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5 years ago by creativesoul (59)
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Hey, thanks for your post.
I find your writing easy to read and understand. The content (so far) has tended to be a bit dark, but that's your life, and I understand darkness.
It seems to me you have a good understanding of your illnesses and situation, and that your sadness is appropriate. I think most of what you talk about is very normal for somebody going through what you're going through. That doesn't make it any better or easier, I know.
Chronic pain is misunderstood by all who haven't experienced it. The best way most of us can explain this to people is "it takes on a life of its own". Not because we want it to, of course, but it happens eventually to anyone who suffers significant pain over a long period of time. It can't be ignored forever, and there are cumulative effects of suffering.
It sounds like, for you, the ups and downs are tiring and destructive. When you feel just a little bit well, you overdo it, and temporarily lack judgment in knowing when to scale back. At least you're becoming aware of that, and maybe it's the start of being able to improve it.
How are you for support? Family, friends, medical professionals, communities or groups? Sounds like you've got a furry companion at least :)
As for your bday, if it means a lot to you, I'm sorry it wasn't a good one. Personally I care very little for bdays. 29, hah, barely an adult at this point! ;) I'm pushing toward mid 40s. And really, we're both young. You're a wise 29, and despite not being in full health, you're also not dead, and you're in better health than some people are. Doesn't make it any better, but it's perspective. Sorry for being blunt, but it's kind of my only setting.
I hope you're able to remain at least somewhat optimistic for your tomorrows, which can make today's suffering a little more bearable. And I also hope that the suffering begins to subside, today and every day, until you're totally happy and healthy again, even if that takes a while. Lastly I hope you find something pleasant, fun, interesting, or exciting about today. Even if it's a small thing, it's something.
Anyway, I can hear you. I can even understand you. Hell, I can (at least partially) empathize with you!
You deserve better than to suffer like this. I'm sorry that you're going through it.
Please take care of yourself,
DRutter
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So grateful we connected! Thank you for reading this and taking a moment to understand what going through this means for me. The ups and downs are very destructive...and each burnout brings me closer to the edge. Dangerous way to continue to live...but at this time in my life I only have the awareness...not realistic solutions. A better support system would probably help quite alot. I live alone and only have my mom checking in once every few days...the rest of my family keeps their distance. I never made any new friends after moving here and it's too isolated to get around anyway. Other old friends drifted away or decided to avoid me much like family does. Compassion is usually there...they can sometimes see how much pain I experience...but don't want to see it or be reminded that something this bad can strike you down. They don't want to be around someone who gets easily tired. As for medical professionals...offline communities and groups those are non existent too. I have tried to establish them time and time again but so far there is always something preventing them from sticking. Completely on my own here...accept for my cat of course! She is my best friend...family and light in my life. Strip everything else away...and spending each day with her is what keeps me going. I don't often make comparisons on whose health is worse to gain perspective because it's relative...and somewhat subjective too. Similar to comparing happiness...comparing misery never really results in something beneficial to work with. Anyway...thank you so very much for the kind words! Not sure when ill be back in action.
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I was too late to UV your original post so I UV'd this comment. <3
I feel a lot of what you said. I wish there was a magick healing wand I could wave to heal all my friends who deal with chronic conditions of various types. People who don't I don't think fully grasp how it wears on you.
I hope the canna-curate fundraiser is successful enough to get you some tinctures! Much love. <3
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You are not alone!
Thank you for sharing dark thoughts on a forum that seems to promote all puppy dogs and rainbows - positive thinking! good intentions! - yet so many of us at Steemit struggle with chronic pain, autoimmune issues, and Chesterton's "Black Dog" - other people seem to shout for joy and high-five each other daily, while people like you and me struggle to be able to "party on." In March, my usual chronic daily headache turned into a nonstop pain fest in my head (my annual flu shot failed, and influenza headaches are whoppers). I went on Amitryptiline (Elavil) and it helped, until I had to fight daily against thoughts of wanting to die. Not suicide, but reading obituaries and thinking "It should have been me." Looking at all my trespasses, my sins of omission (what I have failed to do may be worse than what I have done). I went off the Elavil. The brutal headache flared anew a few weeks later. I'm already on Celexa (citalopram) and am considering dry-needling or botox for headaches or a procedure (neurectomy) that sounds like the equivalent of a root canal on the nerves in the neck.
Thank you
for sharing this, and hang in there - you're doing great just be being able to talk about it, especially in a community that's all about positivity, progress, accomplishments, and building on success.
No pushups on video
from this grandma. Am I a schmuck? Is this another case of "what I have failed to do" -- sins of commission (I do not harm others, not knowingly) versus sins of omission (I have failed to do good things for others). Whatever good I have done never seems enough. I look at what others are doing and know I could and should do more.
Wishing you all that is good
and smiling because you're already there: I will now hug my cat...drink a glass of red wine and do my best to relax. Tomorrow is another day to start again....and build up new dreams too.
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Your message of support and understanding made me happy. Apologies for taking so long to respond! Putting even just an inkling of the dark stuff on here is very difficult because of those rainbows. Positive is good to see but struggles also need to seen and heard just as much. Sorry to hear about the headaches...I had one very bad experience with Elavil...and everyone that mentions it seems to have something bad to say about it too. I can understand needing to try options to get relief...but it should honestly be taken off the market. Anyway...only took a few weeks for me to feel halfway grounded with just enough energy to start posting random stuff and working on projects again.
Edited to add definitely try the botox!
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I love you soul sister ❤️💙❤️💙❤️ this whole entry just made me messy cry. I feel you on so many levels and am going to write you an email before anything else today. But I want you to know, your divine self is worth celebrating. In simple ways if not grand and celebrate yourself everyday ❤️ I'm sending you all kinds of love from the east coast. Smile today please, better days are ahead ❤️
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Happy birthday!
That condition sounds sucky as. Hope the break helps at least a little bit.
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Happy birthday @creativesoul, I could not even begin to understand what you're going through, but I do hope you get the medicine you need to fight the pain, and that you can have a much happier 30th birthday next year.
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Hello!
This post has been manually curated, resteemed
and gifted with some virtually delicious cake
from the @helpiecake curation team!
Much love to you from all of us at @helpie!
Keep up the great work!
look i know we havent talk in a while but girl here you got a 🎂 cake for your bday!!! please remember always take your time but come back!
Manually curated by @victoriabsb.
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