Hi Jessica, I’m a young teen with Spastic Cerebral Palsy. I had a operation a few years ago (SDR) that cut 75% of the nerves in my back and have been coping pretty well (though I do struggle with mental health sometimes). However, as I progress throughout secondary school, I find myself getting more and more fatigued because of the long-distance walking I have to do on a daily basis (I mainly use walking sticks to get around) which has caused me to miss weeks off school as I often collapse or faint. The reason this has been particularly hard on my body is because in past years We practically had to stay in the same room due to Covid and the teachers would move to us. This year that stopped and I have had to start walking around the whole school (though they have been EXTREMELY accommodating!). They’ve told me I can use my wheelchair if ever I get too tired, but I feel if I do it will be as though I’ve failed myself and everyone else by taking this ‘step backwards’ and the people who donate money would have done it for nothing. So, I was wondering whether you could make a videos for people like me who have these types of anxieties? Sorry for writing all this😅 I just wanted to also say thank you for making these videos, as it really helps me feel validated! ♥️ (Also I use a fake name for this account to keep my identity more private) Anyway love you💜💜💜
jessica, i wish you had mentioned heart conditions as a chronic illness. also you did a great job of explaining the why of pacing but the how is still a bit confusing.
It’s so incredibly validating to hear about how physically demanding it is to sit at a table for prolonged periods of time. It just doesn’t seem to register to anyone unless they have to face it. Thank you so much for this. Incredibly demoralized with my chronic illness this week, but this video helps let go of some of that overwhelm
True! I love working from home, by the afternoon I can sit up, or I can do work. I can’t do both. So work is done laying down. Which means then I get it done and might even have the energy to make food. Yay me.
I have combined ADHD/ASD and PTSD, and I was shocked recently when I realized that people can actually just…keep going when they tire, like they can push through anything physically or emotionally by sheer will power. Accepting that I just can’t made me realize that the society I live in is truly disabling for me, and asking for accommodations is not weak, it’s courageous.
I have ADHD and anxiety as well and I had the same experience. I can't work full time, it is just not possible for me. I have to work with the energy I've got.
Same here, in fact, I'm pretty sure my energy levels are so low because I pushed myself into complete burnout several times (months where it was impossible to do anything), just trying to keep up with what I was *supposed* to be doing.
Yeah, it's always interesting to me to run into people who are able to work until they "break" from stress because my brain stops working far before I reach that point. I literally can't do brain work until I keel over because my brain will just...stop cooperating. If I take on too much, I will not be able to do _any_ of it, rather than be able to keep pushing through. My stress often comes from being not able to do the all the things rather than doing too many things. And then when the energy is gone...haha. Good luck doing anything.
I have ADHD too (maybe ASD, not sure because it's confusing to understand how they both interact with each other and the tests online don't consider them together). But i've found that when I hyperfocus, I sometimes not realize how exhausted I am and keep going.
Wait...that's a thing abled people can do? I can only do that when I'm really super focused on something, and at that point the idea to rest, or eat, or drink, or sleep, or whatever, doesn't even occur to me. Learn something new every day I guess.
I’ve had a chronic pain condition since I was a teenager. A loved one who also has a very different set of chronic health issues used to ask me “what happens if you just push through the pain?” It was clear that they thought I should be pushing through and that I was being lazy or something. Many years later, I finally saw a variety of pain specialists that explained to me that in my case, I had a pain/muscle failure threshold and every time I went past it, it pushed the threshold lower. If I worked up near it but didn’t reach it, I could raise it gradually. That information was incredibly empowering for me in conversations about my energy and activity limitations.
I was at my sister's home recently, when one of my nephew's friends walked in. When he asked how I was, I said that I had no spoons left. This young man also has chronic pain, so he understands. However it left the two of us explaining spoon theory to the household. It's so hard for other people to understand that no, you can't keep going like the Energizer bunny and you really do need a nap if you want to be awake for dinner.
You actually saved my life a few years ago by stating "but, you don't LOOK disabled" video and other rude, uneducated comments that cut to the quick! Hideous migraines, fibromyalgia plus I had a stroke ten years ago and a neck injury after a fall. Obviously, trying to be a real "trooper" I pushed through it all, until I couldn't! I was laying on the floor (more times than I care to admit) repeatedly asking, "what is WRONG with me?" Pacing?? I didn't even know how to SPELL it; let alone practice it! Over the years, I DID learn how pace myself. Today, the top priority is to color my hair--ANYTHING else I get done is a bonus; a gift. Tomorrow, it will be doing two loads of laundry. It has helped me SO much. I will tackle a task, sit down and rest for 20 minutes and move on (if possible)! If not, at least my ONE task is complete. It's a journey; NOT a sprint! So . . . thank you--you have been my life saver!! 💜💜
I had a close friend who had chronic migraines and fibromyalgia, she went through so much frustration trying to get doctors and her family to believe her and recognize the disabling pain she dealt with on a daily basis. It was crazymaking just to SEE her get doubted about it, I can't imagine coping with that.
After just feeling like I couldn't do any job, I'm so happy to be a self employed dog walker and pet sitter, and grateful that dogs understand when I need to pace myself and when we can go go go. A dog has never made me feel guilty when I couldn't "bring my all" to their walk or play any given day.
That's something I may be working towards. I have to figure out other career plans now and I am working with a disability vocational program and pet sitting or groomer was suggested, as they're not as intensive as training. I will say my dog definitely has made me feel guilty many times but he's rather special needs and needy himself and is good at being very dramatic 😅 dobermans aren't known for being couch potatoes but I've found ways to adapt to his needs. Scent work isn't very demanding on me and he loves it, so when walks are not in the cards, I can lie outside and toss or hide snacks around for him to find and he'd be happy to do that all day.
Love you, Jessica! Neurological conditions are often not taken seriously, so I’m so thankful you included it. It helps to make it easier and spread more awareness about them 🧡
ana-tibs I have damaged my neck from a fall when I fell flat on my face, and have pain, tingling, burning and itching in my arms and shoulder blades. My doctor indicated that those symptoms indicated nerve damage. Of course, the nervous system is vast and complicated, but the answer as to WHY my arms and mid-back had those symptoms was really helpful!
I have cerebral palsy and I have those same pain symptoms it's nerve damage neuropathic pain. I was just diagnosed with small fiber neuropathy. It's really difficult dealing with all these different types of pain and it doesn't stop.
which is so strange because yes "it's all in my head" because that's where the most important organ in my body is and it literally controls my entire body and makes me who I am. obviously if it has trouble functioning it's gonna cause major issues!
I have cerebral palsy and hypermobility syndrome and my neurological condition is so rarely acknowledged as severely energy-limiting, even by my doctors. Hello, my bones, muscles, and joints haven't developed right and have been grinding against each other and subluxing for 20 years??? Of COURSE I'm going to be tired.
I love how you’ve mentioned the “exercise and you won’t be disabled anymore” because I once had to ask a doctor “how the f* do you want me to exercise when I’m too exhausted to get out of bed sometimes?” I know that PT helps and exercise helps but it’s not a miracle nor an easy fix. Thanks to my EDS I had the astonishing result of doing too much PT and making my back problem worse. It’s annoying. I really wish I could do more exercises and maybe in a near future I will but it’s not just waking up one day and hitting the gym. Amazing video as always! I’ll be looking after pacing strategies for me.
Just want to add a shout out to Jo Southall (Jbot), whom Jessica recommended in another video. She's an occupational therapist with EDS and has fantastic advice on pacing and joint protection.
I recently had a specialist prescribe me physical therapy but with several pages of explanations for the chiropractor of what to do and what not to do for a patient with an ELCI. He then proceeded to explain that done incorrectly, physical therapy can be detrimental to people with ELCI.
I haven't even finished this video yet but I need to share: I have an ELCI and was denied Disability because the stupid application process to GET ON disability requires too much energy and driving and appointments that I genuinely couldn't make. Because I couldn't make it to those required steps, I was denied automatically. It's so frustrating because my disability is the reason I couldn't finish my application to receive support?! (I live in the States....where apparently health care is a privilege...)
I feel that! I don't even want to start to try to get on disability because the process sounds so exhausting, not to mention in my state if you're currently working you're automatically disqualified... O_o
Dude(tte), so been there. Still there, trying to find help to get through the process. Such a twisted game of Catch-22 with a side of chicken-or-egg. I often say if people in administrative positions could just spend a day with me they'd see how obvious my disabilities are. But sadly that's not an option. I'm sorry to hear you've struggled with this problem and hope it's resolved for you soon.
They recognized I'm disabled (yay!) but deemed me not disabled enough (😡) to receive money. I watched tons of videos from a disability lawyer on RUclips and thought I had a good chance to prove my case, so I started compiling all my evidence but ran out of time because of the the days and weeks I had to take breaks. I wanted to hire a disability lawyer to handle all that but find it overwhelming and exhausting to try to find one. Meanwhile, I've had no money for months. I want to apply for the county's General Assistance but if I "claim" (their word, not a fan of it) a disability, I have to apply for SSI again and go through a physical exam by a county physician! I'm tired thinking about it. If I don't "claim" I'm disabled, I'll only get money for three months of the year instead of until I'm granted SSI. They make everything so exhausting for people who already barely can get by! I didn't have to do any appointments for disability though. Not at the first denial and reconsideration point. Just paperwork. I think 70% or more of people are denied disability first try, but that doesn't make me feel better, especially when it just fuels my mom's idea that I'm not "DISABLED disabled/you're disabled but not *really* disabled", as if I'm half disabled.
Oof this hits close to home. Someone from disability aid wanted proof of my current energy levels by way of a physical exertion test. Which I hadn't been able to take for years cause I was too ill to get to my doctor. Things can be really screwed up. Sorry to hear you had to go through that.
I have been trying to fill out the paperwork for disability services for my school for like years. Which makes it really hard to get support for my professors.
The Spoon Theory helped me SO much when I was first diagnosed with fibromyalgia. I also have CFS, Underactive Thyroid and PTSD so life can be a struggle. Reading the Spoon Theory gave me a lightbulb moment that even mental work was using up energy/spoons. I’ve told everyone I know who gets diagnosed with chronic illnesses to read it because accepting your condition and limitations is tough. Sending you and all those struggling right now a gentle hug xx
The part about saying “No” is so important! (I do not have a chronic illness, but my Wife and Mother do). Don’t feel guilty thinking that you are letting others down. You are not letting anyone down. People who love and understand you, would rather you say “No” and be able to rest, especially when a “Yes” will really knock you down for who knows how long. You need to do what is best for you.
I wish this was more reassuring. Unfortunately, I have people around me who don't understand and think it's a character flaw and/or me being difficult when I say I can't do something right now or can't help with something. So it's really frustrating and I feel a lot of guilt about it. Logically, I know I have the right to say no. Feeling like I can actually say no without repercussions is another thing. 😔
@@MadCheshireHat I am really sorry that you don’t have the support you deserve. Not having understanding people in ones life is a valid problem that many people have. I don’t know what the answer is, but maybe a little awareness on their part, of how their actions are hurtful to you, is in order. Sharing some of Jessica’s videos might be helpful. Sometimes all you can do is just get through things the best that you can. I do hope that supportive people will be in your life soon. ❤️
I actually never considered that my conditions were classed as energy limiting because doctors never explained that it was valid to connect my lack of energy/ ability to work a full time job without falling asleep at the desk with them. Thank you so much for making this video! I have two of the conditions on that list and hearing someone explain that the fatigue is real and a symptom just as valid as the physical pain is so affirming.
I don't feel at all bad for parking in disability spaces even though I don't generally LOOK disabled. Hooray for chronic migraine, POTS, and chronic joint pains! I do use a cane pretty much daily, and have both a walker and wheelchair for the days that aren't so good. People usually leave me alone when they see my cane. Even if they do decide to complain, I have all of my paperwork and am usually in enough pain to NOT have the energy or patience to deal with their absolute BS. Whether or not I have that blue thing in my window that says I can park in disabled parking is between me and my doctors, not some rando who thinks I "don't look disabled"
Wanted to add another chronic energy limiting illness, Chronic Anemia!! I currently suffer from it and have been since my late teens. Symptoms have worsened as I get older. As in, less able to cope or overcome Symptoms as I get older.
Having PTSD as a chronic illness, energy levels are variable. Some days symptoms are higher and energy is lower. Some days energy levels are pretty up there. But I never know what my energy level will be for the upcoming day. I did find, when learning to live with PTSD, that finding my limits and keeping in them was the best way to ensure I had enough energy to get through the day. Love the line (paraphrasing here) When there's no cure, the maintaining is the thing.
I also have PTSD as a chronic illness. Been dealing with it for four years now. This video was especially helpful to me, especially when I get in that mindset of "it's all in my head, why am I crazy?" I'm not crazy, I'm sick and I need rest.
I was talking to my therapist one time about how I find that I can have the energy and motivation to take care of administrative stuff in my life for maybe a week or two (or a month or two if I reaaaally stretch it), but then I crash and can't keep to my commitments for a few months. She asked me if I'd ever been evaluated for ADHD. I got evaluated and her suspicions were right. Learning where that came from was like seeing color for the first time. I feel like everyone just chalks lethargy or fatigue up to depression or, worse, laziness and flakiness, but it really can wide range of things.
@@LilDinoGuy Did you also have an intense desire to do things (hobbies, creating stuff, learning stuff, cleaning, etc) while being completely unable to do them? And rapidly changing desires/hobbies (three weeks poetry, one month clothing, two weeks calligraphy etc.), but they always come back for a while for a month or less? Asking for a friend…
So glad you’re talking about this! For years I’ve gotten funny looks when I tell people I have a “pain calculator”. Pain is very memorable and I quickly learned to calculate stuff like how many times I’d have to bend my knees, stand up or sit down, and how the temperature would effect my joints. Not to mention the energy to takes to engage with people while you’re in pain. Humaning with a chronic illness to hard in way people don’t think about!
@@skylerbrown5495 Sure! So I explain it this way: a trip to the store isn’t just “a trip to the store”. It’s: standing long enough to get dressed, bending to put my shoes on, remembering to take all of my stuff, walking down the stairs, walking however many steps to get there, and having to be passably friendly to the person running the stand, then do all of it again to get home. Then take into account how I’m feeling that day and/or what the weather is doing (Am I having a flair up? Will the cold/rain mess with my joints?) It helps a lot with things like getting stranded somewhere without enough energy to get back or with rationing my energy among multiple days (I have to do X thing but have an event tomorrow. Will I be able to do both or should I ask for help?) Of course, all of this only works of I stick to my figurative boundaries and listen to my body. And it’s a little bit trail and error. But after ten years I’ve gotten the hang of it. I’m also getting better at factoring in emotional and mental labor (walking a few thousand steps to the store and back is less labor intensive than walking a few thousand steps and back to brunch where you’ll have to engage with people) I have had people say that this method is limiting because I’m “expecting to fail” and “my body might surprise me”. But those people have very clearly not experienced being in pain for days or weeks at a time while having to navigate around it.
@@samanthawilliams549Hi there. I have to do this every day with everything as well. Super not weird at all. Just wanted to share what I think of as a tip. If you have things you have to do regularly or often, like say go to the store, make a list of all the things each individual whole task requires and keep it as a cheat sheet. It's less exhaustive in the long run and makes factoring in other things much easier in a shorter time.
I think that a big part is making sure the people in your life are pacing enablers rather than pacing disablers because you're only as good at pacing as the people in your life. My parents were very bad at allowing me to pace when i was a teenager not because they didn't care but because they didn't understand, whereas now there are people who make sure that I do pace and will remind me that I don't have to everything at once and should rest!
THISSSS!!!! I cannot be around certain family members for extended periods of time because they DO NOT understand how I need to pace myself to avoid migraine attacks. I am constantly having to set boundaries with them and that in and of itself takes a lot of mental energy that eventually impacts me physically. I am so grateful for my chosen family who not only see that I need to pace myself but actively encourage me to do so when we spend time together. I relate to this comment so much.
Lol I got sick while in the best shape of my life (ran 30+ miles a week) People think that healthy habits will save them from disability Alas ableds, I'm here to tell you that this is not true The way you treat us is the way that people will treat you when you're sick #FoodForThought
When you were talking about the energy expended sitting up at the dinner table. 😭😭😭😭 I've never heard anyone else verbalize this. Jessica, this was so validating. 💗
I LOVE mildly sarcastic Jessica. I adore chipper cheerful Jessica as well, but annoyed-at-society, mildly sarcastic Jessica is such a relatable, understandable, REASONABLE mood.
I have always struggled with excessive tiredness for no "medical" reason, and was diagnosed with anxiety and depression about a year ago. So much more makes sense now!! Your content really helps me feel like I'm less alone, I'm 23 and honestly it's an uphill struggle some days. I'm definitely going to apply pacing to my daily life, and helpfully it will help me balance the load of Adulting a bit better.
Hearing all of this helped me so much. I have ASD and the sensorial overload just drains me little by little. And i’m just called lazy and i end up forcing myself and that leads me to breakdowns. Thank you so much ❤️
"People only see you on the good days" DUDE! THANK YOU! that explains why no one seems to suspect I have an illness even though to me it's obvious. That actually makes a lot of sense.
Same! I've been watching Friends over and over because I know the show so well it takes less energy for my brain to watch it than watching something new.
As an autistic I feel a lot of these effects too. I can't really call autism an illness, because it's such a debated area even within the community, but it certainly hits a lot of the same boxes. Learning to manage your energy is paramount in reaching a state of living you feel comfortable with, and I'm so glad you made this video and helping to raise awareness for it.
As a fellow autist, I refer to mine as a "nuerological condition that fluctuates" - it definitely takes its toll in a lot of areas. I feel like the switch to "disorder" happens when all my condition management coping methods have collapsed and the world has overloaded me. That's when my coordination goes out the window and I can't make a drink without dropping it, or talk or have the light on or wear "proper" clothes or answer the phone/door etc etc.
I have ADHD and yeah... it feels weird to call it an "illness" when it's just the way my brain works. it's just different. but a friend of mine who studies medicine actually explained to me that (at least here in Switzerland where I live) ADHD is categorized as an illness so the insurance will have to pay for your medication and doctor/therapist/psychiatrist. Also it means that you can get help at Uni like extra time on tests and separate rooms. If those are the benefits I get for calling it an illness I'll be happy to do so. But in private I definitely prefer "neurodivergent".
My ex therapist was like "it's not an illness there's nothing bad about you!" But here's the thing. By itself, without the societal context, neurodivergencies are just that, divergences. No one calls green eyes a disability, they're just not as common as brown But! Having a world designed specifically with neurotypicals in mind, we fall into the same struggles as people with physical disabilities too, because, for them too, the world is designed with able-bodied people in mind So i say "it is a disability because it puts me at a significant disadvantage in this world" I don't call being left handed a disability because so many things can be done with any handedness that it rarely hinders me, even if the general world is designed for right handed people. It's not about the divergency itself, it's about how our world's design accounts for it, and at how much of a disadvantage it puts us
Thank you for this Jessica. I’ve always struggled with pacing, and trying to do the most in the hours I feel “good.” “You are here, you are seen, and you are not alone” made me tear up 🥲
Same. It's so easy to overdo it on the rare days when I feel like I can actually do things, because momentum is often how I get through difficult tasks, and it's so hard to stop when you feel like you're on a roll. But when I let myself overdo it, I pay for it later. Big time. I wrote a bloody book elsewhere about this, but something my partner and I (both with EDS) try (with varying degrees of success) to do is like...do less than we feel like we can on good days, and a bit more than we feel like we can on bad days (Forgive me for going on if you already know what I'm talking about). It's supposed to stop you overdoing it AND stop deconditioning from happening (if you have the sort of condition where these things might be relevant). And it can be as little as like... ok this is a bad day and all I can do is lie in bed going "buh" at the ceiling...but I went and brushed my teeth. That's it. Just that. Now I'm staying in bed the rest of the day. And then on good days it's like...ok I just loaded the dishwasher and hung a load of laundry but I bet if I just keep going I could get the living room tidy and cook a stew for dinner and maybe do two more loads of laundry and... And you have to go "No. Nope. That's enough.Staaahp." Even though your brain is going NO BUT I'M ON A ROLLLLL. I'm not very good at it, but when I manage to stick to it for a while, it really helps.
@@FlailTV that’s a really nice way of looking at it, thank you. :) It does sound hard to stick to, but definitely nice to be gentle with yourself. I’ve also tried to break things into little steps so it’s less daunting, i.e. I’ll water half the plants one day and finish them the next, or do lots of small loads of dishes so it doesn’t become an insurmountable task. I guess it’s all a balancing act. Blessed be ❤️
I also struggle with energy and I am only now starting to see that even if I am on a roll I should just stop. Especially if I still want to be active in the evening which I definitely should not be. I always pay for it afterwards. I'm studying at university and it's very hard to balance anything. I want to do good and put in the work (also because Iike it a lot) but it comes at the cost of seeing my friends anytime at all. And if I do meet with them it definitely influences my week and with the workload I have to do at university it's something I keep avoiding.
I have fybromyalgia, and my GP recently told me (whilest I was sitting in her office crying my eyes out because of the pain I was in) that because of my fybromyalgia it was very important for me to keep moving... yeah... you try moving when all your joints and muscles feel like there is an inferno burning it's way through from the inside out.... also I smoke a certain green herb to help me out when the pain gets really bad ( thank god that herb is atleast semi legal here in the Netherlands), and my mother has told me more than once "you only say you are in pain to have an excuse to be lazy and smoke"... that couldn't be further from the truth, I wish every day that I could live without it, but I can't
Hello, fellow Fibro spoonie! I'm sorry you are dealing with both an ignorant family member but an ignorant doctor as well. There are some studies that show that exercise can help people with Fibromyalgia, but I don't think most doctors understand how debilitating it can be to push yourself too hard. The realization I came to is that I can't do the same exercise of activity that I did before. Whatever I did needed to have a net positive benefit to my life and health. It didn't matter if any doctors or specialists pushed me to be more active. I am an expert on my body and it is up to me to determine what ultimately is best. In general too most doctors don't seem to know how to teach people how to exercise or be active for Fibromyalgia. In general Fibro peeps need to start really slow and gentle find the exercise and activity level that won't flare our symptoms, avoid activities that cause more pain, slowly and carefully increase activity and evaluate whether the increase had a positive or negative impact. There are a lot of us out here that understand what you are going through. Listen to your body.
Same, but now I have less pain I do find moving in bed while resting is really helpful, just moving hands and feet little and often. Also, just FYI I've found that medical formulations of that green herb are far more effective than just smoking it, if you're able to access that.
That little herb helps me so much with my physical pain and mental anguish. I get overwhelmed quite often and I can’t shut my brain off, it helps slow my cognitive processing down so my mind isn’t constantly racing and can finally relax. Edit: I have Fibromyalgia, Functional Neurological Disorder, ADHD, PTSD, CPTSD, MDD, PDD, GAD, BPD, Sensory issues, IBS, Chronic Migraines, and CFS. Also, possibly some issues with my Central Vestibular System. I’m also just starting to workout (light-ish, but still too much. Trying to find more of a balance) to try to manage the fibro pain because I refuse to use opioids as long as I possibly can.
You have helped me with my illness so much. I recently got a diagnosis after 5 years of not knowing. I've been able to start medication and physical therapy to help my migraines. You were one of the people I looked to when I was lost and felt like no one would ever help me. Thank you for sharing your story and I hope you live the best life.
Jessica I love this. I never thought to use an energy map. What a great idea. I was telling someone the other day I would not be available because my period was due and my symptoms would be bad. They started asking if I should see someone about my unpleasant symptoms and I was like “actually my period symptoms are the least of my worries and I love that because I have a regular period I know when they are coming.” My period symptoms are one of the few things I can predict, so its one area I feel like there is some control. I can schedule around it. I also often find walking easier than just sitting….this has been difficult to explain to others.
I am glad I have a doctor who takes my condition seriously. I have several neurological disabilities. Including autism, anxiety, depression, epilepsy, and severe PTSD.
Thank you so much Jessica! I’ve been struggling so much with my chronic conditions and how changeable it can be. It’s hard to explain to another person that “yes, today I can walk” etc, but then “no, today I can’t hold my arms up to drink my tea it’s too exhausting”. It wears thin… you’re content is so much appreciated ❤️
I'm an American. We also call it jam. "Jelly" is usually the stuff with only the juice of the fruit used. "Jam" usually means something more like preserves (has fruit in it). But it's not a hard and fast rule. Also, love your channel ❤️
@@Theerevert so with a jam, let's say you make blackberry jam. All of the mushed up berries and stuff stay in there. With a jelly, the actual fruit is strained out leaving only the juice and pectin.
Even though I don't have an ELCI I still find the tips/idea of being aware of your energy resources for the day and planning accordingly to not get burnt out very helpful!
I’m so glad you mentioned the couch to 5k thing. I’ve been trying to increase my cardio to help with the POTS and I set a goal for myself to be able to run a 5k by June. Unfortunately I’m nowhere near there. To put it in perspective I’ve been running for nearly two years. POTS (and possibly ME) makes it so difficult to push my limits without severe consequences. I just don’t have the ability to reach athletic goals in the same span of time as anyone else
Girl, same! So so frustrating. I was a Gymnast until I was 17 and legit could work out 30 hours a week and be just fine despite already having several mental illnesses. Right around 17 my pots started becoming an obvious problem, and since then have tried so take up running several times. It is so difficult. My mum passed very suddenly in her 50s 18 months ago and I so so want to be able to workout more so that I can be somewhat more likely to live longer...but it just hasn't worked yet. Good on you for continuing to try. You arent alone!❤
This is actually a tremendously helpful way to view dealing with my health struggles. I so often want to push through to perform at the the level I feel like I should be able to... And then deplete myself for weeks as a result. Which leads to more struggles of feeling inadequate. I'm finally starting to learn that staying within my limits day-to-day helps me do much better in the long run. I know the video isn't necessarily for me, but thank you for spreading the message of self-understanding and self-care!
We have jam in North America too. Jam = whole fruit crushed and preserved as a sweet paste. Jelly = hard bites like seeds removed, preserved as a uniform textured gelatin type paste.
thank you for including long covid. I have RA and EDS (not badly but enough that I was always dislocating things, like shoulders and spraining ankles). But friends with long covid now, will say "Oh I know why you take a nap every afternoon" (one claims if she is going to do something in the evening, she has to plan a nap in the afternoon.)
I might have one of the easiest and most common diagnosis ever: asthma, but severe. However, I do feel limited by that a lot and it being common doesn't make it better, because, come on, everyone has asthma! Now I am sick with what I think is Covid and your video made me feel better about laying in bed all day.
I had (more than once) a person stop me in the store and accuse me of scamming the system because I was clearly NOT disabled. I had a temporary disabled permit for my car because I had had surgery that had me cut open from both my knees up to my bellybutton (like an upside down Y), and involved taking out a muscle from my leg to repair a section of my lower abdomen. I was also doing chemotherapy at the time (I did not loose my hair from my régime of chemo so there was no obvious physical signs). I was polite with the first person….. the second person got a good look at my abdominal scars and then I asked them if they wanted me to drop my pants to see the rest of my scars…..that shut them up pretty quick! Hopefully they will think twice about harassing another disabled person. I totally get calling someone out if they’re parked without a permit (my son was fully wheelchair bound so I have actually called people out) but if someone has a permit, and they are not given out easily, then it’s really not your place to comment.
Thank you for your posts, Jessica. I am a lesbian with an amazing wife of 12 years & I also have had Multiple Sclerosis for 30+ years. Your posts are such an encouragement from your posts.
I have ankylosing spondylitis. Unlike a lot of chronic illnesses exercise really does help, but I often don't have enough energy to do the thing that will help me most. So yes, pacing myself is necessary to keeping myself balanced on that tightrope; if I overdo it I'm screwed, but if I don't do enough I'm also screwed.
I also have it I'm trying to implement 1-2 minute dance breaks at my desk when I feel my joint start to stick I think it's going to be more realistic than going to gym after work
I've recently embraced allowing myself a nap if I need it. I used to feel bad if I felt like I needed to rest. What did I do? I've only been up for x hours, I can't possibly be tired yet. I don't "deserve" to lay down! No. I remind myself I have RA and lupus. Existing uses more energy and resources vs a healthy person. So, I allow myself the nap if I need it now. And I try to squash the societal guilt I've learned all my life.
Something I would add to your list of chronic illnesses are some mental illnesses. My mental illness affects my energy and in addition my mental anguish manifests in physical pain. I also vomit a lot from exasperation in my issues which causes a lot of body aches after. In addition, the anxiety aspects of my mental illness causes breathing and heart issues (similar to atrial fibrillation illness) which is also exhausting and causes pain, discomfort, and fatigue. When I have a bad day mentally, I typically need to sleep for two days straight and my body aches. As well, I use pacing (my psychiatrist even called it that) to break down energy levels exerted by different tasks, especially emotional and mental ones. For example, I went to Disney World last summer. The week before, I rested and did nothing. I built up my energy bank. I knew I would last more than 3 days doing the disney thing. After the trip, I crashed for 3 weeks. I stayed in my room and slept and ate comfort foods. Disability/chronic illness can be based in many different things. I think mental illness has such a stigma that causes those of us that suffer with severe issues are not taken seriously. In fact, yesterday was a trying day for me emotionally and physically as it was non-stop and not what I wanted to be doing. Today I skipped class and am resting, eating gluten free mac and cheese, and gonna watch the new Pixar movie. I don't know how to explain how the mental/emotional and physical fatigue tie into each other, but I know they do. I guess maybe there is a chance I have CFS, but I agree, doing couch to 5k is not going to get me out of bed today
It sounds like you might have some post exertional malaise and if so, you might be right about CFS. I have it. That doesn’t mean your mental illnesses aren’t valid but knowing might help you with some physical symptoms. Emotional and mentally taxing days can be harder on me than physical much of the time
A bit less than a year ago I was diagnosed with idiopathic hypersomnia. Without my medicine for it I have absolutely no energy and have crazy long sleep times. With it, though, I can do most things able-bodied people with normal energy can do. Key term: most, not all. Because of that I often feel like I'm not disabled and don't deserve any sort of help or accomodations. My symptoms are debilitating and very real. Thank you for the reminder that it is okay to get the help I need.
one thing people don't ever understand (at least in my experience) is that conversation takes a lot A LOT of energy and the more the people the worse the energy drain. Everyone tells me to spend more time with my family, insisting that i can lie on the sofa and relax and talk and have fun. What i can't seem to explain to them is that i can't afford to do that and that i find lying in bed mindlessly consuming media as i dissociate to a brainless blob much easier than talking to my parents [which by the way i still wouldn't want to do even if i was in full health cuz they are some very emotionally abusive and toxic people]. Plus, as an autistic person i already find conversations (unless with my people) very very exhausting, it takes a toll on me that makes me want to throw up. but everyone including my parents just keep pestering me as if by sitting with them and undergoing my usual sessions of beratement would magically make my pain go away.
Jessica! You have no idea how helpful this video is to me. As lovely as the lovely people in my life can be, they simply do not understand the concept of chronic illness, so I’ve never came close to being taught this kind of coping techniques. This is beyond incredible for me, the tips in this video will not only help me, but they also opened a full range of things I now know to Google to get similar information! Thank you so much.
A good one for me was realising a task doesn’t have to be completed in one go. So shower . Hair wash has to wait for another day. Can’t always do both the same day. That’s ok. Laundry, sort the laundry. Getting it in the machine might have to wait till later. That’s ok too. You soon figure out which tasks have to be completed in one go, such as you can’t leave wet washing around for too long because it goes mouldy and makes more work. But you can chop veg for dinner and then cook it three hours later, then have a rest before you eat it. Then before you wash up (eat out the saucepan…..saves on plates) . Basically, break everything into small bits of activity and just do what you can.eventually the most important things get done.
18:30 I was actually watching this during a crash. I finally had enough friends to have an actual house party for my birthday, and it was actually everything I wanted. But now I am so sore and so I’m just doing plant care to keep moving while I wait to go to bed
This is invaluable. I cried during parts because it was sooo validating. I’ve been living in so much denial and also disassociation from what I’m feeling (very good at ignoring it/pushing it down), it makes a recovery plan tough. Also, I’m a single mom with a kiddo who needs higher support than some and I have adhd. So…. It’s been SUCH a learning experience that I can’t do it all. But I kind of broke myself, I think. I’ve been living my life in a way where I just push through and get done what needs to get done, no matter how tired I am. And when I got sick, it didn’t work. I tried to exercise so so so many times before the PEM finally made me stop. I’d wait a little and then try again crash. The push crash cycle was devastating. When you mentioned lack of control, that’s 100% where I was. But once you accept that you need to live life a different way, you can start embracing that. I found this validating, bath also extremely practical. So sharing a little bit, but mostly just wanted to say THANK YOU!
I have audhd cptsd and multiple physical disabilities that cause chronic pain. Pacing can be difficult when all you want is to do anything BUT sit down or stay in bed, because yes it is very boring. Podcasts and books are super helpful. I've found some funny ones.
This video came at the perfect time. My energy levels are at an all time low, even had to turn down seeing my best friend. I literally was thinking how much I wished there was a video about how to pace yourself and such when the notification popped up. Thank you Jessica!
This has helped me so much. I suffer from PTSD which comes with some physical limits. I am just happy to know that I am not crazy and I really do need that time to rest and do nothing.
Such a timely post! I'm finally getting around to not just forgiving myself for being exhausted, but realizing I don't need to forgive myself for it. Chronic pain is managed best by me managing my energy output. But it's so hard to say no sometimes. Or cancel plans. Or not meet a deadline I agreed to. It's embarrassing, especially since it wasn't that long ago that I had energy and was not chronically and invisibly ill. Thank you for this. I'm going back to bed now.
Jessica: "You are seen." Me: Haha! Time to cry! Edit: since you've had new hearing aids I've been hearing a slightly different voice. That surprised me as a hearing person Edit 2: sitting up being effort is SUCH A MOOD
With ME/CFS it is especially important to practice pacing. Unfortunately, people with ME/CFS can have a long term worsening of symptoms if they overdue themselves especially if they don't recover adequately between crashes. I used to think I just had the ELCI, Fibromyalgia and that overdoing it would cause flares, but that I could recover to my pre-flare levels. I couldn't understand why my energy levels decreased more and more and I was progressively getting worse. Then I realized I had ME/CFS as well and that patients with ME/CFS don't always recover from over extending themselves. It is a incredibly distressing aspect to ME/CFS. One that even doctors haven't historically recognized especially in the UK (fraudulent PACE trial.) It doesn't help that the diagnosis of ME/CFS is often delayed for years for people that have it.
I've been really struggling with my fatigue lately. Especially with trying to date. Meeting new people and going on first dates is...incredibly exhausting
I have ankylosing spondylitis and always forget it causes fatigue. I've been barely able to stand up today and this was really good timing for this video. Thank you!
I've had to learn pacing after the past several years of chronic fatigue, pain, migraines and PTSD...I didn't know what it was called until today! I've learnt more from Jessica than any health care professional I've seen. As someone who was previously always on the go (any other Capricorns here?), I still deal with guilt and frustration over not being able to do as much as I used to (I used to work 12-16 hours a day for a start), so this is a wonderful reminder that pacing is absolutely necessary. Love you Jessica and your channel. 💜💛💚💙
I suffer from chronic migraines. Some days are good, some are bad. Stress and weather/pressure change are my major triggers. I am blessed to be working in a smaller school where they know me and care about my well-being. I am only part-time but I am working towards full-time.
Thank you so much for making this! And for mentioning the struggle with boredom. I went from being a fairly active, creative, spontaneous person to being someone who spends most days in front of a screen just to keep the boredom from exhausting me even further. After years I think I have the ”sense” of pacing down, as in, I can feel what my energy levels are for the day and kind of predict how much I can do without exhausting myself. But about every two months, I start doubting that I actually need to limit myself that much, and try to do just a little bit more, then when I start getting seriously exhausted after three to four days, I remember why I usually do so little. It’s very very frustrating, sad and scary, and hard to explain to people who only ever see me on my good days or when I have saved up energy to visit, or when I’m burning my reserves to be able to see them.
I'm not chronically ill but I was burnt out a year ago and (in combination with adhd and other mental health issues) I therefore have a more restricted energy bank than I used to have. So this video was definitely helpful! ❤️
This is a couple of months late, but thank you for making this video. As someone living with schizophrenia it's hard to remember to pace myself. Often it's difficult doing basic things like getting out of bed, eating, leaving the house for even a few minutes. And more complicated things like spending time with friends (or even just messaging them) , cleaning/chores, reading books, even just picking a youtube video to watch are downright impossible most days. Often I have to weigh the tasks I need to get done against my wants, and tap out on spoons before I've even finished the "needs" list. So, thank you for validating my experiences with this and making me feel like there's something I might actually be able to do about it. I really needed that.
I'm glad I'm not the only person who finds sitting at a table, eating, talking, and other mundane tasks absolutely exhausting😴 Also love the outfit today. You look stunning as always!
The giddy joy of seeing a slim chance of doing anything, and you bolt for the opportunity of not being stuck AND getting stuff done or going a bit bonkers is VERY ALLURING!!!
I think the hardest aspect of pacing for me is how it involves other people. When I could barely get of the couch is was so hard to ask my family if they could make me lunch (being walking to the fridge, putting cheese on bread, and walking back to the fridge) as it felt like such an easy thing I should be able to do even when I couldn’t. Or to ask if I could eat dinner on the couch as that didn’t require me to sit as upright
Hi from Denmark! Brain injury is also under this category 😅 We had a course on fatigue management, but it still takes so long before you really accept and live by it 😉😝 Love your videos 💝💝
This was brilliant and amazingly helpful. I am almost 40 now, have been dealing with CFS triggered by Epstein Bar Virus when I was 15, plus insane allergies, asthma and some other mental disorder stuff (in the process of being diagnosed). I have spent years trying to live up to the expectations of people who not only don't understand the conditions I deal with but often completely disregard their validity. I am only now starting to forgive myself for being ill (which sound crazy and probably is) and allow myself the leeway I need to build a life that works for me.
It's so refreshing to hear someone else talk about the need to ration energy. I've tried explaining to healthy friends why I can't "just stay up late one night" or why sometimes it's either wash dishes OR do a load of laundry. Or (when your disability isn't outwardly apparent) why today you can do X amount of work but only Y amount another day. This is very validating. Thank you.
Thankyou so much for acknowledging Long Covid in this video 💕 So many people now at 2+ years and yet even within the medical community our symptoms are often being dismissed and the condition trivialised.
I have quite the list of chronic illnesses and wasn’t properly diagnosed until I was 27. Pacing is something I’ve never mastered and struggle with greatly. Thank you for your content.
Jessica in this house we would love it if some of your videos covered your love of vintage , vintage design , where you shop vintage , how your interest started , vintage living , the story behind some of your dresses and vintage furniture or pieces of jewellery - you are bewitching to watch and also we would love you to share this fabulous side of Jessica 😎
You are such a delight to listen to/watch even while speaking out about important issues. So glad I found your channel (years ago) while trying to gather ideas for period clothes & hairstyles. Had no idea I'd also be dealing with chronic illness back then but here we are 🤷🏼
Thank you so much. I have long covid and have to write a list of everything I have to do in a day and what I can put off if I need to. A lot of people have told me I need to work out but I already go to the gym about twice a week to try to get my lungs working and my strength back. I have to be on a good day energy/brain fog wise for my health and safety (even basic equipment can become very dangerous with brain fog) and even then, twenty minutes of exercise wipes me out for hours. My uni isn't offering any help because of the lack of research so I'm having to email my teachers individually and rely on my girlfriend for more than I'd like to.
I live with chronic pain (specifically migraines) and never... even got a diagnosis. I still don't technically have one. One day, about two or three years after I finally had a doctor listen to me and got some proper pain medication, I got a letter in the mail for people with "severe chronic migraines" and the moment I realized that I do, in fact, have chronic pain, I felt so validated and relieved that I could've cried. It's gotten so much more manageble since I found that out, and even more so when I feel like there's actually people that understand.
After years of being a stubborn idiot and acting like “God I’m exhausted, can’t think and in pain but I’ve got a ton of schoolwork to do and those tasks for my job, I’ll blast through them and I’ll be alright, right?” I had a horrific energy crash, have been more or less housebound for the last week and a half now, and with help/evidence from my doctor, actually reduced my hours at work and at college and am now researching ways to be more mindful of my energy levels (I don’t know what my condition is yet as I’m still waiting on that neurology appointment - thanks NHS! 😒). I love the colouring in idea and will do that. Your videos have really helped me with that Jessica - thanks so much!
Hi, I'm Angela. I'm from America. I love your channel especially the baking. I have chronic pain all over my body and I also have congestive heart failure all at 42. People always talk about how young I am. The doctors don't know what caused my heart condition. I have fine blood pressure and good cholesterol. They say I must have gotten a virus. Anyway, I often blame myself, think I'm just being lazy, or think that I need to be out of bed everyday. This video is a life saver. It made me feel less alone and less lazy. A lot of your videos help me. Thank you so very much.
Thank you for sharing. My Nanny was from the north and I wish I was in the UK ...because here in America we push ourselves so hard the harder we push ourselves the 'better' we are. Thank God that way of thinking is starting to die out.
This is amazingly validating. Thank you. I have been dealing with Covid effects for months and feel guilty for how much it impairs my life. I haven't called it a chronic illness bc theoretically it's temporary.
I also have Long Covid on top of pre-existing energy issues. Way back in March, April and May 2020, in online support groups, people with ME were wonderfully using spoons to come in and give advice on pacing and how to live with fatigue. I truly hope that a positive outcome of covid is more understanding of energy limiting condition.
Thank you so much for posting this - I am about to start a very intense course of treatment that is likely to leave me incredibly fatigued, going to use some of these tips!
My ELCI power move is going out with friends and falling asleep in my seat. I love how normal this has become, and I can still sort of hear what is happening and feel involved.
Yup. I spent most of a Levellers gig at a festival sitting on the ground, guarded by my girlfriend's bike wheel, with my body fast asleep and my mind loving the music.
Thank you again, Jessica. As a woman who's nearing her 72nd birthday and in overall good health; age brings it's own challenges, and my energy level is one of them. Never having driven, I walk everywhere, and do aerobic exercise. Once or twice a month I am just exhausted, and allow myself an "in bed" day as needed. I plan for chores, but feel entitled to move one or more if I run out of energy, and reward myself with a "crafts" day occasionally, to indulge in purely creative expression, as that's a big part of life for me. Learning to cope with reduced balance, visual acuity, stamina and range of motion is challenging, but no more than many folks live with from childhood. It's all about being grateful for what you can do and making preparations for those times when you can't do much. You give clear expression to so many issues. Thanks!
Filling up sheets with different aesthetically pleasing colors sounds great and fills my journal loving self with joy, but ironically, that takes up energy too. 😂 I do like to journal when I can though, and sometimes entries are just like "I AM TIRED" and "I WANT MORE ENERGY" hahah. I've also been working from home since I learned it was a thing (about 10 years ago), and I always tell people... I need a bed in my office. I need to be able to lie down as I please. Thank God for the work from home setup!
Since my wife died last month, I've been pushing myself. I have fibro, but for the first 4 days, my sister pushed me. I did take a break after she left, but only for a couple of days. Now, however, I am more pacing myself. I don't do more than an hour at a time, generally less, but if I do less, I'll try to get back to what I was doing so I can finish it in a day. This is how I've managed to clean all the counter tops in my kitchen. I've also started on going through my pantries, yeah, I have 2. I'm going through the one I haven't gone through since we set it up in 2018. I've taken 2 loads of expired food out of it. The wife would want something, get it and then only eat a few cans of it and... well... it expired. The deal is, however, with my food allergies, I couldn't help her eat them - I've a serious corn protein allergy.
Thank you so much for this video, Jessica! My condition is far less debilitating than yours, but I do have chronic migraines. They seem to be most often triggered simply by getting too tired (although heavy intake of chocolate is certainly another notable trigger), and I just don't seem to have as much energy as some people around me, so my migraines are fairly frequent. I really appreciate this information on pacing and being straightforward about what you can and cannot do. I turned down an extra job today because I realized it would overwhelm my energy, and this video feels like the validation I needed for that choice.
As someone with a hot stew of issues, rampant adult ADHD, Primary Immunodeficiency, PTSD, migraines, and an unspecified neurological pain condition, it’s so nice to be seen. The amount of doctors that want to fob my issues on something else for a different doctor is legendary. Just cooking dinner exhaust me. As a single mom, all the financial responsibility falls on me. Everyone talks about how easy it is to just do “X”, and to me it’s scaling Mt. Everest.
I'm new to disability -- dealing with chronic pain and fatigue from traumatic injuries, your channel among others like it are helping me feel seen and validated. thank you.
I've been watching this channel on and off for a couple years and just recently found out I myself am chronically ill, maybe that's why I found this channel relatable
Thank you for the video ❤ I've been struggling a lot with my chronic illnesses, and they've gotten worse since I got Covid in 2020. It's scary to feel like you're slowly losing who you used to be, but your videos are very uplifting and helpful. 💗
Omg, that example of eating at the diner table. Perfect example. I cut up everything right at the beginning, so I can hold my fork in my right hand and support my head/upper body with my left hand. If I'm home I can rest my body forward on my legs that get pulled up to chest level. Makes eating so much more enjoyable.
I never did the "recording" it part of it, but I did learn which things tire me, and it was a lot harder to realize that I've got not only limited physical energy, but also mental & emotional energy to mind. It was a gamechanger to be able to tell myself "no, you're not going to have this emotional convo right now, it can wait until tomorrow". Or "no, all these appointments and calls will have to be tomorrow when you can handle them." It really upped my quality of life, honestly. Thank you for the more calculating side to it! I'll go color a chart and see what comes out. Love you, Jess ♥
I have a number of interrelated and inter-conflicting conditions. The biggest impact "pacing" has on my life is preparing for an important event. I am SO CAREFUL for the days or week before something I want or need to be at. What I eat, how much I clean, how much I sleep, how much I shower. I've learned a lot and have gotten pretty good at it, but boy is it exhausting trying to not be exhausted at exactly the right moment!
Once upon a time I would have said 'I don't know why it took me so long to find your videos" except the perfect reason as to why IS that I have ME/CFS and it means that I simply don't typically have the energy to FIND things that may actually be helpful to me. This was so incredibly helpful and affirming, THANK YOU.
Always love the chronic illness tips. I often find myself coming back to these types of videos when I'm struggling for your practicality and positivity. Thank you, Jessica!
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Hi Jessica, I’m a young teen with Spastic Cerebral Palsy. I had a operation a few years ago (SDR) that cut 75% of the nerves in my back and have been coping pretty well (though I do struggle with mental health sometimes). However, as I progress throughout secondary school, I find myself getting more and more fatigued because of the long-distance walking I have to do on a daily basis (I mainly use walking sticks to get around) which has caused me to miss weeks off school as I often collapse or faint. The reason this has been particularly hard on my body is because in past years We practically had to stay in the same room due to Covid and the teachers would move to us. This year that stopped and I have had to start walking around the whole school (though they have been EXTREMELY accommodating!). They’ve told me I can use my wheelchair if ever I get too tired, but I feel if I do it will be as though I’ve failed myself and everyone else by taking this ‘step backwards’ and the people who donate money would have done it for nothing. So, I was wondering whether you could make a videos for people like me who have these types of anxieties? Sorry for writing all this😅
I just wanted to also say thank you for making these videos, as it really helps me feel validated! ♥️
(Also I use a fake name for this account to keep my identity more private)
Anyway love you💜💜💜
heads up that at 4:59 it says "you *are* alone" instead of "you are *not* alone"!
Remember rheumatoid arthritis!
jessica, i wish you had mentioned heart conditions as a chronic illness. also you did a great job of explaining the why of pacing but the how is still a bit confusing.
Do have any copies of the sheets you could share? examples or where to find them?
It’s so incredibly validating to hear about how physically demanding it is to sit at a table for prolonged periods of time. It just doesn’t seem to register to anyone unless they have to face it. Thank you so much for this. Incredibly demoralized with my chronic illness this week, but this video helps let go of some of that overwhelm
True! I love working from home, by the afternoon I can sit up, or I can do work. I can’t do both. So work is done laying down. Which means then I get it done and might even have the energy to make food. Yay me.
One day I was eating dinner at the table and couldn't feel my feet I didn't know what to do
I have chronic back pain and sitting in the wrong chair for an hour or two can leave me in so much pain that I can barely walk
Yes! Sometimes I’m ashamed to say that when I’m unwell just sitting or lifting my head can make me very weak. For my age, it’s kind of not common
SAME! I rly struggle being upright for long so it's validating to hear it isn't just me
I have combined ADHD/ASD and PTSD, and I was shocked recently when I realized that people can actually just…keep going when they tire, like they can push through anything physically or emotionally by sheer will power. Accepting that I just can’t made me realize that the society I live in is truly disabling for me, and asking for accommodations is not weak, it’s courageous.
I have ADHD and anxiety as well and I had the same experience. I can't work full time, it is just not possible for me. I have to work with the energy I've got.
Same here, in fact, I'm pretty sure my energy levels are so low because I pushed myself into complete burnout several times (months where it was impossible to do anything), just trying to keep up with what I was *supposed* to be doing.
Yeah, it's always interesting to me to run into people who are able to work until they "break" from stress because my brain stops working far before I reach that point. I literally can't do brain work until I keel over because my brain will just...stop cooperating. If I take on too much, I will not be able to do _any_ of it, rather than be able to keep pushing through. My stress often comes from being not able to do the all the things rather than doing too many things. And then when the energy is gone...haha. Good luck doing anything.
I have ADHD too (maybe ASD, not sure because it's confusing to understand how they both interact with each other and the tests online don't consider them together).
But i've found that when I hyperfocus, I sometimes not realize how exhausted I am and keep going.
Wait...that's a thing abled people can do? I can only do that when I'm really super focused on something, and at that point the idea to rest, or eat, or drink, or sleep, or whatever, doesn't even occur to me. Learn something new every day I guess.
I’ve had a chronic pain condition since I was a teenager. A loved one who also has a very different set of chronic health issues used to ask me “what happens if you just push through the pain?” It was clear that they thought I should be pushing through and that I was being lazy or something. Many years later, I finally saw a variety of pain specialists that explained to me that in my case, I had a pain/muscle failure threshold and every time I went past it, it pushed the threshold lower. If I worked up near it but didn’t reach it, I could raise it gradually. That information was incredibly empowering for me in conversations about my energy and activity limitations.
Do you have CFS fybromyalgia
I was at my sister's home recently, when one of my nephew's friends walked in. When he asked how I was, I said that I had no spoons left. This young man also has chronic pain, so he understands. However it left the two of us explaining spoon theory to the household. It's so hard for other people to understand that no, you can't keep going like the Energizer bunny and you really do need a nap if you want to be awake for dinner.
You actually saved my life a few years ago by stating "but, you don't LOOK disabled" video and other rude, uneducated comments that cut to the quick! Hideous migraines, fibromyalgia plus I had a stroke ten years ago and a neck injury after a fall. Obviously, trying to be a real "trooper" I pushed through it all, until I couldn't! I was laying on the floor (more times than I care to admit) repeatedly asking, "what is WRONG with me?" Pacing?? I didn't even know how to SPELL it; let alone practice it! Over the years, I DID learn how pace myself. Today, the top priority is to color my hair--ANYTHING else I get done is a bonus; a gift. Tomorrow, it will be doing two loads of laundry. It has helped me SO much. I will tackle a task, sit down and rest for 20 minutes and move on (if possible)! If not, at least my ONE task is complete. It's a journey; NOT a sprint! So . . . thank you--you have been my life saver!! 💜💜
I had a close friend who had chronic migraines and fibromyalgia, she went through so much frustration trying to get doctors and her family to believe her and recognize the disabling pain she dealt with on a daily basis. It was crazymaking just to SEE her get doubted about it, I can't imagine coping with that.
@@alexia3552 As a person who is going through the same stuff as your friend, Ican tell you it isn´t fun. I hope she gets the help she needs.
This comment just summed up my life right now! ❤️
@@alexia3552same here 27 years at 43 now diagnosed autism ADHD heds causation my father has CFS to
After just feeling like I couldn't do any job, I'm so happy to be a self employed dog walker and pet sitter, and grateful that dogs understand when I need to pace myself and when we can go go go. A dog has never made me feel guilty when I couldn't "bring my all" to their walk or play any given day.
That's something I may be working towards. I have to figure out other career plans now and I am working with a disability vocational program and pet sitting or groomer was suggested, as they're not as intensive as training. I will say my dog definitely has made me feel guilty many times but he's rather special needs and needy himself and is good at being very dramatic 😅 dobermans aren't known for being couch potatoes but I've found ways to adapt to his needs. Scent work isn't very demanding on me and he loves it, so when walks are not in the cards, I can lie outside and toss or hide snacks around for him to find and he'd be happy to do that all day.
@@MadCheshireHat Ah, that sounds like fun thing to do with a dog too :)
Love you, Jessica! Neurological conditions are often not taken seriously, so I’m so thankful you included it. It helps to make it easier and spread more awareness about them 🧡
Thank you so much, I'm pleased you like it! ❤️
ana-tibs I have damaged my neck from a fall when I fell flat on my face, and have pain, tingling, burning and itching in my arms and shoulder blades. My doctor indicated that those symptoms indicated nerve damage. Of course, the nervous system is vast and complicated, but the answer as to WHY my arms and mid-back had those symptoms was really helpful!
I have cerebral palsy and I have those same pain symptoms it's nerve damage neuropathic pain. I was just diagnosed with small fiber neuropathy. It's really difficult dealing with all these different types of pain and it doesn't stop.
which is so strange because yes "it's all in my head" because that's where the most important organ in my body is and it literally controls my entire body and makes me who I am. obviously if it has trouble functioning it's gonna cause major issues!
I have cerebral palsy and hypermobility syndrome and my neurological condition is so rarely acknowledged as severely energy-limiting, even by my doctors. Hello, my bones, muscles, and joints haven't developed right and have been grinding against each other and subluxing for 20 years??? Of COURSE I'm going to be tired.
I love how you’ve mentioned the “exercise and you won’t be disabled anymore” because I once had to ask a doctor “how the f* do you want me to exercise when I’m too exhausted to get out of bed sometimes?” I know that PT helps and exercise helps but it’s not a miracle nor an easy fix. Thanks to my EDS I had the astonishing result of doing too much PT and making my back problem worse. It’s annoying. I really wish I could do more exercises and maybe in a near future I will but it’s not just waking up one day and hitting the gym. Amazing video as always! I’ll be looking after pacing strategies for me.
Just want to add a shout out to Jo Southall (Jbot), whom Jessica recommended in another video. She's an occupational therapist with EDS and has fantastic advice on pacing and joint protection.
I recently had a specialist prescribe me physical therapy but with several pages of explanations for the chiropractor of what to do and what not to do for a patient with an ELCI. He then proceeded to explain that done incorrectly, physical therapy can be detrimental to people with ELCI.
@@hopegate9620elci?
I haven't even finished this video yet but I need to share: I have an ELCI and was denied Disability because the stupid application process to GET ON disability requires too much energy and driving and appointments that I genuinely couldn't make. Because I couldn't make it to those required steps, I was denied automatically. It's so frustrating because my disability is the reason I couldn't finish my application to receive support?! (I live in the States....where apparently health care is a privilege...)
I feel that! I don't even want to start to try to get on disability because the process sounds so exhausting, not to mention in my state if you're currently working you're automatically disqualified... O_o
Dude(tte), so been there. Still there, trying to find help to get through the process. Such a twisted game of Catch-22 with a side of chicken-or-egg. I often say if people in administrative positions could just spend a day with me they'd see how obvious my disabilities are. But sadly that's not an option.
I'm sorry to hear you've struggled with this problem and hope it's resolved for you soon.
They recognized I'm disabled (yay!) but deemed me not disabled enough (😡) to receive money. I watched tons of videos from a disability lawyer on RUclips and thought I had a good chance to prove my case, so I started compiling all my evidence but ran out of time because of the the days and weeks I had to take breaks. I wanted to hire a disability lawyer to handle all that but find it overwhelming and exhausting to try to find one. Meanwhile, I've had no money for months. I want to apply for the county's General Assistance but if I "claim" (their word, not a fan of it) a disability, I have to apply for SSI again and go through a physical exam by a county physician! I'm tired thinking about it. If I don't "claim" I'm disabled, I'll only get money for three months of the year instead of until I'm granted SSI.
They make everything so exhausting for people who already barely can get by!
I didn't have to do any appointments for disability though. Not at the first denial and reconsideration point. Just paperwork.
I think 70% or more of people are denied disability first try, but that doesn't make me feel better, especially when it just fuels my mom's idea that I'm not "DISABLED disabled/you're disabled but not *really* disabled", as if I'm half disabled.
Oof this hits close to home. Someone from disability aid wanted proof of my current energy levels by way of a physical exertion test. Which I hadn't been able to take for years cause I was too ill to get to my doctor. Things can be really screwed up. Sorry to hear you had to go through that.
I have been trying to fill out the paperwork for disability services for my school for like years. Which makes it really hard to get support for my professors.
The Spoon Theory helped me SO much when I was first diagnosed with fibromyalgia. I also have CFS, Underactive Thyroid and PTSD so life can be a struggle. Reading the Spoon Theory gave me a lightbulb moment that even mental work was using up energy/spoons. I’ve told everyone I know who gets diagnosed with chronic illnesses to read it because accepting your condition and limitations is tough. Sending you and all those struggling right now a gentle hug xx
Spoon Theory has helped me recognize that I'm not abled.
The part about saying “No” is so important! (I do not have a chronic illness, but my Wife and Mother do). Don’t feel guilty thinking that you are letting others down. You are not letting anyone down. People who love and understand you, would rather you say “No” and be able to rest, especially when a “Yes” will really knock you down for who knows how long.
You need to do what is best for you.
I wish this was more reassuring. Unfortunately, I have people around me who don't understand and think it's a character flaw and/or me being difficult when I say I can't do something right now or can't help with something. So it's really frustrating and I feel a lot of guilt about it. Logically, I know I have the right to say no. Feeling like I can actually say no without repercussions is another thing. 😔
@@MadCheshireHat I am really sorry that you don’t have the support you deserve. Not having understanding people in ones life is a valid problem that many people have. I don’t know what the answer is, but maybe a little awareness on their part, of how their actions are hurtful to you, is in order. Sharing some of Jessica’s videos might be helpful.
Sometimes all you can do is just get through things the best that you can. I do hope that supportive people will be in your life soon. ❤️
I actually never considered that my conditions were classed as energy limiting because doctors never explained that it was valid to connect my lack of energy/ ability to work a full time job without falling asleep at the desk with them.
Thank you so much for making this video! I have two of the conditions on that list and hearing someone explain that the fatigue is real and a symptom just as valid as the physical pain is so affirming.
I don't feel at all bad for parking in disability spaces even though I don't generally LOOK disabled. Hooray for chronic migraine, POTS, and chronic joint pains! I do use a cane pretty much daily, and have both a walker and wheelchair for the days that aren't so good.
People usually leave me alone when they see my cane. Even if they do decide to complain, I have all of my paperwork and am usually in enough pain to NOT have the energy or patience to deal with their absolute BS.
Whether or not I have that blue thing in my window that says I can park in disabled parking is between me and my doctors, not some rando who thinks I "don't look disabled"
Wanted to add another chronic energy limiting illness, Chronic Anemia!! I currently suffer from it and have been since my late teens. Symptoms have worsened as I get older. As in, less able to cope or overcome Symptoms as I get older.
Having PTSD as a chronic illness, energy levels are variable. Some days symptoms are higher and energy is lower. Some days energy levels are pretty up there. But I never know what my energy level will be for the upcoming day. I did find, when learning to live with PTSD, that finding my limits and keeping in them was the best way to ensure I had enough energy to get through the day. Love the line (paraphrasing here) When there's no cure, the maintaining is the thing.
I also have PTSD as a chronic illness. Been dealing with it for four years now. This video was especially helpful to me, especially when I get in that mindset of "it's all in my head, why am I crazy?" I'm not crazy, I'm sick and I need rest.
I was talking to my therapist one time about how I find that I can have the energy and motivation to take care of administrative stuff in my life for maybe a week or two (or a month or two if I reaaaally stretch it), but then I crash and can't keep to my commitments for a few months. She asked me if I'd ever been evaluated for ADHD. I got evaluated and her suspicions were right. Learning where that came from was like seeing color for the first time. I feel like everyone just chalks lethargy or fatigue up to depression or, worse, laziness and flakiness, but it really can wide range of things.
@@LilDinoGuy Did you also have an intense desire to do things (hobbies, creating stuff, learning stuff, cleaning, etc) while being completely unable to do them? And rapidly changing desires/hobbies (three weeks poetry, one month clothing, two weeks calligraphy etc.), but they always come back for a while for a month or less?
Asking for a friend…
@@TooSickToDressVictorian No, haha because I also have depression, but that is common.
@@LilDinoGuy Huh… I might wanna get that checked out… pretty sure I‘m good at masking, since these things only come out when I‘m alone.
So glad you’re talking about this! For years I’ve gotten funny looks when I tell people I have a “pain calculator”. Pain is very memorable and I quickly learned to calculate stuff like how many times I’d have to bend my knees, stand up or sit down, and how the temperature would effect my joints. Not to mention the energy to takes to engage with people while you’re in pain. Humaning with a chronic illness to hard in way people don’t think about!
can you post the formula/way of doing this please, I am in NEED of that. x
Humaning is such a fantastic word👏
Would also be super interested to know more if you are able to share
@@skylerbrown5495 Sure! So I explain it this way: a trip to the store isn’t just “a trip to the store”. It’s: standing long enough to get dressed, bending to put my shoes on, remembering to take all of my stuff, walking down the stairs, walking however many steps to get there, and having to be passably friendly to the person running the stand, then do all of it again to get home. Then take into account how I’m feeling that day and/or what the weather is doing (Am I having a flair up? Will the cold/rain mess with my joints?)
It helps a lot with things like getting stranded somewhere without enough energy to get back or with rationing my energy among multiple days (I have to do X thing but have an event tomorrow. Will I be able to do both or should I ask for help?)
Of course, all of this only works of I stick to my figurative boundaries and listen to my body. And it’s a little bit trail and error. But after ten years I’ve gotten the hang of it. I’m also getting better at factoring in emotional and mental labor (walking a few thousand steps to the store and back is less labor intensive than walking a few thousand steps and back to brunch where you’ll have to engage with people)
I have had people say that this method is limiting because I’m “expecting to fail” and “my body might surprise me”. But those people have very clearly not experienced being in pain for days or weeks at a time while having to navigate around it.
@@samanthawilliams549Hi there. I have to do this every day with everything as well. Super not weird at all.
Just wanted to share what I think of as a tip. If you have things you have to do regularly or often, like say go to the store, make a list of all the things each individual whole task requires and keep it as a cheat sheet. It's less exhaustive in the long run and makes factoring in other things much easier in a shorter time.
I think that a big part is making sure the people in your life are pacing enablers rather than pacing disablers because you're only as good at pacing as the people in your life. My parents were very bad at allowing me to pace when i was a teenager not because they didn't care but because they didn't understand, whereas now there are people who make sure that I do pace and will remind me that I don't have to everything at once and should rest!
THISSSS!!!! I cannot be around certain family members for extended periods of time because they DO NOT understand how I need to pace myself to avoid migraine attacks. I am constantly having to set boundaries with them and that in and of itself takes a lot of mental energy that eventually impacts me physically. I am so grateful for my chosen family who not only see that I need to pace myself but actively encourage me to do so when we spend time together. I relate to this comment so much.
Lol I got sick while in the best shape of my life (ran 30+ miles a week)
People think that healthy habits will save them from disability
Alas ableds, I'm here to tell you that this is not true
The way you treat us is the way that people will treat you when you're sick
#FoodForThought
When you were talking about the energy expended sitting up at the dinner table. 😭😭😭😭 I've never heard anyone else verbalize this. Jessica, this was so validating. 💗
I LOVE mildly sarcastic Jessica. I adore chipper cheerful Jessica as well, but annoyed-at-society, mildly sarcastic Jessica is such a relatable, understandable, REASONABLE mood.
I have always struggled with excessive tiredness for no "medical" reason, and was diagnosed with anxiety and depression about a year ago. So much more makes sense now!! Your content really helps me feel like I'm less alone, I'm 23 and honestly it's an uphill struggle some days. I'm definitely going to apply pacing to my daily life, and helpfully it will help me balance the load of Adulting a bit better.
Hearing all of this helped me so much. I have ASD and the sensorial overload just drains me little by little. And i’m just called lazy and i end up forcing myself and that leads me to breakdowns. Thank you so much ❤️
"People only see you on the good days" DUDE! THANK YOU! that explains why no one seems to suspect I have an illness even though to me it's obvious. That actually makes a lot of sense.
"It's going to be 'Friends' for the tenth time, exactly the same episode" That is just way too relatable
Same! I've been watching Friends over and over because I know the show so well it takes less energy for my brain to watch it than watching something new.
As an autistic I feel a lot of these effects too. I can't really call autism an illness, because it's such a debated area even within the community, but it certainly hits a lot of the same boxes. Learning to manage your energy is paramount in reaching a state of living you feel comfortable with, and I'm so glad you made this video and helping to raise awareness for it.
As a fellow autist, I refer to mine as a "nuerological condition that fluctuates" - it definitely takes its toll in a lot of areas. I feel like the switch to "disorder" happens when all my condition management coping methods have collapsed and the world has overloaded me. That's when my coordination goes out the window and I can't make a drink without dropping it, or talk or have the light on or wear "proper" clothes or answer the phone/door etc etc.
I have ADHD and yeah... it feels weird to call it an "illness" when it's just the way my brain works. it's just different. but a friend of mine who studies medicine actually explained to me that (at least here in Switzerland where I live) ADHD is categorized as an illness so the insurance will have to pay for your medication and doctor/therapist/psychiatrist. Also it means that you can get help at Uni like extra time on tests and separate rooms. If those are the benefits I get for calling it an illness I'll be happy to do so. But in private I definitely prefer "neurodivergent".
@@cassandramuller7337 Yeah, that's my life too. If I don't call it an illness on the paperwork, there's no support to be had. Bah.
My ex therapist was like "it's not an illness there's nothing bad about you!"
But here's the thing. By itself, without the societal context, neurodivergencies are just that, divergences. No one calls green eyes a disability, they're just not as common as brown
But! Having a world designed specifically with neurotypicals in mind, we fall into the same struggles as people with physical disabilities too, because, for them too, the world is designed with able-bodied people in mind
So i say "it is a disability because it puts me at a significant disadvantage in this world"
I don't call being left handed a disability because so many things can be done with any handedness that it rarely hinders me, even if the general world is designed for right handed people.
It's not about the divergency itself, it's about how our world's design accounts for it, and at how much of a disadvantage it puts us
An illness has to _hurt you_
The only thing that hurts me is the round hole the world is trying to force me, a square peg, into
Thank you for this Jessica. I’ve always struggled with pacing, and trying to do the most in the hours I feel “good.” “You are here, you are seen, and you are not alone” made me tear up 🥲
Same. It's so easy to overdo it on the rare days when I feel like I can actually do things, because momentum is often how I get through difficult tasks, and it's so hard to stop when you feel like you're on a roll. But when I let myself overdo it, I pay for it later. Big time.
I wrote a bloody book elsewhere about this, but something my partner and I (both with EDS) try (with varying degrees of success) to do is like...do less than we feel like we can on good days, and a bit more than we feel like we can on bad days (Forgive me for going on if you already know what I'm talking about). It's supposed to stop you overdoing it AND stop deconditioning from happening (if you have the sort of condition where these things might be relevant). And it can be as little as like... ok this is a bad day and all I can do is lie in bed going "buh" at the ceiling...but I went and brushed my teeth. That's it. Just that. Now I'm staying in bed the rest of the day. And then on good days it's like...ok I just loaded the dishwasher and hung a load of laundry but I bet if I just keep going I could get the living room tidy and cook a stew for dinner and maybe do two more loads of laundry and... And you have to go "No. Nope. That's enough.Staaahp." Even though your brain is going NO BUT I'M ON A ROLLLLL.
I'm not very good at it, but when I manage to stick to it for a while, it really helps.
@@FlailTV that’s a really nice way of looking at it, thank you. :) It does sound hard to stick to, but definitely nice to be gentle with yourself. I’ve also tried to break things into little steps so it’s less daunting, i.e. I’ll water half the plants one day and finish them the next, or do lots of small loads of dishes so it doesn’t become an insurmountable task. I guess it’s all a balancing act.
Blessed be ❤️
I also struggle with energy and I am only now starting to see that even if I am on a roll I should just stop. Especially if I still want to be active in the evening which I definitely should not be. I always pay for it afterwards.
I'm studying at university and it's very hard to balance anything. I want to do good and put in the work (also because Iike it a lot) but it comes at the cost of seeing my friends anytime at all. And if I do meet with them it definitely influences my week and with the workload I have to do at university it's something I keep avoiding.
I have fybromyalgia, and my GP recently told me (whilest I was sitting in her office crying my eyes out because of the pain I was in) that because of my fybromyalgia it was very important for me to keep moving... yeah... you try moving when all your joints and muscles feel like there is an inferno burning it's way through from the inside out....
also I smoke a certain green herb to help me out when the pain gets really bad ( thank god that herb is atleast semi legal here in the Netherlands), and my mother has told me more than once "you only say you are in pain to have an excuse to be lazy and smoke"... that couldn't be further from the truth, I wish every day that I could live without it, but I can't
Hello, fellow Fibro spoonie! I'm sorry you are dealing with both an ignorant family member but an ignorant doctor as well. There are some studies that show that exercise can help people with Fibromyalgia, but I don't think most doctors understand how debilitating it can be to push yourself too hard. The realization I came to is that I can't do the same exercise of activity that I did before. Whatever I did needed to have a net positive benefit to my life and health. It didn't matter if any doctors or specialists pushed me to be more active. I am an expert on my body and it is up to me to determine what ultimately is best. In general too most doctors don't seem to know how to teach people how to exercise or be active for Fibromyalgia. In general Fibro peeps need to start really slow and gentle find the exercise and activity level that won't flare our symptoms, avoid activities that cause more pain, slowly and carefully increase activity and evaluate whether the increase had a positive or negative impact. There are a lot of us out here that understand what you are going through. Listen to your body.
Fellow fibro warrior here. My rheumatologist also told me to keep moving. I'm like are you freaking kidding me...
Same, but now I have less pain I do find moving in bed while resting is really helpful, just moving hands and feet little and often. Also, just FYI I've found that medical formulations of that green herb are far more effective than just smoking it, if you're able to access that.
@@mrsmmoose6775 I have an appointment in a few weeks to assess for my card.
That little herb helps me so much with my physical pain and mental anguish. I get overwhelmed quite often and I can’t shut my brain off, it helps slow my cognitive processing down so my mind isn’t constantly racing and can finally relax.
Edit: I have Fibromyalgia, Functional Neurological Disorder, ADHD, PTSD, CPTSD, MDD, PDD, GAD, BPD, Sensory issues, IBS, Chronic Migraines, and CFS. Also, possibly some issues with my Central Vestibular System.
I’m also just starting to workout (light-ish, but still too much. Trying to find more of a balance) to try to manage the fibro pain because I refuse to use opioids as long as I possibly can.
You have helped me with my illness so much. I recently got a diagnosis after 5 years of not knowing. I've been able to start medication and physical therapy to help my migraines. You were one of the people I looked to when I was lost and felt like no one would ever help me. Thank you for sharing your story and I hope you live the best life.
Jessica I love this. I never thought to use an energy map. What a great idea. I was telling someone the other day I would not be available because my period was due and my symptoms would be bad. They started asking if I should see someone about my unpleasant symptoms and I was like “actually my period symptoms are the least of my worries and I love that because I have a regular period I know when they are coming.” My period symptoms are one of the few things I can predict, so its one area I feel like there is some control. I can schedule around it. I also often find walking easier than just sitting….this has been difficult to explain to others.
I am glad I have a doctor who takes my condition seriously. I have several neurological disabilities. Including autism, anxiety, depression, epilepsy, and severe PTSD.
Thank you so much Jessica! I’ve been struggling so much with my chronic conditions and how changeable it can be. It’s hard to explain to another person that “yes, today I can walk” etc, but then “no, today I can’t hold my arms up to drink my tea it’s too exhausting”. It wears thin… you’re content is so much appreciated ❤️
You should invest in straws. Disposable would be better because you don’t have to wash them
@@joshuahere5097 I do use straws 👍 it’s really helpful for the bad days 🙂
I'm an American.
We also call it jam.
"Jelly" is usually the stuff with only the juice of the fruit used.
"Jam" usually means something more like preserves (has fruit in it).
But it's not a hard and fast rule.
Also, love your channel ❤️
Then what the he’ll is marmalade lmao
@@Theerevert gross is what it is lmao
But it's pretty much citrus Jelly with rind in it.
Definitely not my favorite.
@@Theerevert so with a jam, let's say you make blackberry jam. All of the mushed up berries and stuff stay in there. With a jelly, the actual fruit is strained out leaving only the juice and pectin.
Came looking for this comment.
@@Kevin15047 what he said ☝️
Even though I don't have an ELCI I still find the tips/idea of being aware of your energy resources for the day and planning accordingly to not get burnt out very helpful!
Crazy to me how she talks, dresses and acts so lively and cheerfully. When I can't even imagine the pain and sorrows she must've been through.
I’m so glad you mentioned the couch to 5k thing. I’ve been trying to increase my cardio to help with the POTS and I set a goal for myself to be able to run a 5k by June. Unfortunately I’m nowhere near there. To put it in perspective I’ve been running for nearly two years. POTS (and possibly ME) makes it so difficult to push my limits without severe consequences. I just don’t have the ability to reach athletic goals in the same span of time as anyone else
Girl, same! So so frustrating. I was a Gymnast until I was 17 and legit could work out 30 hours a week and be just fine despite already having several mental illnesses. Right around 17 my pots started becoming an obvious problem, and since then have tried so take up running several times. It is so difficult. My mum passed very suddenly in her 50s 18 months ago and I so so want to be able to workout more so that I can be somewhat more likely to live longer...but it just hasn't worked yet. Good on you for continuing to try. You arent alone!❤
This is actually a tremendously helpful way to view dealing with my health struggles. I so often want to push through to perform at the the level I feel like I should be able to... And then deplete myself for weeks as a result. Which leads to more struggles of feeling inadequate.
I'm finally starting to learn that staying within my limits day-to-day helps me do much better in the long run.
I know the video isn't necessarily for me, but thank you for spreading the message of self-understanding and self-care!
We have jam in North America too. Jam = whole fruit crushed and preserved as a sweet paste. Jelly = hard bites like seeds removed, preserved as a uniform textured gelatin type paste.
thank you for including long covid. I have RA and EDS (not badly but enough that I was always dislocating things, like shoulders and spraining ankles). But friends with long covid now, will say "Oh I know why you take a nap every afternoon" (one claims if she is going to do something in the evening, she has to plan a nap in the afternoon.)
I might have one of the easiest and most common diagnosis ever: asthma, but severe. However, I do feel limited by that a lot and it being common doesn't make it better, because, come on, everyone has asthma! Now I am sick with what I think is Covid and your video made me feel better about laying in bed all day.
Hope you feel better soon Josy, and please take it easy.
@@mrsmmoose6775 Thanks a lot. I will try to!
I had (more than once) a person stop me in the store and accuse me of scamming the system because I was clearly NOT disabled. I had a temporary disabled permit for my car because I had had surgery that had me cut open from both my knees up to my bellybutton (like an upside down Y), and involved taking out a muscle from my leg to repair a section of my lower abdomen. I was also doing chemotherapy at the time (I did not loose my hair from my régime of chemo so there was no obvious physical signs). I was polite with the first person….. the second person got a good look at my abdominal scars and then I asked them if they wanted me to drop my pants to see the rest of my scars…..that shut them up pretty quick! Hopefully they will think twice about harassing another disabled person. I totally get calling someone out if they’re parked without a permit (my son was fully wheelchair bound so I have actually called people out) but if someone has a permit, and they are not given out easily, then it’s really not your place to comment.
Thank you for your posts, Jessica. I am a lesbian with an amazing wife of 12 years & I also have had Multiple Sclerosis for 30+ years. Your posts are such an encouragement from your posts.
Lost my.mum.to severe ms do you have heds?
I have ankylosing spondylitis. Unlike a lot of chronic illnesses exercise really does help, but I often don't have enough energy to do the thing that will help me most. So yes, pacing myself is necessary to keeping myself balanced on that tightrope; if I overdo it I'm screwed, but if I don't do enough I'm also screwed.
I also have it
I'm trying to implement 1-2 minute dance breaks at my desk when I feel my joint start to stick
I think it's going to be more realistic than going to gym after work
I've recently embraced allowing myself a nap if I need it. I used to feel bad if I felt like I needed to rest. What did I do? I've only been up for x hours, I can't possibly be tired yet. I don't "deserve" to lay down! No. I remind myself I have RA and lupus. Existing uses more energy and resources vs a healthy person. So, I allow myself the nap if I need it now. And I try to squash the societal guilt I've learned all my life.
Something I would add to your list of chronic illnesses are some mental illnesses. My mental illness affects my energy and in addition my mental anguish manifests in physical pain. I also vomit a lot from exasperation in my issues which causes a lot of body aches after. In addition, the anxiety aspects of my mental illness causes breathing and heart issues (similar to atrial fibrillation illness) which is also exhausting and causes pain, discomfort, and fatigue. When I have a bad day mentally, I typically need to sleep for two days straight and my body aches. As well, I use pacing (my psychiatrist even called it that) to break down energy levels exerted by different tasks, especially emotional and mental ones. For example, I went to Disney World last summer. The week before, I rested and did nothing. I built up my energy bank. I knew I would last more than 3 days doing the disney thing. After the trip, I crashed for 3 weeks. I stayed in my room and slept and ate comfort foods. Disability/chronic illness can be based in many different things. I think mental illness has such a stigma that causes those of us that suffer with severe issues are not taken seriously. In fact, yesterday was a trying day for me emotionally and physically as it was non-stop and not what I wanted to be doing. Today I skipped class and am resting, eating gluten free mac and cheese, and gonna watch the new Pixar movie. I don't know how to explain how the mental/emotional and physical fatigue tie into each other, but I know they do. I guess maybe there is a chance I have CFS, but I agree, doing couch to 5k is not going to get me out of bed today
It sounds like you might have some post exertional malaise and if so, you might be right about CFS. I have it. That doesn’t mean your mental illnesses aren’t valid but knowing might help you with some physical symptoms. Emotional and mentally taxing days can be harder on me than physical much of the time
A bit less than a year ago I was diagnosed with idiopathic hypersomnia. Without my medicine for it I have absolutely no energy and have crazy long sleep times. With it, though, I can do most things able-bodied people with normal energy can do. Key term: most, not all. Because of that I often feel like I'm not disabled and don't deserve any sort of help or accomodations. My symptoms are debilitating and very real. Thank you for the reminder that it is okay to get the help I need.
I hear you! I have the same thing and cero empathy because "I look normal, everyone feels tired". It's hard and I need to get to bed early
one thing people don't ever understand (at least in my experience) is that conversation takes a lot A LOT of energy and the more the people the worse the energy drain.
Everyone tells me to spend more time with my family, insisting that i can lie on the sofa and relax and talk and have fun. What i can't seem to explain to them is that i can't afford to do that and that i find lying in bed mindlessly consuming media as i dissociate to a brainless blob much easier than talking to my parents [which by the way i still wouldn't want to do even if i was in full health cuz they are some very emotionally abusive and toxic people]. Plus, as an autistic person i already find conversations (unless with my people) very very exhausting, it takes a toll on me that makes me want to throw up. but everyone including my parents just keep pestering me as if by sitting with them and undergoing my usual sessions of beratement would magically make my pain go away.
Hi Jessica I've just started the pacing thing (didn't know it had a name) and it's actually really helpful for myself 😀
I hope it's okay to ask, is there a certain format you use or did you make one up? I'm having trouble finding one online to use.
Jessica! You have no idea how helpful this video is to me. As lovely as the lovely people in my life can be, they simply do not understand the concept of chronic illness, so I’ve never came close to being taught this kind of coping techniques. This is beyond incredible for me, the tips in this video will not only help me, but they also opened a full range of things I now know to Google to get similar information! Thank you so much.
A good one for me was realising a task doesn’t have to be completed in one go. So shower . Hair wash has to wait for another day. Can’t always do both the same day. That’s ok. Laundry, sort the laundry. Getting it in the machine might have to wait till later. That’s ok too. You soon figure out which tasks have to be completed in one go, such as you can’t leave wet washing around for too long because it goes mouldy and makes more work. But you can chop veg for dinner and then cook it three hours later, then have a rest before you eat it. Then before you wash up (eat out the saucepan…..saves on plates) . Basically, break everything into small bits of activity and just do what you can.eventually the most important things get done.
18:30 I was actually watching this during a crash. I finally had enough friends to have an actual house party for my birthday, and it was actually everything I wanted. But now I am so sore and so I’m just doing plant care to keep moving while I wait to go to bed
This is invaluable. I cried during parts because it was sooo validating. I’ve been living in so much denial and also disassociation from what I’m feeling (very good at ignoring it/pushing it down), it makes a recovery plan tough.
Also, I’m a single mom with a kiddo who needs higher support than some and I have adhd. So…. It’s been SUCH a learning experience that I can’t do it all.
But I kind of broke myself, I think. I’ve been living my life in a way where I just push through and get done what needs to get done, no matter how tired I am.
And when I got sick, it didn’t work. I tried to exercise so so so many times before the PEM finally made me stop. I’d wait a little and then try again crash. The push crash cycle was devastating. When you mentioned lack of control, that’s 100% where I was.
But once you accept that you need to live life a different way, you can start embracing that. I found this validating, bath also extremely practical. So sharing a little bit, but mostly just wanted to say THANK YOU!
I have audhd cptsd and multiple physical disabilities that cause chronic pain. Pacing can be difficult when all you want is to do anything BUT sit down or stay in bed, because yes it is very boring. Podcasts and books are super helpful. I've found some funny ones.
This video came at the perfect time. My energy levels are at an all time low, even had to turn down seeing my best friend. I literally was thinking how much I wished there was a video about how to pace yourself and such when the notification popped up. Thank you Jessica!
This has helped me so much. I suffer from PTSD which comes with some physical limits. I am just happy to know that I am not crazy and I really do need that time to rest and do nothing.
Such a timely post! I'm finally getting around to not just forgiving myself for being exhausted, but realizing I don't need to forgive myself for it. Chronic pain is managed best by me managing my energy output. But it's so hard to say no sometimes. Or cancel plans. Or not meet a deadline I agreed to. It's embarrassing, especially since it wasn't that long ago that I had energy and was not chronically and invisibly ill. Thank you for this. I'm going back to bed now.
Jessica: "You are seen."
Me: Haha! Time to cry!
Edit: since you've had new hearing aids I've been hearing a slightly different voice. That surprised me as a hearing person
Edit 2: sitting up being effort is SUCH A MOOD
With ME/CFS it is especially important to practice pacing. Unfortunately, people with ME/CFS can have a long term worsening of symptoms if they overdue themselves especially if they don't recover adequately between crashes. I used to think I just had the ELCI, Fibromyalgia and that overdoing it would cause flares, but that I could recover to my pre-flare levels. I couldn't understand why my energy levels decreased more and more and I was progressively getting worse. Then I realized I had ME/CFS as well and that patients with ME/CFS don't always recover from over extending themselves. It is a incredibly distressing aspect to ME/CFS. One that even doctors haven't historically recognized especially in the UK (fraudulent PACE trial.) It doesn't help that the diagnosis of ME/CFS is often delayed for years for people that have it.
I've been really struggling with my fatigue lately. Especially with trying to date. Meeting new people and going on first dates is...incredibly exhausting
I have ankylosing spondylitis and always forget it causes fatigue. I've been barely able to stand up today and this was really good timing for this video. Thank you!
I've had to learn pacing after the past several years of chronic fatigue, pain, migraines and PTSD...I didn't know what it was called until today! I've learnt more from Jessica than any health care professional I've seen. As someone who was previously always on the go (any other Capricorns here?), I still deal with guilt and frustration over not being able to do as much as I used to (I used to work 12-16 hours a day for a start), so this is a wonderful reminder that pacing is absolutely necessary. Love you Jessica and your channel. 💜💛💚💙
Fellow Capricorn post burnout AI spoonie here.
Life is so much better with pacing
"Going flat" is a frequent comment in my life.
I suffer from chronic migraines. Some days are good, some are bad. Stress and weather/pressure change are my major triggers. I am blessed to be working in a smaller school where they know me and care about my well-being. I am only part-time but I am working towards full-time.
Thank you so much for making this! And for mentioning the struggle with boredom. I went from being a fairly active, creative, spontaneous person to being someone who spends most days in front of a screen just to keep the boredom from exhausting me even further.
After years I think I have the ”sense” of pacing down, as in, I can feel what my energy levels are for the day and kind of predict how much I can do without exhausting myself. But about every two months, I start doubting that I actually need to limit myself that much, and try to do just a little bit more, then when I start getting seriously exhausted after three to four days, I remember why I usually do so little. It’s very very frustrating, sad and scary, and hard to explain to people who only ever see me on my good days or when I have saved up energy to visit, or when I’m burning my reserves to be able to see them.
I'm not chronically ill but I was burnt out a year ago and (in combination with adhd and other mental health issues) I therefore have a more restricted energy bank than I used to have. So this video was definitely helpful! ❤️
This is a couple of months late, but thank you for making this video. As someone living with schizophrenia it's hard to remember to pace myself. Often it's difficult doing basic things like getting out of bed, eating, leaving the house for even a few minutes. And more complicated things like spending time with friends (or even just messaging them) , cleaning/chores, reading books, even just picking a youtube video to watch are downright impossible most days. Often I have to weigh the tasks I need to get done against my wants, and tap out on spoons before I've even finished the "needs" list. So, thank you for validating my experiences with this and making me feel like there's something I might actually be able to do about it. I really needed that.
Thank you for this video. I'm having a rough time right now and it was like sitting down with a friend to talk about caring for myself.
I'm glad I'm not the only person who finds sitting at a table, eating, talking, and other mundane tasks absolutely exhausting😴 Also love the outfit today. You look stunning as always!
The giddy joy of seeing a slim chance of doing anything, and you bolt for the opportunity of not being stuck AND getting stuff done or going a bit bonkers is VERY ALLURING!!!
I think the hardest aspect of pacing for me is how it involves other people. When I could barely get of the couch is was so hard to ask my family if they could make me lunch (being walking to the fridge, putting cheese on bread, and walking back to the fridge) as it felt like such an easy thing I should be able to do even when I couldn’t. Or to ask if I could eat dinner on the couch as that didn’t require me to sit as upright
I hope that it is easier for you to ask for help now. And I hope your family understands that you need help sometimes.
Hi from Denmark! Brain injury is also under this category 😅 We had a course on fatigue management, but it still takes so long before you really accept and live by it 😉😝 Love your videos 💝💝
I was thinking the same thing! Also I think Jessica mentioning fatigue being the second most disabling thing is brain injury not the first?
This was brilliant and amazingly helpful. I am almost 40 now, have been dealing with CFS triggered by Epstein Bar Virus when I was 15, plus insane allergies, asthma and some other mental disorder stuff (in the process of being diagnosed). I have spent years trying to live up to the expectations of people who not only don't understand the conditions I deal with but often completely disregard their validity. I am only now starting to forgive myself for being ill (which sound crazy and probably is) and allow myself the leeway I need to build a life that works for me.
You just changed my life. My chronic fatigue is really getting to me and doctors don't believe me. This is something I can do on my own.
It's so refreshing to hear someone else talk about the need to ration energy. I've tried explaining to healthy friends why I can't "just stay up late one night" or why sometimes it's either wash dishes OR do a load of laundry. Or (when your disability isn't outwardly apparent) why today you can do X amount of work but only Y amount another day. This is very validating. Thank you.
Thankyou so much for acknowledging Long Covid in this video 💕
So many people now at 2+ years and yet even within the medical community our symptoms are often being dismissed and the condition trivialised.
the part about repetition speaks to me SO MUCH
ive been playing solitaire on my phone almost every day, sometimes all day, for the past 6 months.
I have quite the list of chronic illnesses and wasn’t properly diagnosed until I was 27. Pacing is something I’ve never mastered and struggle with greatly. Thank you for your content.
Jessica in this house we would love it if some of your videos covered your love of vintage , vintage design , where you shop vintage , how your interest started , vintage living , the story behind some of your dresses and vintage furniture or pieces of jewellery - you are bewitching to watch and also we would love you to share this fabulous side of Jessica 😎
You are such a delight to listen to/watch even while speaking out about important issues. So glad I found your channel (years ago) while trying to gather ideas for period clothes & hairstyles. Had no idea I'd also be dealing with chronic illness back then but here we are 🤷🏼
Thank you so much. I have long covid and have to write a list of everything I have to do in a day and what I can put off if I need to. A lot of people have told me I need to work out but I already go to the gym about twice a week to try to get my lungs working and my strength back. I have to be on a good day energy/brain fog wise for my health and safety (even basic equipment can become very dangerous with brain fog) and even then, twenty minutes of exercise wipes me out for hours. My uni isn't offering any help because of the lack of research so I'm having to email my teachers individually and rely on my girlfriend for more than I'd like to.
I live with chronic pain (specifically migraines) and never... even got a diagnosis. I still don't technically have one. One day, about two or three years after I finally had a doctor listen to me and got some proper pain medication, I got a letter in the mail for people with "severe chronic migraines" and the moment I realized that I do, in fact, have chronic pain, I felt so validated and relieved that I could've cried. It's gotten so much more manageble since I found that out, and even more so when I feel like there's actually people that understand.
After years of being a stubborn idiot and acting like “God I’m exhausted, can’t think and in pain but I’ve got a ton of schoolwork to do and those tasks for my job, I’ll blast through them and I’ll be alright, right?” I had a horrific energy crash, have been more or less housebound for the last week and a half now, and with help/evidence from my doctor, actually reduced my hours at work and at college and am now researching ways to be more mindful of my energy levels (I don’t know what my condition is yet as I’m still waiting on that neurology appointment - thanks NHS! 😒). I love the colouring in idea and will do that. Your videos have really helped me with that Jessica - thanks so much!
Hi, I'm Angela. I'm from America. I love your channel especially the baking. I have chronic pain all over my body and I also have congestive heart failure all at 42. People always talk about how young I am. The doctors don't know what caused my heart condition. I have fine blood pressure and good cholesterol. They say I must have gotten a virus. Anyway, I often blame myself, think I'm just being lazy, or think that I need to be out of bed everyday. This video is a life saver. It made me feel less alone and less lazy. A lot of your videos help me. Thank you so very much.
Thank you for sharing. My Nanny was from the north and I wish I was in the UK ...because here in America we push ourselves so hard the harder we push ourselves the 'better' we are. Thank God that way of thinking is starting to die out.
This is amazingly validating. Thank you. I have been dealing with Covid effects for months and feel guilty for how much it impairs my life. I haven't called it a chronic illness bc theoretically it's temporary.
I also have Long Covid on top of pre-existing energy issues. Way back in March, April and May 2020, in online support groups, people with ME were wonderfully using spoons to come in and give advice on pacing and how to live with fatigue. I truly hope that a positive outcome of covid is more understanding of energy limiting condition.
Thank you so much for posting this - I am about to start a very intense course of treatment that is likely to leave me incredibly fatigued, going to use some of these tips!
My ELCI power move is going out with friends and falling asleep in my seat. I love how normal this has become, and I can still sort of hear what is happening and feel involved.
Yup. I spent most of a Levellers gig at a festival sitting on the ground, guarded by my girlfriend's bike wheel, with my body fast asleep and my mind loving the music.
Thank you again, Jessica. As a woman who's nearing her 72nd birthday and in overall good health; age brings it's own challenges, and my energy level is one of them. Never having driven, I walk everywhere, and do aerobic exercise. Once or twice a month I am just exhausted, and allow myself an "in bed" day as needed. I plan for chores, but feel entitled to move one or more if I run out of energy, and reward myself with a "crafts" day occasionally, to indulge in purely creative expression, as that's a big part of life for me. Learning to cope with reduced balance, visual acuity, stamina and range of motion is challenging, but no more than many folks live with from childhood. It's all about being grateful for what you can do and making preparations for those times when you can't do much. You give clear expression to so many issues. Thanks!
Filling up sheets with different aesthetically pleasing colors sounds great and fills my journal loving self with joy, but ironically, that takes up energy too. 😂 I do like to journal when I can though, and sometimes entries are just like "I AM TIRED" and "I WANT MORE ENERGY" hahah.
I've also been working from home since I learned it was a thing (about 10 years ago), and I always tell people... I need a bed in my office. I need to be able to lie down as I please. Thank God for the work from home setup!
Since my wife died last month, I've been pushing myself. I have fibro, but for the first 4 days, my sister pushed me. I did take a break after she left, but only for a couple of days. Now, however, I am more pacing myself. I don't do more than an hour at a time, generally less, but if I do less, I'll try to get back to what I was doing so I can finish it in a day. This is how I've managed to clean all the counter tops in my kitchen. I've also started on going through my pantries, yeah, I have 2. I'm going through the one I haven't gone through since we set it up in 2018. I've taken 2 loads of expired food out of it. The wife would want something, get it and then only eat a few cans of it and... well... it expired. The deal is, however, with my food allergies, I couldn't help her eat them - I've a serious corn protein allergy.
I’m sorry for your loss 🤍
@@k74728 thanks... it's been hard
Thank you so much for this video, Jessica! My condition is far less debilitating than yours, but I do have chronic migraines. They seem to be most often triggered simply by getting too tired (although heavy intake of chocolate is certainly another notable trigger), and I just don't seem to have as much energy as some people around me, so my migraines are fairly frequent. I really appreciate this information on pacing and being straightforward about what you can and cannot do. I turned down an extra job today because I realized it would overwhelm my energy, and this video feels like the validation I needed for that choice.
As someone with a hot stew of issues, rampant adult ADHD, Primary Immunodeficiency, PTSD, migraines, and an unspecified neurological pain condition, it’s so nice to be seen. The amount of doctors that want to fob my issues on something else for a different doctor is legendary. Just cooking dinner exhaust me. As a single mom, all the financial responsibility falls on me. Everyone talks about how easy it is to just do “X”, and to me it’s scaling Mt. Everest.
I'm new to disability -- dealing with chronic pain and fatigue from traumatic injuries, your channel among others like it are helping me feel seen and validated. thank you.
I've been watching this channel on and off for a couple years and just recently found out I myself am chronically ill, maybe that's why I found this channel relatable
Thank you for the video ❤ I've been struggling a lot with my chronic illnesses, and they've gotten worse since I got Covid in 2020. It's scary to feel like you're slowly losing who you used to be, but your videos are very uplifting and helpful. 💗
Omg, that example of eating at the diner table. Perfect example. I cut up everything right at the beginning, so I can hold my fork in my right hand and support my head/upper body with my left hand. If I'm home I can rest my body forward on my legs that get pulled up to chest level. Makes eating so much more enjoyable.
I never did the "recording" it part of it, but I did learn which things tire me, and it was a lot harder to realize that I've got not only limited physical energy, but also mental & emotional energy to mind. It was a gamechanger to be able to tell myself "no, you're not going to have this emotional convo right now, it can wait until tomorrow". Or "no, all these appointments and calls will have to be tomorrow when you can handle them." It really upped my quality of life, honestly. Thank you for the more calculating side to it! I'll go color a chart and see what comes out. Love you, Jess ♥
My partner was diagnosed with long covid last week so I'm frantically rewatching Jessica videos 😬
I have a number of interrelated and inter-conflicting conditions. The biggest impact "pacing" has on my life is preparing for an important event. I am SO CAREFUL for the days or week before something I want or need to be at. What I eat, how much I clean, how much I sleep, how much I shower. I've learned a lot and have gotten pretty good at it, but boy is it exhausting trying to not be exhausted at exactly the right moment!
I'm so glad u brought up fibromyalgia. It took me 5 years to get a diagnosis. Some doctors in Canada don't think it's real and it's all in your head.
Once upon a time I would have said 'I don't know why it took me so long to find your videos" except the perfect reason as to why IS that I have ME/CFS and it means that I simply don't typically have the energy to FIND things that may actually be helpful to me. This was so incredibly helpful and affirming, THANK YOU.
Always love the chronic illness tips. I often find myself coming back to these types of videos when I'm struggling for your practicality and positivity. Thank you, Jessica!