lia 🌸🕊🧸
Region: US
Sunday 22 March 2026 19:08:28 GMT
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☆ Neilan ☆ :
My friend @Just Revived who’s 100% bedbound from severe ME said one time “I consider myself closer to the functioning of a healthy person than to someone with profoundly severe ME”.
2026-03-22 19:21:16
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✿ | V I C T O R I A | ✿ :
Fellow severe ME patient here…I love coming across your videos and seeing you share with so much authenticity. I enjoy hearing your perspectives and see the hard work and effort you put into advocating for this disease. thank you for all the work you’re doing with so little spoons ❤️
2026-03-23 03:31:25
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inayaa_sh :
Wishing you a lot of low symptom days ☹️🩷🫶🏻
2026-03-22 19:29:11
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peachy.paws.dog.grooming :
Genuine question if you can’t wash your hair as much and it hurts your head when it’s super oily cause it weighs it down why not just cut your hair to make it more manageable
2026-03-23 03:16:32
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Cindy :
Hello! I am just curious, hopefully this doesn’t sound any wrong way 🙏. But how can you financially sustain yourselves? Is your husband working or you have online businesses/stocks or etc?
2026-03-24 00:42:49
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Blossom Darling :
your perspective about your illness and disability as a whole has been helping me immensely lately. your practice of radical gratitude is on my mind every day!
2026-03-22 21:48:43
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Saria :
My heart goes out to you .
2026-03-22 20:48:38
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Rose :D :
i have ME/CFS too (plus pots and fibro) and although my me is not as severe as yours- i can be homebound for long periods and bedbound for a few days at a time- I truly understand the struggle. I’m wishing many low symptom days ahead. I wish you a day soon where you wake up and the sunlight isn’t as blinding. I wish you a day soon where half-way through you get a little burst of energy and sit up in bed to play a video game or whatever your hobbies are and then suffer very little PEM after it. I wish you a day soon where your condition start to feel a little lighter even if it is just one day.
2026-03-31 16:40:01
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Jassy :
How far does it get?
2026-05-25 06:34:55
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Skye :
what is me?
2026-03-28 22:38:10
0
Amanda :
My feet and hands are always hurting when I put shoes on or touch my hands
2026-03-25 02:14:36
1
Bubble.!!! :
Sending all the best wishes and virtual hugs. We’re all so proud of you for finding strength to post for us 💗 take some extra time for yourself, we all care about you 🫶🩷
2026-03-22 19:41:47
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Quinn 🖤 :
Do you take painkillers?? Would they help? I’m on daily opiods
2026-03-27 04:32:57
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Gastroparesis Girlie :
❤️Gratitude❤️love it
2026-03-26 15:25:49
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rhondaashcroft4 :
Your amazing 😃
2026-04-06 10:47:14
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eva :
I hope you have a better few hours at the very least soon Lia, you help me so much with your posts, I'm in a very similar situation just no full time caregiver and I have no friends at all so really, this is my whole community even if I stay in the shadows. When and if you feel like it and if you feel a bit better, do you have any tips for dealing with the medical gaslighting? I just switched from private healthcare to public (I'm in Spain) and when talking to my new doctor, he straight up said I'm making "5 year old girl excuses" when I say I genuinely can't move, exercise and "just study/work" like he says, since I'm "too young". I'm not getting over it and it hurts so much not being believed while going through this. I'm never going back to the doctors again that's for sure, they don't have a cure so why even follow my condition if they're just gonna destroy me mentally. sorry for venting, I'm just hoping someone can give some tips on how to cope when even if it sounds cringy, it feels like the world is against me and I'm crazy when I'm bedbound unable to move, with a never ending flu fever and pains all over, 0 energy etc, I mean you know exactly how it feels. ugh I just wanna hug all of you going through the same thing. You are not alone, I love you guys. And really thank you Lia for even having this account, it must take an insane toll on you having to take videos and post so often, it's incredibly hard to be an ME activist on its own because many of us literally can't even speak or post and I know that must be you too most of the time. you're a hero I hope you know this
2026-03-25 10:48:40
1
🌸 :
😳😳😳
2026-03-25 09:27:19
1
𝙻𝚞𝚗𝚊 𝙳𝚎𝚕 𝙶𝚛𝚎𝚢 🌬️ :
🤍
2026-03-22 21:43:21
0
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