel like I'm a burden. It sucks. Washing my dogs is strangely relaxing, even though we wind up making a mess. Animals have healing powers don't you think? And yes, as everyone else has said, having a good support base does wonders. I'd battled this illness for so long without a support group and just depended on my family. Finally I saw they need a break too. And I found two groups in my area and finally settled on one. It's been so helpful to spend time with people who are like me. We understand each other in ways that even our mothers don't understand. Like on this website! I'm so thankful I found it too!

And I agree with the poster about not planning things. It stresses me out to set a date and try not to get sick in that time frame. It's better for me to do things when I feel like it. When I feel healthy and can walk for an hour, let's go to the park! When I'm too tired to move, let me nap. Spontaneity can be a blessing.

32 months ago

Keri

I thought I'd fill everyone in on a little secret....If you want to try
something that will definitely work for joint and or muscle pain,
please try - Absorbine Veterinary Liniment Gel Spearmint Scent. 
My grandmother told me about it and I have kept a bottle around ever
since. I works far better than anything over the counter or
prescription. And you can use as much or as little of it as you want.  

If you are interested... you can find it at feed stores and
it only costs about 12-13 dollars. The bottle is white with an orange
label and it has a horse on the front of the bottle. I promise it will work. Just be careful not to get it on an area that has a rash or break out. Be sure to wash hands throughly when you are done applying.  I hope this will help!!!

32 months ago