#chronic fatigue

bottom-of-the-riverbed:

I cannot put into words how much I do not care about people who ‘fake being disabled for benefits’ cause a) it’s wildly blown out of proportion, is a very damaging rhetoric and is a huge waste of time and resources b) I do not trust the government to decide or be able to tell who is and who isn’t 'faking’ and c) if someone is going through that much hassle for such a comparatively small reward then they probably need the money and I’d rather they have it than not.

Oooohhhhhh PPPRRRREEEEEAAAACCCCHHHHHHHHHHHH!!!!

Also, do y'all know how BORING being disabled/chronically ill and not being able to do stuff can be? Every “normal” person quits after a few months because there are only so many movies/TV series to watch, online games to play, books to read, records to sort, cupboards/closets to empty and rearrange, stuff to do around the house, blankets to knit… Believe me. (Insertion: Would I be glad to be able to do all that.)

So you wanna go outside at some point. But guess what: Ppl will ask you what you’re doing outside during daytime when everybody else is working. So you should be able to explain what kind of disability you have. And then ppl will ask you: But… It can’t be that bad, you’re able to take a walk, so why aren’t you working?! Well… Believe me! You’ll only be able to have that conversation a few times before you get super annoyed and try to stay at home (because you’ll meet ppl who know you literally everywhere and every time you’ll have to explain that, yes, you’re still disabled/sick, and no, you’re not better yet, and also no, you’re still not able to work). But at home it’s boring again.

In conclusion: Even if somebody was trying to fake it, they wouldn’t be able to keep the scheme up for very long because basically, non-disabled ppl don’t have the eagerness to do it. It needs a lot of physical and emotional strength to be disabled - it is almost impossible to fake it over a long period of time.

sarahbeara113:

To the people who couldn’t get out of their bed today, I’m here for you…

To the people who skipped showering because they didn’t have the energy, I’m here for you…

To the people who cried in agony through their shower, I’m here for you…

To the people who suffer daily but no one believes them, I’m here for you…

To the people who feel like they’ve lost or are losing their youth to their medical issues, I’m here for you…

To the brave people fighting for their health every day, I’m here for you, I support you, I believe you. Your feelings are valid, you are loved, and I will stand behind you.

mortemia:

I’m seeing people use the term “chronic fatigue” incorrectly all of a sudden lately. Granted, I’ve only seen it on Twitter, but I still want to talk about it here. If you’re using the term improperly, I’d like it if you’d stop and inform yourself on the subject.

Chronic fatigue is not just being very tired, in case you’re not aware. It disables you and comes with cognitive dysfunction (persistent state of confusion, inability to focus, inability to process new information or articulate your thoughts, poor memory, and more).

Chronic fatigue especially ISN’T being tired due to punctual external reasons that’d tire any person without a preexisting condition and it DOESN’T go away with proper rest. Proper rest simply avoids worsening it, and even that can fail, seeing as obtaining proper rest when you have chronic fatigue ranges from very difficult to Not Happening.

Not everyone’s chronic fatigue is equally disabling, some people can lead a “normal” life at a great cost (and risk of permanently making it worse) while others are bedridden, but it’s not a tiredness caused by a factor that if you remove it, will fix it, unless of course you find effective MEDICAL TREATMENT that makes it go away AS LONG AS YOU KEEP TO YOUR MEDICAL TREATMENT, or get a specific SURGERY in case yours comes from tethered (spinal) cord and/or CCI. This surgery consists on fusing some of the vertebrae of your neck permanently, by the way.

Some conditions that cause chronic fatigue; your brain being deprived of enough oxygenated blood (orthostatic intolerance, anemia, hypotension), your immune system attacking your own body (autoimmunity), metabolic issues on a CELLULAR level (ME/CFS), gastrointestinal issues, chronic pain, and a long, long etcetera. Mine comes from a combination of a genetic mutation that makes ALL my organs function poorly, orthostatic intolerance and autoimmunity.

It’s a disabling condition nearly impossible to combat and even more impossible to push through. I’ve been trying to treat mine for 3 years, researching and trying new things non-stop for 3 years, and I’m still housebound and unable to work.

Please, I beg you, don’t trivialize the term “chronic fatigue”. The medical establishment and society at large already don’t take it seriously, believe it can be cured by positive thinking/CBT or exercise, or believe it’s a myth to justify laziness.

Please, don’t turn “chronic fatigue” into the next “gaslighting” or “emotional labor”. The harm that’d cause to the disabled/chronically ill community would be unmeassurable. We deal with enough disbelief and lack of care as is.

Passing this along to help spread awareness, but I also have a question…

I know and understand that part of the difference has to do with the metaphorical cost of doing anything being significantly higher than what would be considered normal with causes that are either literally inexplicable or extremely obscure and is generally diagnosed based on level of severity and frequency, but how does one actually tell the difference?

An example for comparison: a person unknowingly dealing with burnout who literally can’t remember the last time the didn’t feel dead-on-their-feet tired. I realize that a basic maintenance checklist like “when’s the last time you drank water, ate, bathed, slept?” should be covered before jumping to conclusions, but what other things should people check before misappropriating a real and serious medical condition?

As someone with ADHD, I understand how difficult it can be working and living with people who don’t take an invisible condition seriously, and I know how some doctors are just in it for the money without any actual care regarding their patients, but how should one properly explain the difference with chronic fatigue? When explaining certain symptoms I have from ADHD, my usual example for comparison is urination; everybody normally does it, but 60 times a day is probably excessive.

lifewithchronicpain:

greyhavenisback:

lifewithchronicpain:

If a healthy person suddenly felt my pain, nausea, and exhaustion they would call out sick and maybe even go to the hospital. But just like everyone else with chronic illness, the longer it goes on the more life is intolerant of your perpetual health issues and all you can do is deal. If you became disabled tomorrow you either have to deal or die.

How one copes varies, but one thing is for sure, unless it happens to you, (and for real I don’t wish this on anyone) you cannot possible understand what it’s like. Please respect that and stop acting like you’re our doctor when you find out our conditions. We’ve heard it all and done it all.

And please stop telling us to push through. You wouldn’t push through flu, or a dislocated shoulder, or fatigue so heavy you feel like you can’t breathe. Stop telling us we’ll feel better if we just did X or Y. Some of us have been dealing with this for a lifetime. Trust us, we know.

Exactly. Dealing is not acting like the disability isn’t there. It’s resting when you need to, making the choices you need, and planning your future with the disability in mind. If we just keep “pushing through” we will burn out faster than a dry stick.

snailsrightsactivist:

dtsguru:

voidbat:

painandcats:

- Make sure the place where you’re going is accessible!  Your date might opt to use a wheelchair that day, and if they’re using a cane, best to make sure there aren’t a silly number of stairs involved in whatever date you’re considering.

- Call ahead to the place to see if wheelchairs are available to borrow if you’re going somewhere that involves a lot of walking and standing around, like a museum.

- If your date is using a cane, they likely only have one arm to hold things.  Consider bringing their food/drinks to the table along with yours– let them claim a booth while you get the food!

- Be prepared and willing to be someone’s physical support sometimes, especially if your date is having a rough leg day.

- Be prepared for a Plan B Date: it’s so awesome to have a back-up plan for the date if the day comes around and your person is spoonless.  Believe me, it’ll mean a lot.

i just really want to add some from my own experience:

• ask yourself, really ask yourself if you’re fine with plans being cancelled at the last second, cancelled mid-event, and for plans to often be “come over to my house and lump on the couch with me” - if you aren’t? don’t date somebody with chronic pain/fatigue. especially if you will take that sort of thing personally and/or hold it against the person. if you date me, you date my disabilities. i have to deal with them, so do you.
  
• if you are grocery shopping with someone who uses a mobility aid like a cane or rollator, and that person is pushing the cart? DO. NOT. MOVE. THE CART. while they are using the cart, it is taking the place of their normal mobility aid and moving it is like moving their leg. DON’T DO IT. i have fallen in grocery stores more times than i want to think about due to an ex who couldn’t get it through his head that THIS IS MY CANE RIGHT NOW and would just grab the basket and drag it somewhere.
• if your date says “no, it’s fine, i’ve got it” when you try to do something? let them. just let them. my disabilities takes so much away from me, the things i can actually do are things i am proud of. it makes me feel better to be able to do things for myself. i detest nothing more than an able-bodied person INSISTING on doing something that i can do myself, even though i’ve said multiple times that i’d prefer to do it myself. it says volumes on what that person really thinks of my abilities as a functional human, none of them positive. i get that you’re trying to help, but i promise, taking away what autonomy we do have? not helpful.
• learn to tell your date beforehand what the date will entail. learn to look for the things your date would need to know. i had an ex that never factored in things like “walking half a mile” or “it’s a three story walkup with no elevator” because those things were no problem for him. i, on the other hand, would arrive at the destination crying from pain and unable to enjoy a damn thing - and exhausted in advance by knowing i’d have to repeat the journey just to get back home. don’t be afraid to ask your date what things they need to have taken into consideration. ask what accessibility options are necessary for them when it comes to cane/wheelchair access, how much access there is to regular seating, how much walking will happen, how many stairs there are. if you go to a movie and the only parking is way in the back, ask if they’d rather you drop them up front while you get a spot - because sometimes traversing a large parking lot is the difference between watching a movie and sleeping through it, or being too distracted by pain to follow it. by and large, we know our limitations and it means the world to have someone say “hey i want to take you to this exhibit, i think you’d really enjoy it! there’s several stairs to the entrance and the wheelchair ramp is kind of obnoxiously far away, so it’s either a bunch of walking or deal with stairs to get in there, but once you’re inside there’s a lot of comfortable benches and not a whole lot of walking.” because they thought about how you navigate the environment. 
• if your date is using a rollator or wheelchair, make sure your car (or whatever form of transportation you are going to be using) has space to put it. don’t ask me out to the renaissance faire and then show up in a CRX and look confused when i say my rollator can’t go in that so i’ve gotta stay home.
• BE. PATIENT. this shit is unpleasant enough for us already, the last thing any of us need in our lives is another able-bodied asshole making us feel like burdens. we can’t do everything as quickly or as easily or sometimes at all. sometimes we need your help. sometimes we have to cancel plans. even big plans. even big expensive plans. it’s no fun for us either. sometimes we have to back out of shit halfway through because our bodies have absolutely hit the wall and have failed us. i’ve had to abandon a cart full of groceries before and sleep in my car before i could even manage to drive home because my body just gave the fuck out with no warning. can you imagine? just for a second? imagine being young enough to still get carded for booze and your body literally collapses and you have to almost crawl to your car, sitting in the middle of the floor several times on the way. don’t get frustrated with us, we’re doing our best. it’s just harder than you can imagine.

Also remember just because the cane isn’t there doesn’t mean the disability isn’t there. All of these points are still relevant. Be aware. Be considerate.

I want everyone to see this

I know it’s not the worst aspect of being disabled, but I loathe the sheer amount of rubbish I generate from all my medication boxes and blister packs, and a lot of it isn’t recyclable

I’m so tired I’m so tired I’m so tired I’m so tired

It’s ok to be disabled and still want kids. It’s ok to not want kids because you are disabled. It’s ok if you just don’t want kids.  

Maybe you’re newly diagnosed with Fibro, or ME, or EDS, or some other chronic condition that’s knocked you off your feet. You might be staring down the barrel of what life might look like for you now and wondering if you have to give up on your dreams of having a family. You might be wondering how on earth you will be able to keep up with your kids. Look, I’m going to let you in on a little secret. Nobody can keep up with their kids. Not even the ableds can keep up with these little balls of dynamite. My kid is not even walking yet and she gets into everything. She tears around the house on her hands and knees and pulls herself up on stuff and chases the cat and everything a curious little child is supposed to be doing.

This is what baby proofing is for! She’s safe. She can explore all she wants. We have baby gates, the furniture is anchored. We don’t leave out stuff that would be unsafe for her and we make sure the floor is clean to reduce the amount of lint she shoves in her mouth. We have a open floor plan and I can keep an eye on her at times, even if it’s a bad pain day and I’m mostly parked on the couch. We read books and cuddle and talk and sorts of other wonderful things.

If you are thinking “I can’t take care of a kid, I can barely take care of myself,” I would say that’s a valid point, but not one that you can’t address. You will build coping skills and learn your way around your body’s needs and figure out work-arounds for all the things you need to do to lead a healthy, balanced life (whatever that means for you). It will take creativity. It’s a process, and one you should be undertaking anyway, whether you are planning for a family or not. And you don’t have to figure it ALL out before baby arrives. Life will always be a work in progress. 

My kid is still little. I know there will be new challenges. But think back. If you had a good parent, what was it that made them a good a parent? I promise you it wasn’t “My mom climbed mountains and ran around with me at the park.” It was “My mom held me when I cried. She supported me. She believed me when I needed her to. She was patient and fair and encouraging. She sat (sat!) in the front row at all my dance recitals.” And if you had a painful childhood, these were probably the things that were missing.

Also keep in mind, you will probably have help. We all want to believe that we will start a family with a supportive partner that sticks around, and I definitely recommend it if that’s possible. But other types of families exist. Maybe it’s you, sometimes your ex-partner, and a supportive grandparent. Maybe it’s you and a close friend your kid takes to calling “auntie.” Support makes a big difference and it’s ok to say yes to the help that’s out there.

Another thing I wish someone had told me before having kids: they don’t just take energy from you, they give you energy back. Loving my daughter is the most energizing thing in the world. I am filled with joy every time she looks at me. I would do anything for her. If your baby needs you, you will dust off the old stash of spoons you didn’t even know you had.

Dear Chronically Ill, 

You won’t get better, but you will get better AT being sick. You will raise your baseline slowly with healthy habits. You will get ahead of what you need, you will learn your body, and you will laser focus your priorities until you can manage. 

Hang in there,
Your Future Self

Low spoon day? Still have to be a functional parent? Here’s some ways to entertain your little one when you feel like shit and have to save your energy for diaper changes. My kid is only 9 months old so these are mostly aimed her age and younger but lots of them can be adapted to older kids as well.

1. Sing. When I was recovering from childbirth and couldn’t do much physically I bonded with baby by singing. She’s older now and still loves it when I sing to her. She even dances. Sometimes I do little hand motions for the “itsy-bitsy spider” or “I’m a little teapot” folk songs from my couch perch.

2. Peek-a-boo. This is good for child development via object permanence. Hide under a blanket and then pop out.

3. Talk and snuggle.

4. Read books together. The more new words a baby hears, the better for their budding language skills. Books introduce not just stories, but bonding time, pictures, and object interaction. I use board books because my child is very grabby and destructive.

5. Watch cartoons and cuddle. When you hear you should keep kids away from screen time, the most important reason for that is that it is non-interactive. I believe there is nothing wrong with screen time (in moderation) if it is interactive. Tell the kid what they are seeing, explain the show. Ask them what they like about the characters, even if they can’t answer you yet.

6. Lay on the floor and let the kid interact with you. You don’t have to move around a whole lot to stack blocks or play with plushies or roll a ball around.

7. Bath time. Sometimes I need to soak my sore muscles, so kill two birds with one stone and wash the kid at the same time. Make this into a fun activity with bath toys and playful splashing. (This is best for kids old enough to sit up independently; I bathed her in her infant bath by herself before she was old enough for joint bath time).

8. Just show the kid all the things you are doing and narrate yourself. Babies are fascinated by you.

Because anything that saves you time and energy is worth its weight in gold.

1. Lots of meals can be roasted together in the same pan in the oven at the same temp, for the same amount of time. For example: salmon, green beans, and asparagus can all go in at 400 degrees for 12 minutes. (They can even be seasoned the same way with garlic, butter, and lemon juice.) You can scoot a food’s ideal cooking temperature 25 degrees up or down to make this happen. Make sure you double check that meats are fully cooked if you are experimenting with cook times/temperatures. If the cook times are different, but the temp is the same, just slide in a second pan partway through cooking.

2. Most of the time you are either in your bed, in your shoes, or in your chair. Invest in quality for these three objects.

3. Lean in to who you are. Adapt your career to your lifestyle, not the other way around.

4. If you are intimidated by that stack of paperwork you have to go through, remember that 90% of it can go in trash. Every time. That stack isn’t as tall as it looks.

5. If you get rid of that thing, you don’t have to clean it or organize it ever again.

6. No matter the weather, you can open a window for 5 minutes. Let fresh air into your living space in all seasons. This is good for both health and mood,

7. Your bank, your insurance company, and your ISP are probably all fucking you over. Always be on the lookout for better options/plans.

8. Adding a houseplant to your space can lift your mood, improve air quality, and help fight seasonal depression.

9. If it works, it’s not stupid. Your self-soothing quirks and your personal work arounds are valid.

10. Simplify the things that aren’t important to you to make more room in your life for the things that are. Take stock of this concept often.

Don’t beat yourself up if you’re chronically ill and can’t exercise as frequently as you’d like to. 

Exercise is often recommended as a treatment for chronic fatigue and pain, but those symptoms make it difficult to exercise. A lot of people with chronic pain and fatigue, myself included, experience an increase in symptoms during and after physical activity. It can be hard to find the time for exercise if you know you’ll need a few hours to recover afterwards, and it’s difficult to motivate yourself to do something you know will leave you in even more pain. 

Doctors and mostly healthy people often don’t understand these challenges, but don’t let anyone make you feel guilty about how much you do or don’t exercise. Try your best and don’t stress. 

crippleprophet:

you’ve been hit by

you’ve been struck by

overwhelming malaise

[ Gif of Dean from Supernatural gesturing with one hand and saying, “I am so very, very, very… very, very tired.” ]

I’m a chill person

I just wish my body could get that memo

[ Gif of a puppy standing by a treadmill. He has one paw on the track, moving it lazily as he looks up at the cameraman. ]