#Managing Symptoms

[compassionmattersmost]

The Art of Pacing: Managing Chronic Fatigue Syndrome with Skillful Means

There is a rhythm to living with chronic illness, one that requires a kind of surrender. Those who walk the path with myalgic encephalomyelitis or chronic fatigue syndrome soon learn that pacing is not merely a strategy—it becomes an art form, a way of listening, of harmonizing with the body’s quiet whispers before they become cries. To pace oneself is to acknowledge the body’s finite energy, to…

[vizthedatum]

I realize that a part of me pushing myself to do things might be internally ableist, but due to my auDHD, I’m really trying to just push myself to do things that will be beneficial later (and allowing myself to give up once I’ve started something and decided I don’t like it)

[bluebyrd-screaming]

To all of my folks out there who are on clonidine: please do not skip your doses

It is not that you will simply feel your symptoms again like I had thought, but it can really fuck with your blood pressure and heart rate, which I learned the hard way

[sticksandsharks]

Egret Nurse

design from The Wildercourt (a graphic novel I am working on and hope to have finished in 2025)

[lynnrosepoetry]

Magnesium Body Butter: Alleviating Pain and Multiple Sclerosis Symptoms

[realstrap]

09/29/2024

My gf and I got sick with covid over the weekend

It's been 3 days and we're still battling symptoms, my job gave me a week off but that comes with missing all the hours/money I would have gotten so that means my upcoming check is going to be very small

We are running out of food and necessities for recovery, as it stands we really need help with getting enough $ for:

Groceries

Dog food

Covid tests

Medicine

Dealing with the illness has already been hard enough so any help is greatly appreciated!! We're both immuno compromised so the tests and medicine are super important !!

In total we would need about $500 to cover the cost of everything

Please do not tag this as anything specific so as to ensure the most visibility

Appreciate you all ❤

CA: $lezsalt or $sleepyhen

Vm: wildwotko

Dm 4 PPL

[uncanny-tranny]

I think it would really benefit people to internalize that mental illnesses are often chronic and not acute. Some of us will never be able to jump the hurdle of managing illness, much less sustaining a sense of normalcy. Many of us will never "recover," will never manage symptoms, will never even come close to appearing normal - and this is for any condition, even the ones labeled as "simple" disorders or "easy-to-manage" disorders.

It isn't a failure if you cannot manage your symptoms. It isn't a moral failure, and you aren't an awful person. You are human. There's only so much you can do before recognizing that you cannot lift the world. Give yourself the space to be ill because, functionally, you are.

[farshootergotme]

Hot take, anyone who thinks Dick Grayson has a persistent case of anger issues just doesn't know what anger issues are.

Does he get angry? Yes (I sure would hope so since he's a human being). Would I call it anger issues? No, not really.

[tj-crochets]

Sudden strong urge to write a song that sounds like a love song but is actually describing the symptoms of POTS (and/or is talking about salt? maybe?) despite not having song-writing skills This impulse brought to you by the realization that both things are sometimes described using phrases like heart flutter* and weak in the knees and how many times I say things like "I want to but my heart won't let me" or "my heart is telling me not to go" (meaning "my heart rate is too high") *I thought about this one too many times and now the phrase makes no sense but I think it's a real phrase?

[black-quadrant]

ADHD isn't silly or quirky. it can hinder productivity, create a cycle of overcommitting and overextending to keep up with life, can give rise to feelings of guilt for things like resting and overall impacts relationship health (just to name a few). it's hard to manage and it's miserable.

[nachosforfree]

Post: you NEED to eat more than 2 types of vegetables I DONT CARE IF YOURE AUTISTIC IM AUTISTIC TOO AND CAN DO IT WHICH MEANS YOU DEFINITELY CAN TOO!!! Just find a way to make them taste good Its literally sooo easy!!!!

The notes: yeah! Here's some ways you can do that: *lists 1000 mouth torturing methods*

[kartsie]

Team “Catherine Todd deserves the world and a nuanced limited series that explores poverty and the broken American healthcare system”

[magnetothemagnificent]

Non-ADHD and non-autistic disabled people whose only idea of ADHD and autistic people is shaped by media depictions of a nerdy white boy or a quirky goth girl with low support needs: "Yeah ADHD and autism are destigmatized and we should ignore people with ADHD and autism in favor of real disabilities. I am very smart and progressive."

Lateral prejudice towards other disabled people will get us nowhere.

[theatrekidenergy]

I JUST FOUND OUT I CAN BIKE WITHOUT* PAIN!!!!! I JUST FOUND OUT I CAN BIKE WITHOUT PAIN!!!!!!! I NOW HAVE TWO PHYSICAL ACTIVITIES I CAN DO WITHOUT PAIN!!!!!!! I CAN BIKE WHEN IM NOT FIGURE SKATING!!!!!!! IM GENUINELY SOBBING RIGHT NOW THIS IS SUCH A MASSIVE THING FOR ME YOU DONT UNDERSTAND

* = check tags for explanation

[andhumanslovedstories]

Hey so your post about pain management as a bedside nurse is so important to my own nursing practice that I've considered printing it out so I can have it to hand all the time. So thanks for that. Also, how do you deal with assignments that are busy enough that pain management is harder than it should be? I'm coming up on two years as a nurse and I feel like I take it personally when I am too busy to adequately manage my patients pain. I'm also coming from a newly unionized hospital where the ratios are still horrendous (I do 1:10 on med surg) and I'm hoping once we can enforce our staffing grids it'll be better but idk I'm burning out and I love my job so much and I really respect your nursing philosophy? I guess. Sorry for the word vomit it's been a crazy shift.

I've been trying to think of how to answer this since I got it. It's just such a horrendous ratio. With ten patients a shift, that's like six minutes an hour for each in a fantasy world where there's no charting and everything is exactly where you need it to be. I feel like I don't have great insight into this because the most med surg patients I've had assigned is five. Ten patients to one nurse is just a raw deal for everyone. Like christ no wonder you feel like you're burning out! I'll give you what thoughts I have and hopefully other people can chime in if they have suggestions. But that's such a hard patient load.

When I've been super swamped, I've found that's when being really explicit about your thinking with the patient helps. Like if I have to dash into a room and then dash back out, I'll make sure the board is updated with the next medication time and that the patient knows when the medication is going to kick in. I'll also provide call light parameters. I have a lot of success telling people, "the med should be doing something by 5:30. If I haven't checked in with you by then, and the pain is unchanged or barely changed, hit your call light and we'll try the next step. Also hit your call light if you feel any sudden change, like now you're nauseated or you have a headache or the type of pain changes or something just feels very wrong. Is there anything you need before I step out of the room?"

I like to be explicit about when to call me because I think there's two directions call light usage can go wrong: someone calls all the time, or someone never calls. With someone who calls all the time, I find that telling them when I'll be back and that I want them to call me if I'm not takes away some of that anxiety that can causes some people to call frequently. Often those patients are afraid that if they aren't on the call light, they're gonna get ignored.

For the other type of patient, the one that doesn't call, I want to make explicit that it's GOOD AND NORMAL TO CALL YOUR NURSE WHEN YOU HAVE SYMPTOMS. We've all had that patient at the end of shift who goes, "btw the gnawing pain in my leg is now a 10/10" and you're like "what gnawing pain sir?? you've literally never mentioned it before now?? I don't have any meds for that lemme page super quick????" These patients can get into pain crises easily because they don't ask for help until something is unbearable. In addition to pain crisis bad, it takes a lot more time to deal with something unbearable than it does to deal with something uncomfortable.

On that note, are you spending your very limited time efficiently? To me, that actually means spend more time talking with patients, at least up front. Manage expectations, make sure people know what to expect. Having conversations with patients that are like, "You just had surgery, it's not gonna happen that we get you completely painless. We want to get you to a manageable pain level that allows you to do whatever it is you most want to do this shift." (For me on nights, that's usually sleeping at least a little, but sometimes the realistic goal you make together is that you will feel at some point better than you feel right now.) "You have this medication scheduled, and you have this one available every X hours when your pain is severe. Is there anything you know that helps you deal with pain?"

Also establish if patients want to be woken up for certain prn medications or if they're sleeping, to let them sleep. With some patients, I will advise them to get woken up for pain medication because I know that they're going to need consistent control to avoid a crisis. (Crises take so much time!)

When I'm crunched for time, I'm fond of bringing in an ice pack and being like "if it works, great, if it doesn't, just take it off, either way here it is." Sometimes I'll do the same with a warm blanket. If I know my patient needs to take pills, I'll bring a cup of water with me into the room. If there's a basic prn like melatonin or tylenol that I think they might want, I'll pull them in advance. If the patient doesn't want them, I return them next time I'm in the med room. (Obviously, don't do this with controlled substances. It's super easy to forget to return them, and not returning opioids is one of those whoopsies people get fired over.)

Decision making takes time. Walking to go get stuff takes time. I want to save the time it takes to assess if the patient needs those things and then walk off to fetch them by just having the things already. If your tightest resource is time, be liberal with resources you can spare. If you're stuck with a patient, do you have anyone you can delegate a prn med pass to? Do you know how to do the absolute minimum charting you need to? Do you have flushes and alcohol wipes and whatever other most common things you need? And since you can't hoard time, if you've got some to spare, ask yourself if there is anything you can do now that will save you time later. If you have five free minutes now and an incontinent patient, getting them up to the bathroom now can save you from taking the time for incontinence care and a bed change later on when they've also sundowned and decide they hate everything but most of all you.

So much of this answer I realize is investing as much time upfront as you can, which I realize is so hard when you are so busy. It sucks immensely that prepping takes much less time than not being prepared does when you don't always have time to prep. Plus when you invest that time to pain plan with patients and do small preventative interventions, I think it also provides some psychological comfort that helps with pain. You're letting them know you're invested and you care and you have a plan, even if you don't have all the time you'd like. That can mean better pain control, which can mean needing to spend less time in that room overall, meaning you can save six whole minutes at some point and maybe even, if we're feeling crazy, get a chance to indulge in that greatest of indulgences: just a real leisurely on-shift piss.

[lynnrosepoetry]

Mood Enhancement: Exercise stimulates the release of endorphins, the body's natural mood lifters.

Mood Enhancement: Exercise stimulates the release of endorphins, the body’s natural mood lifters. This can help combat depression and anxiety, which are common in people with chronic conditions like MS. Remember, the intensity and duration of these exercises should be tailored to your individual abilities and comfort level. Start slowly and gradually increase the intensity as you build strength…