How to deal with extremely tough days?
Hey there! I wish I’d seen your comment sooner, but I’m pleased to see your kind words now.
Yes, I’ve experienced decade after decade of pain, but finding groups like this in my latter years has brought caring and kind words to warm my heart. Trust me it matters and in response, I say, thank you
Saundra Kelley, you're welcome, Saundra. Sometimes people think that an aspiration has to be grandiose, but connection, while it seems small, is bigger and far more important than we realize. - Warmly, Donna (Team Member)
Thanks for giving me permission to do what I need to do on seriously bad flare-up days. I’m one of those people with multiple ailments that are a part of a connective tissue disease. It’s absolutely crazy-making because even on a good day, the pain engine is throbbing, just beneath my best efforts to stay in control. Like many others, I’ve lived this way all my life (77years) with what I’m told is a high pain threshold, but I’m not handling anything well at this point in time.
, I am really glad you took the time to update us, though I wish you had better news. And nothing I write can help take away your pain, although it would be awesome if it worked that way!
And, frankly, living with chronic pain for years, let alone decades, is absolutely exhausting (as you well know). And even being told you have a high pain threshold can come across a little dismissive. Like, "Oh, wow! You have a high pain threshold!" and that's the end of the conversation. And I think that happens because none of us can even offer any realistic solutions; not even many doctors.
I do hope you have people in your life that support you, even if they don't fully understand what you are going through.
And, heck, I keep hoping that every year, we are given more pain relief options that help!
Best, Erin, Team Member.
Hi
, I wanted to check back in with you and see how you're doing today, and if, as Erin wished, there have been more good days than tough days. - Warmly, Donna (Team Member) I’m sorry I didn’t see your thoughtful response to my lament months ago. But this is now, and I’m glad I found it. Good days - sweet, and bad - bitter, are always a blend of both. My 2 daughters, a couple of friends, books to read and explore, plus Public Radio and PBS pretty much fill my days with a measure of curiosity and joy. Still, pain can break through anything I’m doing and that’s when all bets are off till this the next time
Saundra Kelley, I feel you. I'm a RBKA (3 years) and I have phantom pains. I can ignore most little twinges, you get used to them. But then there are those that are bright, hot and sharp and in an instant become everything there is about yourself.
That's okay. Life these days is not easy and we can find ourselves buried in just getting through. I'm glad we did connect. And I hope your pain stays below surface level.
Curiosity and joy are awesome ways to meet the day! I am also curious, and I love nothing better than learning something new, or finding something that touches me with relevance. Resilience is one of the very bet qualities to have. - Warm (((hugs))), Donna (Team Member)
That's a really good question,
! I think each person finds their own way to deal with the really tough days, but some of our members have written about how they cope and I want to share some of their thoughts with you. Here's one piece on the topic -- https://raredisease.net/living/getting-through-tough-days. And, while this is more on the topic of self care, I thought you might find the tips relatable -- https://raredisease.net/living/self-care-tips. Sometimes, the best you can do is hunker down and take care of yourself until the toughest of tough days pass. It's not easy, but you have to do what gets you through. Binge watch your favorite shows, snuggle in bed (if that helps), take a warm bath; whatever is best for you!
I hope you experience more good days than bad and please know you are not alone in this!
Gentle Hugs, Erin, Team Member.
