Coronavirus Disease 2019 (COVID-19)

In September, 2023, we moved my 21 year old son into a residential life skills program for young adults with autism and developmental disabilities. It was a huge leap of faith for all of us.

Before he left, #Anxiety filled our house and consumed our thoughts. Would he be able to engage and participate? Would he handle the separation from me? Would the OCD that escalated in the wake of Covid-era isolation and its lack of supports and socialization render him stuck for hours every day? Would the staff be as wonderful as they seemed?

I told myself so many stories of what could go wrong – but I never allowed myself to hope for what could go right.

My son’s attitude about going away from home can best be described as “resignation.” “I know most people who are 21 have already gone away from their moms.”

“If it weren’t for Covid I probably would have already done a program.”

You get the gist.

Drop off was relatively quick – pull up, unload, few minutes of logistical talk with the staff, and go – he didn’t want a hug, or even to exchange goodbyes. He turned around, walked (bravely) into his new house – no tears, no entreaties to change the plan – and set off on his journey towards independence. Amazingly, I didn’t cry. Didn’t get teary, didn’t have to swallow past a lump in my throat, didn’t sob. (All things I’d done when I dropped off my daughter at Dartmouth six years earlier.) Maybe it was because I got such a great feeling from the staff. Maybe it was because he didn’t cry. Or maybe it was because I was ready – even if we didn’t know if he was.

Almost immediately my son was happy. He was engaged, comfortable, learning life skills and building independence, starting to form peer relationships. The staff turned out to be extraordinary. And he handled being away from me like a champ. This allowed for an incredibly positive anxiety-to-freedom ratio for me. Suddenly, my life was mine again. It became about figuring out how to fill my days, instead of my sons. Truly a transformative experience for me – and for him.

Before he went away, during the depths of his debilitating OCD (and the accompanying anxiety and depression), The New York Times Spelling Bee was the thing that initially had helped him start to recover – it became the thing that got him out of bed every day, had him smiling and laughing again, and facilitated bonding with family. When he

arrived at his residential program, he brought his love of the Bee to everyone there. The staff all became instantly obsessed with it, and it’s a constant source of conversation and connection. Every day, my son texts me asking, “did you get the pangram?” The time that text shows up lets me know if he’s having a relatively good day or a stuck one. On a recent Saturday morning, this text came through – and it’s just one more example of how the Bee is so much more than a game to us.

“Did you get the pangram yet? Good word for me. Considering I’m all grown up.” I’m not crying, you’re crying.

Now, six months into the program, he’s had his ups and downs. He’s still happy, and the staff is still awesome. The OCD waxes and wanes. Whether your kid is neurotypical, autistic, has anxiety or OCD, or is just trying to be themselves in this crazy world, this parenting gig is no joke. Elizabeth Stone said that having a child is “to decide forever to have your heart walking around outside your body.” That’s definitely what it feels like for me.

And right now, my child is walking around, hours away from me, part of an amazing community that keeps him safe and happy and helps him work through his struggles with OCD. I’m so proud of him, so lucky to have found the right program, and so thankful for the reminder that we need to take chances, push beyond comfort zones, and believe in our kids.

Since December I have began a very stressful journey of being a new me.
I recovered from laxative abuse and eating disorders which I’ve had on and off consistently for 21 years (I thought it was 19…until I did the math) scary that is!

The nurse practitioner I was seeing assured me that my problems were Fibromyalgia and that my stamina decline was likely due to Covid which I had in 2022. I honestly never thought that Fibromyalgia gets this bad. I had a mild version of it until now.
When I went to the river a while back in my chair. It was the first time being there independently since I moved back here in 2018. I never walked there once because I knew I couldn’t do it.
I rode along those old familiar paths and I couldn’t help but cry. I have memories of when I was a teenager walking my dog there every morning. We went EVERY morning. I was proud of how long I could walk. And when I went along there in my chair I couldn’t help but wonder what the heck happened from that time to now? I don’t recognise that girl anymore. To be honest I feel like I’m stranger to myself now because I’ve lost myself somewhere within those 21 years.
But I’ve decided lately that life is so worth living, I’ve decided that life is a gift!
I had that reality check when I had the kidney scare which scared me enough to recover from Anorexia.

I enjoy each breath I take now, I thank God I woke up this morning and that He was gracious enough to give me more time.
He has opened the Red Sea before my eyes so many times in my life…He is a merciful God. I don’t think we truly understand or trust His mercy because it’s beyond our understanding.

I have to come to accept new me. My painful me, my weak me…I have finally given my body permission to be fragile and it was all the more eager to take me up on that offer.

My brain still wants to do something and contribute something though. And as my Mom suggested maybe I should do some activities in town.
My town doesn’t have many activities to offer but maybe I could go with a group that has day trips? Maybe I could get out more independently and enjoy life as it is now. I feel more confident I’ll survive the trip now that I go in my chair.
My head is clear, it’s my body that no longer wants to come with me. I want to be able to do something each day, especially in winter when the days are so long and boring!

I’m just not sure how? I don’t know how to get involved with anything like that and I don’t want to be a burden to anyone. I’ve thought of going to the Trade Show this year but it’s in the arena and I’m not sure how assessable it is. I don’t want to be a bother to others and I’m not that interested in buying that new swimming pool on show. I just thought it would be something to keep my mind occupied.
Anyways, that’s all for now.
Take care Mighties! God bless! ❤️💕🦄🎨☘️

I have a rare condition where my immune system treats food as a toxin so I am frequently starving.

I had planned on being better by Xmas, you know, mind over matter. That didn't go as planned & I'm actually worse. "Friends" pressured me to come over (to my home) because I had said I'd be better by Xmas. All of them couldn't keep themselves from cross-contaminating (my daughter doesn't eat like me & her diet is cheaper than mine so that's what I'll feed people). No one ever brings anything, it's all on me to fetch guest's food & feed. The one thing I asked of my "friends" is that they not kill me, it was too much to ask so I let them all know around Xmas time that I don't want landmines planted in my home & I don't feel safe with their visits. I've summarized here. Anyway, it all went badly.

Around the same time, I ended several other friendships. All one-way relationships. I couldn't keep up with their needs. Lots of cruelty sent my way because my illness is causing all kinds of inconveniences to people.

That theme continues where I'm pissing people off. One, I CONTINUE to be sick - which is just inconvenient to people. 2, I never know when it's going to be super bad, like in bed fetal-position bad wishing I would just die - which cuts off socialization abruptly. I'm not going to make promises I can't keep so I've been distant. I just ghost. No one hears me no matter what I say.

I have a LOT of anger. These people are well. They have true friends and family - of which we have none. They have cars. And 2 good feet (I have a foot needing surgery, complete 5th metatarsal fracture & it won't heal completely - I walk on this to buy friends their meals when they have a car & could pick something up). I'm often CALLED while I'm in urgent care or in a hospital. If I say where I am, they literally don't care & go on with their needs.

I've always been the one & told who is "super strong," "capable." I've always been sick but it got so much worse after I had COVID. It's been unrelenting since then. & Then I was diagnosed with a new condition, the rare one on top of a tough condition I've had since the beginning of time.

I have good habits all around. Fitness is my passion & despite a very low caloric intake, I still workout which is crazy (because most of the time my caloric intake is very low) but on days when I'm in a lot of pain, obv I can't. I'm trying to be tougher so that I can be me again.

How do I be less annoying to people? The Normals (can eat, can eat whatever they want, can eat out)?

I hate that I am inconvenient but I never ask for help & all through this, I've only helped them. Thank you.

I have had a rough two weeks. I got covid, than our power went out for almost three days due to extreme weather, and than I got food poisoning. I think that the physical illnesses sort of triggered my depression and anxiety. And my stomach still feels weird. Taking it easy and slowly increasing expectations.

This is the only way i know to let this beast go. Lyme rage, it’s real, it’s ugly and don’t get in the path of someone with it. I’ve had Lyme 38 years, the entire time I’ve lived across the river from Lyme CT. My husband has it, even my dog does. I’m the chronic one and the one that gets repeatedly reinfected. And hitting my head. I’m at around 30 or more concussions. Lyme and head injuries are not a good mix. Neither is a Candida die off, not the three B’s but systemic Candidiasis’. I’ve been on and off antibiotics since i was a kid. I’m 68 now, my gut has finally healed but my diet is killing me mentally, no dairy no sugar no wheat says the former carboholic. Candida needs sugar to live on. She begs for it relentlessly, Candy is an evil bitch. Chills, mood changes and horrific skin rashes that smell like death no matter how much i wash.

But today the thing I’m most angry about is what my psychiatrist told me. He’s affiliated with Yale the great Lyme disease deniers and torturers of Lyme patients especially women since the test rarely works on us. For 12 years i tried to convince him Lyme was real. He went with silence thankfully and not mocking and abuse. But 3 months ago he said all of your issues are likely due to the Lyme and i have an office full of patients like you.

Excuse me, could you repeat this again. You now believe persistent Lyme exists, no test needed, symptoms obvious.

i should be happy but I’m furious. My country has betrayed me. Used me as a guinea pig in their biological weapons experiments without my permission. Dropping ticks on us out of airplanes. But the ticks hopped on all the birds that landed on Plum Island and so a pandemic began. They were supposed to ask per their own manual Title 50, Google it.

My country stole my life, my career, my hobbies, my friends and family. All that’s left is my faithful and loyal husband with Agent Orange cancer. At least they admitted to that and pay him. Me they throw $2000/ mo at and expect me to pay for my own Lyme care.

I want reparations, i want medical care. , i need a caregiver since you took away my pain meds I’m bedridden in pain. You destroyed my life and that of millions of people.

Why did things change? COvid.! Ironically Covid acts a lot like late Lyme. Fatigue cognitive changes, memory issues and the bonus hypoinflation of the lungs or shortness of breath. And long haulers are all over the place.

As far as I’m concerned the biggest war is right here in the USA and caused by them. I get nothing from them, I’m left alone because no one knows the truth unless they looked. It’s there but even the Drs don’t know. It’s so bad that they finally had to do something. There are now CDC guidelines in place for late Lyme. If you’re on Medicare you can get a full tick borne panel paid for by Medicare at a specialty lab, do it. But preferably please use the built in executioner when you’ve had enough. It will come to your head usually with unbearable pain and dare to say wouldn’t you be happier dead. My answer is no. Fuck you Lyme disease and Uncle Sam.

I’m forever a POW of the USArny’s biological weapons experiments gone horribly awry and i live in my cell alone waiting to die

Tell everyone it’s really real (even tho we knew it)

the emperor is indeed naked but the people aren’t laughing they’re crying

I have a mother who has circulation problems in her legs and kidneys Have stop functioning on their own. I have mix feelings on how to help her without getting too close. I discovered that my mother was a narcissist. It took me a while to realize this. It’s painful to know your existence was purely because she wanted to stay in this country. She raised me with unattainable demands of success. And I would have accomplished most of her ideals of the successful American life. If she had more faith -no patience. For years I walked into my adulthood feeling inadequate. Never good enough to be her picture of a perfect child. My brother and I never felt protected by our mom’. At first we sympathize with her as she made us feel like we were the only three in her life. She hardly ever spoke of her mother or father nor siblings. My father was an adulterer and abuser. Who tried to poison her when he found out she was pregnant with me. Funny thing,as my brother and I grew up and had siblings chat about trying to be good children for our mom’s. Because she had it ruff with family. That’s why she came to America to get away from them. From my father who ubuse her. Then came the story of my brother’s father. As teens we will say to protect our mother’s tainted reputation from church members judgments. We will say we had the same father. We just looked obviously different because he took after my mother. While I took on my father’s features. Until she fell in love and got married. Our step father tried in his dysfunctional ways to make us a family. She had no longer use for us. As her husband became her everything and we became the enemy. As the only purpose in her life was to make her suffer. For divorcing my father and living as a single liberated woman in the 70’s and 80’s. He fell for it and so did we as her children. She became more and more unbearable when I was a teenager as I started to see the hypocrisy in all of her actions. She will display affection only when she need something or for my brother and I to take the blame for her inability to read English. As we got blamed for all forms she sighed and deadlines she failed to finish. I grew increasingly tired of being her scapegoat. As I no longer was her heroine. She had no use for me anymore. I left and got married. My brother stayed another 20 years till he decided to m in with us. My brother and I have spent years in therapy. Trying to pick up the pieces of our puzzle life. My brother was diagnosed with bipolar and I with anxiety and depression. Both suffer from post dramatic trauma.

Now mom is a widow and at a home waiting for her. To make up her mind about getting her leg amputated due to an accident where she fractured her toes and was stubborn and did not drink her medication. Now social workers constantly calling me and telling of my mom’s needs. All of these things while I’m taking clases to align myself with a new job. As Covid changed everything. I also have my youngest son who is 32. Has disorganized schizophrenia. My son is not taking his medication. My oldest loosing yet another job again. He has two children and ask for help. Can I get a break? I know I have to be strong. I am tired physically tired mentally tired. For now I will practice self care. With talking to my therapist and my support group. Being patient with myself and dream of a vacation. Maybe then I will be rewarded with a short break.

Hi, my name is wistfulWoodrat. I've been diagnosed with ME/CFS, which I believe was triggered by COVID which I had in May 2023. I have been unable to get evaluated for long COVID or for COVID related damage. I am looking for community, for advice about monitoring/tracking, and for support in navigating the medical system.

#MightyTogether #covid-19