Here's my smoothie recipe for POTS and Gastroparesis (goal is calorie density, fiber, protein, and high sodium). And a high powered blender is needed. 1/3 Cup quick oats 1 Tbsp dark cocoa powder Handful of dark chocolate chips 1/3 Cup cottage cheese 1 1/3 Cup whole milk BLITZ INTO OBLIVION
@@andreahultman8272, I believe the oats is the fiber component. You could do anything that you can tolerate for fiber. I take fresh, frozen kale and wizz it in the blender to get it really fine. 💖🌞🌵😷
I absolutely cannot leave the house before noon and even then it is a challenge. I never make an appointment before 2 p.m. if I can help it. It sure would be nice if Normies could understand that some of us are not morning people because we aren't ABLE to be morning people! The other thing that has become impossible for me is traveling. I am 75 and I suffer from widespread osteoarthritis. I am tired of explaining why I can no longer hop on a plane, rent a car, stay in a motel, sleep in a crappy bed, and travel! Just waking up is a monumental task, can you imagine catching a morning airplane flight!!!
thank you for this video! i feel so awful and guilty every morning for staying in bed so long, for going back to bed, for basically doing everything you did here. even though i do most of this already, it is so helpful to hear it from another person. i so rarely feel normal, but this video made me feel normal. :)
I only recently started to realize that I have some sort of chronic pain (currently in the process of getting diagnosed), and the stuff you said about taking an hour to get up makes me feel so validated. My family is always saying how I need to get up in the morning right away, but I never could. All this time I thought I was just a horrible lazy person, when in reality I just need more time to wake up.
I love this soooo much. My mentor years ago gave me a similar advice. He said never rush out of bed when you wake up. Just go to the bathroom then go back to bed until you are ready to get out of bed. He believed that if you rush out of bed your whole day will be a mad rush and he was the coolest down to earth guy that I ever met. For years I would take my time getting out of bed until recently. I am legally blind and my husband of 26 years just had a double bypass surgery. So I was stressed about his surgery and stressed that I had to take care of everything for a week on my own while he was in the hospital. I am happy to say that my husband is doing great, all the bills are paid and I didn't burn down the house. I proved to myself that I can take care of myself and my husband. But I stopped doing my morning routine. Even though my husband is ok I felt the need to get up out of bed to make sure he was ok and breathing. Now that everything has settled down I am exhausted. Your video was extremely helpful. It was just what I needed to hear. Thank you so much for making this video.... I'm going back to bed.
I'm glad someone else mentioned the bathroom, because there's no way I could lie on bed after waking up and not attempt to rush to the bathroom. I hope your husband is in great health, now, @Barbara 🙏🏽
this is going to sound really backhanded, but when i clicked on this video i was bracing myself to be annoyed and click off (expecting the kind of video where they’re like ohhh meditate and you’ll be magically cured) but i’m only like halfway through and this video is genuinely so helpful. saving it to my chronic illness playlist and sending to my mum! thank you!
As someone who is very new to the life of a chronic illness it has been soul crushing to not only lack understanding about why I cant get up but to actively fight against it. I have always wanted the get up make breakfast and workout lifestyle but what used to be simple tasks now take me 100× longer and ussually yield less results. Videos like this are something im hoping will work because I want to do good productive things but I need to learn to be okay with doing what I CAN do instead of what I want to do.
I know this is an older video but it makes me feel so supported and inspired - I like your focus on slowly easing into your mornings instead of rushing. I'm having a flare up at the moment and I usually struggle to keep up with new information during those, but you speak so clearly, slowly and concisely, I really appreciate it. I "only" have fibromyalgia, but I've really been struggling lately since I work full time.
I know I'm a bit late to this video, but I just watched it and feel so incredibly seen and validated. So thank you for that. It feels like everyone thinks that the way to be productive as a spoonie is to wake up and jump out of bed and do yoga and go for a walk. Hearing you say "and then I go back to bed" made me breathe such a sigh of relief! Finally someone who gets it! I really have to thank you because maybe tomorrow instead of feeling guilt and self hatred about laying in bed on social media after I wake up, just maybe I'll be able to think more positively about it.
OMG where have you been all my life. I have fibromyalgia/ cfs and im so fed up of being told to get up at a certain time, meditate 4 times a day and do something fun. I dont know how many times ive told them I DONT HAVE ANY ENERGY!!! Yes im screaming lol. Ive only be diagnosed a year. I can do things small steps at a time. You are the first person to say its ok to take time to do things. Thank you so much ❤❤
My husband is such a morning person and always asks “ do you want to go for breakfast?” You think he would know by now how long it takes me to get going in the morning. This video confirms I’m part of the norm in the chronic illness community. I have Lupus. I also had a cardiac Ablation in 2015. Anxiety, panic attack history . So thanks for this video 💜💜💜
THANKYOU! I have hEDS and this made me feel so much better about the fact I find it so difficult to get out of bed I always feel so lazy and guilty, fatigue is one of my worsen symptoms and honest to god I’ve tried everything . The whole “put your alarm across the room” thing is always recommended but people don’t understand I panic, stand up, nearly pass out then immediately fall asleep again.
I have POTS too and I usually take 45-60 minutes to get up after I wake up. I always did that naturally and I always felt bad for 'wasting time' on social media when I could be doing something productive. This makes me feel so validated. (I usually use tumblr because there is no algorithm and there is lots of fandom fun.)
Girlfriend…. I feel like God put you in front of me today. Thank you for creating this channel. It is so comforting to know that I am not the only human on earth going through this.
Thank you for this! I disagree about scrolling TikTok or personal social media though as I find they can be triggering and addictive. I have Fibromyalgia, Hypermobility (possibly EDS), CFS, along with ADHD and C-PTSD. That cocktail of issues with ADHD is hell and very challenging to "function" as an adult. I am a creative and I have an art Instagram account, I only follow other artists I like so my Instagram feed is only pieces of art and that inspires me and gets my creative juices flowing. This has helped me greatly and doesn't encourage the endless scroll, because it makes me want to create or jot down/sketch ideas, if my spoons are ready.
The validation I feel from hearing your diagnoses is insane. Hi fellow EDS friend! I have all of these diagnoses I’m pretty sure, and sure hope you are alright!
I know what you mean, but I think she implies to do what works works for you and she does say follow what inspires you. So sticking to only Instagram and viewing your favorite artist's accounts is a great idea. I don't really use much social media, I have an Instagram but I only look at it occasionally and only use it for the random hobbies and creators I enjoy. For a wakeup routine though I would probably go to TH-cam and watch some inspiring or self help type videos that help give me a more positive outlook, tips on how to feel better & improve daily living. I can think of a few channels that would be a great idea for a positive start to the day. And it prevents endless scrolling as well. Anyway at least this video gives validation to the difficulties of getting up and going in the morning. My partner wakes up on his first & only alarm at 6am and pops right out of bed. Total opposite of me. It's always good to try different ways of adjusting your usual routine to see if something works better.
I can't stand soc med and I'd much rather play mindless mobile games or a colour-on app to get my synapses firing. Or if it's been a particularly grim night of pain, I just start up a new True Crime video to distract me.
Thanks for your videos! I have narcolepsy, chronic fatigue , chronic low blood pressure ( might be pots) and possibly fibromyalgia. Then depression, panic attacks and anxiety. It’s nice to see others with illnesses and realistic routines
I have possible narcolepsy, but could be hypersomnia. How was yours diagnosed? I had the blood test for the genetic marker, which I have, but some of the symptoms, like sleeping for over 12 hours and then needing lengthy naps in the rest of the day my sleep doc said weren't quite the typical picture of narcolepsy. I've had loads of overnight sleep tests, and my sleep doc said if I had the results I had on an overnight and daytime sleep test when I was 17 today he'd diagnosis me with narcolepsy, but I can barely sleep on any of the latest sleep tests. I was going to get a spinal tap, but chickened out.
New subscriber here. Great video. As a pwd my entire morning routine is just getting up! Lol. The whole ableistic centered mantra around a morning routine defining your success or productivity as a person really bugs the crap out of me. Thank you for being a counter to that perspective!
I couldn't agree more with how damaging ableist and healthist culture is. Countering to that rhetoric is really important to me. Thank you for subscribing, Jody! 🥰 Let me know if there's ever a specific topic you want me to cover.
I don't think I've ever felt so seen! My sister has POTS and hEDS, it's taken me about ten years to finally be told if I had been seen 5 years ago I would probably have been diagnosed with hEDS but instead I am diagnosed with JHS. The brain fog, barely able to move my body, walk etc in the mornings is so real and I hadn't ever considered this could actually be the reason! Thank you so much.
I have fatigue that I've been trying to figure out for YEARS that's still unexplained. Mornings are my kryptonite. I haven't tried any of this yet, but it's already gone a long way in changing my feelings about mornings. It makes sense now why I get back in bed and why I can't get out of bed until I've been awake for a while. I'm trying this starting tomorrow, absolutely guilt and self-judgement free! Seriously, thanks for this.
It’s so crazy how the same we all are. I have to sit in bed for at least 90 minutes when I wake up, if I rush to get out of bed, then I am anxiety ridden, and disregulated the rest of the day.
Here's my follow-up video walking through how to build a personalized routine if you haven't seen it already. Hugs! th-cam.com/video/XGUb6-mq2fI/w-d-xo.html
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!
Thanks for this video. Got CFS and pretty bad depression and currently can't go to school. It makes me feel really guilty that i stay in bed basically all day and dont get anything done, and how I'm actively ruining my future right now. So... yeah, thanks, it helped to hear that things i feel so guilty about are fine.
Thank you for this video, Cassie! As a fellow EDS spoonie, I've been so frustrated with myself for not waking up before 7 am. I struggle to get up at noon and I struggle to fall asleep because my symptoms get worse at night... if I don't sleep then the next day is a bust because the pain takes over and I have to lay down for the entire day and my mind is not functional. I've been unemployed for more than 2 years and I worry that I'll never be able to find a job that can accommodate my situation because so far, no matter how much I explain my experience, the people around me pretty much tell me it's a lack of discipline. It's so hard to exist like this feeling like a blob that can't offer anything to society. I'm always exhausted even though I "look" able-bodied. In my case, playing a meditation or an audiobook in the background helps distract me while I lay in bed. I prefer communicating with people via WhatsApp using the voice memo over meeting via video but this caused the end of a friendship because it was extremely draining for me to sit in front of the computer having to repeat the same thing. After all, the other person was distracted but didn't want to communicate via WhatsApp. I'm just so afraid that I'll never get a job to stabilize my financial situation because my situation seems like I can't adapt to other people's preferences.
Thank you for sharing and sending big hugs! Unfortunately your story is all too common, know that you're NOT alone.💖If you feel up for it, we can talk more about your situation on Zoom sometime (you don't have to have your camera on, and you can use your phone to join the call). You can grab a spot on my calendar here: app.acuityscheduling.com/schedule.php?owner=16161520&appointmentType=28873885
I feel so much validation watching this video !! 😭 I like to wake myself up by positive things on my phone, then I like to slowly sit up, meditate (sometimes) and then I journal. Same with bedtime, asmr helps me unwind, rain sounds etc or journaling if I’m too tired I skip that. Then I finally get up and start the morning routine and hygiene breakfast etc
I’ve just discovered your channel & I’ve subscribed. I first got ill back September 2016. I’m currently in the process of re-evaluating the use of my time & energy due to anxiety & depression. I love your presentation style. Your voice is very relaxing & your suggestions like a healing balm. Thanks for taking the time & energy for putting this channel together. I’ll be squirrelling my way through your videos in the coming days & weeks 🐿️
I’m very late to this video, but the happiness and validation I gained from this is amazing. I’ve never felt more accepted. With all these diagnoses at a somewhat young age- to hear another person going through what I am is just amazing. It’s not amazing you have to go through that, and I sure hope your doing alright- but I’m so excited to hear this routine
I appreciate your encouragement to go back to bed. As an MS mom with young kids, I have to do the morning school hustle, so not sure if that will work...but I’ll give it a try!
Thank you so much for sharing this tips. Waking up early feels like agony some days. I often find myself getting back to bed when staying awake starts to bother me.
hahaha this was awesome - my fave was when ppl tell you to meditate, exercise, make a breakfast, and shower you can ignore them confidently! thanks for this affirming video. eating breakfast makes me tired. very relatable.
Came here a new spoonie without any one else in my life that is also a sooonie because I felt guilty about my morning routine and this made me feel so much better about my morning routine because it’s this!
This is amazing, thank you!! I have been curating all my social media over the years and find I need to find a few minutes to scroll and wake up my mind and body every morning. I'm happy to hear its not just me being lazy, I really need that time to wake up.
I'm having yet one of those horrible mornings - it is noon and I got out of bed just 20 minutes ago. I managed to do 2 chorus, to get rid of that 'guilty' feeling, it didn't help. I've had a bad night of sleep, was up 2-4-6-8-9-10 am but it was not lack of sleep, it is this feeling that my body hasn't recharged or refreshed itself. I feel hungover or jet lagged. And I hate it sooo much. Monday I want to help stray cat people, but they start at 9 am. 9 am !!!!! I want to help them out so much, but I already know how I'll feel in the morning. The whole world starts so early .... my chronic morning hell is one of the reasons why I could never ever think of having children. Most work, doctor appointments, school, courses, stuff in life seems to start before my body can and it feels so very horrible and lonely. 😢
I think the point about deserving rest is sooo important. Especially for ppl who started trying to make their life easier and/or get over internalized ableism, because feeling like you're wasting your day is the worst fucking thing in the world. As someone who only now started to try and get over my workaholic mindset, reminding myself that i do deserve rest no matter how much i've done is exhausting but important. I was diagnosed with RA earlier this year and have been dealing with a fuck ton of other issues (mental illness cocktail, permanent damage from over exercising, working towards a hEDS dx), and hearing this from another person really helps.
Your content is an absolute godsend I did not think I would find anything relatable for early morning content as a aspie, postie with EDS. Thank you ❤❤❤
Thank you. I've been suspecting that I need more time in my bed in the morning, but I used to think it's unhealthy for me because of my surroundings. Now, I'm trying new methods to live my best life with chronic illnesses
Thank you very much. I've been doing all these things but with shame over it because my family has never understood why it is so difficult for me to function. This video validated me so much I am nearly crying. Thank you thank you thank you.
This is a fantastic video! I've been doing this for years (fibromyalgia and autism) but have always felt guilty for it and that I should be able to get up more quickly, journal, etc. etc. What a brilliant revelation!! Thank you so much! Also the point about sometimes having to sleep until 1pm (at least, haha) and it messing up all your plans really hit home!
Do you think fybromyalgia is part of autistic burnout also have you tryed ADHD meds ime also going to try mouth guard tmj fybromyalgia ADHD connection are you hypermobile
I started using an app called Finch last year, and I use it most in the mornings. It's like a little mental health/self care/journey app. Each day, the Finch goes on a journey after it is charged up with energy. To get the energy, you complete tasks in real life (you pick all your own tasks!). My usual morning tasks are breathing exercises for one minute, write an affirmation of gratitude, take my meds, tick my calendar. I start with whatever feels most manageable, most them I allow myself to swap out for any other task that feels more achievable that day, like I have a task to look at pictures that make me happy, learn a new fact, remember I can kick butt which is super relevant if I have woken up on a rough day (other than meds, those have to happen). It makes me feel really good about myself to do that! Plus, it is not unlimited, it has plenty of potential end points. With social media, I get hooked in and I can stay in bed for hours scrolling until it's costing all my spoons cause I'm lying funny, I am hungry/thirsty/need to pee. The fun comorbid things which mean I can hyperfocus and ignore my pain, until the pain is too high and I won't be able to focus on anything for a week 😱
I'm so glad I'm not the only person who has to take a really long time to wake up. I haven't used an alarm clock regularly for years, only on the very rare occasions that I have something that couldn't be scheduled for later in the day. I do, however, have to wake up and get up before I'm ready most days because my four-year-old twins take after my husband and wake up very happy and loud in the morning and going about 200 miles per hour as soon as they open their eyes. I really look forward to the days we send them to my parents for the night, once or twice a week, because the next morning are the mornings I get to sleep in and move at my own pace.
Thank you for this. I'm very early days in realising my fatigue is ME/CFS and getting a diagnosis. I'm gradually learning management techniques but am struggling with mornings. I've had a morning routine for years that l really enjoy, meditation, yoga and journalling, but I can rarely do the yoga now and meditation after getting up is hard work! I thrive on routine so have been lost! Your video has really helped and now pm going to construct a much slower and more gentle morning routine going forward. Thank you!
Thank you for this, I really needed it. I've been horrible at wasting spoons then getting cranky and crashing. I also have POTS, HEDS, Gastroperesis, and MCAS...among others. It is very hard to adjust, and you are giving fantastic advice that I will be implementing.
Can you imagine the people who are able to hop out of bed go WORK OUT come back shower eat and go to work? 🤣 more power to them! I love a good relaxing morning and night routine and during the day I get the “important” more vigorous things done. If your body asks for rest let it have it. I always try to plan in advance so I don’t end up having an uncomfortable crash on the couch I try to make myself go to my bed even tho I swear I’m not sleepy or I have so many things to do
New subscriber. Due to a medical error I went from being happy, healthy, productive and social to the exact opposite (literally in one day.) I had HA double pneumonia and HA septic shock (hospital released me with sepsis after a 'simple' procedure involving a kidney stone.) When I drove myself back to the ER a few days later with a temp of 104 and bordering on delirium, I ended up on a ventilator for 5 days. The ICU doctors told my family I was going to die. Obviously I did not, but each day is a nightmare from the damage they did to my body. I now have CHF, CFS/fibromyalgia, and about 15 other diagnoses. To make matters worse, about 1.5 years ago I was exposed to COVID and got a sinus infection that went to both ears then back to my sinuses and then some terrible skin manisfestation took hold. All I do is go to doctors (but I am done with them now other than the ones I have to see for required medications.) They do not listen because they do not care and are just taking my money, yet I feel worse than ever. There is so much wrong with the medical care in the USA (from my experiences anyway) that I could write a book and people would think it was fiction. Mornings are THE ABSOLUTE worst and I wish I never had to go to sleep. I have no support even though i always took care of everyone else. I am pretty much completely isolated and COVID made things worse. People do not like sick people, IMO...even if the sick person is not contagious in any way. If anything, others are more of a danger to me (as proven by the family member who unknowingly exposed me to COVID. ) I realize I am just rambling at this point, but I needed to vent a bit. Thank you for your kindness. It is a rare thing indeed.
Interesting view on social media. I've felt bad for having to scroll on social media or playing a game on my phone to wake up in the morning. So many people are so militant against social media but I think it has its pros and cons :)
Love my fellow spoonies! I have PTSD, several mental illneses, chronic fatigue, sciatica, IBS, fibromyalgia, migraines, pelvic dysfunction and a bunch of other stuff not mentioned.
Thank you for this video again! I had to rewatch it as a reminder. As a education student I try to keep a non spoonie morning routine. I have had the 1 pm sleep days for days. And I’ve felt so guilty.
OMG! I have been watching your videos for a while, but only now I realise that your conditions are pretty much identical to mine! And also, the link between hypermobility and neurodivergence is so fascinating.
meditating in bed is asking me to fall back asleep that’s always my excuse when I want extra sleep. I use my phone to help me wake up, I use a motivational youtube video or a positive devotional from my bible app. Thank you so much for sharing, these videos bring me so much comfort when I’m feeling bad
I do have a curated feed--and strangely i never heard of this prior to your video. Instagram is my happy place, and I chill there to either have happy thoughts prior to sleeping, or wake up to happy things.
Doomscrolling has been a struggle for me. It’s hard when there is so much garbage happening. But I’ve definitely noticed that my nervous system is constantly amped up when I do that.
As someone whos now become a constant doom scroller (and my nervous system is paying for it lol) ive found doing different stuff on my phone that isnt social media helps too. Like, i’ll still end up doom scrolling, but now i get to read or i get to play games
Social Media is such a tough subject because I agree: sometimes its the *only* way I interact with the world, and I feel like my social media is pretty curated at this point. But because of that, the doom scroll problem is real. It makes it even harder when you only have 1 or 2 spoons for the whole day.
I found this after I told my boyfriend to bring my phone so i can find a productivity video to help me get out of bed. My goal way 10am, but my back is hurting so much, so it's been 45 minutes and I'm m finally feeling a little better
I like listening to music once I woke up. Currently living in a homeless shelter means that I have to get up in time for breakfast or I miss out but at least I know now why I do better if I don't get out of bed until 10am. I avoid social media completely. I have a few blogs and youtube videos. I try to get out at least once a day since that helps my mental health.
Subbed. I love how calmly and kindly you address your audience. You’re voice is ideal for this type of video. Now, I just have to find out what a ‘spoony’ is. Thank you.
Thank you for the compliment and sub! 😍 A spoonie is someone with less energy and usable hours in the day than an able bodied person. If you Google "spoon theory" you'll find a lot more information about the concept. 😊
Thank you so much for this! It's good to know how I can optimise my mornings. And that I am already doing some of the correct things. I had already curated my socials but didn't know it had a term! Mine was based around body positivity as I am mid size pinup model. Well-used to be lol. Feeling positive after this xx
1:04 we take longer to get out of bed What to do instead 2:07 2:33 curate your media feed to everything that uplift you. And remoge everything that make you feel inferior.
Brilliant advice thank you. My social media and spotify playlists were VERY carefully curated a decade ago but have gotten muddied up. I think I'll set up another instagram account just for the morning wake up period. Thanks!
Thanks for this tip! I def hate the mornings and usually stumble through the house trying to get my kid to school and get coffee and get in my recliner.
Love this video! 💛 The go back to bed advice is amazing, I'm so happy to hear that others do that as well. It's definitely a must for me when spoons are low.
I've actually been trying to wake up early this gave me an idea to maybe read a comic on my phone instead of shutting off alarm and going back to sleep.. something to look forward to
i'm at a stage in my fatigue where- it takes SO long for me to transition (and i'm new to paying attention to this) that I often misinterpret it as being totally out of commission for the day. then my bladder will force me to get out of bed, then on the way back to my bed i get sidetracked in the living room or kitchen, i end up spending an hour or two in there, finally manage to bring some food to my room, and by the time i sit down, i realize i'm awake and alert, when all i wanted to do was just go back to bed.
Can I recommend audio books while chilling out and waking up? Something easy and even something you've read before or something you love and have read 15 times.
I love audio books, but I'm a bit of a *story gobbler* . Audiobooks in the morning would never work for me. If I start a novel, I do NOTHING ELSE until I finish the story. Therefore, I pair audiobooks with limited tasks such as cooking and housework. That way I can stop myself. Same for starting audiobooks at night or a novel at night. I just wont sleep unless I am through. 😅
I think what you're saying is true and valid. But what I want to get my point is that your talk about sleeping was honest and helped me realize that for a disabled, schizo-effective person like me, chronic fatigue resulted in simply thinking too much. In other words, thank you by the way, helped me see that all that thinking when I wake up is obviously not real, and is the main cause of my mental and physical exhaustion. So truly, I saw the truth through you, even though it wasn't the same scenario, your honest description of what our chronic fatigue, is for me mental, and for all of us is just simply over worrying about things that are not there. We need to cut the thinking and just find sensible, reasonable worries that are true to a sensible reality and not be hard on ourselves because we weren't made to work like powerful dell or hp computers. Give yourself a real sensible life to not do what's not humanly possible. Stay real to yourself, a make yourself happy, because that's how God intended life to be, free of suffering, and let your own identity make your mind not like what others do because where not made the same, your personality and freedom to choose is what is going to free you from mental scrutiny. Free yourself from nonsense thinking. Love yourself. You truly almost cured all of my schizophrenia, really. I saw the truth that worrying about what's not really there really, saved my life. I will not be kept in this diseases contraption to make worry about what's humanly possible. I am now not a dead zombie anymore; I can now see without rukesh. I can see now that making an unreal life was making me stuck and ill. I'm not yet clear of everything but I know that Gods simplicity and love is a lot more grand than what others were giving me. Well, the truth is the truth will free you. This was a good healthy talk, and I appreciated this talk, and I am thankful. I really feel better, and I would like to thank everyone who commented today and especially you Cassie for being honest about this issue because you said it very well that I could understand it completely. Thank you once again and may God continue to protect and bless you all. Bye for now.
Just found u and so glad I did. 💖 love the dont get up fast been doing this is for a while lessens the guilt knowing im not alone! I get the kids to school then curl up in bed with breakfast. And yes cf/me days im back in bed sleeping till1 or 2pm before my alarm goes off to get up wake up n get kids. Those days sigh grrr. But by body doesn't go with my schedule.
Getting back into bed is such a great tip, WE DESERVE IT ! In my case I feel really triggered by social media, especially Instagram and avoid it all together.
I really love this. Mornings are really hard for me but I feel guilty or pressured to get up and get going. I need to give into resting, I’m getting a new laptop and I think that will help me to rest while accomplishing some things. I also need to set up more really cozy places to sit. My bed is amazing but couch not so much and it’s too hot for me to hammock.
I have fibromyalgia, back arthritis, sciatica, sleep apnea, orthostatic hypotension, & bipolar disorder, plus I've started to suspect I might be neurodivergent. I have a lot of trouble getting up, starting my day, following routines, & doing any work or chores. I procrastinate a lot & I'm always in a lot of pain & exhausted. I can't sleep on a regular bed without severe pain. I can't even sit comfortably in most furniture like chairs and couches for more than a few minutes at a time. What really helps me is having my own place to sit that's specifically suited for my issues & comfortable for me. I live, work (freelance writer), & sleep in a big comfy electric recliner. It's huge, has a super soft & puffy back, headrest, & arms, but it's still firm enough to support my spine. It adjusts via 4 buttons (recline, decline, & increase/decrease the headrest incline) on the side that take very little effort to push. I can recline just enough to lift my feet with my back straight or recline all the way to laying almost completely flat. Then I can also adjust the angle of the headrest. It's a huge help having at least one place I'm comfortable that I can get in & out of with little effort. It allows me to lay down to sleep, sit up while relaxed & comfortable to work, & adjust the angle to reduce the pressure on my back. For me, this presents issues because spending all day in what is, more or less, my bed, makes it hard for my brain to understand when it's time to work & I fall asleep much more than I likely would if I had 2 separate spaces for work and sleep. However, something like this could be the perfect solution for you. When you're ready to get out of bed, a comfy recliner can give you somewhere to sit that feels good & doesn't make getting started feel like more of chore. I got mine at Raymore & Flanagan. Hope this helps. 💜
In the past 5 years I’ve had big problem trying to get out bed in a.m. I never used to be that way. I set my alarm way ahead of my work start time to give me more time waking out
Thank you for this. Ive just subscribed. At last, someone who understands exactly how i feel. I dont go on social media such as FB, Instagram orTwitter. I prefer to just post on here or my ME/CFS websites. Ive felt guilty for years about not jumping up in the mornings. You've made me realise ive got to stop feeling so guilty. I also feel guilty about not completing sewing and knitting projects. Im always over ambitious in what i expect of myself. I really need to stop thinking this way! I think your channel will help.
Want to cry , feeling overwhelmed , finally everything is making sense , i am glad i finally got diagnosed , pre diagnosis it was even more difficult to understand why i was always so tired atleast now I know, the amount of gaslighting by others and myself i have put myself through..... uff . My doctor told me off for feeling anxious even though i didnt say anything just bcz my hands were shaky he gave me a whole lecture on anxiety is useless as if i am doing it on purpose, then proceeded to tell me to stay active when i told her that i was constantly fatigued . Like seriously ! I am tired of dealing with people who dont understand but still cant keep their mouths shut, i dont have the energy to explain it to people in my life , but i am glad atleast it will be easier to be kinder to myself . i have been horribly obnoxious towards myself , always hating myself for my limitations but now things make much more sense
Thank you so much for this video ❤️ Ive just been told about spoonies having no idea what it’s all about. I found your page and this is the first video I watched. I’m now getting back in to bed (without feeling guilty now) and going to rest and listen to your videos from the beginning ❤️
Here's my smoothie recipe for POTS and Gastroparesis (goal is calorie density, fiber, protein, and high sodium). And a high powered blender is needed.
1/3 Cup quick oats
1 Tbsp dark cocoa powder
Handful of dark chocolate chips
1/3 Cup cottage cheese
1 1/3 Cup whole milk
BLITZ INTO OBLIVION
Caffeine is bad for mental illness
Man, I wish I could do oats, but they zoom my blood sugars into high orbit. (Dang you, T1D and MCAS. You are a dastardly duo.)
@@andreahultman8272, I believe the oats is the fiber component. You could do anything that you can tolerate for fiber. I take fresh, frozen kale and wizz it in the blender to get it really fine. 💖🌞🌵😷
i literally have cried because of feeling useless for being tired all the time. thank you so much. seriously. you are amazing
I absolutely cannot leave the house before noon and even then it is a challenge. I never make an appointment before 2 p.m. if I can help it. It sure would be nice if Normies could understand that some of us are not morning people because we aren't ABLE to be morning people! The other thing that has become impossible for me is traveling. I am 75 and I suffer from widespread osteoarthritis. I am tired of explaining why I can no longer hop on a plane, rent a car, stay in a motel, sleep in a crappy bed, and travel! Just waking up is a monumental task, can you imagine catching a morning airplane flight!!!
thank you for this video! i feel so awful and guilty every morning for staying in bed so long, for going back to bed, for basically doing everything you did here. even though i do most of this already, it is so helpful to hear it from another person. i so rarely feel normal, but this video made me feel normal. :)
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Same here!
Same!
Am the same
I’m the same…😢
I only recently started to realize that I have some sort of chronic pain (currently in the process of getting diagnosed), and the stuff you said about taking an hour to get up makes me feel so validated. My family is always saying how I need to get up in the morning right away, but I never could. All this time I thought I was just a horrible lazy person, when in reality I just need more time to wake up.
exactly what i have been going through
Same
I love this soooo much. My mentor years ago gave me a similar advice. He said never rush out of bed when you wake up. Just go to the bathroom then go back to bed until you are ready to get out of bed. He believed that if you rush out of bed your whole day will be a mad rush and he was the coolest down to earth guy that I ever met. For years I would take my time getting out of bed until recently. I am legally blind and my husband of 26 years just had a double bypass surgery. So I was stressed about his surgery and stressed that I had to take care of everything for a week on my own while he was in the hospital. I am happy to say that my husband is doing great, all the bills are paid and I didn't burn down the house. I proved to myself that I can take care of myself and my husband. But I stopped doing my morning routine. Even though my husband is ok I felt the need to get up out of bed to make sure he was ok and breathing. Now that everything has settled down I am exhausted. Your video was extremely helpful. It was just what I needed to hear. Thank you so much for making this video.... I'm going back to bed.
I'm glad someone else mentioned the bathroom, because there's no way I could lie on bed after waking up and not attempt to rush to the bathroom.
I hope your husband is in great health, now, @Barbara 🙏🏽
this is going to sound really backhanded, but when i clicked on this video i was bracing myself to be annoyed and click off (expecting the kind of video where they’re like ohhh meditate and you’ll be magically cured) but i’m only like halfway through and this video is genuinely so helpful. saving it to my chronic illness playlist and sending to my mum! thank you!
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As someone who is very new to the life of a chronic illness it has been soul crushing to not only lack understanding about why I cant get up but to actively fight against it. I have always wanted the get up make breakfast and workout lifestyle but what used to be simple tasks now take me 100× longer and ussually yield less results. Videos like this are something im hoping will work because I want to do good productive things but I need to learn to be okay with doing what I CAN do instead of what I want to do.
I know this is an older video but it makes me feel so supported and inspired - I like your focus on slowly easing into your mornings instead of rushing. I'm having a flare up at the moment and I usually struggle to keep up with new information during those, but you speak so clearly, slowly and concisely, I really appreciate it. I "only" have fibromyalgia, but I've really been struggling lately since I work full time.
I know I'm a bit late to this video, but I just watched it and feel so incredibly seen and validated. So thank you for that.
It feels like everyone thinks that the way to be productive as a spoonie is to wake up and jump out of bed and do yoga and go for a walk. Hearing you say "and then I go back to bed" made me breathe such a sigh of relief! Finally someone who gets it! I really have to thank you because maybe tomorrow instead of feeling guilt and self hatred about laying in bed on social media after I wake up, just maybe I'll be able to think more positively about it.
Hugs! ❤️❤️❤️
OMG where have you been all my life. I have fibromyalgia/ cfs and im so fed up of being told to get up at a certain time, meditate 4 times a day and do something fun. I dont know how many times ive told them I DONT HAVE ANY ENERGY!!! Yes im screaming lol. Ive only be diagnosed a year. I can do things small steps at a time. You are the first person to say its ok to take time to do things. Thank you so much ❤❤
My husband is such a morning person and always asks “ do you want to go for breakfast?” You think he would know by now how long it takes me to get going in the morning. This video confirms I’m part of the norm in the chronic illness community. I have Lupus. I also had a cardiac Ablation in 2015. Anxiety, panic attack history . So thanks for this video 💜💜💜
🤗 You're definitely not alone! I've had to grieve the loss of going out for breakfast unless it's a super special occasion that I plan and prep for.
@@CassieWinter thank you!!! You’re so sweet!! Yes or unless it’s a good morning or a late breakfast on a not so good morning. 💜🌸💜🌸💜
THANKYOU! I have hEDS and this made me feel so much better about the fact I find it so difficult to get out of bed I always feel so lazy and guilty, fatigue is one of my worsen symptoms and honest to god I’ve tried everything . The whole “put your alarm across the room” thing is always recommended but people don’t understand I panic, stand up, nearly pass out then immediately fall asleep again.
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Sometimes you do need to just sleep in until 1pm. And it's almost always a school/work day where you can't do that.
I have POTS too and I usually take 45-60 minutes to get up after I wake up. I always did that naturally and I always felt bad for 'wasting time' on social media when I could be doing something productive. This makes me feel so validated. (I usually use tumblr because there is no algorithm and there is lots of fandom fun.)
Girlfriend…. I feel like God put you in front of me today. Thank you for creating this channel. It is so comforting to know that I am not the only human on earth going through this.
Thank you for this!
I disagree about scrolling TikTok or personal social media though as I find they can be triggering and addictive.
I have Fibromyalgia, Hypermobility (possibly EDS), CFS, along with ADHD and C-PTSD. That cocktail of issues with ADHD is hell and very challenging to "function" as an adult.
I am a creative and I have an art Instagram account, I only follow other artists I like so my Instagram feed is only pieces of art and that inspires me and gets my creative juices flowing. This has helped me greatly and doesn't encourage the endless scroll, because it makes me want to create or jot down/sketch ideas, if my spoons are ready.
The validation I feel from hearing your diagnoses is insane. Hi fellow EDS friend! I have all of these diagnoses I’m pretty sure, and sure hope you are alright!
I’m with you, screen time is terrible first thing in the morning. Terrible most of the time! Lol
I know what you mean, but I think she implies to do what works works for you and she does say follow what inspires you. So sticking to only Instagram and viewing your favorite artist's accounts is a great idea.
I don't really use much social media, I have an Instagram but I only look at it occasionally and only use it for the random hobbies and creators I enjoy. For a wakeup routine though I would probably go to TH-cam and watch some inspiring or self help type videos that help give me a more positive outlook, tips on how to feel better & improve daily living. I can think of a few channels that would be a great idea for a positive start to the day. And it prevents endless scrolling as well.
Anyway at least this video gives validation to the difficulties of getting up and going in the morning. My partner wakes up on his first & only alarm at 6am and pops right out of bed. Total opposite of me. It's always good to try different ways of adjusting your usual routine to see if something works better.
I can't stand soc med and I'd much rather play mindless mobile games or a colour-on app to get my synapses firing.
Or if it's been a particularly grim night of pain, I just start up a new True Crime video to distract me.
Thanks for your videos! I have narcolepsy, chronic fatigue , chronic low blood pressure ( might be pots) and possibly fibromyalgia. Then depression, panic attacks and anxiety. It’s nice to see others with illnesses and realistic routines
I have possible narcolepsy, but could be hypersomnia. How was yours diagnosed? I had the blood test for the genetic marker, which I have, but some of the symptoms, like sleeping for over 12 hours and then needing lengthy naps in the rest of the day my sleep doc said weren't quite the typical picture of narcolepsy. I've had loads of overnight sleep tests, and my sleep doc said if I had the results I had on an overnight and daytime sleep test when I was 17 today he'd diagnosis me with narcolepsy, but I can barely sleep on any of the latest sleep tests. I was going to get a spinal tap, but chickened out.
New subscriber here. Great video. As a pwd my entire morning routine is just getting up! Lol. The whole ableistic centered mantra around a morning routine defining your success or productivity as a person really bugs the crap out of me. Thank you for being a counter to that perspective!
I couldn't agree more with how damaging ableist and healthist culture is. Countering to that rhetoric is really important to me. Thank you for subscribing, Jody! 🥰 Let me know if there's ever a specific topic you want me to cover.
I don't think I've ever felt so seen! My sister has POTS and hEDS, it's taken me about ten years to finally be told if I had been seen 5 years ago I would probably have been diagnosed with hEDS but instead I am diagnosed with JHS. The brain fog, barely able to move my body, walk etc in the mornings is so real and I hadn't ever considered this could actually be the reason! Thank you so much.
Do you think it's the burnout causing more pain I have heds Asperger's add CFS 26 or is it burnout fybromyalgia 6
I have fatigue that I've been trying to figure out for YEARS that's still unexplained. Mornings are my kryptonite. I haven't tried any of this yet, but it's already gone a long way in changing my feelings about mornings. It makes sense now why I get back in bed and why I can't get out of bed until I've been awake for a while. I'm trying this starting tomorrow, absolutely guilt and self-judgement free! Seriously, thanks for this.
You're welcome! Let me know how it goes. 🤗
It’s so crazy how the same we all are. I have to sit in bed for at least 90 minutes when I wake up, if I rush to get out of bed, then I am anxiety ridden, and disregulated the rest of the day.
I needed this today
Here's my follow-up video walking through how to build a personalized routine if you haven't seen it already. Hugs! th-cam.com/video/XGUb6-mq2fI/w-d-xo.html
Same here 😫
I found this 2yr after it published and I find it is still relevant and i really appreciate it.
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!
Thanks for this video. Got CFS and pretty bad depression and currently can't go to school. It makes me feel really guilty that i stay in bed basically all day and dont get anything done, and how I'm actively ruining my future right now. So... yeah, thanks, it helped to hear that things i feel so guilty about are fine.
Thank you for this video, Cassie! As a fellow EDS spoonie, I've been so frustrated with myself for not waking up before 7 am. I struggle to get up at noon and I struggle to fall asleep because my symptoms get worse at night... if I don't sleep then the next day is a bust because the pain takes over and I have to lay down for the entire day and my mind is not functional. I've been unemployed for more than 2 years and I worry that I'll never be able to find a job that can accommodate my situation because so far, no matter how much I explain my experience, the people around me pretty much tell me it's a lack of discipline. It's so hard to exist like this feeling like a blob that can't offer anything to society. I'm always exhausted even though I "look" able-bodied. In my case, playing a meditation or an audiobook in the background helps distract me while I lay in bed. I prefer communicating with people via WhatsApp using the voice memo over meeting via video but this caused the end of a friendship because it was extremely draining for me to sit in front of the computer having to repeat the same thing. After all, the other person was distracted but didn't want to communicate via WhatsApp. I'm just so afraid that I'll never get a job to stabilize my financial situation because my situation seems like I can't adapt to other people's preferences.
Thank you for sharing and sending big hugs! Unfortunately your story is all too common, know that you're NOT alone.💖If you feel up for it, we can talk more about your situation on Zoom sometime (you don't have to have your camera on, and you can use your phone to join the call). You can grab a spot on my calendar here: app.acuityscheduling.com/schedule.php?owner=16161520&appointmentType=28873885
@@CassieWinter Thank you for holding space!
I am so happy that I stumbled across your video. I've got fibromyalgia and rheumatoid arthritis - been 10 years since my diagnosis.
You can ignore them confidently! This statement is the best🥰
I feel so much validation watching this video !! 😭 I like to wake myself up by positive things on my phone, then I like to slowly sit up, meditate (sometimes) and then I journal. Same with bedtime, asmr helps me unwind, rain sounds etc or journaling if I’m too tired I skip that. Then I finally get up and start the morning routine and hygiene breakfast etc
I’ve just discovered your channel & I’ve subscribed. I first got ill back September 2016.
I’m currently in the process of re-evaluating the use of my time & energy due to anxiety & depression.
I love your presentation style. Your voice is very relaxing & your suggestions like a healing balm.
Thanks for taking the time & energy for putting this channel together. I’ll be squirrelling my way through your videos in the coming days & weeks 🐿️
I’m very late to this video, but the happiness and validation I gained from this is amazing. I’ve never felt more accepted. With all these diagnoses at a somewhat young age- to hear another person going through what I am is just amazing. It’s not amazing you have to go through that, and I sure hope your doing alright- but I’m so excited to hear this routine
I appreciate your encouragement to go back to bed. As an MS mom with young kids, I have to do the morning school hustle, so not sure if that will work...but I’ll give it a try!
I’m in the same boat. MS mom with 2 boys at school and 2 boys 2 and under that stay home with me.
I LOVE Pintrest it naturally curated itself the algorithm is insanely good. It's magic for my adhd brain
Thank you so much for sharing this tips. Waking up early feels like agony some days. I often find myself getting back to bed when staying awake starts to bother me.
hahaha this was awesome - my fave was when ppl tell you to meditate, exercise, make a breakfast, and shower you can ignore them confidently! thanks for this affirming video. eating breakfast makes me tired. very relatable.
Came here a new spoonie without any one else in my life that is also a sooonie because I felt guilty about my morning routine and this made me feel so much better about my morning routine because it’s this!
❤🤗
This is amazing, thank you!! I have been curating all my social media over the years and find I need to find a few minutes to scroll and wake up my mind and body every morning. I'm happy to hear its not just me being lazy, I really need that time to wake up.
You're definitely not lazy. And you deserve all the time you need to wake up in the morning. 🤗💖
I'm having yet one of those horrible mornings - it is noon and I got out of bed just 20 minutes ago. I managed to do 2 chorus, to get rid of that 'guilty' feeling, it didn't help. I've had a bad night of sleep, was up 2-4-6-8-9-10 am but it was not lack of sleep, it is this feeling that my body hasn't recharged or refreshed itself. I feel hungover or jet lagged. And I hate it sooo much. Monday I want to help stray cat people, but they start at 9 am. 9 am !!!!! I want to help them out so much, but I already know how I'll feel in the morning. The whole world starts so early .... my chronic morning hell is one of the reasons why I could never ever think of having children. Most work, doctor appointments, school, courses, stuff in life seems to start before my body can and it feels so very horrible and lonely. 😢
I think the point about deserving rest is sooo important. Especially for ppl who started trying to make their life easier and/or get over internalized ableism, because feeling like you're wasting your day is the worst fucking thing in the world. As someone who only now started to try and get over my workaholic mindset, reminding myself that i do deserve rest no matter how much i've done is exhausting but important. I was diagnosed with RA earlier this year and have been dealing with a fuck ton of other issues (mental illness cocktail, permanent damage from over exercising, working towards a hEDS dx), and hearing this from another person really helps.
Your content is an absolute godsend I did not think I would find anything relatable for early morning content as a aspie, postie with EDS. Thank you ❤❤❤
I scroll and sip coffee for at least an hour! Cuddling with kitties helps too.
I am in fact cuddling with a kitty right now. 'Tis the best!
Thank you. I've been suspecting that I need more time in my bed in the morning, but I used to think it's unhealthy for me because of my surroundings. Now, I'm trying new methods to live my best life with chronic illnesses
This video was so helpful to me. I have me/cfs and pots. Would love a video about night time routines too!
Thank you for watching Meranda! And I'm so glad you found it helpful. 😊 And thanks for the idea! I'll add it to my list. 💡
Thank you very much. I've been doing all these things but with shame over it because my family has never understood why it is so difficult for me to function. This video validated me so much I am nearly crying. Thank you thank you thank you.
Big hugs 💖
This is a fantastic video! I've been doing this for years (fibromyalgia and autism) but have always felt guilty for it and that I should be able to get up more quickly, journal, etc. etc. What a brilliant revelation!! Thank you so much! Also the point about sometimes having to sleep until 1pm (at least, haha) and it messing up all your plans really hit home!
Do you think fybromyalgia is part of autistic burnout also have you tryed ADHD meds ime also going to try mouth guard tmj fybromyalgia ADHD connection are you hypermobile
I started using an app called Finch last year, and I use it most in the mornings. It's like a little mental health/self care/journey app. Each day, the Finch goes on a journey after it is charged up with energy. To get the energy, you complete tasks in real life (you pick all your own tasks!). My usual morning tasks are breathing exercises for one minute, write an affirmation of gratitude, take my meds, tick my calendar. I start with whatever feels most manageable, most them I allow myself to swap out for any other task that feels more achievable that day, like I have a task to look at pictures that make me happy, learn a new fact, remember I can kick butt which is super relevant if I have woken up on a rough day (other than meds, those have to happen).
It makes me feel really good about myself to do that! Plus, it is not unlimited, it has plenty of potential end points. With social media, I get hooked in and I can stay in bed for hours scrolling until it's costing all my spoons cause I'm lying funny, I am hungry/thirsty/need to pee. The fun comorbid things which mean I can hyperfocus and ignore my pain, until the pain is too high and I won't be able to focus on anything for a week 😱
I love this, living YOUR best life not THEIRS
Thank you for making this video
I feel normal now and less guilty for going back to bed in the morning 😅
I'm so glad I'm not the only person who has to take a really long time to wake up. I haven't used an alarm clock regularly for years, only on the very rare occasions that I have something that couldn't be scheduled for later in the day. I do, however, have to wake up and get up before I'm ready most days because my four-year-old twins take after my husband and wake up very happy and loud in the morning and going about 200 miles per hour as soon as they open their eyes. I really look forward to the days we send them to my parents for the night, once or twice a week, because the next morning are the mornings I get to sleep in and move at my own pace.
Thank you for this. I'm very early days in realising my fatigue is ME/CFS and getting a diagnosis. I'm gradually learning management techniques but am struggling with mornings. I've had a morning routine for years that l really enjoy, meditation, yoga and journalling, but I can rarely do the yoga now and meditation after getting up is hard work! I thrive on routine so have been lost! Your video has really helped and now pm going to construct a much slower and more gentle morning routine going forward. Thank you!
This is my morning routine, I'm glad I'm not alone in this!
this was so healing thank you
so much love thank you for making us feel seen ❤
Thank you for this, I really needed it. I've been horrible at wasting spoons then getting cranky and crashing. I also have POTS, HEDS, Gastroperesis, and MCAS...among others. It is very hard to adjust, and you are giving fantastic advice that I will be implementing.
Thank you, explains everything, feel validated and very helpful. Good to know it's not just me.
It's definitely not just you. 💖
@@CassieWinter 🤗
Can you imagine the people who are able to hop out of bed go WORK OUT come back shower eat and go to work? 🤣 more power to them! I love a good relaxing morning and night routine and during the day I get the “important” more vigorous things done. If your body asks for rest let it have it. I always try to plan in advance so I don’t end up having an uncomfortable crash on the couch I try to make myself go to my bed even tho I swear I’m not sleepy or I have so many things to do
The morning time is definitely the most painful part of the day for me. I really appreciate you sharing your tips. Much love and light 🙏
Just found you after searching for yet more tips of CFS during an exhausting day. Thanks so much for this!
So glad you found me, too! Thanks for watching. 😊
New subscriber.
Due to a medical error I went from being happy, healthy, productive and social to the exact opposite (literally in one day.) I had HA double pneumonia and HA septic shock (hospital released me with sepsis after a 'simple' procedure involving a kidney stone.) When I drove myself back to the ER a few days later with a temp of 104 and bordering on delirium, I ended up on a ventilator for 5 days. The ICU doctors told my family I was going to die. Obviously I did not, but each day is a nightmare from the damage they did to my body. I now have CHF, CFS/fibromyalgia, and about 15 other diagnoses.
To make matters worse, about 1.5 years ago I was exposed to COVID and got a sinus infection that went to both ears then back to my sinuses and then some terrible skin manisfestation took hold. All I do is go to doctors (but I am done with them now other than the ones I have to see for required medications.) They do not listen because they do not care and are just taking my money, yet I feel worse than ever. There is so much wrong with the medical care in the USA (from my experiences anyway) that I could write a book and people would think it was fiction.
Mornings are THE ABSOLUTE worst and I wish I never had to go to sleep.
I have no support even though i always took care of everyone else. I am pretty much completely isolated and COVID made things worse. People do not like sick people, IMO...even if the sick person is not contagious in any way. If anything, others are more of a danger to me (as proven by the family member who unknowingly exposed me to COVID. )
I realize I am just rambling at this point, but I needed to vent a bit.
Thank you for your kindness. It is a rare thing indeed.
This video explains why I take so long to feel alert and get out of bed. Thank you so much.
Interesting view on social media. I've felt bad for having to scroll on social media or playing a game on my phone to wake up in the morning. So many people are so militant against social media but I think it has its pros and cons :)
Love my fellow spoonies! I have PTSD, several mental illneses, chronic fatigue, sciatica, IBS, fibromyalgia, migraines, pelvic dysfunction and a bunch of other stuff not mentioned.
Are you hypermobile I have heds Asperger's add CFS fybromyalgia OCD do you think alot of the pain is burnout
back because I just needed an online friend to tell me it’s okay to take longer in the morning ♥️ thank you for your content
Big hugs 💖
Thank you for this video again! I had to rewatch it as a reminder. As a education student I try to keep a non spoonie morning routine. I have had the 1 pm sleep days for days. And I’ve felt so guilty.
OMG! I have been watching your videos for a while, but only now I realise that your conditions are pretty much identical to mine!
And also, the link between hypermobility and neurodivergence is so fascinating.
meditating in bed is asking me to fall back asleep that’s always my excuse when I want extra sleep. I use my phone to help me wake up, I use a motivational youtube video or a positive devotional from my bible app. Thank you so much for sharing, these videos bring me so much comfort when I’m feeling bad
This is such a nice video. Thanks.
I do have a curated feed--and strangely i never heard of this prior to your video. Instagram is my happy place, and I chill there to either have happy thoughts prior to sleeping, or wake up to happy things.
Doomscrolling has been a struggle for me. It’s hard when there is so much garbage happening. But I’ve definitely noticed that my nervous system is constantly amped up when I do that.
As someone whos now become a constant doom scroller (and my nervous system is paying for it lol) ive found doing different stuff on my phone that isnt social media helps too. Like, i’ll still end up doom scrolling, but now i get to read or i get to play games
Thank you so much. I feel normal after listening to this as I thought I was lazy and lacked discipline.
I know I tend to deal with shame comparing myself to healthy people. But yeah I definitely take my time to get up.
Social Media is such a tough subject because I agree: sometimes its the *only* way I interact with the world, and I feel like my social media is pretty curated at this point. But because of that, the doom scroll problem is real. It makes it even harder when you only have 1 or 2 spoons for the whole day.
Oof I feel this
I found this after I told my boyfriend to bring my phone so i can find a productivity video to help me get out of bed. My goal way 10am, but my back is hurting so much, so it's been 45 minutes and I'm m finally feeling a little better
I like listening to music once I woke up. Currently living in a homeless shelter means that I have to get up in time for breakfast or I miss out but at least I know now why I do better if I don't get out of bed until 10am. I avoid social media completely. I have a few blogs and youtube videos. I try to get out at least once a day since that helps my mental health.
Subbed. I love how calmly and kindly you address your audience. You’re voice is ideal for this type of video. Now, I just have to find out what a ‘spoony’ is. Thank you.
Thank you for the compliment and sub! 😍 A spoonie is someone with less energy and usable hours in the day than an able bodied person. If you Google "spoon theory" you'll find a lot more information about the concept. 😊
Thank you so much for this! It's good to know how I can optimise my mornings. And that I am already doing some of the correct things. I had already curated my socials but didn't know it had a term! Mine was based around body positivity as I am mid size pinup model. Well-used to be lol. Feeling positive after this xx
1:04 we take longer to get out of bed
What to do instead 2:07
2:33 curate your media feed to everything that uplift you. And remoge everything that make you feel inferior.
Thank god that you said "don't as a spoonie to meditate" 😂 someone gets me
Brilliant advice thank you. My social media and spotify playlists were VERY carefully curated a decade ago but have gotten muddied up. I think I'll set up another instagram account just for the morning wake up period. Thanks!
❤😊love this channel,yes I laughed when you said : and then you go back to bed , that's what I do ❣️😴 thanks for the video
I love this... trying to be more gentle woth my morning and delay the internal impending deadlines
Thanks for this tip! I def hate the mornings and usually stumble through the house trying to get my kid to school and get coffee and get in my recliner.
Love this video! 💛 The go back to bed advice is amazing, I'm so happy to hear that others do that as well. It's definitely a must for me when spoons are low.
Im so thankful for my IC support groups on Facebook.
I've actually been trying to wake up early this gave me an idea to maybe read a comic on my phone instead of shutting off alarm and going back to sleep.. something to look forward to
i'm at a stage in my fatigue where- it takes SO long for me to transition (and i'm new to paying attention to this) that I often misinterpret it as being totally out of commission for the day. then my bladder will force me to get out of bed, then on the way back to my bed i get sidetracked in the living room or kitchen, i end up spending an hour or two in there, finally manage to bring some food to my room, and by the time i sit down, i realize i'm awake and alert, when all i wanted to do was just go back to bed.
Thank you for your video.❤❤❤
Can I recommend audio books while chilling out and waking up? Something easy and even something you've read before or something you love and have read 15 times.
Of course! That's a wonderful addition to a morning routine. I often listen to Podcasts while I'm doing my morning chores. 😊
I love audio books, but I'm a bit of a *story gobbler* . Audiobooks in the morning would never work for me. If I start a novel, I do NOTHING ELSE until I finish the story. Therefore, I pair audiobooks with limited tasks such as cooking and housework. That way I can stop myself. Same for starting audiobooks at night or a novel at night. I just wont sleep unless I am through. 😅
I think what you're saying is true and valid. But what I want to get my point is that your talk about sleeping was honest and helped me realize that for a disabled, schizo-effective person like me, chronic fatigue resulted in simply thinking too much. In other words, thank you by the way, helped me see that all that thinking when I wake up is obviously not real, and is the main cause of my mental and physical exhaustion. So truly, I saw the truth through you, even though it wasn't the same scenario, your honest description of what our chronic fatigue, is for me mental, and for all of us is just simply over worrying about things that are not there. We need to cut the thinking and just find sensible, reasonable worries that are true to a sensible reality and not be hard on ourselves because we weren't made to work like powerful dell or hp computers. Give yourself a real sensible life to not do what's not humanly possible. Stay real to yourself, a make yourself happy, because that's how God intended life to be, free of suffering, and let your own identity make your mind not like what others do because where not made the same, your personality and freedom to choose is what is going to free you from mental scrutiny. Free yourself from nonsense thinking. Love yourself. You truly almost cured all of my schizophrenia, really. I saw the truth that worrying about what's not really there really, saved my life. I will not be kept in this diseases contraption to make worry about what's humanly possible. I am now not a dead zombie anymore; I can now see without rukesh. I can see now that making an unreal life was making me stuck and ill. I'm not yet clear of everything but I know that Gods simplicity and love is a lot more grand than what others were giving me. Well, the truth is the truth will free you. This was a good healthy talk, and I appreciated this talk, and I am thankful. I really feel better, and I would like to thank everyone who commented today and especially you Cassie for being honest about this issue because you said it very well that I could understand it completely. Thank you once again and may God continue to protect and bless you all. Bye for now.
Just found u and so glad I did. 💖 love the dont get up fast been doing this is for a while lessens the guilt knowing im not alone! I get the kids to school then curl up in bed with breakfast. And yes cf/me days im back in bed sleeping till1 or 2pm before my alarm goes off to get up wake up n get kids. Those days sigh grrr. But by body doesn't go with my schedule.
Getting back into bed is such a great tip, WE DESERVE IT !
In my case I feel really triggered by social media, especially Instagram and avoid it all together.
It’s so hard living with this as a single mum of 2, one is autistic. I realised this morning I’ve only had one 24 hour break in 8.5 years 😢
This is a lot like my morning routine. I replace the one housework task with piano practice.
I use curated youtube playlists.
I really love this. Mornings are really hard for me but I feel guilty or pressured to get up and get going. I need to give into resting, I’m getting a new laptop and I think that will help me to rest while accomplishing some things. I also need to set up more really cozy places to sit. My bed is amazing but couch not so much and it’s too hot for me to hammock.
Thank you for watching! So glad it helped. Mornings can be so hard for spoonies. 🤗
I have fibromyalgia, back arthritis, sciatica, sleep apnea, orthostatic hypotension, & bipolar disorder, plus I've started to suspect I might be neurodivergent. I have a lot of trouble getting up, starting my day, following routines, & doing any work or chores. I procrastinate a lot & I'm always in a lot of pain & exhausted. I can't sleep on a regular bed without severe pain. I can't even sit comfortably in most furniture like chairs and couches for more than a few minutes at a time.
What really helps me is having my own place to sit that's specifically suited for my issues & comfortable for me. I live, work (freelance writer), & sleep in a big comfy electric recliner. It's huge, has a super soft & puffy back, headrest, & arms, but it's still firm enough to support my spine. It adjusts via 4 buttons (recline, decline, & increase/decrease the headrest incline) on the side that take very little effort to push. I can recline just enough to lift my feet with my back straight or recline all the way to laying almost completely flat. Then I can also adjust the angle of the headrest.
It's a huge help having at least one place I'm comfortable that I can get in & out of with little effort. It allows me to lay down to sleep, sit up while relaxed & comfortable to work, & adjust the angle to reduce the pressure on my back. For me, this presents issues because spending all day in what is, more or less, my bed, makes it hard for my brain to understand when it's time to work & I fall asleep much more than I likely would if I had 2 separate spaces for work and sleep.
However, something like this could be the perfect solution for you. When you're ready to get out of bed, a comfy recliner can give you somewhere to sit that feels good & doesn't make getting started feel like more of chore. I got mine at Raymore & Flanagan. Hope this helps. 💜
In the past 5 years I’ve had big problem trying to get out bed in a.m. I never used to be that way. I set my alarm way ahead of my work start time to give me more time waking out
Thank you for this. Ive just subscribed. At last, someone who understands exactly how i feel. I dont go on social media such as FB, Instagram orTwitter. I prefer to just post on here or my ME/CFS websites. Ive felt guilty for years about not jumping up in the mornings. You've made me realise ive got to stop feeling so guilty. I also feel guilty about not completing sewing and knitting projects. Im always over ambitious in what i expect of myself. I really need to stop thinking this way! I think your channel will help.
Welcome to the community! So glad to have you. 💖
Great video!
Want to cry , feeling overwhelmed , finally everything is making sense , i am glad i finally got diagnosed , pre diagnosis it was even more difficult to understand why i was always so tired atleast now I know, the amount of gaslighting by others and myself i have put myself through..... uff . My doctor told me off for feeling anxious even though i didnt say anything just bcz my hands were shaky he gave me a whole lecture on anxiety is useless as if i am doing it on purpose, then proceeded to tell me to stay active when i told her that i was constantly fatigued . Like seriously ! I am tired of dealing with people who dont understand but still cant keep their mouths shut, i dont have the energy to explain it to people in my life , but i am glad atleast it will be easier to be kinder to myself . i have been horribly obnoxious towards myself , always hating myself for my limitations but now things make much more sense
I relate to this so, so much. Sending you lots of love and hugs. 💖
Thank you so much for this video ❤️ Ive just been told about spoonies having no idea what it’s all about. I found your page and this is the first video I watched. I’m now getting back in to bed (without feeling guilty now) and going to rest and listen to your videos from the beginning ❤️
So proud of you for taking care of yourself! 💖
I feel understood for the first time in one of those morning routine videos 😢