Rest is the only answer!

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Oh my goodness...I'm sorry, I got distracted by the adorable cuteness of this pup!
What a cutie, I bet he can make even the worse days a bit better!
In the meantime, please let me say that so many in this community share your sentiments. It's so hard for others (not affected by Lupus) to truly understand.
Hopefully others will chime in here with some helpful suggestions.
I'm sharing a few links that you may find helpful: https://lupus.net/forums/family-support, https://lupus.net/living-coping and https://lupus.net/living/support-from-loved-ones.
Having a good support system can make a significant difference. Increased awareness and education can help. If possible, you may try to share these articles (or this site lupus.net) with family members.

Always know we're here for help and support, Doreen Team Member)

Thank you for your comment and support, it’s alway nice to know that you’re not going though all the hard times alone….and yes Elsie helps me through the tough days with a waggy tail and and a cuddle! 💕

I definitely feel this! It's harder in the summer bc I want to get outside and do more too, but there are times I can't (like the other day when there was a July 4th grill party in the evening and it was well above 80 and HOT and BRIGHT). Let the people around you know that you prefer indoor activities or to do things on days where it's rainier/cooler/later or earlier in the day. Maybe scope out the site in advance - is there a pavilion you can sit in so you have some protection from the sun? Let them know you can only stay a limited time. Take a sun-blocking parasol or wear cooling packs. If large groups of people are stimulating, meet with smaller groups or individually - you can have a deeper richer experience that way. Make friends locally with someone who shares a similar health condition and commiserate when you need tips or just to vent. Put up a sign on your door that says "Recharging...do not talk to me" when you need to rest. Sometimes people need a visual reminder and it can get tiring to explain. Just some thoughts! Praying for you!

I engage with my children (and chosen family) regularly about the impact lupus has on me. They understand and it makes them sad. But they also become more aware and empathetic. I also invite them into my space to be company for me. I don't always have to be the entertainer. They can also care for me. 😀 When my kids were young, we would have snacks and watch movies in bed. My siblings tho..I've had to develop a thick skin about their reactions and not engage as much. My sister FINALLY got it after I sat in the sun for an hour and then had to go sleep for 2! I no longer keep company with judgemental people. I owe no one an explanation for my existence. None of us do.

To cope with symptoms, I up the dose of my immunosuppressant and do a depomedrol injection if they get too bad. And I sleep soooo much. I spend my Saturday in bed. I sometimes get angry about that because I feel like I'm missing out on life. But it does give me spoons for the rest of the week.

I hope that helps. You're not alone! Blessings to you on this lupus journey. I pray for you to be surrounded by kind hearts.