Life lately is a shit-muffin. Which reminds me. I had my first ever slice of brown sugar pie, as an Easter (curbside order) treat, and declared that it’s officially my least favorite dessert, hovering at the bottom, below banana cream pie. Oddly, on Easter Sunday, while sitting on the balcony by myself, I saw a convertible, with the top down, drive by our typically quiet, circle-shaped street. In the backseat of the convertible was a person in full Easter Bunny costume. I wished they’d driven around the circle again. A parade.
I have lost count of how many days have passed at home. I read a creative news article about 100 things someone is doing at home during this ‘shelter in place’ order. It made me feel inadequate. Each time the list mentioned children, I felt sad. My list would be short. Eating, resting, napping, and not much more. I guess ‘getting better’ is enough. Even it it’s one thing.
I have energy to write this blog post, only because I downed a large cup of black gold (cup of Joe) at 3:45 p.m. Pacific Standard Time. And I am gladly stimming through editing and rearranging words and thoughts, like a non-dimensional puzzle.
I am still very much fatigued and too tired to look for strong adjectives.
As of late, first thing most mornings, I kindly instruct David to announce, “Hey, Google. Turn Off,” in order to dismiss the white noise of the river rushing. I don’t want to exert the energy to raise my voice.
This morning, I texted David and asked him to bring me a cup water. I don’t remember if I texted ‘please.’ I was too wiped to reach over and drink my green tea (that he’d made for me). I cursed my computer charging cord that rested too far out of reach. Later, upon submitting to coffee cravings, I joked with David: “Remind me at 11 p.m. tonight, when I complain about not being able to sleep, that I had coffee after the noon hour, and that it is okay to watch Netflix on low volume, while you sleep.”
Despite my fatigue, I am still a planner.
Later, I sent him a short apology-text. Making amends for my PMS-perimenopausal-cooped-up-sick-for-too-long-during-global-pandemic freak out. I included a cute emoticon.
My emotional reserves are on extreme low. My typically lousy memory is below par. I am easily lost in thoughts. I forgot about my dog Violet this morning. I dove into a few hours of work. Having promised myself to not work more than two hours, I worked close to four. Not a good idea. And now, know clearly that over three hours of remote-work not only exhausts me, but makes me have no scruples (or patience for other human beings).
It slipped my mind to take Violet out for her early morning ‘outside potty’ time. She was still fast asleep, in her dog bed, like a doggy princess, hours into the day. I am thankful she is almost thirteen (or fourteen) and sleeping in.
To enhance the story, below is a fair visual representation of what Violet’s bed looks like. It was the first image that popped up when I Googled “Image of Round Wicker Chair.” And happens to be the same color. I’ll take that as a sign from God that I am meant to write this downer of a blog post.
To be clear, Violet’s bed is more velvety (and stinky). I originally bought this lounging chair for me, to relax on the balcony. It’s been Violet’s bed pretty much since I brought it home. Every night, after David and I have been watching a television show for at least 30 minutes (typically 60), Violet creeps out from under the bed like clockwork, to the outskirt of the bedroom, and proceeds to pace back and forth (tap, tap, tap), on the hardwood floor, waiting to be ‘tucked in.’ I then get up (growl), walk over, firmly ask her to sit; then I scoop her up like a baby, tell her what a good dog she is, and put a blankie over her. She recognizes many statements– ‘tucked in’ being one of her favorites.
This is our routine. If I don’t ask her to sit, as soon as I rise from the comforts of resting, she scampers back under the bed, as fast as she can, and then wags her tail in triumphant delight. It’s gotten worse, now that David has established himself as alpha ‘dog.’ It’s a game of ‘catch me if you can.’ A game David doesn’t care for much, and one of the primary reasons she has earned her new nickname. A name recently granted by David. I won’t tell you the whole name, as it might embarrass Violet (and David). But it’s blank-muffin. You can fill in the blank any way you wish.
I was too tired to retrieve my foam earplugs for reusing; they are floating in creases of the pink sheets. I was too tired to do much of anything, except during that 30-minute adrenaline rush, when I was mad at David. It was in that mad rush that I swept, scrubbed a wall, and cleaned up the ‘Cesca Room’ — the room attached to our garage. A 200-square-foot, yellow-walled room, where my youngest son usually gathers with his friends to play Dungeon and Dragons. I glanced around the empty room, wondering when the room would be occupied again.
Noting how the simplest of memories brings an intense longing for the normalcy in the days before this virus.
I am going through a mourning phase. Like much of the world. I miss looking forward to things. I miss knowing when I can leave the house again. And I miss feeling safe in my own home. I worry each time David leaves the house. Actually, I worry each time he mentions he might, feasibly leave the house. Even when the tail end of his sentence includes the words social distancing and mask and caution. I sound like a dictator: “Remember the new findings say 13 feet, not 6!” Followed by monologue of useless chatter.
Sometimes, despite my high-risk status, I want to storm out of the house, with my N-95 mask and gloves, and just stomp into the damn grocery store.
Never one to look forward to clothes shopping (gag), I do relax by grocery shopping. All the items and all the selection, the choosing, the evaluating, the picking up and placing in the cart. That entire process, it has always soothed me. Even if I only purchase a handful of items, the mere act of looking at all the colors and choices brings me peace of mind. Similar to disaster movies. I like to think of what to do next.
I am mourning grocery shopping. And ample amounts of blue cheese. Odd that it is blue cheese I miss the most.
It took me weeks to fill out some basic paperwork for a new mental health counselor. I need more therapy. I apologized to the new therapist, I’ve yet to meet, through text, for my inability to turn on the computer. My failure to fill out the needed paperwork. She has my least favorite name (see my book) but I am willing to give her a try. We have an online meeting Thursday. Considering my last five years of living, I have no doubt I (like many autistic people) that I am a mega-magnet for narcissists. I have a lot of processing to do. I don’t want to burden my friends with my woes. Not appropriate during a global pandemic. Like the grocery store, my main go-to’s for relief, don’t work anymore.
This Sunday was the first Easter in 22 years that I didn’t make Easter baskets for my son(s). In the past years, I hid their filled baskets inside a brown grocery bag for them to take back to college and open on Easter. Taped up and secured. This Easter, I am afraid of paper bags. The site of a grocery bag (or Amazon box) makes me wonder how long the novel virus ‘survives’ on paper. Survives is in quotes, as the virus is actual dead to begin with.
I told David, on the balcony, at sunset yesterday evening, that humans are a virus destroying the earth, and it’s good we are being forced inside. I am great at ruining romantic moments.
My days are all blending into the next. I tell myself to be thankful. Hear my mother’s words echoed from my childhood: It could be worse. I am thankful I am not in the Emergency Room. Thankful my oxygen saturation levels are good. Thankful for David. Thankful my children are safe. But still there is so much loss. So much worry. So much suffering. I keep thinking of people dying alone. Of no funerals. Of things one ought not have to think about.
My POTS has triggered my neuropathy, amongst other ailments (see previous posts), and I’ve gained weight from stress eating and being less mobile. When I took a shower this morning, I looked down at my thighs and cried. When I took a second shower mid-day (to wash off 30-minute freak out cleaning session), glancing down, I confirmed it was a good plan to not eat.
When I stress about the extra thigh I’ve grown, David insists, “I’d love you, if you were a lobster.” That’s fine and sweet and dandy, and a phrase he uses often to bring a smile to my once-pouty, forlorn face. But would you love me if I was a shit-muffin?
Random Facebook entries, from last 12 days, listed below. Not meant for entertainment.
Yep. Just what I said would happen in my blog post yesterday:
“The Trump administration is expected to announce that all Americans should wear cloth masks or other face coverings if they go out in public, based on a forthcoming recommendation from the Centers for Disease Control and Prevention.” New York Times, today
After 27 days of little to no energy, and a couple weeks of being pretty scared concerning my health, this Sunday I did 40 minutes of yard work! Yay! There were many things I did to nurse myself in the last 4 weeks. I’ll likely share at some point. I will share today that boosting my immune system through supplements and minerals, and listening to my body and what foods it was craving, helped. Lots of magnesium-rich foods and protein. I ordered 5 large bags of nuts, at different times, while I was not feeling well. Didn’t readily recognize I’d ordered that many nuts! Nutty, me! Much love, Sam
Watched the entire Season 3 of Stranger Things yesterday with J David Hall. As an autistic, I so much appreciate the humor, parallel plots, and the detailed settings.
Crushing chest pain, shortness of breath, fatigue, came back Monday morning. Really wish this thing would pass. Lots of brainless reality television for me, as I lie flat on my back. Even so, thankful for so much — like a comfy couch and Internet and popcorn. And for my work partner Carrie picking up the slack! Much love to Heather, another work team member, who I’m sending extra warm fuzzies to, during these hard times.
Thank you for the encouraging thread. It was very validating.
I’ve been following my intuition, since I got sick over 4 weeks ago. I was doing better for a couple days and then had a relapse with shortness of breath, shallow breathing, crushing chest pain, and fatigue returning.
Some of the information that was posted in the thread below this (on m Facebook wall) by community members (thank you), confirmed I am doing many things that are recommended.
When I stopped doing most of these things listed below, as it was over three weeks and I was gaining ground (on Sunday), by Monday I regressed. I am back to my routine again.
1. I only took one Tylenol at the start and did not take any other over the counter pain killers, to let my body have a natural temperature and to not suppress my immune system, nor tax my liver or kidneys.
2. I take a deep breath of outdoor fresh air, and vitamin C and vitamin D, when I wake up, and repeat the C twice more in the day.
3. I take zinc.
4. I ordered an extra nebulizer (for my asthma) 4 weeks ago, thinking there would be a high demand. And I use it daily, as needed. I think I will use it a bit more, as a preventative.
5. I shower at least once a day for steam and to cleanse my body.
6. At night I brush my teeth and gargle and apply tea tree oil on my nostrils.
7. I sit up and if chest pain gets severe, I walk around house. (I will now do the suggested arm stretches above head and deep inhales.) Yesterday, I was flat on my back and it made it worse.
8. When it was at it’s peek, I sat up in bed and slept sitting up (with a rosary), intuitively feeling it would less likely settle in my lungs if I was upright.
9. I am using essential oils on chest to help with breathing.
10. I warm up a heating pad a few times a day and place it directly on my chest.
11. I start the day by opening windows in house and bringing in fresh air.
12. I don’t want to tax my liver, so I alternate different supplements and minerals. I have Elderberry, magnesium, fish oil, and more. I have used peppermint gel pills for tummy ache.
13. I drink hot coffee in the morning with oat milk and honey. I drink hot decaf herbal tea throughout the day. If my lungs feel constricted, I have green tea.
14. I mix turmeric with water and drink.
15. My body is rejecting dairy at the moment; so I’ve cut most of it out. It can tolerate butter.
16. I have been listening to my body’s cravings. It has been all foods with high magnesium, such as nuts, bananas, dark leafy greens, organic dark chocolate. And high protein. As I don’t eat meat, I’ve been upping my fish intake.
17. I believe there is a sex hormone link to the virus (I wrote a blog post on this) and have been craving and upping my intake of tofu.
18. I will start sitting and standing up more and sleeping less and rest on my stomach. Sunday night and Monday night I had trouble staying or falling asleep. Tuesday night, when I got a full night’s sleep, I felt worse.
We believe a virus triggered my POTS, Ehlers Danlos Syndrome (ribs easily slip out of place), Stage-4 Endometriosis, and asthma. Won’t know if it’s Covid-19, until tests are widely available and risk of leaving home is decreased. This is week 5 of sheltering in place and being unwell. I start to get some relief and then the pain comes back.
Doing better today. Less dry cough and less shortness of breath. Got a break from crushing chest pain this afternoon. Yay! I have not had mucus. Yesterday morning was scary, as I awoke feeling like I was breathing through a sheet. My inhaler helps.
Lovely sunshine in the Pacific Northwest. Grabbing my outdoor vitamin D amongst the birdies bathing and flying about in our front yard. The fresh air and bright blue sky helps pain levels and mood.
My former husband, Bob, and I spoke on the phone, and he was thankful that he found some face masks in his bathroom– masks that I’d purchased many years back!
I am fortunate in that I have a lot of sick days and vacation time saved up, and Ultranauts Inc. is offering Covid-19 sick days, including for anxiety related to the virus outbreak. Also, my work with recruiting and neurodiversity outreach aren’t a necessity at this time.
This time at home has confirmed that I am right where I want to be. I adore David to no end, and he treats me extremely well, with the upmost respect. I love my sons, dearly. I am not upset in the least with all the canceled trips and appearances. Extremely thankful for the simple things. I do get emotional and cry when I think of all the suffering in the world. I have a strong faith and hope that we will all get through this.
Wherever you are, I hope you are well. Please take care of yourself. Thank you for the community connection. Keeping you in my thoughts.
Thanks everyone for your comments. I took them to heart and into consideration. Today I am about the same. POTS is a bit worse.
I was able to type a document today. Fairly certain I am experiencing chest pain (as in the past) from slipped ribs from Ehlers Danlos Syndrome and crushing chest pressure from POTS flare up, breathing issues from asthma, digestive issues/neuropathy from POTS.
I don’t feel like the breathing issues are getting any worse or due to a virus growing. It’s been 5 weeks and I think I’d be far worse by now, if that were the case. Instead I seem to be about the same, get a little better, have a set back, then return to about the same. Dairy remains a huge upset to my system.
My fluctuation in hormones (being 51) isn’t helping matters, as the asthma and chronic health conditions are affected.
Our best, educated guess is I caught a virus that triggered everything, and now need to work through the chronic pain flare ups to get back to equilibrium.
Ongoing (for months) emotional stress from a source I cannot control (that I won’t get into for privacy reasons) is not helping. But we are working through with a supportive professional, and that is helping tremendously with the issue.
Feel free to let me know how you and yours are doing below. Wishing you, as always, the very best. Thanks for being you. Stay safe.
Lovely sunshine this week in Olympia, Washington, USA. I am working remotely, about 1 to 2 hours a day, and resting the remainder of the day. I had a 50-minute phone call with work team yesterday, which resulted in a 2 hour nap. So still have a way to go with energy levels. I am able to do about 30 minutes of chores/tasks at home each day. Lots of fatigue, but my chest and back pain are decreasing. Sleeping better. I have to limit executive functioning tasks, as I am finding it hard to do things such as turning on computer, paying bills, opening mail, etc. My oxygen saturation level was 99% on Saturday and shortness of breath is less frequent. Resting pulse is elevated, from POTS. Digestion improving! Thank goodness. Less nightmares. Home is peaceful. David is extremely supportive. Violet (dog) is still neurotic as ever, and David has made up a new (not-so-kind) nickname for her. Baha!
I hope you are safe and well. Much love.
11 thoughts on “I’d Love You If You Were a Lobster”
Dear Sam, You are a real trooper, blogging in a way so helpful to others in myriad ways. I would like to give you some info that might ease some of the symptoms you’re describing, things I rely on as well. They are Far Infrared Heating pads – much better than regular ones we all know. Amazon sells a variety that I’ve tried, and the only ones worth their salt are made by UTK. They employ small round stones that give off much deeper heat – 2-3″ – into muscles (jade, tourmaline) embedded in a matrix (especially the soft cloth one) you can sit and lie on, wrap and also cover your chest with. No EMF. Variable heats, longterm time settings. Very relaxing, far more effective than the, by now, old fashioned kind. Here’s the link. Picture wouldn’t copy, just go to site….
(Amazon): UTK Ultra-Soft Infrared Heating Pad for Back Pain Relief, Flexible Far Infrared Heating Therapy for Shoulder and Cramps – 16″x24″ Size, EMF Free, Auto Shut Off, Adjustable Temp and MEM Function
Best, Robin Birdfeather
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I have a far infared sauna! 🙂 thank you for taking the time to write. Hello Robin!
Thank you so much for sharing!
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you are welcome
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if I listed 100 things I am doing during shelter in place I would bore the crap out of people. Trying to get the dog out from under the bed would be on that list though. Right next to picking up sunflower seeds from the floor. And it would directly follow, learning how to cut a piece of bologna into 100 pieces in order to make it more appealing to my dog. I am inviting you to check out my blog about having Asperger’s. I share excerpts from my book of memoirs.
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Ok, lol I totally text “Water” and thats it- a lot. You just described my entire low hemoglobin- ferritin of 1 levels. This is my energy every day- Yay! And yup my tea is simmering next to me too and I text a kid to come plug in the cord:) Lol ahhhh kids ….luckily they understand! I could relate to that part a lot. I am sorry you are feeling so sick though.
Guess what?? I finally got Zoom. I still don’t know how to use it but if you want to do that call we could look forward to that! I also have Facebook!
I am currently watching “One world Live” with Lady Gaga for the next few hours…and I have to say even though I am so glad I am Canadian and do not envy America, One world truly makes Americans look amazing tho.
I get stressed cuz people around me think its a joke or worse a conspiracy – they don’t stay 6 feet away ( they think even 3 is too much) and they complain about everything that is closed. Everyone treats my husband like a joke or freak when he goes out wearing his mask. They laugh…even though there ARE cases here although its worse in the nearby city times a ton!
I would die if I got it due to my low oxygen. And as you know – being autistic – it would not work for my children to be isolated… Its hard.
I admire that you did it…I would completely feel dead.
If I don’t see this and you want to set up a time- email or text me…!
Until then- enjoy your muffin. Teee heee he
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As soon as I’m feeling more energy, Zoom is in order! ❤ thanks for the note on how you are doing. I posted on Facebook (which you don't have) my latest update: here it is:Health Update:
I had a productive weekend and am glad to be able to reduce anxiety through my rituals of cleaning and organizing!
I pulled 500 weeds in my front yard. Feeling thankful for rich, loose soil of Washington, unlike, hard clay soil of Northern California! And, after counting weeds, I recognize I really ought have an official OCD diagnosis.
I am now able to work up to 10 hours of remote-work!
Executive functioning is still not up to par, estimate 65% functioning level, give or take 10%.
I went to health clinic on Thursday, after co-workers made me promise to go get checked out. (My cough scared them.)
On Thursday, from the seat of my car, in the clinic parking lot, I was screened for Covid-19.
After my nose swab test, which is terrifying in and of itself, I was given a pink admittance card, which meant I had health conditions deemed worthy enough to be seen.
Inside the mostly abandoned clinic, I had my 3rd EKG (all good), 2nd chest x-ray (improved), and blood work.
The receptionist guarding entrance to x-ray tech. wing was super sweet, and super dense when it came to autism.
After finding out what I did for a living, that is recruit autistics to work from home as software testers, she said, "That's so good of you." In this sappy, I am doing charity-work-congratulatory voice. I clenched my teeth and took deep breath, when she added, in a poor-thing tone: "Everyone deserves to find something they can actually do."
I decided that being there was a world pandemic that it wasn't the time nor place to spread understanding about the autism spectrum, nor to state I was autistic.
I just smiled in response, and then turned my attention back to the random cooking show on the waiting room television. Something airing about paper plates and durability. I glanced at the well-groomed lady holding a flimsy plate loaded with pork and beans, ribs, and potatoes-mashed. It slid off onto the table. Last in the rankings. I thought to myself, it's really not the time and place to be rating paper plates. I also thought, I'm truly not American, as I don't eat pork and beans, or ribs. I thought a fish taco would likely do fine on that plate and that Americans, as a collective, need to eat less.
*Slipped ribs (3)
*Caught some virus that gave me bronchial asthma
*Sinuses greatly inflamed from seasonal allergies which is exasperating bronchial asthma
*Low on iron
*Extremely low on Vitamin D
Of course, this combo basically mimics Covid-19: crushing chest pain, dry cough, shortness of breath, extreme fatigue.
Best part about trip ….. (wait for it!)
The nurse practitioner who treated me was the kindest, most thorough health professional I've ever met. So much empathy and attention to detail. I even told her she was my favorite.
Turns out, that I find out, just as we are leaving the treatment room, that the nurse was diagnosed with Aspergers and has read my book!
The whole visit made me feel so much better in general. She even knows what POTS and Ehler's Danlos are! Understood about my pulse and blood pressure results!
Nurse also had slight asthma, and truly reassured me (as only an autistic can) that she doesn't think either of us are in the high-risk category for Covid-19, that only severe, chronic asthma sufferers are.
This new sense of hope, and connection with a fellow autistic, enabled me to go to the grocery store for myself, for first time in over 5 weeks!
Which meant I felt like I was in a candy store on a different planet, and was able to choose anything I wanted to eat! Blue cheese was in order…. I was so much craving blue cheese. And wouldn't you know it, blue cheese has many health benefits!
Anyhow, I am too tired at this moment on making this update super interesting or editing to no end.
In closing, I hope, wherever you are, that you are safe and well.
Much love, Sam
(My novel virus test results were again negative. This time test results took less than 24 hours, instead of 9 days. I have my own opinions about the validity of the tests based on extensive research.)
Oh my word! First off 500 weeds!!! ? Next – I have had experiences like that with condensation from professionals and it’s so aggravating! I’m so sorry but I’m glad for your other experience ♥️That’s amazing ! But 3 misplaced ribs ? Gosh you sound like me! I know what low iron is like and apparently most autistics have severely low vitamin d ! I’m curious about your blood pressure as I have different readings too – I’d love to chat about it when we get FaceTime 🙂 Continue to get well!
STAY safe and well!!!! ❤
Nope. Nope I don’t have facebook. I have face TIME 🙂