chronicilness

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    Community Voices

    I’m new here, but not new to the feeling 💜

    <p>I’m new here, but not new to the feeling 💜</p>
    6 people are talking about this
    Community Voices

    Remember that survival takes strength!

    <p>Remember that survival takes strength!</p>
    2 people are talking about this

    11 Pandemic Trends People With Disabilities Want to Keep

    I made it. I’ve gotten my second dose of the COVID-19 vaccine. I’ve rebuilt my business that was all but dead a year ago and paid off debts. Around me, I see other businesses bouncing back and restrictions being fully lifted. I went clothes shopping yesterday and used dressing rooms that are open for the first time in 15 months. The COVID-19 pandemic isn’t gone. There are still social-distancing markers on floors, people masked up, loved ones not surviving, and businesses that will never come back. There is much grieving to be done indefinitely into the future. But we are poised with hope and we’re earnest on moving forward. Colleges are working out what in-person classes will look like this fall, and people are returning to work in office buildings. As we gradually get back what we loved about our pre-pandemic lives, I reflect on some changes — or trends — that COVID-19 caused that I think we should keep, specifically changes that have improved life for people with disabilities. 1. Working from home. OK, so I’m self-employed and I mostly work from home anyway, but I remember the days of having to go into an office, and I would have loved to have been able to do all those tasks in my own space, which is designed around my sitting disability. There are many other conditions where working from home is the better option for people (others like me with irritable bowel syndrome, for example), and now we all have seen that, for many jobs, the exact same work gets accomplished! Also, comfy pants. 2. Food delivery and “contactless” everything. This trend was heating up before COVID hit, but boy did the pandemic set it aflame. I can’t tell you how hard it can be sometimes to just get food when my fibromyalgia and chronic fatigue syndrome are acting up. Grocery delivery, online ordering with curbside pickup at restaurants and stores, and restaurant delivery have all made life a lot easier. They’re also great options for people with mental health conditions such as social anxiety disorder. 3. Social distancing. OK, I personally love (gentle) hugs, but I also love not having strangers crowding me in lines. That kind of thing seriously bothers me. Especially if they’re gum chewers (I have misophonia). Having strangers keep their distance in public is great for people who have autoimmune conditions and also some mental health conditions. 4. Sanitizing everything. I like clean. And while I do not have a compromised immune system, several people I dearly love do. 5. Online training and religious services. Gone are the days when I would totally miss church because my fibro was flaring. Now, due to their brand-new, grant-funded equipment for “online church,” I simply curl up with my phone and watch it live on Facebook! Or, I can watch the recording later. Also, I’ve finally attended some trainings as a public official when they moved to “online only.” Before, I missed everything because I can neither sit in a chair nor stand up for the hours-long sessions. Good access means having more options for people with a range of disabilities and restrictions. 6. Time off for medical care. You know how some businesses allow employees time off for not just getting the vaccine, but for recovering from the vaccine? Yeah, that should be a thing for people getting any type of treatment that helps them stay healthy. 7. Equal access to medical care. And that thing where vaccines are free for everyone? This really needs to happen regarding any treatment that prevents people from dying, including dying from suicide. 8. Conversation about access. Making sure everyone had access to the vaccine was a buzzing topic there for a while, especially making sure people from marginalized populations weren’t left out. Let’s keep talking about this for all essential services. 9. Conversations about illness, mental health and disability. I bet a lot of people learned what “immunocompromised” means and what a big deal it is to have “underlying conditions.” Chronic illness and invisible disabilities, including mental health, are being talked about more and more. Let’s keep it up. 10. Rescue pets. Oh, I hope people do keep their rescue pets. What a miracle that shelters were cleared out during the pandemic, and these best friends seriously improve life for many people. 11. Eyes wide open. Able-bodied people have gone through some very disabling things this past year, such as fearing illness or not being able to attend events. Oh, and that horrible vaccine reaction you had, with the body aches and debilitating fatigue? That’s pretty much how I feel every day. I hope everyone remembers what all this has been like, and holds these memories up for those of us who will continue to live a disabled life, with all its complications, forever.

    Community Voices

    I've been sat here reading a few #articles on here about loneiness and chronic illness, ways to combat it like joining a yoga class (physically impossible) meeting a friend for a coffee what if you only have a few friends and they're always busy. I feel I'm the one always reaching out to do things and I'm the one that's sick for once I'd love a message of lets have a movie day at yours and chill on the sofa with snacks. I feel the more I try the more abandoned I feel, I do have a good family but that's not the same as having q partner or laughing with friends. I'm 32 this year and whilst I'm happy for the #milestones family members and #Friends reach in life each one just reminds me of how time is passing me by and I'm alone 90% of the time. I try my hardest to stay positive but at the end of the day we all need that interaction, comfort etc to #thrive more as humans. I'm just putting mt thoughts out there today as ite a sunny bankholiday in the UK amd o can't help but think of a time I would have been sat out in the sun with friends having drinks and lunch somewhere but instead I'm totally #alone .

    15 people are talking about this
    Community Voices

    Quest Diagnostics // Anyone Recieve Diagnoses from Here?

    #Undiagnosed #chronicilness #Diagnosis
    I have a Quest Diagnosis next to me where I live now (recently moved to a new state). If anyone has used this service, how is it? Did you get a test from here? Were you diagnosed after?

    1 person is talking about this
    Community Voices

    Hearing your friends stories #chronicilness

    Last year my friends graduated high school (unfortunately I failed my exams). A year went by and we decided to meet up again. Last year was really hard for me because multiple chronic illnesses stood in the way of me living.

    Don’t get me wrong, I loved to meet them, but it made me also realize how they have a life and I don’t. They have the energy to do things, they don’t have to cancel plans last minute, they are able to study and get a career and I’m just laying in bed thinking if I even will be able to take a shower.
    I just sat there, listening. I felt like I shouldn’t have been there in the room because I haven’t experienced anything besides seeing a spider on the ceiling in my room (just kidding). It did really upset me, I was happy for them, but I would have loved to be able to do things I should be able to do as a young adult.
    Did you ever experience something similar, if so, how did you deal with it? #chronicilness #reunion

    1 person is talking about this
    Community Voices

    My big "50" is coming up. I had wanted the beach in Florida. I have CVID. Flesh eating freaked me and I'm still weak, fatigued, etc.. What ideas???

    2 people are talking about this
    Community Voices

    Still Don't Know #SeekingDiagnosis

    For me, by far the hardest part of chronic illness is that, although I am SWIMMING in diagnoses, I'm still seeking the genuine cause, the underlying "Alpha"-diagnosis, so to speak. I know it will probably be generations before medical science unravels some of our mysteries, but it's so frustrating how many different"lists of symptoms" for different conditions COULD be what I have! #SeekingDiagnosis #DoTheseTestsEVEREnd ? #chronicilness #ChronicPain #ChronicNausea #ChronicallyFedUp

    3 people are talking about this
    Community Voices

    Sharing never stops feeling vulnerable

    Today I finally shared a photo from a shoot I did with my boyfriend that I've been dying to share. But I was too scared of the potential judgement and how vulnerable it felt

    But every time I do share something, it gets a little bit easier. 

    What's one thing you still want to share with the world?

    #chronicilness  #Fibromyalgia #feelthefear #AutoimmuneDisorder #Scleroderma

    4 people are talking about this