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@fibromyalgicaf
Hi,
I'm here mostly to blog about my experience of living with fibromyalgia/chronic illness (which will include some awareness and disability rights content), and to connect with other people who live with chronic illnesses and disabilities, but I'm also here for your memes, animal pics/videos, sci-fi references, random facts, and other stuff!
Always happy to receive asks ✌️
About me (in no particular order)...
Anya is live and ready to show you everything. Watch her strip, dance, and perform exclusive shows just for you. Interact in real-time and make your fantasies come true.
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Idk what person with chronic illness needs to hear this, but you can do things to make your responsibilities nicer for yourself. You can get an ice cream after a blood draw. You can sit down for tv time after an injection. You can pick out the bandaids that have cartoon characters on them instead of the plain ones. Being an adult doesn’t stop you from benefiting from encouragement. Go for whatever fits with your routine/abilities/budget and makes life a little better. A spoonful of sugar helps the medicine go down etc etc
Today's the first day in two weeks I've actually gotten out of bed properly. I've been in so much pain, so fatigued, and so brain foggy, dizzy, etc that I've only gotten up for the toilet. I hate being stuck in bed like that. Just getting up for a few hours today to have a bath and watch the childling play Minecraft for a bit feels like a big change. Looking forward to clean sheets night after finally being able to wash my hair!
I try to surround myself with whimsy in order to make being disabled and tired and in pain suck less but sometimes it just. sucks. no matter how much you try to romanticize your life.
Sometimes you are just stuck in bed in a messy room, surrounded by trash you couldn’t sit up to throw away, dishes piled on the floor by the bed. Your body aches but you’re too tired to get up to get a hot pack or some pain meds. Not to mention you’ve needed to use the bathroom and have for hours but no one is home to help you get up so you just have to wait. And you’re dehydrated but ran out of water by your bed. But you can’t get up. So you just lay there and it’s not whimsical at all.
Happy disability pride month to severely disabled people who are housebound/bedbound
happy disability pride month to severely disabled people who don’t have access to proper treatment or medical equipment, and are stuck without care that would ease symptoms or make their life easier
happy disability pride month to severely disabled people who won’t be getting better, and who will be getting worse, or who will be dying due to their conditions
happy disability pride month to severely disabled people with photosensitivity who can’t look at screens for long, and feel even more isolated by not being able to interact with much the disability community, even online
happy disability pride month to severely disabled people who aren’t happy to be severely disabled, but are happy to be alive
Anya is live and ready to show you everything. Watch her strip, dance, and perform exclusive shows just for you. Interact in real-time and make your fantasies come true.
Free to watch • No registration required • HD streaming
What Is Lymphatic Drainage Massage and Do You Need It?
"Lymphatic drainage massage relieves swelling that occurs when illness or medical treatment clogs your lymphatic system. Lymphatic massage involves gently manipulating specific areas of your body to move excess fluid buildup away from your tissues and toward working lymph vessels and lymph nodes so they can get rid of toxins in your body."
Lymphatic drainage massage moves waste toward your lymph nodes to rid your body of toxins and reduce fluid retention. Learn more.
"Healthcare providers mainly use manual lymphatic drainage to relieve lymphedema after breast cancer surgery. They also use it to treat lymphedema related to health conditions like: • Chronic venous insufficiency. • Fibromyalgia. • Injury. • Lipedema. • Rheumatoid arthritis.
... Lymph drainage massage can help if your lymphatic system isn’t working as it should. You might have a congested lymph system if you develop: • Bloating. • Brain fog. • Chronic sinus infections. • Fatigue. • Headaches. • Puffy, swollen ankles or hands. • Skin conditions like acne, dryness or rashes. • Swollen lymph nodes in your neck.
This disability pride month I would like the community to understand that Sometimes wheelchairs aren’t freedom.
Sometimes using a wheelchair means you can no longer get to the places that used to be important to you, and not because of man-made inaccessibility. I have sat with someone as they cried because they could no longer visit the place they had scattered a loved one’s ashes because not even the most expensive wheelchair in the world could handle the terrain. As much as I wanted to, my wheelchair meant that I couldn’t position myself in a way that would allow me to give them a proper hug. In that moment, our wheelchairs felt more like heavy weights than freedom.
And sometimes wheelchairs are like the legs of someone who can walk but would maybe benefit from a wheelchair themselves. Sometimes wheelchairs are exhausting and painful and you’re counting down the time before you’re able to be lifted into bed. Sure, like painful legs, you can do more with them than without, but constantly performing gratitude for something that hurts you is exhausting. And again, not because you need a better wheelchair, but because those are the limits of your body and the technology that exists.
Yes it’s important to challenge the idea that wheelchairs are always a tragedy. And yes, there are lots of people who have a positive relationship with their chair. But for a lot of people, including me, the pressure to love your wheelchair and see it as freedom is painful and feels like it erases huge amounts of my experiences with disability.
"We go through life just trying to get people to understand how different things are for us."
"Fibromyalgia isn’t “just muscle aches,” like you have after a long day of strenuous activity. It’s widespread – like all over your body, most of the time, and severe – meaning extreme, or abnormally bad (keyword: abnormally) muscle pain. Pain, not just aches. This pain does cause a constant ache, but that’s just another layer of pain that most don’t comprehend on top of the other pain... Fibromyalgia isn’t “just fatigue,” like you’d feel from living your life, or maybe having a little too much fun. It’s extreme fatigue and exhaustion that is present no matter how much rest you get, or how many medications you take. It will always be there in some form, even with a month’s vacation, because our bodies can’t repair like they are supposed to. Fibromyalgia isn’t “just having trouble sleeping.” It’s a serious disruption of sleep patterns, and sometimes severe insomnia, that medication either doesn’t help, or the side effects of are unacceptable. Can’t be trying to work or run errands the next day while falling asleep at your desk, or behind the wheel. Fibromyalgia isn’t “like having the flu.” Yes, some of the basic symptoms can be used to give you an idea of some of the feelings, but the aches and pain are likely worse than any you’ve ever felt unless you’ve been hit by a car or fallen off a cliff. Fibromyalgia isn’t “just depression.” Depression itself can be debilitating, so it’s not an easy thing to handle itself, but too many people are thinking those of us with fibromyalgia just need mental health care instead of understanding that this disease is mostly physical. In my personal opinion, the depression aspect is caused by the physical symptoms we experience. It’s pretty hard to be in pain 24/7 with a constantly disrupted sleep pattern, and not end up depressed. When you think about it that way, it seems kind of silly to think it’s the other way around, especially when so many of us have shown that we were able to function “normally” before the physical symptoms got too bad. Many with fibromyalgia push themselves to function at a level higher than they should for fear of letting people down. Invisible illnesses are harder for people to accept and acknowledge. Fibromyalgia isn’t “an excuse.” It’s the reason we’re unable to do everything a healthy person can. We can still live, we just need to do it in a much different way than what society normally expects."
Idea for those of you with particular sensory issues...
I dunno why I hadn't thought of this till today but 🤷♂️... You know how moisturiser leaves the palms of your hands feeling greasy? If you're like me and you hate that feeling, try applying the moisturizer to the backs of your hands and then use the backs of your hands to apply it to your face. That way your palms stay grease-free and the backs (which are often drier anyway) get a little moisture top-up!
Maybe the rest of you have already worked this out but thought I'd share just in case someone else with sensory stuff has made it to adulthood without realizing this was an option ✌️
They should invent a sleeping position that is actually comfortable. For the whole body.
Anya is live and ready to show you everything. Watch her strip, dance, and perform exclusive shows just for you. Interact in real-time and make your fantasies come true.
Free to watch • No registration required • HD streaming
Today is one of those days where you wake up and feeling alright, possibly even good, but then... you move. And suddenly, you realize your body was fully lying to you. The pains come jumping back, the stiffness resurfaces, the fatigue quickly builds, and within a few minutes, you realize it was all hiding just around the corner and you shouldn't have got your hopes up. Absolute betrayal.
Heat Intolerance
This disability pride month I'd like to talk about heat intolerance. Because honestly although it's not the first health issue that presented symptoms in my life. It was the first time I was like "I don't think my body works right".
And honestly given disability pride month is during one of the hottest months in the year. It seems fitting. Especially because there's a lot of disabilities and medications that cause it.
What is heat intolerance?
Simply speaking it's the inability for the body to regulate it's temperatures especially in hot settings to cool itself down.
Why is awareness important?
Because gaslighting people or worse not providing them a place to cool down just because you "feel fine" is extremely fucking dangerous.
What are the medicines that can cause heat intolerance?
Antihistamines (Allergy medications) . Decongestants (Sudafed or any medication that has the D at the end of it). Stimulants (ADHD medications. Steroids. Caffeine.) Beta-blockers (blood pressure medications). Overactive bladder treatment. Psychiatric medications (including but not limited to medications for depression and anxiety). Pain relievers. Antibiotics.
What medical conditions can cause heat intolerance?
EDS (Elhers-Danlos syndrome). Autism. ADHD. Migraines. Brain/spinal-cord injury. Sensory processing disorder. Chronic fatigue syndrome. Endocrin problems. POTS. Menopause. Hypothyroidism. Diabetes. Heart Disease. Multiple sclerosis. Mental health disorders.
What should I do if I suspect I have heat intolerance?
Reduce time outside during hot months. Keep your electrolytes up. Drink plenty of water. Stay out of the sun whenever possible if outside. Be aware of the symptoms of heat exhaustion and heat stroke.
Clothes that are best worn for heat intolerance. Loose lightweight breathable fabrics. Natural fibers. Long sleeves that protect from sunburn as sunburns will increase your risk. Light clothes that reflect light. Wide brimmed hats that shade the face and neck.
Cool. So what are those symptoms I'm supposed you be looking for?
Headaches. Excessive fatigue. Mood changes. Muscle cramping or weakness. Nausea/ vomiting. Rapid heartbeat. Excessive sweating or not sweating at all.
When should I do to the doctor?
If you suspect you have heat intolerance you can go to your PCP to discuss what medications you may be on and what you can do about it. Otherwise, please go to the emergency room if you have symptoms of heat stroke.
This is good information and all but why are you making this post?
To raise awareness. Not just for the people that have it but weren't aware of what it was called. But for all of the idiots that tried to gaslight me when I was in school because I was like "I don't think this is normal. Every time we do our mile run outside I vomit all over the place but other kids aren't doing that."
Also because people always blame me for over heating if I wear long sleeves or pants. I always like to take notes from what people in the middle east wear because they literally live in the excessive heat and spend long hours in the excessive heat. Often in clothing that covers most of their body. They've gotta know what they're doing, right?
I have some type of xenophobic comment about why people from the middle east cover up
Shut the fuck up 😊
-fae
Hey if you have chronic pain, you gotta remember that the cognitive load of dealing with that is exhausting. Just that alone. Never mind what else you've got going on.
You're not lazy or being dramatic; you're overloaded.
In programming, an interrupt is an event that takes precedence over everything else that happens. For example, you are sitting at the library computer working in Microsoft Word and suddenly the operating system interrupts with a message that the library is closing in 10 minutes and the computer will automatically shut down at that time. That interrupt is going to keep showing up until the library closes and you can’t do anything to stop it, even if you’re typing between interruptions.
The brain treats pain the same way. When you’re in chronic pain it’s like having constant alerts going off to tell you something you already know and you can’t get them to go away. The best you can do is work around them, but it is exhausting.
This is your annual reminder to not fucking touch disabled people or their aids. This means wheelchairs, sticks, canes, hearing aids, walkers, frames, or any other kind of aid that someone is using. Do not fucking touch us or our stuff.
"I don't mean to criticize people who are actually disabled, I'm just talking about people who could easily do it but are too lazy to bother-" well you're attacking both in practice because there is no way for you to tell the difference and the first group is a lot bigger than the second
Anya is live and ready to show you everything. Watch her strip, dance, and perform exclusive shows just for you. Interact in real-time and make your fantasies come true.
Free to watch • No registration required • HD streaming
If you're comfortable accusing anyone of faking disability, you're not a real ally to disabled people
One time when I was a kid a group of girls and I had to treat another student for hypothermia by ourselves because she had so many invisible health issues that the adults we asked for help didn't believe us. The student in question was actively hallucinating. When I finally ran for help the people I grabbed were slow as shit to respond, casually joking about how "dramatic" the person in question was.
The kid was picked up by an ambulance 30 minutes later.
Now as an adult working in security I get SO MANY folks- upper-middle aged mostly- coming to me to 'rat out' people they think are faking it.
I was once sent into a bathroom because a client demanded that the "fucker won't get out, so go drag them out"- I was NEVER going to do that, so I did a wellness check instead. You know who it was? A person recently released from the hospital after a car accident. They had a hole in their skull and major hearing loss. They couldn't answer the owner because they couldn't HEAR the owner.
Another time about a homeless man who got around town by kicking the ground from his wheelchair. "You know he doesn't actually need that thing, his legs work fine, it's just for pity points"- Oh, so he's not paralyzed, his wheelchair is performative? Funny story Dale, I actually know that guy, he was backed over by a truck and has chronic pain from his shattered pelvis. But sure, let's make him stand up and walk everywhere so nobody feels too bad for him and tries to help him or something.
"She doesn't need that scooter, I've seen her get out of it."
"Look how fat he is, because he just rides around and refuses to get up."
"She doesn't really need that cane- she comes here without it all the time"
Sincerely, truly, from the bottom of my heart- as someone who isn't physically disabled but hears this shit all the time- fuck off
i’ve seen some people (both on here and ig) minimizing ME/CFS like it’s no big deal (like how fibromyalgia was and still is treated) and if you think that, sincerely fuck off. and to do that during ME/CFS awareness month? cruel. after a man with very severe ME/CFS DIED? horrid.
ME/CFS is an extremely debilitating systemic disease with lethal potential. pwME have an extremely low quality of life and no approved treatments. the majority of people never recover.
take it seriously. this isn’t the “i’m tired” disease.
