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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 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
July Check In
by AffyAvo
Last post
July 12th
...See more We're changing things up and will be trying monthly check-ins instead of weekly check in threads. You are welcome to post multiple times though! MistyMagic and I will both be on a break, @Sunisshiningandsoareyou [https://www.7cups.com/@Sunisshiningandsoareyou] will be around in the community for the week and I'm a bit when I'm away. Once I'm back I will host some events for Disability Pride Month! Warning - the below GIF changes images fairly rapidly. [Text reading Hello July with various summer scenes being displayed] What are your plans for July? How are you feeling? What would you like to share with us?
Boom! or Bust! All about pacing . . .
by MistyMagic
Last post
June 18th
...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/]
😥😥😭😭😭😭yep! That's the best title I could come up with
by Tinywhisper11
Last post
4 hours ago
...See more Trigger warning - disabilities and some moaning🙂 so the bottom of my spine is broken and not completely fixable. It's been this way for almost 5 years now. I am paralysed from the waist down, and had my legs amputated. I can sit up when I wear a special made brace with metal splints in, that way I can type, and do arts and crafts, I have good upper body strength, but I'm in constant pain, which really sucks🙁 I have 2 wheelchairs, but I normally use the one I can push myself in, not very far. But it feels like I have a bit of indepence being able to move myself. The past week I've had to use the other wheelchair. It has a control on the armres t. I can't use my normal wheelchair cause I'm to weak right now, and the pain is just so bad I can't move my arms and head properly. The doctors said oneday I will most likely become completely paralysed. So I try to do as much as I can, while I still can. So now I'm sad, and worried. Cause I'm not ready to be fully paralysed yet. I'm really hoping with a bit of rest, I can get back to normal. Well not normal, but my sort of normal😞 it's really hard sometimes. This month as been really really hard
Other inaccessibility issues for disabled people
by Disneywoman
Last post
19 hours ago
...See more This will be a post about a bunch of various inaccessibility issues caused by business or society in general. But most will be about businesses. Soda Fountain So something I found out while researching a topic I will get to later  is that the Coke-Freestyle Soda machine (touch screens) aren't good for people with visually impairments or are blind.  There's no audio way nor an app as far as I know, to help a blind person to use the the item.  That it means they have to have someone (like myself for a friend) or  bug an employee to help them get a drink because they can't do the touch-screen themselves.  And if there's an app-like I believe there is for Subway's similar soda fountains which have a touch-screen that it means that visually impaired or blind folks can't be as spontaneous as their non-blind counterparts.  Like what if they want to mix it up a little?   Or what if the person is bad with technology?  Another kind of soda fountain that resembles the old-school kind of Soda fountain but yet is different because the newer ones  don't have the levers and instead there's buttons (which on a totally enough subject aren't braille or enlarge) that you have to push to get your drink in the cup.   Most people would be able to with these new soda fountains to hold onto the cup when they press the button with the other hand.  But people with a limited mobility in one hand, and  0 mobility in the other hand can't use these kind of machines on their own so would need to ask for help from someone and that's something that disabled people don't like doing.. With the actual old style soda fountains somehow-were easier to use I'm going to assume that it was because of memorizing if it was at a place they been to before.   And these were also handy for people with limited mobility difference.  Next topic: Drive thrus 
What are 3 things about yourself, that make you feel good ?
by Sunisshiningandsoareyou
Last post
1 day ago
...See more 💚 What are 3 things ( feel free to add more if you'd like to ) about yourself , that make you feel good ? 💚
Interview Diaries - Living with 'RA'
by MistyMagic
Last post
2 days ago
...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 
The frustration of not having a diagnosis
by peachStrawberry5882
Last post
2 days ago
...See more I’ve been dealing with a myriad number of physical issues since I was a pretty young teenager, but I just can’t get doctors to actually listen to me and believe that I’m telling the truth, much less finding any treatments or even having a name for whatever is wrong with me. I’m so sick of feeling horrible all the time, having no energy, constantly getting injured, and always being in pain, but at this point, I’ve pretty much given up on ever finding a doctor who’ll actually believe me. I can’t afford to look around for new doctors; I’m on state-provided low income insurance so I don’t have much of a choice in who I see, and beyond that, I’m also trans, which makes it even harder to find providers who’ll actually take me seriously and listen to what I have to say. My life is a complete trainwreck, I can’t keep a stable job because I physically don’t have the energy to do so, and I can’t access any kind of real support or even be able to explain why I can’t do so much just because I don’t have an official word for whatever it is that’s wrong with me. I know this is far from a unique situation, and I shouldn’t complain so much, but god, I’m just so tired of it all. I doubt I’ll ever actually find a medical professional who’s willing to believe what I have to say about my own body and experiences at this point.
not allow be frustrated am stupid
by theboymoana
Last post
2 days ago
...See more Am so frustrated 😭 am not allow feel how do about self am not allow be frustrated when don’t know anything people talk about or how play game or what stuff mean am not allow be upset about about disabilities  anytime try vent or be upset people that smarter then me get mad I feel that way about self and tell me am wrong and act like there struggles mean I do better then them when isn’t how works  someone else have struggle don’t make mine not exist or make not so bad for me and me know sign language isn’t reason im SMART like people keep say because sign my FIRST LANGUAGE was only language know until start learn read English when 10 years old ! Anyone able learn language and be taught sign and only sign from birth going learn ! Is not different baby grow up learn English or Spanish  people keep say then what want from me and just want be able be frustrated and complain then will get over but keep push and push and push and make so frustrated 😭😭😭😭 never say want people try force me believe I smart and never want them act like there struggle reason why im smart when nothing do each other just freaking let me be frustrated few minutes 😭😭😭 people allow be frustrated when don’t understand something or when leave out because no idea what people talk about or whatever am allow be frustrate am allow complain sometimes don’t have lie try make me believe am smart or whatever  most time am fine not good anything like that but sometime just real frustrating and all these people try force me feel how they want me feel frustrating ☹️😭 have lot disabilities that make learning anything real hard am allow be frustrated sometimes 
Bad time in chatroom
by theboymoana
Last post
Friday
...See more Am I only one have very bad time in chat rooms sometimes ? All the time I get people say things like speak English and don’t understand I am saying and say then learn about things I can’t just go learn. People get mad at me not understanding things or people are mean if I say can’t do something. i am tell before I am burden to my family because don’t think will have job when I grow up because my disabilities even though family say will always take care me is maybe people always think is all disable people can have job or something? i have rare syndrome, intellectual disability profound deafness, epilepsy learning disabilities, nonverbal adhd ptsd autism anxiety and hands do not work very good I can’t write get dressed my own use computer need help in bathroom and shower. people act like because can use cups is nothing wrong and ignore I try to say how hard I work to use cups and how is VERY big deal can read and write my mommy teach me and from when my parents take me out of school when I am 9 until now I am 13 is very hard work learning read and write on phone and iPad with lot of help autocorrect. Is very hard to because first language is sign language and very confusing sometimes to make my brain know how to say signs in English words people do not know how much work is to me be here and I am proud of me a lot !!! But I get very sad how chat rooms is not inclusive sometimes. Is lot lot really good people I like a lot see in them but still doesn’t make me forget all mean things other people say to me i don’t understand why is ok to be mean to some one for things cant help.disabled people all are different and we deserve to have chat rooms to go talk to people to :(
Hello ama elinden hiçbir şey gelmiyor
by calmApple1384
Last post
Wednesday
...See more I have vision problem That's why I hesitate to communicate with people Actually people are kind to me I can't be friends with anyone My family doesn't understand my feelings Sometimes people want to be understood Wants the other to be known I feel lonely alone in this world Loneliness is not a problem, but sometimes people want to be understood There is no one around me who understands me Sometimes I wish I could either get out of this situation or just die But I can't change anything, unfortunately, there is nothing you can do, I feel very weak, helpless.I wish there was a magic wand and it would fix my life.But unfortunately such a thing is not possible I'm emotionally weak and I can't express myself.I'm an introvert If I want to explain myself, something prevents me, as if the words get stuck in my throat.My family does not take me anywhere because I am disabled, I think they are ashamed of me, this is a very sad thing.My communication with those around me is superficial and I cannot be close to anyone.My family also doesn't want me to be close to anyone.They want to keep me away from everyone I think they don't love me But I've become a troublesome unwanted child My siblings never call me and I don't care about them either.I wish I would disappear and be erased from this world I am too much for this world.
Interview Diaries: Living with Cerebral Palsy
by AffyAvo
Last post
Monday
...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
IBS-M
by WellsFiction
Last post
Monday
...See more I was recently diagnosed with IBS-M. If anyone here has ever dealt with IBS or knows anything about it please leave a comment below. 
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 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
Self-Advocacy
by MistyMagic
Last post
July 16th
...See more Advocating for oneself in health issues can be very important for ensuring you receive the best possible care, but first:-  What is ‘advocating’? It's being able to speak up for yourself rather than relying on others – having the confidence to say or do something when you don't think something is right, or when something needs reviewing, or changing. Sometimes this is called self-advocacy and when it comes to our health that can really be important! Have a goal!  What do you want to achieve? This could be something as simple as ‘understanding what is said to you’, or to ‘get a referral to a specialist’. Or, more complicated such as ‘a change to medication’ or ‘get an explanation on a report’. Be realistic in your choice. It helps to decide your goal or target before you tackle self-advocating. Sometimes it is better or easier to have a close friend, carer, or relative advocate for us, we may be ill or too weak or disabled to be able to self-advocate in which case perhaps suggest they read this post or share the information with them to help both of you advocate successfully. Being disabled or ill with a condition can mean we feel very vulnerable and unable to support ourselves effectively in what can seem to be a very stressful situation like a doctor appointment. That is when preparation can be key to feeling like we have achieved the best. Sometimes we may lack the confidence we need to make the best decisions and that is when learning as much as we can about our disability, condition, or mental health issues really can reap benefits. Here are some strategies to help you effectively advocate for yourself: 1. Educate Yourself * Understand Your Condition: Research your health condition thoroughly. Use reputable sources such as medical journals, trusted health websites (like Mayo Clinic or WebMD), and patient advocacy groups. * Know Your Medications: Learn about the medications you're prescribed, including side effects, interactions, and the reason for taking them. 2. Communicate Clearly * Be Honest and Open: Clearly describe your symptoms, concerns, and how you're feeling. Don't downplay or exaggerate your condition. * Ask Questions: If you don't understand something, ask your healthcare provider to explain it in simpler terms. Questions like "Can you explain that again?" or "What does that mean?" can be very helpful. 3. Be Organized * Keep Records: Maintain a detailed health journal with your symptoms, medications, and any changes in your condition. Bring this journal to your appointments. * Prepare for Appointments: Make a list of questions and concerns before each visit. Prioritize the most important issues to ensure they get addressed. * Take Notes: During the appointment ask if you can take notes so that you remember clearly what is said, or ask a friend or family member to come with you to do this so you can concentrate on what is said and carefully choose a reply. 4. Build a Support Network * Bring an Advocate: Consider bringing a trusted friend or family member to appointments to help you remember information and provide emotional support. * Join Support Groups: Connect with others who have the same condition. They can provide valuable insights and support. 5. Know Your Rights * Patient Rights: Familiarize yourself with your rights as a patient. This includes the right to informed consent, the right to access your medical records, and the right to a second opinion. (not applicable to all countries so please check yours!) * Insurance and Coverage: Understand your health insurance policy, what it covers, and your rights regarding appeals and grievances. If you are in a country that does not routinely need health insurance then look at the applicable information such as ‘PALS’ in the UK,  * Research your Doctor: hospital, or clinic. Know what they can and can’t do for you. Look at their website and read all the information there to familiarize yourself with their stance. 6. Be Assertive, Not Aggressive * Advocate Assertively: Assert your needs respectfully. Use “I” statements like “I need more information about...” or “I’m concerned about...” to communicate without seeming confrontational. * Be Polite: use please and thank-you when needed. * Set Boundaries: If a healthcare provider is dismissive or not listening, it’s okay to seek a second opinion or switch providers. 7. Utilize Resources * Patient Advocates: Many hospitals have patient advocates who can help you navigate the healthcare system. * Online Resources: Use online tools and resources for additional support, such as telemedicine services or patient advocacy organizations. 8. Follow Up * Clarify Instructions: Before leaving an appointment, make sure you understand the next steps, including any follow-up appointments, tests, or treatments. * Monitor Progress: Keep track of your progress and any changes in your condition, and report these to your healthcare provider. Use that journal to keep notes of pain or mobility and your condition. 9. Self-Care and Mental Health * Take Care of Yourself: Maintain a healthy lifestyle, manage stress, and seek mental health support if needed. * Mindfulness and Relaxation: Techniques such as mindfulness, meditation, and relaxation exercises can help manage anxiety related to health issues. Conclusion Advocating for yourself in health matters involves being informed, organized, and assertive while maintaining respectful communication with healthcare providers. By taking these steps, you can play an active role in your healthcare and improve your overall well-being. But. . it isn’t always easy, in fact it can be quite challenging at first. It also takes a strong will to advocate and when we are facing a health problem that can be the last thing that we want to face.  Thoughts For You: ✅ Please share with us your experiences of self-advocacy. ❔Have you tried it, how did it work out? 💡  What tips can you share to help others have a better experience, please share them here. 💭 Might you try this approach in the future?

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
Group Support Mentor / Teen Star