Coronavirus Disease 2019 (COVID-19)

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Im 51, had both knees replaced before I was 50, and 31 other major surgeries. I was having pain in my left hip for over a year and decided to go see my joint replacement surgeon. On Friday, June 19, 2026, I was advised both hips desperately need to be replaced. It made me very sad. I’ve since had 4 more surgeries, so I stand at 35 major surgeries u der the belt and my first hip being replaced Aug 13, 2026. I was supposed to go see my elderly father in September (an 11 hr car drive) and my 30 year old daughter (who unfortunately is following right in my broken body’s footsteps) were going to make the drive. Now that surgery has been scheduled, I have to put off seeing my dad. I hope and pray something doesn’t happen in the mean time. He’s 83 and his health is not good. He mentions every single day how hard it’s getting to do the simplest things and he’s “running out of time”. When I was 3, I started having physical issues, and was misdiagnosed with juvenile osteoarthritis. I was told I would outgrow it, but the knee pain never went away. As I previously mentioned, both knees were replaced before I turned 50. With my hips, I honestly was looking for a time frame before I needed to replace them. The pain has been getting bad over the last year. So when I saw my joint replacement surgeon, I was in shock when he didn’t give me a time frame, but said both hips desperately needed replacement. Two spinal fusions, thumbs are fused, prior my had my tibia nailed after a serious break, internal surgeries, chronic migraines, ME/CFS, POTS, heat intolerance, and a myriad of other health issues…. hEDS has destroyed my body and me feel like I was 81, not 51. I should be thoroughly enjoying life at my age, and for the first time in 7 years, I finally able to get out of bed. I got diagnosed with CFS when I was 15 years old, back in the 80’s. I’ve lived with relapses throughout my adult life. I caught the original form of COVID back in January 2020, and have been in bed since. Often too tired to hold a conversation. My mother, who had lung cancer, was coming once a week from 50 miles away to help me, with my house, do my laundry, and cook for me. As guilty as I felt, I couldn’t control anything. After nearly 7 years of trying different supplements, I’ve found about 30 different ones that I take each day, and I’m now able to get out of bed, run an errand or two, get a grocery pickup order when necessary and go to Drs appointments. I e been disabled since 2010, and for the first time in 16 years, have a teeny bit of energy that I’m more than grateful for!! I do feel like everyone had moved on, I e list all my friends, bc once you can’t join theM anymore, they tend to forget about you. Most of my family doesn’t understand what I’m truly going through, and my sisters say I just need more sun and exercise, to get out of depression. They have no idea. My mother, now my father, and my daughter who has inherited everything wrong with me are the only ones who understand. But, I’m here to say, that things can look up, even after all this time. Even though both hips are getting replaced now, after both knees and 33 other major surgeries, I have a little bit of energy. This is more than I could say since 2009. So, I wish everyone who is struggling like myself, to know that someone DOES understand, and my heart goes out to you. And maybe, just maybe, things can start looking up, even at the darkest of times. Love to all my zebras 🦓❤️


#EhlersDanlosSyndrome

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I’m new here!

Hi, my name is MHeyman74 I have been diagnosed with Long Covid. I’ve now developed PTSD, anxiety, depression, POTS and various other symptoms related to the Long Covid diagnosis . My psychiatrist, psychologist and Long Covid doc recommended that I look into a support group. Any help or feedback would be greatly appreciated. Thank you!
#MightyTogether #PTSD #Anxiety #Depression #Grief

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How would you describe your overall experience with long COVID?

Experiencing long COVID can be confusing, frustrating, and disorienting—especially since there’s still so much to learn about navigating its fluctuating and sometimes unpredictable symptoms.

What has your experience been like? What symptoms have surprised you the most? What information or guidance has been most helpful for you?

#longcovid #COVID19 #CheckInWithMe #Spoonie #ChronicIllness #PosturalOrthostaticTachycardiaSyndrome #ChronicFatigue #Fibromyalgia #MentalHealth

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Tell me it gets better

Please tell me there are more people that have experienced this because I feel like I'm getting insane...

I'm anxiously attached, but living a good life with my boyfriend. 6,5 years relationship, dealing with my anxiety and other issues as well, so no great intimate life - but still happy together, buying a house, talking about the future and kids.

Then I got ill. Burnout - but the kind where both anxiety and physical issues were extreme. And later I got also diagnosed with long covid, ánd I got an ADHD diagnosis.

So it was hard, my boyfriend didn't really know how to cope, but I got better and better because I finally found a therapy that helped - until I had a total relapse due to circumstances. And then he lost faith. He was about to turn 30 when he told me he had serious doubts about our future, if I wouldn't relapse when we had kids, it didn't feel like a love relationship anymore.

My body completely spiraled. I asked him through a letter to either stay, find an emotional outlet, and be a team - or go, because the inbetween made my body feel like it was in mortal danger. He said he stayed.

But his words didn't match his actions. I became hypervigilant, which means completely focused on his mood, and in the meantime he got more depleted, more stressed, more injuries, sick more often, and didn't feel like doing stuff anymore. His words said yes but his body said no and without wanting it, my whole focus shifted from "wanting to get better" to "wanting to get better to not lose him". It was the only thing that drove me, literally. I tried everything I could to learn how to feel safe within myself but my nervous system refused.

And then 8 weeks ago he broke up with me. And I've never felt this awful. Dreadful. Terrified. Unsafe. Overwhelmed. With nothing to live for, because the only thing I lived for - our future together - is gone.

I don't know how to cope. I've learned so much in therapy but I'm só low that I cannot apply anything. After 8 weeks I still feel like I'm dying. Please tell me I'm not the only one dealing with something similar - and please tell me that it actually gets better.

Because I'm exhausted. I fought for my health, my mental state and my relationship every single day for 2,5 years. And it got me rock bottom.

#RockBottom #breakup #Hypervigilance #Anxiety #anxious #relationship #ChronicIllness #longcovid #Burnout #ADHD #illness #Burnout #lowselfesteem

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# Does it get better

I have been on the couch, totally unmotivated to properly function for, well, since Covid. Then my boyfriend died over 3 years ago and I miss him terribly. I’m 72 and lost.

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Disability And Nuerodivergent Definitions

Body Doubling
Body doubling is having another person present to support focus and task completion, and is common among ADHDers.
Body doubling is a strategy where another person is physically or virtually present while you work. Their role isn’t to supervise or direct, but simply to be there — an accompanying presence that can support focus, motivation, and task completion.
For many neurodivergent people, especially ADHDers, another person’s presence can act as an anchor. It can make starting tasks feel less overwhelming, interrupt cycles of distraction, and help mundane activities feel more doable. Body doubling might look like working beside a friend at a coffee shop, having a coworker on Zoom while you each focus on separate tasks, or joining a virtual coworking space where others are doing the same.
Body doubling is sometimes misunderstood as a crutch. In reality, it reflects how interdependent people are. Rather than pushing through alone, it recognizes that many nervous systems feel more supported and regulated in connection with others.

Brain Fog
A state of mental clouding that can affect focus, memory, and clarity, often tied to overload or fatigue.
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Brain fog refers to periods of mental sluggishness or confusion, when focus, memory, and clarity feel harder to access. It’s often triggered by cognitive overload, stress, or exhaustion. Brain fog isn’t a clinical diagnosis, but a widely used term for experiences like difficulty concentrating, forgetfulness, slowed thinking, or feeling mentally disoriented.
Brain fog is commonly reported during or after neurodivergent burnout, executive functionoverwhelm, or sensory overstimulation. It’s also described in connection with a range of medical conditions, including:
• Long COVID
• Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
Fibromyalgia
• Hormonal fluctuations (e.g. perimenopause)
• Side effects of medication or sleep deprivation
Episodes may last minutes, hours, or days, and can interfere with work, communication, and daily functioning. Brain fog often overlaps with fatigue and deserves attention, especially when it becomes chronic or persistent.
Burnout
A state of nervous system burnout that develops from chronic overload and ongoing mismatch between neurology and environment.
Neurodivergent burnout is a state of chronic nervous system exhaustion that develops after prolonged cognitive, emotional, and sensory overload — especially in environments that don’t align with a person’s neurological needs.
It often grows out of masking, over-adapting, and the ongoing effort of navigating systems rarely designed with neurodivergent brains in mind. This isn’t just feeling tired. It’s a more global collapse of capacity, affecting the body, mind, and nervous system.
Burnout typically involves three overlapping clusters of experience:
Fatigue — a deep exhaustion that rest alone doesn’t resolve
Sensory overload — heightened sensitivity to sound, light, touch, and other input
Loss of skills — reduced capacity for communication, executive functioning, or daily tasks
Burnout often includes brain fog, increased sensory meltdowns or Sensory Shutdown, speech difficulties, and a decreased ability to mask. For some people, this is when underlying neurodivergence first becomes visible, leading to identification as Autistic or ADHD.
While neurodivergent people are especially vulnerable because of ongoing environmental mismatch, burnout is becoming more common across the population. In a culture that undervalues rest, regulation, and natural rhythms, neurodivergent people often act as the “canaries in the coal mine,” showing what happens when systems push beyond human limits.
Recovery usually requires more than rest alone. It involves nervous system repair, sensory regulation, supportive environments, reduced demands, and a deeper alignment with one’s actual needs.

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