Sleepless in ?

[Ironbutterfly]

Hi everyone, I'm new to the forum but just wanted to share a few thoughts. I wonder how many of us wake at night feeling alone and afraid, waiting for the next new symptom or weird feeling. If you find yourself in this situation, send a thought or even a prayer to all the others experiencing similar feelings - lupus and all the other auto-immune conditions can be so scary and the fear and pain always seems to be magnified at night! We are all in the same boat - hopefully paddling back to calmer waters in the near future. Blessings to you all.

[dgleds]

a very nice idea ...

[Jasmine0505]

Hi,

I'm CJ I totally understand, my pain is constant. It's awful. The pain wakes me, so my way to distract myself is to clean what's already clean, then I sleep most of the day.

I was diagnosed inApril, but they think I've had it for a while.

I hope all of you have some sort f support, or a group you have comfort with.

It's terrible having this disease, but trying to deal/handle it alone is almost as unbearable as the pain.

God Bless all of you, try to find comfort in whatever you believe in.

Find a good understanding Rheumatologist that will help you.

Try to get comfortable, and get rest.

Best Wishes

[Ironbutterfly in reply to Jasmine0505]

Hello CJ - thanks for your lovely reply. We are all trying to cope with such a challenging condition, but knowing that you're not alone and others are having the same difficulties is a help. God bless.

[Jasmine0505 in reply to Ironbutterfly]

Thank you Iron butterfly,

I can't believe the pain, and I do try to focus on the good days, even tho they are few and far between.

I'm thankful for my husband who is my only support.

I thought that the lupus was pain enough, but shingles on top is horrible.

Thank you again for your kind words

[1000faces]

Thanks for your comments, you hit the nail on the head. How do you get the point across to family that lives in 3 different states and you only see a few times a year.

[Ironbutterfly in reply to 1000faces]

Hello 1000 faces. Thank you for taking the trouble to reply. I was diagnosed with lupus nearly twenty six years ago and it still has the capacity to frighten me! It's almost impossible to get across to anyone how dreadful this condition can make you feel - even with all the support and love. All I can say to you is enjoy the good days - hold on to the thought that all the bad will pass - try to visualise a really good time in your life and it will return. Remember you are not alone - there are thousands of us struggling to cope. Blessings and best wishes to you. I will be thinking of you.

[1000faces]

Thank you for your reply. The lupus family is huge; good to have a support group. Wish I didn't need it but we play the hand wearer dealt. Be well