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2024 - Taglist Disability Support
by CaringBrit
Last post
Monday
...See more This thread controls an auto-updating tag list. To see the current list, go to Disability Support [https://rarelycharlie.github.io/taglist?3ec913e645043cdcd31f94a3324ab37c]. To add yourself to this tag list, press the Post to Thread button above and write the exact words Please add me. To remove yourself from this tag list, press the Post to Thread button above and write the exact words, Please remove me. This Taglist will be used for the Daily Check-Ins could even be used for Events etc. What happens after you join the tag list? You will notice an icon for a little bell up in the right corner of your screen. there is a letter icon, then the bell, then a jar, and then the icon for your account. That bell will tell you about your notifications. When we tag you, it will show up as a number on the bell. Click on the bell and a drop-down menu will appear and it will show you the link to the post where we tagged you. Current taglist as at April 22 2024 127 @777Bre777 @adaptableOcean4193 @adaptablePomegranate1587 @adequatelyInadequate @adventurousBranch3786 @AffyAvo @agreeableTurtle1021 @AguaNector6700 @amusingTalker1267 @Aqua1494 @Arsalanahmed @Ashleylovescats @AttentiveEar @audienta @AutiBoy @Averayne93 @azuladragon34 @BacktotheTrail @BeyondTheInvisible @BlindGrapefruit @blissfulTouch29 @Bndonovan02 @bouncyBreeze44 @bouncyVoice4149 @Breezy2013 @cal1860 @CaringBrit @CheeryPotato @CheerySandi @ChildGoddessFlute @Chloe1644 @cinnamoncocoa @CocoaCassie @Colorfulcatsofhope @considerateBunny7436 @Countrygirl095 @crystallizedrequiem @Daisy7cups @DichotomousDetia @disneymoonlight @Disneywoman @DoISayIt @DonaldK @DylanMark @Edobre399 @Emiliako @emotionalTalker2260 @enthusiasticOwl866 @enthusiasticTortoise6681 @fairmindedWater1140 @Fireskye13 @FrenchMarbles @friendlyEars8792 @goldenSpruce1512 @IcedCoffee211109 @IndigoWhisper @InfiniteThoughts2k19 @Jamesjones10123 @Jewels012222 @jovialButterfly6752 @JoyfulUnicorn @JoyIntoDarkness @K87 @kenzixo @killaj0ule @Kittibear @KuhnDisabled101 @kwheelz @lightTriangle7748 @LikeABirdWithoutWings @lovelycoacoa @lovelySun2900 @LoveMyRotty @magnifiedfaith @ManinblacK @MartianGirl347 @MeaningfulSilence @Meowsicle @MistyMagic @mnhtx3 @modestHickory2783 @modestOcean1286 @moosprbrk @MyNameIsNicole @NaomiR @NevaehRose @NotKhan2 @NovaIsNB @OneErased @PerfectHarmony10 @philosophicalAcai7803 @pinkbunnywabbit @Pixiechu @placidMoth @Plantsaremybestfriends @Poppia @PotFullOfSky2020 @rainbowVibes @Raysofsunshineandrainbow2005 @redGrapes1822 @Redheadmadeofglitter94 @repen13 @reservedCat9143 @RiggsMortis @sabeyesofblue3535 @Seachele @SmolBurrahobbit12 @SparklyCat @specialPurple1582 @StarsOrchidsOwls @stuffiessytem @sunshinegiraffe123 @tearstruck @theboymoana @TimidBear @TomatoEmi @turquoiseHemlock900 @u2canwin @wahmbrenda @Walker7957 @WeedyGarden @wishfulWillow6962 @WishUponAStar968 @wonderfulRainbow817 @xandia @Xisle @Zed786
Boom! or Bust! All about pacing . . .
by MistyMagic
Last post
Friday
...See more This post will open our new series on  ⚡P A I N !💥 All About. . . Boom!⬆️ Bust 🔽 and Pacing 🟰 The concept of "boom-bust" and “pacing” particularly in the context of disabilities, refers to a pattern of energy expenditure characterized by alternating periods of high activity or productivity ("boom") and subsequent periods of low energy, exhaustion, or rest ("bust"). This approach is often employed by individuals with chronic illnesses, disabilities, or conditions that cause fluctuations in energy levels, such as chronic fatigue syndrome, fibromyalgia, or certain types of disabilities affecting energy levels. How often have you started out at the beginning of an activity or project full of energy (Boom) racing along only to begin feeling tired, but still you carry on because you don’t want to stop, or you just want to finish what you are doing, and then the next day you are so very tired and in pain or exhausted and cannot do anything (Busted) and the recovery takes a few days or even longer? Here's a breakdown of the “boom-bust” and “pacing” approach and its implications for individuals with disabilities: Understanding Energy Levels: Boom-bust pacing recognizes that individuals with disabilities often have limited energy reserves, which can fluctuate from day to day or even within the same day. It emphasizes the importance of being attuned to one's own energy levels and learning to manage them effectively. Managing Activities: Rather than trying to maintain a constant level of activity throughout the day, boom-bust pacing involves identifying periods of higher energy (boom) and using them for more demanding tasks or activities, while conserving energy during periods of lower energy (bust) through rest or less demanding activities. Prioritizing Tasks: Individuals practicing boom-bust pacing often prioritize tasks based on their energy levels. Important or demanding tasks are tackled during periods of higher energy, while less critical tasks may be deferred to periods of lower energy. Ask yourself these questions and think about your answers, then jot them down so that you have a list of your priorities, you can add them in your reply to this post. * What is important? - read all the points below before deciding! * What MUST I do? * What do I want to do? * What do others want me to do? * What am I expected to do? (may include deadlines) * What can I do? Avoiding Overexertion: By pacing activities and balancing periods of activity with rest, individuals can reduce the risk of overexertion, which can exacerbate symptoms or lead to "crashes" where energy levels plummet (bust), sometimes for an extended period as the recovery needed after a “boom” can be extensive and disproportionate to the gain. Examples:  You may want to finish weeding a flower border and do it all in one afternoon, the flower border looks great but you end up exhausted in bed for 3 days. If you had spread it over 2 afternoons then you would not end up exhausted. You have an important exam next week, so you stay up all night studying. The next day you cannot get out of bed because of the body aches and exhaustion. If you had split the studying into short periods then you would not have crashed so badly and could have revised for a few hours every day.  Remember to STOP BEFORE the pain is too bad or STOP BEFORE you feel exhausted, that way the rebound to recovery is faster, and smoother, and repeatable. Take a look at https://www.pomodorotechnique.com/ [https://www.pomodorotechnique.com/]  splitting studying or any task into shorter periods. The original technique has six steps: * Decide on the task to be done. * Set the Pomodoro timer (typically for 25 minutes). * Work on the task. * End work when the timer rings and take a short break (typically 5–10 minutes). * Go back to Step 2 and repeat until you complete four pomodoros. * After four pomodoros are done, take a long break (typically 20 to 30 minutes) instead of a short break. Once the long break is finished, return to step 2. ( a pomodoro is an interval of work time). Also the Spoon Theory [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/SpooniesandDropitlikeitsPOTSshirts_20186/] 🥄🥄🥄🥄🥄🥄 and Here [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/BoomorBustAllaboutpacing_327034/] Flexibility and Adaptability: Boom-bust pacing requires flexibility and adaptability, as energy levels can vary unpredictably. It's important for individuals to listen to their bodies, adjust their plans as needed, and never feel guilty for needing to rest or modify their activities. Communication and Advocacy: In work or social settings, it's essential for individuals practicing boom-bust pacing to communicate their needs effectively and advocate for accommodations or adjustments when necessary. This might involve explaining their pacing approach to employers, colleagues, or friends and asking for understanding and support. Self-Care and Wellness: Boom-bust pacing is ultimately about self-care and managing one's health effectively. It involves not only managing physical energy but also attending to emotional and mental well-being, recognizing the importance of rest, relaxation, and activities that bring satisfaction, happiness, and joy. Overall, boom-bust pacing can be a valuable strategy for anyone, but more so for individuals with disabilities to manage their energy levels and navigate daily life more effectively. By learning to listen to their bodies, prioritize tasks, balance activity with rest ie: pacing themselves, individuals can optimize their functioning and improve their quality of life despite the challenges posed by their disabilities. Chronic Pain Resources  Here Living with Chronic pain Here [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/AFewTipsonHowToLearnToLiveWithPainbyDrCherylAMacDonald_23694/] Q [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/AFewTipsonHowToLearnToLiveWithPainbyDrCherylAMacDonald_23694/]uestions to ask yourself, please reply below! * Do you recognize yourself as a ‘boom-bust’ or ‘pacing’ individual? * Have you ever used this method? If you haven’t will you try it in the future? If not why not? If you do does it help? * Can you remember one time when you carried on when you should have stopped and rested? What happened? * Do you have tips to share with us, please do! Consider joining the Disability Community Support Team. More information Here [https://www.7cups.com/forum/disabilities/CommunitySpace_227/JoinTheDisabilitySupportCommunityTeam_325009/] Tag list @777Bre777 @adaptableOcean4193 @adaptablePomegranate1587 @adequatelyInadequate @adventurousBranch3786 @AffyAvo @agreeableTurtle1021 @AguaNector6700 @amusingTalker1267 @Aqua1494 @Arsalanahmed @Ashleylovescats @AttentiveEar @audienta @AutiBoy @Averayne93 @azuladragon34 @BacktotheTrail @BeyondTheInvisible @BlindGrapefruit @blissfulTouch29 @Bndonovan02 @bouncyBreeze44 @bouncyVoice4149 @Breezy2013 @CaringBrit @CheeryPotato @CheerySandi @ChildGoddessFlute @Chloe1644 @cinnamoncocoa @CocoaCassie @Colorfulcatsofhope @considerateBunny7436 @Countrygirl095 @crystallizedrequiem @Daisy7cups @DichotomousDetia @disneymoonlight @Disneywoman @DoISayIt @DonaldK @DylanMark @Edobre399 @Emiliako @emotionalTalker2260 @enthusiasticOwl866 @enthusiasticTortoise6681 @fairmindedWater1140 @Fireskye13 @FrenchMarbles @friendlyEars8792 @goldenSpruce1512 @IcedCoffee211109 @IndigoWhisper @InfiniteThoughts2k19 @Jamesjones10123 @Jewels012222 @jovialButterfly6752 @JoyfulUnicorn @JoyIntoDarkness @K87 @kenzixo @killaj0ule @Kittibear @KuhnDisabled101 @kwheelz @lightTriangle7748 @LikeABirdWithoutWings @lovelycoacoa @lovelySun2900 @LoveMyRotty @magnifiedfaith @ManinblacK @MartianGirl347 @MeaningfulSilence @Meowsicle @MistyMagic @mnhtx3 @modestHickory2783 @modestOcean1286 @moosprbrk @MyNameIsNicole @NaomiR @NevaehRose @NotKhan2 @NovaIsNB @OneErased @PerfectHarmony10 @philosophicalAcai7803 @pinkbunnywabbit @Pixiechu @placidMoth @Plantsaremybestfriends @Poppia @PotFullOfSky2020 @rainbowVibes @Raysofsunshineandrainbow2005 @redGrapes1822 @Redheadmadeofglitter94 @repen13 @reservedCat9143 @RiggsMortis @sabeyesofblue3535 @Seachele @SmolBurrahobbit12 @SparklyCat @specialPurple1582 @StarsOrchidsOwls @stuffiessytem @sunshinegiraffe123 @tearstruck @theboymoana @TimidBear @TomatoEmi @turquoiseHemlock900 @u2canwin @wahmbrenda @Walker7957 @WeedyGarden @wishfulWillow6962 @WishUponAStar968 @wonderfulRainbow817 @xandia @Xisle @Zed786 Add or Remove yourself in this thread HERE [https://www.7cups.com/forum/disabilities/WeeklyCheckin_1053/2024TaglistDisabilitySupport_202464/]
Articles & Resources Alphabetic List
by AffyAvo
Last post
April 7th
...See more This post has an alphabetical list of the links in this forum section. Currently a work in Progress Generalized Topics Boom, Bust and all about Pacing - 1 [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/BoomorBustAllaboutpacing_327034/?post=3529503] Cardiologist Appt - 1  [https://www.7cups.com/forum/disabilities/General_2442/Whatsacardiologistappointmentgoingtoentail_326846/] Chronic Illness - 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/ChronicIllnessSupport_18295/]   2 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/WhattheChronicallyIllDONTWanttoHearpart2ByToniBernhard_35925/]   3 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/ProfessionalPatient_36061/]   4 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/YouDontLookSickLivingWellwithInvisibleChronicIllness_30413/] Disabilities - 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/Disabilityblog_27750/]   2 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/fromtheheart_41157/] Government Disability Support - US 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/SSISSDprocess_23492/]   2 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/achievingabetterlifeexpierienceABLEaccount_31760/] Hotlines & Resources - US 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/ResourcesUS_11205/] Pain - 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/ChronicPainResources_19331/]   2 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/AFewTipsonHowToLearnToLiveWithPainbyDrCherylAMacDonald_23694/]   3 [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/BoomorBustAllaboutpacing_327034/] Spoon Theory - 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/SpooniesandDropitlikeitsPOTSshirts_20186/]  2 [https://www.7cups.com/forum/disabilities/ChronicConditionsSupport_710/Newadditiontothespoontheory_300739/] Specific Topics Anencephaly - 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/RaisingAwarenessforAnencephaly_6978/] Beta Thalassemia - 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/IhaveBetaThalassemiaMajorAMA_2908/] Cerebral Palsy - 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/Inspiringpalsystory_5517/] 2 [https://www.7cups.com/forum/disabilities/PainSupport_1057/FromPaintoStrengthACerebralPalsySurvivalGuide_324996/] CFS Chronic Fatigue - 1 [https://www.7cups.com/forum/disabilities/ChronicConditionsSupport_710/ChronicFatigueSyndrome_273911/] Complex Regional Pain Syndrome - 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/ComplexRegionalPainSyndromeCRPS_37080/] Colorblindness - 1 [https://www.7cups.com/forum/disabilities/General_2442/Hellomycolorblindpals_326601/] Degenerative Disc Disease - 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/WhatIsDegenerativeDiscDisease_35834/] Epilepsy - 1 [https://www.7cups.com/forum/disabilities/GetSupport_349/EpilepsySupport_199835/] Hereditary Angioedema  (HAE)- 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/HAEandMisconceptions_34671/]     2 [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/HAEAwarenessDay2024_327339/] Irritable Bowel Syndrome - 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/WhatMyTurbulentBowelTaughtMe_35489/] Postural Orthostatic Tachycardia Syndrome (POTS) - 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/SpooniesandDropitlikeitsPOTSshirts_20186/] Multiple Sclerosis - 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/AMAMultipleSclerosis_23704/] Rheumatoid Arthritis - 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/WhatMakesMeFeelLikeanOutsiderasaPersonWithRheumatoidArthritis_35475/] Smoking & Tobacco - 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/HAEandMisconceptions_34671/] Tourettes - 1 [https://www.7cups.com/forum/disabilities/ChronicConditionsSupport_710/AnyoneHaveTourettesorKnowSomeoneWhoHasIt_324670/] currently being updated by AffyAvo & MistyMagic April 2024 Last updated April 2024 - pages 7 & 6 complete
Living With 'Meniere's Disease'
by MistyMagic
Last post
5 minutes ago
...See more Interview Diaries Hello everyone, this is an interview about ‘Living with Meniere’s Disease’ as part of our Disability Diaries series. Read more about them here  [https://docs.google.com/forms/d/e/1FAIpQLSccW4qp5h5tKSX7MgI3-sGjNAG6fbUql-rN2TN4o8RoJLfSyw/viewform]Catch up with other Interviews Here [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/InterviewSeriesMasterList_292976/] in our Master List! This is an interview with @SlowDecline48 about his life and how he lives with Meniere’s disease. Ménière's disease (MD) is a disease of the inner ear that is characterized by potentially severe and incapacitating episodes of vertigo, tinnitus, hearing loss, and a feeling of fullness in the ear. Typically, only one ear is affected initially, but over time, both ears may become involved. Episodes generally last from 20 minutes to a few hour or sometimes days. The time between episodes varies. The hearing loss and ringing in the ears can become constant over time. Thank you for taking the time to answer our questions so we may better learn and understand what it is like to live with Meniere’s Disease (MD) every day. It is our pleasure to find out more. * Can you tell us about how and when you were diagnosed with Meniere’s?  My diagnosis was in late March, 2017. My general physician sent me to an ENT doc, who did a few tests including eye tracking (of his finger). But I did some online research before the appointment; by the time the ENT doc told me I had Meniere’s, I’d already figured it out. * How has Meniere’s affected your life since then? Do you find your hobbies have changed? It has greatly reduced the quality of my life (which wasn’t all peaches & cream to begin with). I’ve been stuck inside my apartment for as much as four days in a row, or slightly more. My housekeeping is slim to nonexistent most of the time, though I don’t leave food out. My art & crafts–a way of life, not a mere hobby–have less output now. A mildly ironic twist: in adapting to my condition I finally learned how to use watercolor brushes–until the onset of Meniere’s I could do many things but I couldn’t paint at all. I cannot maintain the intense focus for hours at a time that I used to have, so in all other ways my art is nothing like it once was. I’ve learned the hard way not to attempt any complex task or one requiring significant short-term memory during a flareup, because when I try, I make dumb mistakes. That’s right: Meniere’s can make you stupid. It’s kinda like having superpowers–in reverse. I don’t have much of a social life…am trying to change that now, but it’s difficult. I haven’t driven a car since mid-2020 when the last car I had started to die…I could probably drive okay now but I’ve had sudden flareups when I was behind the wheel. It was truly scary. Only by luck & my keeping cool & focusing on the road did I avoid hitting anything or anyone. Oddly, I have a better sense of balance on my bicycle than I do on my own feet. * What are the worst parts of having Meniere’s? That’s a good question… Physically it’s the head pain & vertigo. When it flares up, well…imagine getting coldcocked by Mike Tyson, or Manny Pacquiao. The pain doesn’t always come that quickly but it can, & sometimes does, get that intense. When that happens I have to stop whatever I’m doing & sit down, or lie down. Otherwise, the worst aspect is the imposed limitations. Like most people I like salty foods, but I can’t eat any…gotta avoid pickles, anything pickled in brine. As I said, I don’t have much of a social life. My romantic life is nonexistent (Meniere’s is not the only reason, though). There are so many things I either could do or used to do, that I can’t do anymore. It’s depressing, truly. * Can you share with us ways that make you feel better or that improve your life? It’s not that I feel “better” so much as cope with it until the flare is finished & my ears/head calm down. Long before my diagnosis I tried to drink enough water every day; these days I’m more serious about it than ever. I never consume less than 3/4ths of a gallon, & more if I have energy & am physically active &/or spend time outdoors in the summer. Dehydration aggravates Meniere’s & is bad for your health in general. Aside from that, if the flareup is moderate then even if I can’t focus enough to do complex tasks, I might watch stuff on YouTube or listen to music…sometimes I can still read a little. If you have Meniere’s or any similar ailment then buy a few pairs of earbuds: one for your phone, one for your laptop, extras in case you lose the pair you normally use. When you’re having an attack, stick ‘em in your ears & crank up the sound. Almost any kind of music will do, but I prefer ambient stuff. Dark ambient works when I’m in the mood for it. Anything that’s soothing & lasts an hour or more should work great. Classical guitar does not work because it’s too quiet to compete with the ringing in my ears. * How can we help to support someone with Meniere’s during an attack?  I don’t see how that’s possible. When it flares up it flares up…there isn’t much that can be done. * From reading the information it seems some sufferers may be facing hearing loss, does that affect you? Yes. I have a tiny bit of hearing loss in my right ear. So far I can still hear everything I need to, but that will change as time passes. If I had my way, all the parts of my inner ears would’ve been removed right after my diagnosis. That would mean total deafness, of course, but if that means the head pain & vertigo go away then I’ll gladly agree to the rest of my life being a silent movie. * What else would you like to share with us about your life with Meniere’s? It stinks, like week-old roadkill. Useful Resources for more information:- https://www.menieres.org.uk/information-and-support [https://www.menieres.org.uk/information-and-support]  https://www.american-hearing.org/disease/menieres-disease/ [https://www.american-hearing.org/disease/menieres-disease/] https://menieresresourcesinc.org/ [https://menieresresourcesinc.org/]  https://www.mindovermenieres.com/menieres-disease-triggers/ [https://www.mindovermenieres.com/menieres-disease-triggers/]  Thank you for answering our questions, it has been really interesting and a pleasure to find out more about living with Meniere’s. For anyone interested in being a part of this, there is a form https://forms.gle/MZ1df1FWtJYHQvuy9 [https://forms.gle/MZ1df1FWtJYHQvuy9]  to express your interest in being interviewed as well as volunteering to interview someone else. Catch up with other Interviews Here [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/InterviewSeriesMasterList_292976/] in our Master List! Want to join the Disability Support Community Team? Find out more Here [https://www.7cups.com/forum/disabilities/CommunitySpace_227/JoinTheDisabilitySupportCommunityTeam_325009/] Add or Remove yourself from the taglist here @777Bre777 @adaptableOcean4193 @adaptablePomegranate1587 @adequatelyInadequate @adventurousBranch3786 @AffyAvo @agreeableTurtle1021 @AguaNector6700 @amusingTalker1267 @Aqua1494 @Arsalanahmed @Ashleylovescats @AttentiveEar @audienta @AutiBoy @Averayne93 @azuladragon34 @BacktotheTrail @BeyondTheInvisible @BlindGrapefruit @blissfulTouch29 @Bndonovan02 @bouncyBreeze44 @bouncyVoice4149 @Breezy2013 @cal1860 @CaringBrit @CheeryPotato @CheerySandi @ChildGoddessFlute @Chloe1644 @cinnamoncocoa @CocoaCassie @Colorfulcatsofhope @considerateBunny7436 @Countrygirl095 @crystallizedrequiem @Daisy7cups @DichotomousDetia @disneymoonlight @Disneywoman @DoISayIt @DonaldK @DylanMark @Edobre399 @Emiliako @emotionalTalker2260 @enthusiasticOwl866 @enthusiasticTortoise6681 @fairmindedWater1140 @Fireskye13 @FrenchMarbles @friendlyEars8792 @goldenSpruce1512 @IcedCoffee211109 @IndigoWhisper @InfiniteThoughts2k19 @Jamesjones10123 @Jewels012222 @jovialButterfly6752 @JoyfulUnicorn @JoyIntoDarkness @K87 @kenzixo @killaj0ule @Kittibear @KuhnDisabled101 @kwheelz @lightTriangle7748 @LikeABirdWithoutWings @lovelycoacoa @lovelySun2900 @LoveMyRotty @magnifiedfaith @ManinblacK @MartianGirl347 @MeaningfulSilence @Meowsicle @MistyMagic @mnhtx3 @modestHickory2783 @modestOcean1286 @moosprbrk @MyNameIsNicole @NaomiR @NevaehRose @NotKhan2 @NovaIsNB @OneErased @PerfectHarmony10 @philosophicalAcai7803 @pinkbunnywabbit @Pixiechu @placidMoth @Plantsaremybestfriends @Poppia @PotFullOfSky2020 @rainbowVibes @Raysofsunshineandrainbow2005 @redGrapes1822 @Redheadmadeofglitter94 @repen13 @reservedCat9143 @RiggsMortis @sabeyesofblue3535 @Seachele @SmolBurrahobbit12 @SparklyCat @specialPurple1582 @StarsOrchidsOwls @stuffiessytem @sunshinegiraffe123 @tearstruck @theboymoana @TimidBear @TomatoEmi @turquoiseHemlock900 @u2canwin @wahmbrenda @Walker7957 @WeedyGarden @wishfulWillow6962 @WishUponAStar968 @wonderfulRainbow817 @xandia @Xisle @Zed786
PoTS and Me: An Interview with @wonderfulRainbow817
by FrenchMarbles
Last post
13 hours ago
...See more Hello, thank you for taking the time with me to explore the topic of Postural Tachycardia Syndrome (PoTS). Today I interview @wonderfulrainbow817, who is one of our amazing listeners/internship mentors/forum supporter/listener coach among many other roles. I do want to apologise for the delay with this interview, but tadaaaaah, here it is¯\_(ツ)_/¯ =-=-=-=-=-=- Question (1): To somebody who has never heard of this condition before, what is PoTS? Answer: POTS is Postural Orthostatic Tachycardia Syndrome. To put it simply it means there is a change in blood pressure/heart rate when changing orthostatic levels (i.e. laying to sitting, sitting to standing, or walking up/down a hill) Question (2): Did you know about PoTS even before you got the diagnosis? Answer: I did know about POTS before I got diagnosed. I was at physical therapy for a concussion and they noticed I’d pass out when I had my head turned certain ways. I described all my symptoms and she said I think you have POTS and need a tilt table test. It took the doctors 2-3 years to agree to run the test unfortunately because it would have saved a lot of time. Question (3): How has living with PoTS affected your day to day activities? Answer: It has debilitated my day to day activities from getting out of bed to laying down at night. I have to lay with my legs over the side of the bed for 5 minutes before I sit up so my blood flow returns to normal. Then I sit up and drink a glass of water before standing up. If I want to do laundry or shower I have to drink more water as heat wears me down since my body doesn’t regulate it. If I have plans to go out with friends sometimes I have to say no last minute because I can be fine one minute and the next I am passed out on the floor. When I pass out it wipes everything out of me so I have to rest for a while afterwards. Question (4): What adaptations have you had to make with your life living with PoTS? Answer: The biggest adaptation has been my diet. I have had to cut out a lot of carbs and eat smaller, frequent meals. 2-3 of my meals are equal to 0.75 of an average person’s meal, so by the end of the day, I am eating 8-10 different times. My diet is mainly paleo - gluten-free, also dairy-free (which doesn’t mean I don’t like to splurge on chocolate cake and vanilla ice cream sometimes :)). Caffeine and alcohol are a huge no-no for a lot of people with POTS. One ounce of chocolate or one sip of alcohol/wine can make me nauseous all day and leave me sick the next day. In terms of school and going out with friends I have adaptations there. If I need to miss class due to illness I can as long as I tune in virtually. This is huge for me as walking to class may be unsafe if I feel faint - never want to fall and hit my head mid-walk. I also get extensions on my assignments when need be if I had to go to the ER and need a 24-hour extension. My friends are really understanding. We always make sure to have something soft for my head if I were to have a seizure/fall. They have all sat down with me to understand my condition but also ask questions when they are unsure of something. When I need to cancel at the last minute, they understand and respect my decision. Sometimes they will even come to my house to watch a movie instead since I wasn’t well enough to go out. Question (5): What have you learned about yourself since living with PoTS? Answer: I have learned I am strong and more stubborn than I ever realized. Not always a great thing but in this case, it is a good thing because I tolerate the pain better to get the things done. I used to let things get in my way and stop me but I don’t do that now. Question (6): Despite PoTS having no cure, are there any ways you manage the condition? Answer: I manage each symptom on its own. It is a very hard balance between medications, herbal supplements, exercise, etc. After 6 years I still don’t have a perfect balance. Question (7): Have you found/been part of an online or in-person community of people with PoTS? What have you learnt from them? Answer: I have joined support groups and they have given tips and suggestions on how to manage pain, doctors to see, and just support each other through our struggles. I also love following some major celebrities/spouses who have POTS and seeing how they go through life with their POTS journey. Question (8): Please tell us a bit about you. What hobbies or activities do you enjoy? Answer: I love binge-watching TV shows, cooking/baking, sleeping, puzzle building, and colouring adult colouring books. Question (9): Do you have any tips or advice to share with those who are learning to accommodate living with PoTS Answer: Keep reading and trying new methods for everything. Advocating and becoming knowledgeable is the best way in my opinion to figure out how to manage symptoms/pain. Everyone reacts differently to treatments so what may work for one may not for another which is why you have to keep trying until you find the solution. Don’t get discouraged because it will take years and years to get near the “solution”. Question (10): Would you like to add/include anything? Answer: I always encourage others to go watch the video on YouTube of JJ Heller’s “I Believe In You” [https://www.youtube.com/watch?v=3-J4IW8xu0c&ab_channel=JJHellermusic] as it is an accurate depiction of what someone with POTS goes through. Thank you so much for your time, I am grateful that you’ve given us more knowledge about Postural Tachycardia Syndrome. =-=-=-=- Love interviewing/Want to be interviewed? Click here for more information! [https://docs.google.com/forms/d/e/1FAIpQLSfbkcFgQREBBYter05rVXkoVFloIyvwfGWsT7FGbPh56ohS7w/viewform] Once again, a big thank you to WonderfulRainbow817 for her patience with this interview being posted. Tagging our friends who are on our tag list, if you’d like to add or remove yourself, please click here 😊 [https://www.7cups.com/forum/DisabilitySupport_47/InterviewSeriesInclusivityDiaries_2386/CallForApplicationsToBeInterviewed_276642/]😊 @777Bre777 @adaptablePomegranate1587 @adequatelyInadequate @adventurousBranch3786 @AffyAvo @amusingTalker1267 @Aqua1494 @Arsalanahmed @Ashleylovescats @AttentiveEar @audienta @Averayne93 @Azalea98 @azuladragon34 @BeyondTheInvisible @BlindGrapefruit @bouncyVoice4149 @Breezy2013 @CaringBrit @CheeryPotato @CheerySandi @ChildGoddessFlute @Colorfulcatsofhope @considerateBunny7436 @considerateParadise6717 @Disneywoman @DoISayIt @DylanMark @Edobre399 @Emiliako @emotionalTalker2260 @enthusiasticTortoise6681 @exuberantBlackberry9105 @fairmindedWater1140 @Fireskye13 @FrenchMarbles @friendlyEars8792 @goldenSpruce1512 @IcedCoffee211109 @InfiniteThoughts2k19 @Jamesjones10123 @JoyfulUnicorn @JoyIntoDarkness @K87 @killaj0ule @kwheelz @lightTriangle7748 @LikeABirdWithoutWings @lovelySun2900 @LoveMyRotty @magnifiedfaith @ManinblacK @MilaAvery @MistyMagic @mnhtx3 @modestOcean1286 @moosprbrk @MyNameIsNicole @NaomiR @NevaehRose @OneErased @pinkbunnywabbit @Pixiechu @placidMoth @PotFullOfSky2020 @rainbowVibes @Raysofsunshineandrainbow2005 @redGrapes1822 @Redheadmadeofglitter94 @repen13 @sabeyesofblue3535 @SmolBurrahobbit12 @specialPurple1582 @StarsOrchidsOwls @sunshinegiraffe123 @TheResilientDancer @TimidBear @turquoiseHemlock900 @u2canwin @wahmbrenda @WarmLightXO @WeedyGarden @wonderfulRainbow817 @xandia @Zed786
Weekly Check In April 23 - 29
by AffyAvo
Last post
13 hours ago
...See more [A grey cartoon figure walks a tightrope] Source [https://pixabay.com/illustrations/sports-work-out-active-fitness-1013999/] Balance - It can be difficult for anyone to find the right balance in their life! Disabilities can make that even more complex. Is there an area in your life you would like to be more balanced? Do you have any tips to share with others on balancing factors in life? How are you doing this week?
To the person, struggling to accept their disability
by Countrygirl095
Last post
2 days ago
...See more An open letter to those struggling to accept their disability Dear person, I want you to know that I’m proud of you for doing the best you can although you’re worn out and you feel like you’ve had enough and you feel like the struggle doesn’t end. I’m here to tell you that you’re not alone, we’ve been through that struggle where we struggle to accept who we are because of the barrier society put in front of us. i’m here to tell you there’s nothing wrong with who you are and you are amazing just the way you are and you don’t have to change your thing the world could change your heart after all broken crayons could be used to make the world a colorful place just like we can with our abilities that could help others connect with diversity and inclusion. You are here for a reason keep writing your story keep shining your light the world needs it in the world that is often overlooked by darkness and sadness. Just know that you and I’m rooting for you sincerely, country girl, 95.
Anyone Have Tourette's (or Know Someone Who Has It)?
by jesusredeemedme2425
Last post
2 days ago
...See more I have mild Tourette's. I have vocal tics (meow/roaring, moaning, and other embarrassing and only partially controllable sounds), verbal tics (saying random words, verbalizing part of a conversation I'm having in my head- you know how we all daydream about convos we want to have! Mine just get verbalized sometimes), and physical tics (nothing too specific, just movements at random and such). My tics are usually hideable, but the more stressed I get, the more noticeable they become. I "rawr-ed" in the bathroom the other day and my mom heard it. It was kinda embarrassing. Does anyone else deal with Tourette's, or know someone who does? Please use this as a safe space to share your stories and anything you've learned, anything that helps, ways of getting people to understand and accept your tics, or anything else you'd like! <3
My little disability space
by AvyIsKing
Last post
2 days ago
...See more Hi! My name is Avy. I'm 15 years old. Basically I am going to use this space to rant about pain, the affects of my disability, and weird little things about it no one notices.  Let me explain my story a little bit: So in 2021 I was playing soccer and I got stepped on, and then stepped on again early 2022. I went to my doctor and she sent me to an orthopedic doctor. That was when the surgeon said he was surprised I hadn't been to see him sooner. Because of my injury I ended up with severe tendinitis and arthritis in my foot. I was sent to physical therapy. Through months of intense physical therapy 4 times a week and going to the surgeon every 3 weeks, he figured this out. I have naturally high arches, it runs in my family. But for some reason the tendons in my foot stopped growing when I was about 7. Which explains why my feet have always hurt. As I'm getting older and taller it's getting worse and one day the tendons in my feet will snap. I also have tri-pod foot (that's what he called it) from my heels being misaligned. Basically only 3 really small points on my feet ever touch the ground. Not even my toes 😨. I've gone through 2 pairs of inserts, I do physical therapy every dang day, and nothings working. Basically now my only option is surgery. Since I've been limping for 2 years my knee has been affected and so has my hips. This whole process has been really isolating and discouraging. I kind of just want it over.  Anyway lots of weird things happen so I'll share them here!
2024 - Taglist Disability Support
by CaringBrit
Last post
Monday
...See more This thread controls an auto-updating tag list. To see the current list, go to Disability Support [https://rarelycharlie.github.io/taglist?3ec913e645043cdcd31f94a3324ab37c]. To add yourself to this tag list, press the Post to Thread button above and write the exact words Please add me. To remove yourself from this tag list, press the Post to Thread button above and write the exact words, Please remove me. This Taglist will be used for the Daily Check-Ins could even be used for Events etc. What happens after you join the tag list? You will notice an icon for a little bell up in the right corner of your screen. there is a letter icon, then the bell, then a jar, and then the icon for your account. That bell will tell you about your notifications. When we tag you, it will show up as a number on the bell. Click on the bell and a drop-down menu will appear and it will show you the link to the post where we tagged you. Current taglist as at April 22 2024 127 @777Bre777 @adaptableOcean4193 @adaptablePomegranate1587 @adequatelyInadequate @adventurousBranch3786 @AffyAvo @agreeableTurtle1021 @AguaNector6700 @amusingTalker1267 @Aqua1494 @Arsalanahmed @Ashleylovescats @AttentiveEar @audienta @AutiBoy @Averayne93 @azuladragon34 @BacktotheTrail @BeyondTheInvisible @BlindGrapefruit @blissfulTouch29 @Bndonovan02 @bouncyBreeze44 @bouncyVoice4149 @Breezy2013 @cal1860 @CaringBrit @CheeryPotato @CheerySandi @ChildGoddessFlute @Chloe1644 @cinnamoncocoa @CocoaCassie @Colorfulcatsofhope @considerateBunny7436 @Countrygirl095 @crystallizedrequiem @Daisy7cups @DichotomousDetia @disneymoonlight @Disneywoman @DoISayIt @DonaldK @DylanMark @Edobre399 @Emiliako @emotionalTalker2260 @enthusiasticOwl866 @enthusiasticTortoise6681 @fairmindedWater1140 @Fireskye13 @FrenchMarbles @friendlyEars8792 @goldenSpruce1512 @IcedCoffee211109 @IndigoWhisper @InfiniteThoughts2k19 @Jamesjones10123 @Jewels012222 @jovialButterfly6752 @JoyfulUnicorn @JoyIntoDarkness @K87 @kenzixo @killaj0ule @Kittibear @KuhnDisabled101 @kwheelz @lightTriangle7748 @LikeABirdWithoutWings @lovelycoacoa @lovelySun2900 @LoveMyRotty @magnifiedfaith @ManinblacK @MartianGirl347 @MeaningfulSilence @Meowsicle @MistyMagic @mnhtx3 @modestHickory2783 @modestOcean1286 @moosprbrk @MyNameIsNicole @NaomiR @NevaehRose @NotKhan2 @NovaIsNB @OneErased @PerfectHarmony10 @philosophicalAcai7803 @pinkbunnywabbit @Pixiechu @placidMoth @Plantsaremybestfriends @Poppia @PotFullOfSky2020 @rainbowVibes @Raysofsunshineandrainbow2005 @redGrapes1822 @Redheadmadeofglitter94 @repen13 @reservedCat9143 @RiggsMortis @sabeyesofblue3535 @Seachele @SmolBurrahobbit12 @SparklyCat @specialPurple1582 @StarsOrchidsOwls @stuffiessytem @sunshinegiraffe123 @tearstruck @theboymoana @TimidBear @TomatoEmi @turquoiseHemlock900 @u2canwin @wahmbrenda @Walker7957 @WeedyGarden @wishfulWillow6962 @WishUponAStar968 @wonderfulRainbow817 @xandia @Xisle @Zed786
Weekly Check In April 16 - 21
by AffyAvo
Last post
Friday
...See more [The arms of someone wearing a lab coat are seen and the person is holding up a plastic representation of DNA bases] Image Source [https://www.pexels.com/photo/crop-chemist-holding-in-hands-molecule-model-3825527/] There are so many different disability related awareness campaigns - whether it's about accessibility, inclusion or information about a specific condition. Disability Support will have a post for HAE Day soon! Do you feel connected to any awareness campaigns? If not, is there one you would like to see? How are you doing this week? Is there something you would like some support with?
Boom! or Bust! All about pacing . . .
by MistyMagic
Last post
Friday
...See more This post will open our new series on  ⚡P A I N !💥 All About. . . Boom!⬆️ Bust 🔽 and Pacing 🟰 The concept of "boom-bust" and “pacing” particularly in the context of disabilities, refers to a pattern of energy expenditure characterized by alternating periods of high activity or productivity ("boom") and subsequent periods of low energy, exhaustion, or rest ("bust"). This approach is often employed by individuals with chronic illnesses, disabilities, or conditions that cause fluctuations in energy levels, such as chronic fatigue syndrome, fibromyalgia, or certain types of disabilities affecting energy levels. How often have you started out at the beginning of an activity or project full of energy (Boom) racing along only to begin feeling tired, but still you carry on because you don’t want to stop, or you just want to finish what you are doing, and then the next day you are so very tired and in pain or exhausted and cannot do anything (Busted) and the recovery takes a few days or even longer? Here's a breakdown of the “boom-bust” and “pacing” approach and its implications for individuals with disabilities: Understanding Energy Levels: Boom-bust pacing recognizes that individuals with disabilities often have limited energy reserves, which can fluctuate from day to day or even within the same day. It emphasizes the importance of being attuned to one's own energy levels and learning to manage them effectively. Managing Activities: Rather than trying to maintain a constant level of activity throughout the day, boom-bust pacing involves identifying periods of higher energy (boom) and using them for more demanding tasks or activities, while conserving energy during periods of lower energy (bust) through rest or less demanding activities. Prioritizing Tasks: Individuals practicing boom-bust pacing often prioritize tasks based on their energy levels. Important or demanding tasks are tackled during periods of higher energy, while less critical tasks may be deferred to periods of lower energy. Ask yourself these questions and think about your answers, then jot them down so that you have a list of your priorities, you can add them in your reply to this post. * What is important? - read all the points below before deciding! * What MUST I do? * What do I want to do? * What do others want me to do? * What am I expected to do? (may include deadlines) * What can I do? Avoiding Overexertion: By pacing activities and balancing periods of activity with rest, individuals can reduce the risk of overexertion, which can exacerbate symptoms or lead to "crashes" where energy levels plummet (bust), sometimes for an extended period as the recovery needed after a “boom” can be extensive and disproportionate to the gain. Examples:  You may want to finish weeding a flower border and do it all in one afternoon, the flower border looks great but you end up exhausted in bed for 3 days. If you had spread it over 2 afternoons then you would not end up exhausted. You have an important exam next week, so you stay up all night studying. The next day you cannot get out of bed because of the body aches and exhaustion. If you had split the studying into short periods then you would not have crashed so badly and could have revised for a few hours every day.  Remember to STOP BEFORE the pain is too bad or STOP BEFORE you feel exhausted, that way the rebound to recovery is faster, and smoother, and repeatable. Take a look at https://www.pomodorotechnique.com/ [https://www.pomodorotechnique.com/]  splitting studying or any task into shorter periods. The original technique has six steps: * Decide on the task to be done. * Set the Pomodoro timer (typically for 25 minutes). * Work on the task. * End work when the timer rings and take a short break (typically 5–10 minutes). * Go back to Step 2 and repeat until you complete four pomodoros. * After four pomodoros are done, take a long break (typically 20 to 30 minutes) instead of a short break. Once the long break is finished, return to step 2. ( a pomodoro is an interval of work time). Also the Spoon Theory [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/SpooniesandDropitlikeitsPOTSshirts_20186/] 🥄🥄🥄🥄🥄🥄 and Here [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/BoomorBustAllaboutpacing_327034/] Flexibility and Adaptability: Boom-bust pacing requires flexibility and adaptability, as energy levels can vary unpredictably. It's important for individuals to listen to their bodies, adjust their plans as needed, and never feel guilty for needing to rest or modify their activities. Communication and Advocacy: In work or social settings, it's essential for individuals practicing boom-bust pacing to communicate their needs effectively and advocate for accommodations or adjustments when necessary. This might involve explaining their pacing approach to employers, colleagues, or friends and asking for understanding and support. Self-Care and Wellness: Boom-bust pacing is ultimately about self-care and managing one's health effectively. It involves not only managing physical energy but also attending to emotional and mental well-being, recognizing the importance of rest, relaxation, and activities that bring satisfaction, happiness, and joy. Overall, boom-bust pacing can be a valuable strategy for anyone, but more so for individuals with disabilities to manage their energy levels and navigate daily life more effectively. By learning to listen to their bodies, prioritize tasks, balance activity with rest ie: pacing themselves, individuals can optimize their functioning and improve their quality of life despite the challenges posed by their disabilities. Chronic Pain Resources  Here Living with Chronic pain Here [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/AFewTipsonHowToLearnToLiveWithPainbyDrCherylAMacDonald_23694/] Q [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/AFewTipsonHowToLearnToLiveWithPainbyDrCherylAMacDonald_23694/]uestions to ask yourself, please reply below! * Do you recognize yourself as a ‘boom-bust’ or ‘pacing’ individual? * Have you ever used this method? If you haven’t will you try it in the future? If not why not? If you do does it help? * Can you remember one time when you carried on when you should have stopped and rested? What happened? * Do you have tips to share with us, please do! Consider joining the Disability Community Support Team. More information Here [https://www.7cups.com/forum/disabilities/CommunitySpace_227/JoinTheDisabilitySupportCommunityTeam_325009/] Tag list @777Bre777 @adaptableOcean4193 @adaptablePomegranate1587 @adequatelyInadequate @adventurousBranch3786 @AffyAvo @agreeableTurtle1021 @AguaNector6700 @amusingTalker1267 @Aqua1494 @Arsalanahmed @Ashleylovescats @AttentiveEar @audienta @AutiBoy @Averayne93 @azuladragon34 @BacktotheTrail @BeyondTheInvisible @BlindGrapefruit @blissfulTouch29 @Bndonovan02 @bouncyBreeze44 @bouncyVoice4149 @Breezy2013 @CaringBrit @CheeryPotato @CheerySandi @ChildGoddessFlute @Chloe1644 @cinnamoncocoa @CocoaCassie @Colorfulcatsofhope @considerateBunny7436 @Countrygirl095 @crystallizedrequiem @Daisy7cups @DichotomousDetia @disneymoonlight @Disneywoman @DoISayIt @DonaldK @DylanMark @Edobre399 @Emiliako @emotionalTalker2260 @enthusiasticOwl866 @enthusiasticTortoise6681 @fairmindedWater1140 @Fireskye13 @FrenchMarbles @friendlyEars8792 @goldenSpruce1512 @IcedCoffee211109 @IndigoWhisper @InfiniteThoughts2k19 @Jamesjones10123 @Jewels012222 @jovialButterfly6752 @JoyfulUnicorn @JoyIntoDarkness @K87 @kenzixo @killaj0ule @Kittibear @KuhnDisabled101 @kwheelz @lightTriangle7748 @LikeABirdWithoutWings @lovelycoacoa @lovelySun2900 @LoveMyRotty @magnifiedfaith @ManinblacK @MartianGirl347 @MeaningfulSilence @Meowsicle @MistyMagic @mnhtx3 @modestHickory2783 @modestOcean1286 @moosprbrk @MyNameIsNicole @NaomiR @NevaehRose @NotKhan2 @NovaIsNB @OneErased @PerfectHarmony10 @philosophicalAcai7803 @pinkbunnywabbit @Pixiechu @placidMoth @Plantsaremybestfriends @Poppia @PotFullOfSky2020 @rainbowVibes @Raysofsunshineandrainbow2005 @redGrapes1822 @Redheadmadeofglitter94 @repen13 @reservedCat9143 @RiggsMortis @sabeyesofblue3535 @Seachele @SmolBurrahobbit12 @SparklyCat @specialPurple1582 @StarsOrchidsOwls @stuffiessytem @sunshinegiraffe123 @tearstruck @theboymoana @TimidBear @TomatoEmi @turquoiseHemlock900 @u2canwin @wahmbrenda @Walker7957 @WeedyGarden @wishfulWillow6962 @WishUponAStar968 @wonderfulRainbow817 @xandia @Xisle @Zed786 Add or Remove yourself in this thread HERE [https://www.7cups.com/forum/disabilities/WeeklyCheckin_1053/2024TaglistDisabilitySupport_202464/]
Weekly check in (7th April - 15th April)
by dreamIcicle8467
Last post
April 16th
...See more Hello Everyone! Today, April 7th, is World Health Day, an awareness day, created by the World Health Organisation (WHO) in 1950 to spread more awareness about disabilities and long term conditions.  This year’s theme is “My Health, My Right”, was set to highlight the importance that everyone deserves access to: * high-quality healthcare * education * information * autonomy to make decisions * freedom from discrimination through reasonable adjustments and suitable working environments * basic essentials such as food, water, and shelter Weekly Check in Questions: * What do you find most challenging about living with a disability or chronic illness in day to day life?  * What did you manage to accomplish last week? * What are your priorities for this week? * How can we support you this week?
HAE Awareness Day 2024
by MistyMagic
Last post
April 16th
...See more https://haeday.org/ [https://haeday.org/]   On 16 May every year, there is an awareness day for HAE - Hereditary Angioedema. This year people have been walking to raise awareness and money and so far over 7 million steps in 27 countries have been logged! What is HAE? Hereditary angioedema (HAE) is a rare genetic disorder characterized by recurrent episodes of swelling (edema) in various parts of the body, including the skin, gastrointestinal tract, and upper airways. This condition is most commonly caused by mutations in the C1 inhibitor gene, resulting in decreased levels or dysfunctional activity of the C1 inhibitor protein, which plays a crucial role in regulating the complement system and controlling inflammation. We are also discovering mutations in other genes that may result in normal C1 inhibitor HAE. How does it show? HAE can manifest with unpredictable and sudden attacks of swelling, which can be debilitating and potentially life-threatening, especially if the swelling occurs in the throat or tongue, leading to airway obstruction. The severity and frequency of attacks can vary among individuals, and triggers for these attacks may include stress, trauma, hormonal changes, or certain medications. Management of HAE involves a combination of preventive measures and acute treatment to alleviate symptoms during attacks. Preventive therapies aim to maintain adequate levels of functional C1 inhibitor protein in the body and may include long-term prophylactic medications or replacement therapy with C1 inhibitor concentrates. Acute treatment typically involves the administration of medications such as C1 inhibitor concentrates, bradykinin receptor antagonists, or plasma-derived products to relieve symptoms and prevent complications during attacks. Overall, HAE is a complex and potentially serious condition that requires a multidisciplinary approach involving healthcare professionals, patient advocacy organizations, and researchers to improve diagnosis, treatment, and outcomes for individuals affected by this disorder. More Information and Resources Several sources provide comprehensive information and resources on HAE, including: 1. Hereditary Angioedema Association (HAEA) The HAEA is a patient advocacy organization dedicated to raising awareness, supporting, and advancing research for individuals affected by HAE. Their website offers educational materials, support services, and updates on research and treatment options for HAE. (Website: https://www.haea.org [https://www.haea.org]/) 2. Medical Journals and Publications -Medical journals often publish research articles, review papers, and case studies on HAE, providing insights into the latest advancements in understanding the pathophysiology, treatment modalities, and outcomes of this condition. Journals such as The Journal of Allergy and Clinical Immunology (JACI), Annals of Allergy, Asthma & Immunology, and The Lancet Respiratory Medicine frequently feature articles on HAE. We have a forum discussion here HAE and Misconceptions [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/HAEandMisconceptions_34671/] And an interview on HAE here HAE Interview [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/AnInterviewWithAffyAvoonHereditaryAngioedema_278243/] For anyone interested in being interviewed there is a form https://forms.gle/MZ1df1FWtJYHQvuy9 [https://forms.gle/MZ1df1FWtJYHQvuy9]  to express your interest in being interviewed as well as volunteering to interview someone else. You can also leave your feedback, Ideas, and comments too! Catch up with other Interviews Here [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/InterviewSeriesMasterList_292976/] in our Master List! Want to join the Disability Support Community Team? Find out more Here [https://www.7cups.com/forum/disabilities/CommunitySpace_227/JoinTheDisabilitySupportCommunityTeam_325009/]
Articles & Resources Alphabetic List
by AffyAvo
Last post
April 7th
...See more This post has an alphabetical list of the links in this forum section. Currently a work in Progress Generalized Topics Boom, Bust and all about Pacing - 1 [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/BoomorBustAllaboutpacing_327034/?post=3529503] Cardiologist Appt - 1  [https://www.7cups.com/forum/disabilities/General_2442/Whatsacardiologistappointmentgoingtoentail_326846/] Chronic Illness - 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/ChronicIllnessSupport_18295/]   2 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/WhattheChronicallyIllDONTWanttoHearpart2ByToniBernhard_35925/]   3 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/ProfessionalPatient_36061/]   4 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/YouDontLookSickLivingWellwithInvisibleChronicIllness_30413/] Disabilities - 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/Disabilityblog_27750/]   2 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/fromtheheart_41157/] Government Disability Support - US 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/SSISSDprocess_23492/]   2 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/achievingabetterlifeexpierienceABLEaccount_31760/] Hotlines & Resources - US 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/ResourcesUS_11205/] Pain - 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/ChronicPainResources_19331/]   2 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/AFewTipsonHowToLearnToLiveWithPainbyDrCherylAMacDonald_23694/]   3 [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/BoomorBustAllaboutpacing_327034/] Spoon Theory - 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/SpooniesandDropitlikeitsPOTSshirts_20186/]  2 [https://www.7cups.com/forum/disabilities/ChronicConditionsSupport_710/Newadditiontothespoontheory_300739/] Specific Topics Anencephaly - 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/RaisingAwarenessforAnencephaly_6978/] Beta Thalassemia - 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/IhaveBetaThalassemiaMajorAMA_2908/] Cerebral Palsy - 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/Inspiringpalsystory_5517/] 2 [https://www.7cups.com/forum/disabilities/PainSupport_1057/FromPaintoStrengthACerebralPalsySurvivalGuide_324996/] CFS Chronic Fatigue - 1 [https://www.7cups.com/forum/disabilities/ChronicConditionsSupport_710/ChronicFatigueSyndrome_273911/] Complex Regional Pain Syndrome - 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/ComplexRegionalPainSyndromeCRPS_37080/] Colorblindness - 1 [https://www.7cups.com/forum/disabilities/General_2442/Hellomycolorblindpals_326601/] Degenerative Disc Disease - 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/WhatIsDegenerativeDiscDisease_35834/] Epilepsy - 1 [https://www.7cups.com/forum/disabilities/GetSupport_349/EpilepsySupport_199835/] Hereditary Angioedema  (HAE)- 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/HAEandMisconceptions_34671/]     2 [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/HAEAwarenessDay2024_327339/] Irritable Bowel Syndrome - 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/WhatMyTurbulentBowelTaughtMe_35489/] Postural Orthostatic Tachycardia Syndrome (POTS) - 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/SpooniesandDropitlikeitsPOTSshirts_20186/] Multiple Sclerosis - 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/AMAMultipleSclerosis_23704/] Rheumatoid Arthritis - 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/WhatMakesMeFeelLikeanOutsiderasaPersonWithRheumatoidArthritis_35475/] Smoking & Tobacco - 1 [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/HAEandMisconceptions_34671/] Tourettes - 1 [https://www.7cups.com/forum/disabilities/ChronicConditionsSupport_710/AnyoneHaveTourettesorKnowSomeoneWhoHasIt_324670/] currently being updated by AffyAvo & MistyMagic April 2024 Last updated April 2024 - pages 7 & 6 complete

Welcome to the Disability Support Community!

This is an inclusive community where people can seek and provide support and post about topics related to learning disabilities, chronic pain, chronic illnesses and conditions, physical disabilities and developmental disabilities. You are welcome to join in even if you don't used disabled as a label for yourself.

There are a number of ways to get involved and be supported. We have a pop up teen chatroom and a 24/7 adult chatroom.

There are guides for Chronic Pain and T2 Diabetes
There are Q&A sections for Disabilities and Chronic Pain

Members may connect with a listener who has disabilities, chronic pain, cancer, diabetes, adhd or autism listed as a topic and there are listeners with disabilities supporting people with disabilities

We encourage people to post new threads and respond to others in the forums! Some good ways to get started are to introduce yourself and to join our tag list to be notified of weekly check ins and events. We also have an Interview Series: if you would be open to sharing more about yourself and want to be interviewed.

Looking to be even more activity in the Disability Community? Join as a leader!

*Note we are inclusive of all disabilities but ADHD and Autism each of their own communities which may be of interest to some of you.

Community Guidelines

🌟 Please be respectful of everybody's thoughts and opinions.

🌟 Don't think you are alone, so please share

🌟 Please be patient if you feel like your concern hasn't been addressed yet; we are working hard to add more leaders and supporters.

🌟 If you have any concerns, reach out to a leader or make a post.

🌟 For Listeners only - please remember that you are here to give support, if you are seeking support then please switch to your Member account.

🌟 Most of all - don't forget to be awesome! You are loved and accepted here, no matter what!

Guidelines For Using AI 


We all want the Disability Support Community to be a safe place where people are able to be their authentic selves and receive support. We understand that AI tools can be helpful in reducing barriers, allowing people to better express themselves, and allowing those with some disabilities to be able to read, write, and post, but excessive, or complete use of AI can feel robotic and reduce supportive person-to-person interactions. It can also lead to false impressions of the poster. We want to try and avoid this and help our Community to be as inclusive and as welcoming as possible to all users.


What is AI?

AI is short for ‘artificial intelligence’ which is software, a program or algorithm that works to sort, order, and combine data to give a response or answer to a question or input. Artificial intelligence is the ability of a computer, software, or computer-controlled robot to perform tasks that are commonly associated with the intellectual processes characteristic of humans, such as the ability to reason. As yet no AI’s match full human flexibility over wider domains or in tasks.

Some of the most common examples of AI in use today include: 

  • ChatGPT: Uses large language models (LLMs) to generate text in response to questions or comments posed to it. 

  • Google Translate: Uses deep learning algorithms to translate text from one language to another. 

  • Netflix: Uses machine learning algorithms to create personalized recommendation engines for users based on their previous viewing history. 

  • Tesla: Uses computer vision to power self-driving features on their cars.



If using AI tools please adhere to the following:


  • Include some of your own personal expression. This could come from a detailed, personal prompt to the AI tool or include some of your own words with a post.

  • Cite which AI tool(s) you used, which applies both to AI-generated and AI-edited text as well as images too. For instance, if you use Dragon to voice type then say so and if the text is AI-edited include that fact too.

  • Avoid posting misinformation. AI sometimes creates personalized anecdotes, facts, or references. If you are sharing an experience, don’t post an AI-fabricated one. If posting information check that it is correct and aligns with trustworthy sources.

  • Cite the source of your information. It can be important to know and understand the source of information posted, AI-generated content may draw information from their database so try and use factual sites that can be checked and that aren’t misleading.

  • Don’t make threads in excess. AI can make it fairly quick to create a lot of content. We want to give everyone’s posts a chance to be seen. Please don’t post a large amount of threads in a short period of time, this is called ‘flooding’ and can prevent other posts from being seen.

  • If you do feel like there’s a lot you want to state on one topic, consider making multiple posts within the same single thread. Or create your own ‘Disability Diary’ thread and post there, this will increase your visibility, and those who reply will be notified when you add another post.

  • Follow the guidelines. You are responsible for what is posted from your account, even if AI was used in the creation of the post, so please double-check what you write and post!


For more information please read this post by @Heather225 - 7 Cups Community Director.


Do’s ✅  and  ❌ Don’t List:


Do - Humanize your post with your own expression and words

Do - Cite the AI tool(s) you use

Do - Make ONE thread and post to it if there are several posts you want to make

Do- Read things over and ensure the guidelines are being followed

Don’t post something that is entirely AI-generated with little input from yourself

Don’t post misinformation

Don’t flood the forums with AI threads, or multiple threads


If in doubt please ask @MistyMagic  (Adults and Teens) or @AffyAvo (Adults) or consider joining the Disability Community Support Team. More information Here







Community Leaders
Community Mentor Leader
Community Mentor / Teen Community Star
Forum Supporter
Group Support Mentor / Teen Star
On Self-Care Break