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September Check In
by AffyAvo
Last post
 1 day ago
...See more [Peanuts characters look off a dock, at the sunset while leaves swirl around them text states GOODBYE AUGUST Hello September] September can be a shift, some schools are full of people settling into new routines, the weather changes into a new season and pumpkins seem to pop up everywhere. Some of us are also cheering on the Paralympians (check out this post [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/ParalympicsParis2024_335558/])! Are you experiencing and changes or stating something this month? What's a fun activity you are doing this month? How are you doing? Would you like support with anything?
Boom! or Bust! All about pacing . . .
by MistyMagic
Last post
 August 31st
...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/] More on Pacing Here [https://www.cfsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope] 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/]
2024 - Taglist Disability Support
by CaringBrit
Last post
 July 22nd
...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 July 19th 2024 130 @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 @communicativePond1728 @considerateBunny7436 @Countrygirl095 @crystallizedrequiem @Daisy7cups @DichotomousDetia @disneymoonlight @Disneywoman @DoISayIt @DonaldK @DylanMark @Edobre399 @Emiliako @emotionalTalker2260 @enigmaticOcean8813 @enthusiasticOwl866 @enthusiasticTortoise6681 @fairmindedWater1140 @Fireskye13 @FrenchMarbles @friendlyEars8792 @goldenSpruce1512 @greekcatperson @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 @Ofenkartoffel @OneErased @PerfectHarmony10 @philosophicalAcai7803 @pinkbunnywabbit @Pixiechu @placidMoth @Plantsaremybestfriends @Poppia @PotFullOfSky2020 @rainbowVibes @Raysofsunshineandrainbow2005 @redGrapes1822 @Redheadmadeofglitter94 @repen13 @reservedCat9143 @reservedOwl6476 @RiggsMortis @sabeyesofblue3535 @Seachele @SmolBurrahobbit12 @SparklyCat @specialPurple1582 @StarsOrchidsOwls @stuffiessytem @sunshinegiraffe123 @tearstruck @theboymoana @TimidBear @TomatoEmi @turquoiseHemlock900 @u2canwin @wahmbrenda @Walker7957 @WeedyGarden @WishUponAStar968 @wonderfulRainbow817 @xandia @xxParkerxx @Zed786
My little disability space [TW]
by AvyIsKing
Last post
 August 31st
...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!
Interview Diaries - Living with 'RA'
by MistyMagic
Last post
 July 27th
...See more Hello everyone, this is an interview with @Clio9876  about what it is like ‘Living with Rheumatoid Arthritis (RA)’.    Clio, thank you for taking the time to answer our questions so we may better learn and understand what it is like to live with ‘RA’ Rheumatoid Arthritis every day. It is our pleasure to find out more.   * Can you tell us about how and when you were diagnosed with RA?  About 15 years ago. I was a very "outdoorsy" type person, with an active outdoor job. It started with really bad inflammation of a tendon in my hand, to the point where my finger would be locked bent. By the time I'd been referred and diagnostics completed, I could barely walk round the block with my dog in the evening , having been used to going several km each night. * How has RA affected your life since then? I am lucky compared to some. My RA is well controlled by medication. I've had to learn to slow down and pace myself a bit. But I can still work and look after my garden and walk my dogs. I take less risks - I used to do things like go down the stairs two at a time. I'd never do that now. I take the lift when I could take the stairs. I only buy pans with two handles, so I can lift with both hands. I dread the person with the robust handshake. I've had to accept that a greater proportion of my life will be spent in doctors waiting areas than the average person. But mostly I try hard to make sure it affects my life as little as possible. * What are the worst parts of having RA? That it gets confused with osteo-arthritis. I call my disease RA, never rheumatoid arthritis. Because as soon as people hear the word "arthritis" they say "oh, I've got that". Everyone over the age of 35 has osteoarthritis. It's part of ageing. I have osteoarthritis. But I have RA too. RA is an autoimmune disease. My immune system attacks my joints. Without medication, my body would be in a constant cycle of self destruction and repair. So while the primary symptom is pain, the second is flu like exhaustion. I didn't realise until I got this disease, that the exhaustion of flu is as much the energy costs of repair, as fighting the virus itself. Building bodies is energy intensive. Babies and teenagers can tell you all about how growth demands sleep. That RA is an invisible disease. You would not know I had it. I forgive people giving me dirty looks when I'm sat on the priority seat on public transport and I don't get up for someone who is pregnant or elderly. Also those that might laugh at me for wearing sandals with socks. When shoes are too painful and sandals too cold in winter, I'm wearing sandals with socks. The unseen costs of disability. I'm lucky now to have a well paying job. But there was a time when I was low paid. I'm also lucky that I live in a country with public health care. (I'm immensely saddened by the stories of people who have RA and have ended up with preventable deformities because they couldn't afford the medication I take. Or have ended up addicted to opioids, because pain medication was cheaper.) But there are lots of small unseen costs to a disability that add up. My budget at that time meant I had the money for one extra per week. An item of clothing, a pot of paint for the house etc. After I was diagnosed that went on essentials for my condition, like fuel for the car to get to medical appointments, better quality gloves to protect my hands from the cold, better quality shoes, walking poles etc. Simple stuff, but stuff I couldn't really afford. * How can we help to support someone with RA?  Install a bench for passers-by. When life is like walking around with 5 marbles in your shoes, I quite often find myself sitting on the pavement from lack of other options. Don't be like me. I was the healthy naive idiot who never needed to visit the doctor and thought people who took drugs were falling for health care that was too focused on treating symptoms. When your choice is a lifetime in bed or drugs to treat the symptoms, you will take the drugs. Don't judge people on looks. I think people on this site are better than most at this, but I know and I still need the reminder. * What else would you like to share with us about your life with RA? Disability isn't fair.  We all have troubles.  No one would choose to add another.  I consider myself lucky in the disability lottery. ~~~~⭐~~~~ Thank you for answering our questions, it has been really interesting and a pleasure to find out more about living with ‘RA’.  We are glad that you are an active part of our Community!  Resources:- * NIAMS on Rheumatoid Arthritis [https://www.niams.nih.gov/health-topics/rheumatoid-arthritis] Offers detailed information on the causes, symptoms, diagnosis, and treatment of RA. * Mayo Clinic - Rheumatoid Arthritis [https://www.mayoclinic.org/diseases-conditions/rheumatoid-arthritis/symptoms-causes/syc-20353648]  Provides a thorough overview of RA, including symptoms, causes, risk factors, and treatment options. * NRAS [https://www.nras.org.uk/]    A UK-based charity offering support, information, and advocacy for people with RA. These sites offer valuable resources for understanding RA, managing symptoms, and connecting with others who have the condition. Interviewer was @MistyMagic 
Interview Diaries: Living with Cerebral Palsy
by AffyAvo
Last post
 July 22nd
...See more Hello everyone, this is an interview about ‘Living with Cerebral Palsy’ as part of the Cerebral Palsy Awareness Month of March. Our interviewee has requested to remain anonymous during this interview and because of the importance of this discussion about CP we are happy to accept. Thank you for taking the time to answer our questions so we may better learn and understand what it is like to live with Cerebral Palsy (CP) every day. It is our pleasure to find out more. * Can you tell us about how and when you were diagnosed with CP? I was diagnosed with Cerebral Palsy at the age of 3, after my mother noticed delays in my motor development. This diagnosis was attributed to a lack of oxygen to the brain at birth, which occurred when I was born prematurely at 6 months and weighed only 3 lbs. 2 oz., and had to be resuscitated. * How has CP affected your life since then? CP has affected my life since then by limiting my mobility on my left side. However, it has not taken away my ability to enjoy my life. CP has its perks, such as getting in line for a roller coaster and experiencing the unique perspective of CP through concerts and VIP passes. I view it as a gift, as it allows me to see the world from a different perspective. And it has given more stories to write as a writer.  * What are the worst parts of having CP? The worst part of having CP is the lack of understanding from medical professionals, which can make seeking treatment challenging. Additionally, having CP can sometimes lead to days where symptoms flare up and cause immense discomfort, making it seem like CP is having a party in your head. * How can we help to support someone with CP? Supporting someone with CP involves acknowledging their challenges and providing the necessary accommodations. It is important to avoid making assumptions regarding their feelings and coping strategies, as everyone's journey is unique. It is crucial to avoid falling into the trap of inspirational porn and internalized ableism, which can perpetuate unrealistic expectations and judgments. * What else would you like to share with us about your life with CP? When you read that you are in English class and you have read "Pride and Prejudice" by Jane Austen, you might initially expect it to be boring. However, as you delve deeper into the story, you realize that it seamlessly integrates with your own life, captivating your attention and making it almost impossible to put down. That's what living with CP is like; a book with many lessons to be taught  Thank you for answering our questions, it has been really interesting and a pleasure to find out more about living with Cerebral Palsy. 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 @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 @theboymoana @TimidBear @TomatoEmi @turquoiseHemlock900 @u2canwin @wahmbrenda @Walker7957 @WeedyGarden @wishfulWillow6962 @WishUponAStar968 @wonderfulRainbow817 @xandia @Xisle @Zed786
Screwed up again
by ShellyZz
Last post
 July 12th
...See more I had a video hearing with a disability judge today.  I was waiting for the email link and it never came.  I called them about 15-20 minutes to see if they sent the link or not.  They said it was sent on the 9th.  I don't remember seeing anything like that on the 9th so I can only guess it went to junk mail, which I delete every few days since I get so much of it.  Now I have to wait and hope the judge will give me another chance.  I just feel so bad for wasting everyone's time and once again screwing up.  I could have sworn I was told they'd email the day of the hearing.  And then to make matters worse I still hear my mothers voice.  Laughing at me telling me see I told you, you are a waste of space and can't ever do anything right. I just hate myself so much right now.  And now I have to wait longer to see if one the judge will give me another chance, and two I have to wait longer to see if I can even get disability.
Hurt and hurt
by WomensLiveMatters2074
Last post
 May 31st
...See more Everyday due to my disability i don't know what to do it hurts me it breaks me i m fed up I m done I feel none likes me n ignore due to my disability 
Hi. In way health related. Wanted try write and see how it goes..
by xSomeone
Last post
 May 27th
...See more Hi Colitis, Chon's dease or IBS like. Links, advices or Else, knowlage, may think can maybe help Thanks a Lot, if can sure something, appriciated!! ♥️ [Hope posted ok place]
Interview - Living with CFS!
by MistyMagic
Last post
 May 15th
...See more Interview Diaries - Living with CFS/ME Hello everyone, this is an interview about one person’s experience of ‘Living with Chronic Fatigue Syndrome (CFS)’ as part of our raising awareness for International ME/CFS Awareness Day, May 12th! Our interviewee has requested to remain anonymous during this interview and because of the importance of this discussion about chronic fatigue syndrome, we are happy to accept. Thank you for taking the time to answer our questions so we may better learn and understand what it is like for you living with chronic fatigue syndrome every day. It is our pleasure to find out more. * Can you tell us about how and when you were diagnosed with CFS?  ME/CFS stands for myalgic encephalomyelitis / chronic fatigue syndrome. My symptoms began in late 2022 and have since worsened, and I was diagnosed with ME/CFS in early 2023, by a GP.  The diagnostic criteria for chronic fatigue is: * More than 6 months of significant exhaustion * Post-exertional malaise (This means that the symptoms are worsened by activity/exertion, causing a “crash” or a significant increase in symptoms. Triggering factors can range from physical, cognitive, or social activities, stress, and even extreme temperatures. Basically like getting burnout but from the simplest of daily activities. Continued overexertion can cause long-term worsening.) * Unrefreshing sleep, difficulty sleeping, and symptoms are not fully cured by more sleep * Brain fog/concentration and cognitive issues * Orthostatic intolerance (Feeling light-headed/dizzy and other symptoms from standing quickly or being upright. Worse if I’m dehydrated, overheating, or haven’t eaten on time.) There are many other symptoms, but as they vary so much person-to-person, they are not part of the diagnostic criteria. The severity is very different for everyone affected, ranging from a mild reduction in activity, to in extreme cases even being bed-bound and unable to move, talk or care for themselves. Other symptoms for me, include: - Frequent headaches (Especially in temples and behind eyes, but it can be the whole head, or occasionally even a migraine with aura. Worsened by eye strain and sinus issues. Sometimes it radiates to the whole head, and even can feel like tooth pain!) - Circulation and temperature regulation problems: in hot weather this includes dizziness, blood pooling in feet, and lethargy, while in cold weather it can be joint and muscle cramps and aches, very cold hands and feet, and Raynaud’s phenomenon in the fingers. Hydration, compression stockings and clothing layers can help somewhat. - Weakened immune system - Digestion issues and bloating, air hunger, nausea, pain in the glands in my neck, shakiness and weakness, heart palpitations, hair loss, vision issues, chemical sensitivities, and many other seemingly random symptoms, with the worst being exhaustion. * How has CFS affected your life since then? Up until 2022, I was attending high school full time, achieving high marks, fully able to keep up with physical education, etc. with numerous future hopes and plans. In 2023 I attended the start of the school year, kept reducing my schedule, but eventually had to leave and was absent for the remainder of the year as I was too ill to continue in person. My symptoms have progressively worsened, and I am currently classified as having moderate ME/CFS. This year I am attempting online schooling with a reduced workload, but it hasn’t been going well as I am struggling with the time, effort, and focus required, and assignments take far longer than they should otherwise. My friends are graduating high school this year, while I am unsure if, when or how I will finish. Currently, going out is very difficult, and simply a busy morning (e.g., medical appointment, even lots of computer work) leaves me exhausted, weak, nauseous, shaky, wired-but-tired, and forced to rest.  It was something we never expected to happen and quickly had a massive impact on my life. * What causes CFS and is it lifelong? The exact cause is not known, however, many affected people have some idea what triggered it for them.  This can vary, from a virus or infection such as COVID or glandular fever, prolonged stress or physical trauma (such as trauma, heatstroke, sleep deprivation or concussion), environmental factors such as mold (either acute exposure or living in a water-damaged building), heavy metals, toxic chemicals, and others. There are many other possible triggering factors, and it can often be a combination of factors that take a toll on the immune system and end up triggering it. It can also be linked to another related condition.  It is not a condition you are born with, however, there may be a genetic susceptibility - an inherited higher chance of developing if exposed to certain factors. Many other related conditions can have an overlap of symptoms or co-exist, and around half of long COVID patients comply with the diagnostic criteria for chronic fatigue. There is also a lot more awareness of and research into ME/CFS now too though, due to such a large increase in affected people because of long covid. In my case, long term exposure to mould at home, which we were unaware of, was a major trigger, with symptoms eventually worsening to the extent we had to relocate multiple times and stay with family. Despite improving my symptoms this was tiring and disruptive.  Some people recover or improve after only a few years while others can have it for decades. Often people are unsure what exactly helped them recover, but rest, pacing and avoiding triggers can be helpful (although certainly easier said than done 🙂). It is also common to get better and then relapse some time later. * CFS is an ‘invisible disability’ How can we help to support someone with CFS?  Just being understanding about it I guess. Energy/capacity can vary from day to day, and sometimes symptoms can be triggered or worsened by multiple different factors (like sleep quality, weather, exertion, foods, fragrances, light and sound, and multiple others).  Might not look sick: and we only go out when we’re well enough  Having to cancel, delay or modify plans is a very frequent issue with CFS. Some doctors (including specialists!) don’t know a lot about it, nor do many people in schools, workplaces, etc. As a teenager, I am lucky to have the support of my family, and also to not have the financial impact of being unable to work. Common Misconceptions: * It is not something you can just “push through” and it goes away (in fact, this can be very harmful). You wouldn’t try to run a marathon with the flu… I guess that's sort of what it feels like. * It is certainly not fake, and not laziness, nor psychological, but in fact a serious neurological and immune condition. * It is not improved by exercise - graded exercise therapy used to be the recommended treatment but it is now known it can actually be harmful due to post exertional malaise. --------------------------------------------------------------------------------------------- ME/CFS can be described as being like. . . .  “a battery which never fully charges and goes flat very quickly.” (Better Health Victoria [https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs#:~:text=Cells%20in%20people%20with%20ME/CFS%20are%20like%20a%20battery%20which%20never%20fully%20charges%20and%20goes%20flat%20very%20quickly.]) “[People with chronic fatigue] have been described as “missing people”, because as their symptoms get progressively worse, they disappear from employment and much of public life.” (Sydney Morning Herald) [https://www.smh.com.au/national/chronic-fatigue-syndrome-the-missing-people-enigma-20180929-p506u6.html] ------------------------- Thank you for answering our questions, it has been really interesting and a pleasure to find out more about living with CFS. Going forward, and I am sure everyone joins with me, we wish you all the luck in the world. Resources: World ME alliance [https://worldmealliance.org/] | Factsheet Rough guide to ME/CFS [https://me.ecch.org/rough-guide-to-me-cfs/] UK NICE guidelines [https://www.nice.org.uk/guidance/ng206/chapter/Recommendations]  Emerge AU [https://www.emerge.org.au/what-is-mecfs/] | Supporting a friend with ME/CFS [https://www.emerge.org.au/how-to-support-your-friend-who-lives-with-me-cfs-or-long-covid/] BetterHealth [https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs], Health Direct [https://www.healthdirect.gov.au/chronic-fatigue-syndrome-cfs-me] ME/CFS management guidebook [https://batemanhornecenter.org/education/mecfs-guidebook/] Awareness day [https://www.cdc.gov/me-cfs/resources/awarenessday.html]
Living With 'Meniere's Disease'
by MistyMagic
Last post
 April 29th
...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

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







Read the 7 Cups Guidelines
Community Leaders
Community Mentor Leader
@MistyMagic
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@AffyAvo
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@MistyMagic