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Oh my... Didn't know anything about this- but this is me!! Sometimes ( often) I'm Stuck in flashbacks, Can't get out. So I'm laying in bed and do those things you shared. Wishing God took me home. Im so damaged. And- have turned to people who only have made it worse. Set in stone ✅️

I wonder why it feels like it's full out bleeding in my whole legs, and hip.. really feel like it bleeding. Burning extreme pain.

Moore Maria Allen Mark Taylor Linda

I am 31 and have known something was wrong in my early 20s. Since turning 30 I’ve declined so much! My joint pain is a huge issue like always but now the comorbidities are my main focus. The brain fog and dizziness, I can’t take a shower without thinking about recovering. I can’t go on long hikes anymore. I struggle to get out of bed cause I’m exhausted and the smallest cold will hit the house. My kids will be sick for 2 days and I’ll get pneumonia. We have considered a lot of different autoimmune disordered and HEDS and a combination of both 😢

Before starting school, find a place that you can study for a couple of hours. You'll be surprised how hard it is too read a hardback book and take notes or do math problems laying flat in bed. For me, I can't sit straight up or lean forward for very long. So, I had to trade my desktop for a laptop. And trade my desk for bed tray. Things you used to do might be a struggle now. 💕🌞🌵😷

Hey Cassie, thank you so much for this video. This is only tangentially related, but would you have advice for reducing the amount of energy a shower takes and/or accommodating the energy impact of showers for the rest of the day? Unfortunately, with my hair type, every shower is an “everything” shower, lasting around an hour each time, and by the time I get out and get myself sorted, I am drained for at least the next few hours, which, showering once every other day, makes it so that only half of my week do I have the energy/time alignment to do what I want to do.

I graduated about a year ago, and this video is WONDERFUL. I learned all these things the hard way. My university would send out accommodations letters to the professors automatically. I would meet with my professors at the end of my class to put a name to the email. I was super lucky to have very accommodating professors and small classes. My friend had accessibility issues in a huge class of 500 students. Putting assignments in your calendar is SO important. It makes it so much easier to schedule doctor appointments and get ahead if you need to. Getting into campus health services is also great, but I got referred out to regular non-campus doctors very quickly due to funding issues. So it may be worthwhile to get into a regular primary doctor- ask your campus services how much you can actually get from them. I didn’t have a primary care set up, and when my health blew up, it was a disaster trying to get help.

There's a third component to planning besides using and keeping your system up to date.... And that is reviewing your week. How did it go? One thing to improve. Does this plan still take me where I want to go? Sometimes I find items on my task list that would be nice in a perfect world, but with "my tanks half full" world, it's just not worth doing! These items need to go to the "some day, maybe" list. For example, I got a notion to make flower stickers for each month to decorate my planner. Now, in the perfect world, I'd research the birth flower for each month. Download copyright free images, design sticker pages, print them and stick them to the pages. However, in my world, I downloaded two miscellaneous images and put them on a sticker sheet that had a little extra space and I'm done! Get rid of tasks that don't reap way more rewards than effort. 💕🌞🌵😷

Thank you for making this video!!!! I am going to be sharing it with my coworkers and students going forward because this is SO important!!! I work as a tutor at Georgia Northwestern Technical College. While we don't have a campus medical facility (that would be so awesome), we do have Accessibility Services. In addition, we have Student Success coaches that help act as liaisons to get students the help they need, whether it be accommodations or anything else that may help a student succeed. In addition to these resources, I highly recommend getting in touch with your college's tutoring services. Even if you can't get accommodations, they may be able to help you come up with strategies for handling your course load. You may be able to take advantage of the on-campus tutoring labs as quiet study areas. At GNTC, we also offer a virtual lab where students can meet with tutors online. We tutors can serve as body doubles while you're doing your classwork and can answer/help you find the answer to questions you may have. Lastly, thank you so much for adding that IT IS OKAY TO NOT STRIVE FOR ALL A'S! I have been telling my students this for a while now. Especially when it comes to "general ed/core" classes like math and English, all that matters is passing the class. If you barely scrape by with a D, that's still considered passing. For occupational courses related to your major, the minimum requirement is usually a C. Many teachers would have you believe that anything less than an A is not good enough, but it's simply not true. Bs and Cs are perfectly fine, and even a hard-won D can be respected. The main goal is to understand the concept well enough to be able to do the job. Don't let anyone pressure you into overworking yourself!

I know this is somewhat unrelated 🤔 but can you possibly make a video about giving up on yourself and how to get back up from that? It’s like I’ve lost all confidence in myself and don’t want to do anything but give up on myself. I’m really grateful for the videos of yours I have seen and they are really helpful, so thank you so much for that and trying to help people!! If you have made a video like this, can you point me in the right direction?

I mentioned this as a reply below but thought I'd mention it again. For me, community college was just easier than going to university. It seemed to me the professors were more accommodating. So, I went two years at community college, received my Associates degree (I think it was only one more class). Then transferred to university as a junior. I was the first in my family to go to college, so I had to navigate on my own. Even though my goal was a Bachelor, I wanted an associate's to show for something in case I didn't complete my bachelor's... Now, I have both degrees after my name. I just thought Associates degree would look better on a resumé than two years college courses. I've heard sooo many horror stories of classes not being transferrable, that after the first semester, I contact my university course counseloring center to make sure all my classes were transferable. I think it cost $25 for the application fee, but well worth the peace of mind. It was pretty seamless (I think because both schools are in the same metro area.) 💕🌞🌵😷

Damn this popped up right when I got my Veterans vocational rehabilitation application approved 😅. Also, I'm interested in how to make professors adhere to your disability plan. I had a huge problem with past professors blowing off my disability plan that included testing accommodations.

I too, only need a cane as I get tired. Having it also conquers my fear of: what if I don't make it back? My best advice is to get a walking cane that folds up and can be put in your bag. (Similar to a blind person's cane but heavy duty.) I found having a cane in my hand made me use it and I was becoming more & more dependent on it. (My doctor mentioned it too me.) Because the folding cane is in my bag, I don't pull it out until I need it... Which keeps me stronger than when I was using it all the time. When I go to the zoo or the botanical gardens, I take my walker. It has a basket to hold my purse and my lunch (sometimes I need to eat now, not when I get to the snack bar.) It also has a seat so I can always have a place sit down. Yes, the zoo has benches, but it could be 100 yards away. Yes, I could push myself, having my own seat whist standing in line at the snack bar. But a walker would also help carry your books to and from class. I have a cane that has a fold down seat. It's great for waiting at the post office at Christmas time or waiting for my luggage at the airport or the car rental line. You can sit and move you seat as the line progresses. These are all forms of accommodation that you should also consider. Ask your doctor for a prescription and your insurance will more than likely pay for it. 💕🌞🌵😷

My best advice is the first semester, just take one class to find out how your energy lasts, not just your physical energy but your mental and emotional gas tanks. And don't take the hardest class. Take an easier one... you goal is to access how you physically endure, as well as fulfil your coursework. This gives you the freedom from time crunches and to find the Disabled Student Center, the library, student health sevices, etc. and to figure out the whole routine of how to study again. You don't need a full course load when you're trying to figure out how you fit in this new world of academia. 💕🌞🌵😷

Nope. I really find your face negatively distracting because of the orange. It is not flattering to your face. And having been in counseling for over 50 years, you don't even sound professional. Sorry. Good luck and bless your heart.

Wow - I do something very similar to this. I kind of developed this without thinking about it too much, just wanting to be gentle with myself in the morning. It is nice to know it's not just me, and to hear it reinforced for me that it is a productive way for a spoonie to start the day. Thank you!

Regarding the two alarms, I use Sleep Cycle and it wakes me gradually by waking me when I'm in my lightest sleep within a 30 minute window I choose. So if I need to be awake by 10:30, it will wake me anytime between 10:00 and 10:30, and then it will snooze until 10:30. I've been using this app for over 10 years now with the same music so the sound is certainly pavlovian now too! If I don't have to go anywhere that morning, I do also set the alarm again for half an hour later. I don't usually fall back asleep in that time but I tend to use that time to boot up my brain.

with my tears of being seen, ❤❤❤❤❤❤❤❤

total avoidance to prevent disappointment and sabotage

I took some tests in a psychiatric hospital. They seem to suggest i may have booth ADHD and authism. I tried to pay attention to the video. All i kept thinking was: Cassie I think you're cute

I'm 21, started seeking out a diagnosis at age 6 or 7. I'm still undiagnosed. I suspect that I have hEDS and POTS but doctors have gaslit me for my entire life so I'm not even sure if or when I'll get a diagnosis...

Stay strong!!!! I really wish we lived in the same country, I want to be your friend and hang out!!!!😢

"Faking being well". Thank you for that.

Love this !

Tools and appliances that help make things easier like a nice blender, a good comfy to use chef’s knife, easier to use coffee maker (keurig or French press or milk frother/steamer as extra luxury.) Things to promote comfort like a backrest pillow or one of those pregnancy pillows that bend in many shapes), ice packs or heat packs in fun shapes or scented with non offensive scents (ask them if they like something like lavender). Amazon gift card always good bc then spoonie can buy something or add it to another amount to get a nicer item. Not stuff that requires organizing or a lot of attention to make happen, not advice books like how to do things to not be a sooonie books bc they are pointless and insulting secretly to the spoonie. Books, writing utensils or creative gifts to do personal projects like nice art supplies, nicer padded bottom soft socks, offer to help is a great thing also.

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Hi im there woth you! Friend here if you need one. I can use one. Nobody understands. They think im crazy what i tell them regarding pots. I have always been the stong one out of siblings and friends. But i need help now. Im not as strong as wht other think.

I loved your point about assessing if I'm the ideal viewer for content. It's something I've honed over the years for all types of media, and being able to say "I'm not the target audience for this" and disconnecting is *so freeing* and I want everyone to have that skill. It saves me so much annoyance and shame. This was an interesting video! However, I think a live-react and discussion could be edited a bit more. I found it very difficult to follow along with Ali's video on the fast speed, to the degree that I didn't catch the majority of what he was saying. Watching on a fast speed on your own is fine, but embedding the live view you're watching was an issue for me in accessing the content. Embedding the clip you're critiquing on the original speed would work better, especially if I'm watching your video at a faster speed (which I do sometimes).

I struggle to relate to any of this when the underlying diagnoses are not even being made. How do you "manage life" if it feels like you're Exhausted, in layers of Burnout, but even existing in your body/country feels like unending pain/fatigue?

Aha. When my emotional gas tank is low my physical tank is too. I just noticed that I was making good progress in my mental health with my first therapist after seeing her for a long time. Warming up to people for me takes a long time. So when I felt comfortable and safe with her my physical gas tank was more full.

One thing you didn't make crystal clear was: just because there are 24 hours in a day and yes, appointments and events are tied to the clock, but most of what we do is not. Time scheduling is different from time blocking. Scheduling is tying the event to a certain hour on the clock. Time blocking is figuring out how many hours or fractions of an hour that you have available and then filling that block with a task or self nurture. (I don't like the term time boxing because it sounds too ridged for us. We need to stay more flexible and work outside the box. 😉 So the first step in time blocking for us is: knowing how long (time wise/on average) we can be physical or cognitive. Once we determine how long we can comfortably do a task... that's how big our block can be. Setting up 2 hour blocks isn't reasonable when I know I can only be on my feet for 1 hour on an average day. The other thing (like you said) if it's a bad day and I can only stand for 15 minutes, give myself grace and sit down & enjoy a short break. Then get back at it for another 15 minutes. (For me, cognitive breaks don't allow my muscles to stop spasming. Although, online shopping in my easy chair does work. Go figure?) Because these tasks are not tied to any particular time, if I'm in spasm at 10am, no problem. The task block can wait and be moved until later... Giving myself permission to stay flexible allows my body to relax so I can do my standing job. So on my daily page, I list my morning routine, my appointments/events and my task blocks in pencil... Knowing everything is fluid and can easily moved. (Digital gives me more "permission" to move things around, but I tend to look at a paper planner more often than digital. You do you. I know Cassie used a whiteboard at one time, so sometimes it's gotta be huge and in your face. 💖🌞🌵😷

Here's a topic I bet a lot of people struggle with: is it worth it to get a support animal. Yes, they can fill your emotional tank, which can fill your other tanks, but pets are a drain on the physical. And can be an emotional drain if they get sick or worse. Yes, you don't have to walk a cat but sunlight is good for you. With cats, there's dealing with a litter box and fish need a water change from time to time. But a pet will get you out of bed each day. And will take your mind off of yourself. Distraction is good up until it becomes avoidance. So I bought a plant (an orchid). I check it every morning. Does it need water? Is it growing a new root or a flower spike? Right now it makes me smile (rejuvenates me). But when it's leaf turned yellow and dropped, I was concerned (not so rejuvenating). When the blooms were tired (after 9 weeks of beauty) and dropped, I was sad. But I turned it around to hope of a new spike of blooms. Is it worth it, or should I spending my gas tanks on something more productive? All this in the journey of accepting and adjusting to the new me (slowly recovering from chronic disease). 💖🌞🌵😷

I knew about physical and cognitive gas tanks, but had forgotten about emotional. I was down a couple of days this week and didn't relate it to an event that probably effected me emotionally more than I think. So I need to remember to scan and rejuvenate my emotional gas tank more. 💖🌞🌵😷

Thank you for putting into words what I knew was right but conflicted the way I was raised: do your work then you can rest. 💖🌞🌵😷

I'm going to have to replay this over and over again because I agreed with you the first time through, but changing my thinking to time block events/appointments, first, and myself (meals, breaks, fun and naps) second, is going to take some getting getting used to, in this produce then rest society. 💖🌞🌵😷

Thank you, Cassie and Shae, for responding to Ali's video and breaking down how we "CIND" folks can sift through advice like his. This video has been my favorite of yours so far! And Shae is such a lovely human. I'd love to hear from them in more of your videos. (Spoonie asterisk with that, of course.) Y'all enhanced each other's views and really opened up the topic well. Excellent job!!

I don’t know…. It’s the making a habit by being consistent that gets me. I’ll do yoga for the first time in years and be like wow that feel so good I should keep doing it, and then more years go by until I ever do it again.

I think all productivity videos are great as they would help one person or another. The key is to adjust to what suits you individually because we all feel and go through different life events at different times. E.g. I can spend more spoons now than I did a year ago without burnout because my mental health has improved a lot.

This is a great video! I have watched a lot of productivity videos and it took me a long time to understand I need to adapt the advice to fit my chronic needs. I would get so down on myself thinking, "Why can't I get stuff done, they make it seem so simple". Once that lightbulb went off, I was like, "right, I'm compromised, of course I have to do things differently". Thanks so much for this video!

Hi Cassie, thank you for all that you do. I hope you don't mind some constructive criticism ? What you both said was great, but I couldn't understand what he was saying when you sped it up. Also, I couldn't always catch what the other lady was saying, although what I did hear was great. I don't have any processing or hearing problems so chances are if I couldn't follow it some other people might not be able to either. So more technical feedback rather than criticism of your work. Thanks again for all you do.

Formally I am undisagnosed since my doctors are too wussy to write down their verbal diagnoses of HEDS and thus I am still fighting for treatment.... But when I was a kid I had to stop playing the violin as the vibration straight into my jaw was extremely painful.

The opposite of disabled is not able..... its ENABLED...... If there were ramps and elevators in every single building with accessible washrooms and kitchens and counters etc. People in wheelchairs would be ENabled.... not disabled. If we provided work with truly flexible hours and more emphasis on supporting independent businesses people with seizure disorders would not be fired for being ill. Even with FMLA that is limited- too limited and even then its just a legal job holder youre not getting paid for that time away! Some of us arent even at home all day as some of us live in hospitals!

Molly Burke posted a video where she mentioned her and one other youtuber were the only ones on social media publicly talking about disabilities and then in more recent times now there is more representation and NOW people are upset about the fact that its not just able bodied people being represented any more, despite the fact that in mainstream media at least its able bodied people playing the parts of people with disabilities. Its almost as if now that we aren't "hiding" any more its suddenly unacceptable for us to be represented. When I am told "Oh you are to young to have XYZ" I shoot back with " Oh so because I was only 9 with nearly terminal accident happened I was never at any physical risk! Got it!" because it is always said after I tell them "I think I have arthritis or residual pain from the physical trauma I experiences when I was 9" and its like they only hear the first part, or if I flip the sentence around the other way they only hear the second half and ignore the explanation of "I was under an SUV after it met me at high speed...... " It wasnt until 1974 that the Ugly Laws (yes thats what they were called) that segregated the persons with disabilities were FORMALLY repealed... but as we can see socially nothing has changed. I mean..... new recent city development for crying out loud! We have had several crossing lights replaced in my city and not once have htey made them accessible- no I am expected to enter the petition lottery to request that they be made accessible and even then I only get to request 2 lights.... not even 2 intersections, just 2 lights. Meaning out of the 4 way crossing I only get to choose 1 crossing for both sides....

As you all know how the ER goes... its worse in the states compared to canada or across the pond in some places... I have on several occassions been turned into a pin cushion and even then I have still not had it explained to me why no matter how much water I drink my veins will auto collapse which has left me with severely scarred tendons, unstable wrists, and scared veins. I once even had a nurse insert and then walk off with out changing the you know what to the iv plastic tube!!!! I had to hold my arm straight for 30 minutes calling out for a different nurse or doctor to come finished the job blindly trying to dodge my arm being bumped by passing patients and beds and cleaning crew..... I was terrified and ran a real risk of infection.... and yes my entire arm was a bruise for weeks after each event of that.

Also the other thing I wanted to mention is in my prior comments I talk about not being able to do traditional work..... where a lot of my masking came from is in traditional work you have very ridgid scheduling requirements (for good reasons like you gotta make sure your staff is there at the coffee shop, i get it.) that were inaccessible for my disabilities. I had talked about my horrific sleep schedule.... It is very very hard to perform quality work when you phsycically cannot acheive sleep for 48-72 hours despite sleeping pills and meditation and just lying in bed for endless hours.... Would you want your surgeon to be that tired?

Lets not forget that the magority of doctors who will even be willing to diagnose you on paper (as most support services cannot accept a verbal diagnoses which is already hard enough to get even when you are holding hte test results in your hand that clearly indicate.... -deep breath- _ its usually they walk into the room and say something like " Oh yes, you do have POTS. Bye. heres a pamplet eat salt. : there is very little treatment either available or if available its not provided. What I want to know is where is the overseer for medical practice? Where is the enforcement of medical practices? Sure we can sue for financial damages... but where are the criminal charges? Do no harm does not equal passing me off for the last 15 years do various different doctors and not doing a single session of actual treatment.....

In the States, advertizements for Applying for disability services state that they prioritize those who are terminally ill and those who are blind. I am Blind and a bit deaf (neurological thing going on) .... I have been fighting to get said benefits for a total of over 4 years and before my current marriage I had fallen into an abusive marriage when I realized I physically could not complete the tasks of most traditional jobs. I stayed in that first two years of my fighting to get disability payments simply to wait out the system only to have to appeal endlessly. I have boxes, large boxes of years worth of endless doctors appointments I have had to pay for, medicines I have had to pay for and accept the side affects of all of them just to have a sliver of a chance to fake able bodied on my good days. But you can always tell when I simply do not have the energy required to mask- and I am stobborn as all get out.... so when i am exhausted its like been up and in severe unrelenting full body pain from the seizures and fainting spells for the last 72 hours and my body passes out on the living room floor and I manage 2 hours sleep and cannot get my self to go unconscious again for another 48 hours kind-of-tired. My last, fairly recent attempt to force my self to acheive traditional work I nearly - trigger warning gore - stuck my self through with a knife because I was chopping up apples for samples at a organiz food store and I nearly fainted during a seiaure and fell while holding the knife...... I nearly deleted my self in an attempt to mask and fake able bodied simply because even with a now extremely supportive spouse who attends to all of my whims could not stand not being in the work force...... so I got that job where that happened.... .and even when it was happening I was by my self in the kitchen.... so when a coworker finally came into the kitchen and I was on the floor soI sent them to get my manager who began to panic (btw I had instinctively tossed the knife into the unattended sink so no one got hurt) I began to under play the situation. and yes part of that was from shock and fear... but the other part was even then when I was on the floor I was still masking and playing it off as "oopsy daisy" despite the fact that again I could have ended up deleted.

LOVE that y'all did this reaction video! <3

YES!!! We need more videos like this!!! Thank you so much for doing this. Also, I would LOVE to see "Your ADHD gives me ADHD" on a T-shirt! That would be perfect for me and for my son since we both have it! 🤣🤣 Again, thank you so much for this video, and please do more like it!!!