I’d love you if you were a lobster

Please Note: I thought I was posting this to my blog Everyday Aspie. After I posted it here, I decided to keep it up. See more recent blog here.

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?

End Post

 

Random Facebook entries, from last 12 days, listed below. Not meant for entertainment.

April 2nd:

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

April 5th:

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.

April 7th:

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.

April 8th:

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.

April 9th:

Update:

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.

Kind regards,
Sam

April 10th

Status:

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.

Kind regards,

Sam

April 14th

Update:

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.

Best,
Sam