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#chronically ill

So uh. If spoony tumblr knows of any Actually Scent Free shampoo/conditioners(ideally curl/color friendly but honestly I’ll take Literally Anything) that don’t break the bank I’d be Genuinely Indebted to y'all. I will also gladly take recommendations for diys or just like. Anything bc my quality of life is really suffering atm

Right now I legitimately can’t wash my hair at all because all of the hair care products I’ve found that claim to be scent free are actually products that don’t add perfume and even the vv mild smells of their natural ingredients are enough to cause me severe migraines to where I struggle to stand or even eat the day after my shower even with my medication

Um. I used head and shoulders classic but that’s only safe on like. P good days? And is Really Frickin Bad for my hair as well if y'all need a reference on how much smell is Too Much

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I think I’m just having a rough day, so I’m just going to vent here because none of my friends follow this account so I wont upset them or bother them. Ignore this if you want to, I’m not going to proof read it lol. 

I’m so tired of being sick. I’ve basically lost all my IRL friends because I never went to school. I’ve been pushing myself away from my online friends and I don’t know how to talk to them again. I’m tried and I’m lonely. I’m not sure if I’ll ever be able to deal with the fact the I’m never going to get better, and that I’m going to have to deal with this for the rest of my life. I don’t blame my friends for letting me distance myself cause I’ve not been putting in the effort to maintain the friendships because I’m so tired. I can’t expect them to put all the effort in. 

I’m tired. I’m tired. I’m tired.

I can’t focus on anything so I can’t even get the last bit of my schoolwork done. And because I was so behind in school this year, I’ll be doing more courses over the summer. It’s never going to stop. I feel like I never get a moment to breath. Any time I have ANY energy I just put it into school work and nothing else. I don’t get to have the summer off because my I fell so behind in school. I don’t get to have a relaxing summer. 

Everything makes me tired and I feel like I have no energy left to use. But it doesn’t matter because I still have stuff to do, so I have ignore the fact I’m so tired because I’m not allowed a break. Taking a break means I fall more behind. I realize that I have so much internalized ableism, but I also know that it doesn’t matter.

I’ve also been thinking about a wheelchair for months. I know we can’t go out rn anyway but I think it would help with me going out more. I’ve had the conversation with my mom about it so I think she would be okay with it. But I just know that my doctors wouldn’t like it. They’d think I’d failed, or I hadn’t tried hard enough to get better. Each time I go back it’s always just, “you need to exercise more and strengthen your muscles”. LIKE, I KNOW CARRIE. I’M TRYING MY FUCKING BEST. It’s really fucking hard to exercise when I either faint or am to tired to even lift my fucking head. They’d basically be like “oh a wheelchair won’t help because you’ll be less active”. But at least I’d be out and doing things?? Idk, I know people say that if you think it would help, to get one but I don’t think my doctors feel the same. When I was in Paris, I used wheelchairs in so many places and it helped SO MUCH. 

Idk. I’m just tired of being sick. I’m lonely and tired. I feel like I can never get a moment to breathe. I don’t know how I can deal with this for the rest of my life. No treatment I’ve ever tried has actually helped me and I’m still getting worse. 

Goodnight, I’ll still be tired in the morning…

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I honestly just want to take a minute to praise my fellow pain warriors. I know it may not seem like it sometimes, I know that being strong everyday 24/7 is exhausting, I know that this isn’t what you envisioned for yourself, but I am SO proud of you. You have survived every single one of your worst days. Those days where it seemed as if you weren’t going to. But you did. Whether you were able to run around or had to spend the day resting (which your body needs frequently so if you’re anything like me do not feel bad about it), I am so proud of you. Fibromyalgia and other chronic illnesses are not easy, and each day you survive, I hope you feel so proud of yourself as I do you.

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What’s it like to be high functioning and chronically ill? Probably not what you think unless you’ve been there.

Being chronically ill has a lot of baggage and a lot to think about all the time. Your brain I constantly thinking and calculating of how to do every single small task in the most comfortable way for the least amount of potential pain. On top of that, I also carry OCD. OCD isn’t being a neat freak or like things in color order. It’s a compulsive constant stream of thoughts that repeat and repeat until you act on them.

I work 40 hours a week, so physical therapy, and do other forms of exercise such as playing casual basketball, spikeball, corn hole, tennis, biking, etc. There are days when I have severe muscle aches throughout my legs, on top of extremely loose and painful joints, to where I can barely move — but I’m still working. It’s an unbelievably task to bear, but I’m one of the lucky ones who is even well enough to work!

My best advice is to make it a point every second of your day to make yourself as comfortable as you possibly can. DO YOUR PHYSICAL THERAPY. Don’t listen to every doctor, most of them are wrong when it comes to EDS. I have heating pads, I’ve packs that Velcro around my legs, compression gloves, tons of blankets, a memory foam pillow and mattress, in-soles, and weighted blankets. Do what’s best for you. Drop people, even family, who don’t believe your pain and health are real.

Feel free to message me if you want to talk more! Only about chronic illness.

Stay safe loves 💕

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“You’re only sensitive to the heat because you don’t sun bathe. Poor thermoregulation is an excuse made by lazy people.”



“Sorry, I can’t hear you. I have "Can’t-hear-abelism disease”, its really contagious in the disabled community. Tragic and incurable.“

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I just got the results for my blood allergy test. Its exactly what it always has been and what I thought it would be. There are some things on there I tested negative for (mostly egg whites tbh) that I know I react to so idek. The doctor is supposed to call me to discuss the results and where to go from here. He has no idea whats wrong with me and tbh I am over it.

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My food stamps have been cut in half and I don’t get what little I’ll get till the 11th and I need money to pay my therapist who I am over 1000 dollars indebted too, on top of being a mentally ill disabled person, who just got out of the hospital for a kidney infection and need to pay for dozens of medications to keep my mental and physical health from getting out of control.

If you could donate to me it would be very much appreciated,

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Okay, so I don’t know if anybody else can relate to this, but I wanted to reach out and see if anyone does because this is genuinely something I’ve struggled with. 

Is it common for people with Disabilities or Chronic Illnesses to not feel… Disabled Enough to actually call themselves Disabled?

Because personally, I’ve always wanted to support Disabled people outright and really get involved with the Community and Independent Artists with Disabilities, but I feel bad calling myself Disabled because I just don’t feel like I’m Disabled Enough to use the label. Like yeah, I have Autism, an Anxiety Disorder, Asthma and a Growth Hormone Deficiency, but none of those things are really overtly that debilitating to me, as I’m generally very high-functioning, as many would put it. 

Hell, whenever I tell somebody about my Autism, their immediate reaction is so often “Oh well you’re high-functioning so it doesn’t really count” which just makes me feel like I don’t belong in the Disabled or even the Autistic community as much as others do. Like yeah, I stim, have panic attacks, carry my Inhaler everywhere, and am definitely not neurotypical by any standards, but I can pass pretty well so I just don’t know if I actually count. So, while part of me wants to fight alongside Disabled People, another part of me almost feels like I’m not disabled enough to actually join and be a part of the community. Maybe that’s just my internalized insecurity or gatekeeping speaking, but it is genuinely something I’ve worried about.

Does anyone else know that feeling? Or does anybody else have opinions on not feeling like I’m… allowed to belong in the Disabled Community? I’d really appreciate some feedback, if anybody has any to give, so thanks so much in advance. Bye, hope you’re staying Healthy and having a Great Day!

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