any other spoonies have that thing where you’re in pain but you’re so used to it you don’t do anything to make it better? Like you could take ibuprofen or drink water or use the heating pad or whatever but it’s just going to come back later and you’re tired now anyway so you just meh can’t be bothered
I can fully understand the frustration other chronically ill people get at long covid getting more attention, especially with sensationalist headlines acting as if long covid is the only chronic illness ever, but holy shit do NOT take that frustration out on people with long covid
Yes, it absolutely fucking sucks that most chronic illnesses are under researched and lack funding and attention - believe me, it’s the bane of my fucking existence - but that’s not the fault of people with long covid! Stop getting mad at them and acting like it’s a competition of who’s been sick the longest!
anyone else with chronic illness (chronic fatigue in particular) feel like they’ve kind of lost some of their intelligence or cognitive function? I get so upset that I struggle to understand consepts that I used to. It’s so difficult to understand things I read. I can’t get my point across like I used to. I feel so fucking useless and frustrated. I used to write, read and constantly learn and now I can barely function.
please tell me I’m not alone. please tell me I’m not just lazy or losing intelligence???
Some people want to ignore your chronic pain after awhile. They want to treat it like an acute injury, old news. But it’s not. It’s your life. So, don’t feel bad asserting yourself when someone tries to ignore the pain you feel. It took me many of years to understand this, but someone erasing your disability is not someone being kind. Or someone complimenting you. At best they are ignorant, at worst they’re a dick. Either way, correct them. Make them see you, see your pain. Even if your disability is invisible to most people, don’t let them take your voice. No, you aren’t lazy because you haven’t been able to leave the house. No, getting a job doesn’t have to be your biggest priority at the moment. You are in this much pain and you are still kind, resilient, and amazing. I think able-bodied people can stand to acknowledge you without ignoring a huge part of your life.
Simple Acts of Care you can do for yourself when you are burnt out but feel gross
as someone with a chronic illness and adhd, burnout and exhaustion are things i’m familiar with
these won’t cure you but they can make you feel a bit better about yourself during times where you can’t do much.
-wash something
be it your face, your hair, your body it doesn’t matter. put as much into it as you can, wash your face in the sink or sit in the shower or bath. this is always the top thing that makes me feel better but it is also the most difficult when i’m exhausted.
-apply lotion
hands, body, lips, face after a quick rinse or wash. especially if you live in a dry climate, having moisturized skin always makes a positive difference.
-add some good smells
deodorant or perfume/body spray or whatever good smells you got. instant pick me up esp if you can’t muster the energy to shower
-brush brush baby
brush your hair, brush your teeth, having something be sorted out and clean is the best de-grossifyer,esp if you’re like me and tend to neglect those needs when burnt out
-change your clothes
this can be very simply changing your underwear, or changing your entire outfit, sometimes getting dressed up can help but so can simply changing into a different set of comfy clothes
- environment!!!
one of the best ways to cope with being in a bad state for me is to create a positive atmosphere around me. this can be as simple as turning on a wax melt or lighting a candle or incense, turning on an oil diffuser, turning out the lights and turning on mood lighting, putting something cozy on the tv, placing crystals around you etc. or more difficultly cleaning your room or making your bed (then unmaking it to sit in so it’s extra comfy)
I often struggle with finding the good in being disabled and chronically ill. But one of the best things that has come out of this is a better understanding of humanity:
I better understand the need for equity, equality, fairness, and accessibility in society.
I am more aware of problematic health care, insurance, and governmental regulations for disadvantaged groups.
I understand the feelings that come with being isolated, discriminated against, excluded, and ridiculed.
I understand the pain, loss, helplessness, courage, and, determination that comes with physical and mental illnesses.
I understand humanity a lot better than before.
With so much being taken away from me, I’ve gained in compassion for the complexities of people’s struggles.
Thank you all for raising awareness about the injustices we face and for being so supportive of each other. You are the good that makes this journey easier ❤.
4 years ago, I was sleeping about 4 hours every night. Many of my closest friends at the time had, or were in the process of, leaving me and I would cry from the loneliness. I was fighting with my parents and wanted to leave home. They thought I was exaggerating and attention-seeking. Every appointment ended with “we can’t help you” or “there’s nothing wrong with you” or medications that made me worse, to put it lightly. More than once I wanted to end it
This morning, I woke up after sleeping for 9 hours in a room built by my dad specially for me, so I would have a space for me if I stay at home longer because of my health. I texted my best friend who yesterday asked me to be her bridesmaid. Before asking me, she spent weeks making sure it would all be accessible and fun for me, not stressful. My mum brought my medication in for me, ones that actually make me feel better, and asked how I was feeling. Later I’ll text one of the members of my lovely and amazingly supportive medical team to see when we can video call. We always have tea when we call, and cookies or a cupcake- food doesn’t scare me so much anymore. Every appointment ends with “you’re doing so well”. I haven’t hurt myself in years, I actually stopped counting, and when it all gets too much I know I have people I can talk to and strategies prepared to get through it and it will pass. Life is still hard. But it keeps moving, and I’m so grateful.
I don’t know who needs to hear this, but it will be ok. It might not be now, and I don’t know when it will be, but it will be. It doesn’t all happen at once. Things are still hard. But one day you’ll wake up and be so glad you didn’t leave, because you would have missed these moments of happiness and love, and some of them-probably more than you realise- wouldn’t have been possible without you.
Sushi and I would like to thank all of you for the donations, the well wishes and all the helpful tips! From the bottom of our hearts: THANK YOU, THANK YOU, THANK YOU!
Posts will be queued up as we both rest & recuperate.
Going to pick Sushi up at 12:30 — thanks to all of you! What I didn’t get in donations I will be able to set up a payment plan for. I’m truly & wholeheartedly thankful to each and every one of you for helping me & my Sushi.
I’m amazed by your generosity and thoughtfulness. There’s nothing I can say that would begin to explain how much you all mean to me. There’s nothing like the Spoonie community — we band together for each other and there’s no greater feeling than not being alone in your darkest times. You’ve all been here for me and I will continue to be there for you.
This is why I created SpoonieStrong. To maintain the feeling of community I’ve felt since the beginning of my chronic illness journey. I wish all of you the love I feel right now.
I just spent 4 hours at the vet with my cat Sushi. He has an impacted colon and needs emergency care. I applied for CareCredit but of course didn’t get approved.
The bill is going to be over $2000. (I’ll post a pic later.) I’m waiting up til the vet calls to let me know he’s okay after his procedure. I’m so worried about him. And I don’t know how I’m going to pay for this. I hate asking, but I really do need you help if you can spare it.
Sushi is my best buddy, my “Dr Magoosh” whose snuggles make me feel better on my worst days. We bond over our aches and pains and he’s my constant companion. Please help him.
