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Going to the Doctor When You Have a Chronic Illness

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This fact is so important and so difficult to explain. I’m years and years into dealing with chronic conditions and I still can’t fully comprehend that I can get eight hours of sleep (if I’m lucky and it’s almost always at the “wrong” time) and wake up so exhausted that brushing my teeth, washing my face, and using the toilet require me to get back in bed and rest some more. When I am able to stay up for a while, I move more slowly than I realize. The brain fog obliterates my plans. Because every day brings more that needs doing and because I can’t even catch up on the neglected tasks of the days before, I fall more and more behind. I cannot become accustomed to such a life and the need to adapt constantly to my ever-changing state is difficult for everyone around me as well.

I do not have twenty-four hours a day. I strive to be productive that many hours a week.

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Let’s all grow up and do this.

What do you want to be when you grow up?

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We glamorize “revolutions”, but wearing a mask is boring.

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“UnMasked Thoughts” #6 - Medium, face masks and paint markers.

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• January 2025, Ave •

Image description under read more and in alt text

[Image description of a blue marble patterned KN95 against an off-white background with words written in red paint marker that reads: “You want a revolution…But won’t wear a mask?” The artist social media handle @afroflowerr is on the bottom of the mask. END ID]

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We let ourselves forget at our peril. It’s not just COVID. Masks can protect against the rise of measles, bird flu, and whatever else is coming our way.

I remember researching the black plague and how they ran out of space for burials…

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UnMasked Thoughts: 7 - Medium, face masks and paint markers

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• January 2025, Ave •

Image description in alt text and under keep-reading

Image description of the backside of a white 3M N95 Aura face mask, with text written in black paint marker that reads: “I remember those refrigerated TRUCKS”. The artist Instagram handle @afroflowerr is vertically on the mask’s lower right corner. END ID

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Be aware: your choices matter. The governments should be making N95 masks available to all who are willing to wear them for their own protection and for the protection. The mask you wear can save a life.

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Taking care of the disabled and injured is human nature actually. We have evidence of our ancestors caring for folks with disabilities. We're a cooperative species that takes care of their own. If our starving, weary, and hunted ancestors could care for the disabled members of their tribe, in this era of modern medicine and abundant resources we absolutely can afford to do the same.

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Hope you're having a wonderful morning. I peeped a lot of covid posts on your blog. I do hope you're okay healthwise...?

@unfoldingpayges Sorry for the delayed response. I forget to check my Tumblr messages; I rarely get any questions.

My interest in health issues is, indeed, personal and not disinterested. What about you?

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It’s frustrating when your body can’t handle the amount of activity you want or need to do- and I’m not talking about exercise, I’m talking about activities as in the things you do everyday: showering, hobbies, work school, chores, hanging out with friends, watching tv, etc. Now just imagine not being able to do all of those things, even if you absolutely need to, imagine having to pick and choose every single day what you can do, and what is worth pushing past your symptoms for. Will I shower or do the dishes today? Cook dinner or do a hobby I haven’t been able to get to in a week? Rest or ignore the symptoms knowing I will feel worse later if I do so? It may seem like a silly, inconvenient, even stupid way of doing things to you, but to me this is my everyday life, if I do not make these wagers I will suffer for it, and oftentimes I will still suffer for it despite these sacrifices and my best efforts.

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This applies not only to the “disease” of being female, but to chronic/invisible illnesses as well.

the cycle of life

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I’m so glad someone said this.

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Karen Hargrave @karenlhargrave

I’ve been slowly making my way through the excellent book from @PhysiosForME . This table on PEM is

I wish every healthcare worker would read this!

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One of the best shot of Total Solar Eclipse from 08-04-2024.

Via @nasa-official

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I want a medical team that comprises doctors and therapists who have chronic illnesses.

Of course, if they are able to practice, then their illnesses wouldn’t be severe enough for them to understand Lizzy H’s post. And I don’t really wish this life on others. So I’d take doctors who are willing to do the research instead of sending me off to do it with the spoonfuls of energy that I don’t have. I’d like health care professionals who will read the research I bring them. I’d like physicians who will reach out to the Bateman Horne Center and the Stanford ME/CFS Center and who will go to sessions at conferences on chronic illnesses. I’d like them to get on Tumblr and other sites where those of us with ME and pain and fibromyalgia and long-COVID and other life-long, debilitating conditions post about what it is like to live with the contradictory messages of “we can’t help you” and “just think positively.” I’d like them to confront the despair that comes from loss of independence, of friends, of jobs and careers, of identity, of purpose and meaning. I don’t want to be told to go out and do something I enjoy when going out and doing something I enjoy makes me bed-bound and is hard to enjoy anyway knowing the steep price I’ll pay for the effort. I’d like medical people to understand that having to be grateful to others ALL THE TIME becomes a burden, that I have become a burden.

If there’s an afterlife, I’ll bet Dante is kicking himself for not dedicating a circle of the Inferno to inflicting invisible disabilities on sinners.

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Prevent more such illnesses. Wear an N95 mask. Get vaccinated. Stay home of you’re ill. Employers: let your employees stay home when they’re ill. Let’s look out for each other.

Bio Lizzy H @hopefullizzy

30y/o creative, with complex health issues ME/CFS biomedical research. Passion for the wild, for kindness, and helping all people have a voice. Co-author

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Let’s do this!👆🏼

obsessed with how fixable society is, on a structural level.

obsessed with how all you need to do is throw money at public education and eliminate most standardized testing and you will start getting smarter, more engaged, kinder adults. obsessed with how giving people safe housing, reliable access to good food, and decent wages dramatically reduces drug overdoses and gun violence. obsessed with how much people actually want to get together and fix infrastructure, invent new ways of helping each other, and create global ways of living sustainably once you give them livable pay to do so. obsessed with how tracking diseases, developing medicines, and improving public health becomes so much easier when you just make healthcare free at point of use.

obsessed with how easy it all becomes, if we can just figure out how to wrench the wealth out of the hands of the hoarders.