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A Darling Thing

@a-darling-thing / a-darling-thing.tumblr.com

Gen X / Neurodivergent / Queer
18+ Sometimes NS4W (tagged - NSFT) Multifandom Blog
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spoonie-living

[Image: Illustrated pattern of brightly-wrapped presents on a green background. Credit: Viscious-Speed]

Spoonie Holiday Survival Masterpost

The holidays are great, for sure, but they’re also a huge source of stress and exhaustion—not the best for our sensitive selves. But fear not! We’ve got a collection of resources here to help you get through these cheery weeks with minimum pain and maximum festivity!

We’ll add to this as resources pop up, so definitely check back 🎁

#chronic illness#holidays#self-care#reference#resources
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neurowonderful

I have a meeting with my surgeon tomorrow

I’m going to have to walk on that knife edge between being knowledgeable/a hypochondriac, innocent/capable, clueless/educated, compliant/doormat, assertive/pushy, sick/not too sick, disabled/but not too different… I get tired just thinking about it. But it’s really, really important that I (at least try to) make my health needs/accommodations known.

Any good vibes, positive energy, prayers, or dark forces anyone can summon for me or send my way would be appreciated. Also, advice for getting a (white male) surgeon to take me and my mysterious health issues seriously while still coming off as a “good patient”.

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droidlust

Hiya! Chronic organ failure (and transplant recipient) here, and I’m gonna try and give you any helpful advice I can since I’ve dealt with a number of great and not so great surgeons/doctors. I’m going to to keep my thoughts as easy-to-read as possible, because I get disjointed and distracted WAY too easy. I’m sure you know most/if not all of these but it’s always nice to talk about it and get the thoughts out there with others. Using the word “Concerned” - For some reason, instead of saying “I’m scared of” or “I’ve read about”, I switched to saying the phrase “I’m concerned about ____” and surgeons have always tended to take the conversation serious, or at least they don’t interrupt me as much. Maybe worth a shot!

Notes - It makes surgeons and doctors nervous (and the good ones excited) when you take notes, even if it’s just scribbles to keep your mind moving, take a pad and pen with you and write keywords down. Or heck, any time you’re not feeling confident in what they say… then you can ask them about it after for clarification.

Bring someone - If I didn’t bring a friend, or family member to my doctors meetings (early on, before it was old hat) I’d have lost so much information. It keeps them accountable when there’s a witness, and it’s nice to have a person to help advocate for yourself.

Be a hypochondriac - In a figurative sense of course. I learned that no matter what, never second guess your pain or issues and mention -every- single one. No matter how small or insignificant you think it is? It’s worth talking about to make sure it’s on the record that you voiced it. Small things can become big things later, and the more information you get out there to a doctor/surgeon, the better chances there is for someone to take notice of all the puzzle pieces. Had I not learned this, several conditions of mine would never have been brought to light.

Google-Fu - Instead of bringing up google or searches, bring up other patients discussions. This way, a doctor cannot discount misinformation, and might look more critically at your concerns. Even though I googled my way through a LOT of medical issues, reading other patients stories helped me solidify choices I had to make without making the doctor give me that “eyeroll” attitude. Ask for another surgeon - If there is any reason at all you are not 90% confident about this human being, then please do yourself the biggest favor and look for a second opinion. It can save your life, and save your sanity! All in all it took me over a decade of dealing with life threatening issues both of mine, and those close to me to get into that “I know my shit” zone, and even now I quibble and get anxious around doctors I’ve known for a long time now. They are smart people, but they are people and errors can be made so the best thing anyone can do is advocate for yourself and be as educated as possible about a procedure. Good vibes to you, and hope things go fantastic <3.

#chronic illness#medical#resources#dealing with medical professionals#this is good advice
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One of the ‘gifts’ (if you want to frame it that way) of chronic illness, is that it has made it difficult, if not impossible, to ignore my physical and emotional needs, and it has made me better understand my value as a person.

This was a long weekend for us here in the States.  It’s a weekend where you do stuff outside, and usually have bar-b-q’s with family and friends.  I had plans.  I was going to get caught up on cleaning around the house (which DESPERATELY needs it).  I was going to try to write.  I was going to make a bunch of fun picnic foods for our bar-b-q.  

What have I been doing instead?  Laying in a heap on the sofa watching netflix, reading fanfic, popping pain killers, and browsing tumblr.  I’ve been sick.  Wracked with pain, completely exhausted, digestive issues making our bar-b-q plans an impossibility.

There was a time, a long time, when I grieved this sort of enforced change of plans.  Sometimes I was angry, and sometimes I cried, and sometimes I tried to force myself to do things anyway, always with disastrous results.  And those times when I did stop, did rest, as my body was dictating, I was always wracked with guilt.  I told my husband all the time that he deserved someone who could do things with him, actually share a life with him.  I felt useless, and helpless, and frustrated beyond belief.

But the last year or so, I’ve started to try and frame this thing differently.  I have limits.  I can choose to try to recognise my body’s limits early on, to not push myself past them, or my body will force me to later.  Either way, they won’t be ignored. 

Of course, sometimes I have to push through.  I have to pay bills.  I still hold a full time job.  It’s not physically strenuous, but it can be VERY mentally strenuous, and there is a strange link between too much mental/emotional/social strain, and physical symptoms popping up.  That’s been the hardest lesson to learn.  But, I’m trying.  It’s teaching me to see my mind as an inseparable part of my body, and vise versa.  

So here I sit, one more day in my long weekend left, wondering if I’ll accomplish a single thing on my ‘to-do’, or even my ‘want-to-do’ list.  I’m feeling better, but at this point, it’s still looking kind of unlikely.  And you know what.  That’s okay.  Because my value as a human being is not linked to my utility.  It’s not linked to being able to get a set number of things on a to-do list done.   

My value as a person lies in the fact that I am a person, and I am the only me there is, and I have my own thoughts, and my own feelings, and I love people in my own special way, and my value is intrinsic to being a human being.  And it’s chronic illness that is teaching me this.  I wish it hadn’t taken that.  But I’m here, and this is my lot, and I am learning it.  

I’m grateful.

#chronic illness#spoons#learning your limits#listening to your body#self-esteem#value#chronic pain#disability#asd
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soupcollector

Honestly a huge shoutout to everyone who had to stop doing what they love.

Shoutout to people who had to stop playing music and drawing because of arthritis.

Shoutout to people who loved to go hiking but can’t because of chronic fatigue.

Shoutout to everybody who’s ever had their health steal something they loved from them. Yall are so beautiful and worthwhile and I love you.

#thank you#this is so kind#chronic pain#chronic illness#it's very hard sometimes
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