Joy Connectedness Mania Burned

Somewhat Briefly

(my words aren't exactly working, so please bare with me)

I've got innumerable crazy good things going on here back at Nursing Home Headquarters


The appointment with the neurologist went well (tests scheduled).. not all that physically taxing either.

My Medical Advocate listened-in (contributed) during Thursday's office visit (she's been a REAL find).

I am spending upwards of seven peacefully quiet hours per day outside in the courtyard.

I'm clean (many showers.. tolerating well).

I made a guy friend here.. gonna teach him how to play ukulele.

My recovery time from physical exertion still runs 5 to 6 hours (before muscle strength returns to baseline), but I've decided to push through, not allowing the exhaustion to interrupt my outdoor time (would rather pass out in the quiet 80° than deal with the internal noise).

And I keep having these notable interactions with others..

And I can't quite explain with words (even having written several thousand). Really. It's some kind of joyous otherworldly "something" that's beyond my ability to comprehend. That's one of the reasons why I've not been able to blog of late. I do not know how to explain things as they currently are, or even if I should. I'm experiencing this weird connectedness with at least one individual daily.

Okay, next…..

Under Influence, Under Sun

Mid Saturday morning, 17 minutes under the sun I spent.

Hooray, right? At long last, Vitamin D!!!

Sunday and Monday and most of the day Tuesday. A little red, my skin became, but my discomfort was next to nil.

Tuesday night. Pain. Everywhere. As though I was physically bruised and battered. Angry red, skin sweltering, hot to touch and baked thoroughly through I could not fend.

Oddly, no treatments available besides A and D ointment and a singular ice pack (apparently we have an ice shortage here in the desert.. which somehow makes sense). Then the following day (by my own recognizing) I discovered that I had Hell's Itch. Yes, that's what it's called. And according to the internet….

Hell's itch is a rare, extremely uncomfortable response to a sunburn.

Dr Rekha Tailor, a skin care expert who runs Health and Aesthetics, told The Sun: "We all know that the sun’s ultraviolet rays can cause serious damage to skin.

"Sometimes sunburn can escalate to a condition called ‘hell’s itch’.

"This is an extremely rare reaction which occurs approximately 48 hours after the sunburn has taken place and it will last for a similar amount of time.

"It’s basically a severe and uncontrollable itch which can also feel like pins and needles.

"It can feel incredibly painful and whilst there’s little research about it sufferers have reported that it feels like there’s a fire underneath their skin."

So, hooray for me!

Today, finally, it wasn't so bad. The pain and itching subsided (despite the nursing staff having been unable to treat me - besides refreezing and re-using that darned lone ice pack!).

The lesson? Don't be me 17 minutes under the sun six long hellish years after having had absolutely none.

Not Really Mania ----

I unleashed an impromptu comedy stand-up routine (while laying down on the stretcher) at the neurologists office today in front of a partially captivated audience (in the reception area).

It was like, bam, bam, bam! Ceaseless riffing on this and that while repeatedly hitting on the ultimate perfect best answers to questions unasked and innumerable comebacks outwardly flowing followed by rogue commentary wrapped around deft phrases aptly construed ------

Yeah. That's how it was and how it's been. Each day, a similarly improvised event, an internal back and forth experienced outwardly by another or other human members gathered.

And what this is, and what these are, I think ... are bouts of total clarity in purpose without design. It's my mind flowing unimpeded by contradiction, a succession of internal agreements, a cohesiveness, machinery perfectly in sync for fleeting moments in times of grace.

These experiences seldom do occur, perhaps once yearly and possibly twice at most. But not daily like this.

And that's the best I can explain what's now happening. With words I am trying, and with words I am falling short. It's as though there's this incredible intensity in experience. Nothing missed. Everything gained.



Thats wonderful news, the appointment went so well.

Can you tell us more about Medical Advocate and where did you find such a person.

I take it the 7 hours outdoors was not "in the sun" per se! Yes gotta watch that a bit. Outdoors is still outdoors.

The sun itch symptom- how intriguing. Thats a new one here. Having worked professionally in "the outdoors" I was once famously involved in a severe sun infection incident. This is when your coworker swells up from the first eight hour day of work at an elevation of 4000 feet and sun screens actually did not exist at that time.

She was sent to hospital and spent many days all swollen up. And the whole office heard. that "one of the two new gals got a really bad sunburn" on day one of work. They all figured it was me, the red head.

But no, it was the brunette, of Albanian descent, who normally lived in. very foggy place.

Decades later I developed the sun screen allergy, which causes one to turn bright pink all over and flushed and your skin is all hot and feels like your gonna boil over. Can illicit a sudden onset-Panic Attack.

Regarding the Mania, I think you've done an outstanding job describing it there. And the grace part.

I got out of my space for a two hour field trip on Wed. Very disorienting. Still processing and downloading those stimuli. (and cellular waste products)
Glad that things are moving along for you @Howard. You're enjoying your time outdoors (minus the sunburn and follow-up) but it's good that you've found a spot in the shade where you spend time.

Don't we just take things like that for granted? The simple act of going outside....I think it's one of the reasons we live outside when we can. That sense of freedom.

I may be wrong, but you seem to like having people around you. After being basically alone for so long, I'm impressed.

Too bad about all of the noise as that can make life miserable....especially when others (Jeff) can't respect ordinary house rules but act like a 4 yr. old instead. I wonder where his mommy is?

I'm glad you're there at this time of year so that you can enjoy the best of what Phoenix has to offer weather wise. Yours, Lenora.
Can you tell us more about Medical Advocate and where did you find such a person.
As I understand it, someone on here knew somebody, who then asked for help in a support group (on my behalf). And then everything somehow fell into place, and continues doing so. And I honestly do not understand how any of this is happening…

She's just a normal person who has had similar difficulties as I (and still does), but is far more knowledgeable in regards to neurological concerns (she doesn't have CFS/ME).

And yeah, I've never had any kind of reaction to the sun, but it has been 33 years since my last sunburn.

I may be wrong, but you seem to like having people around you. After being basically alone for so long
Yeah, the relations I am having with people right now are very … I cannot even come up with the words. There's just all of this substance and depth, or sometimes it's a matter of nothingness and joy.

And it's only with those who are engaged and present that there's active participation. And I can easily identify who they are, straight off. Sometimes I am able to convert them into being a mindfully aware person.. at least, temporarily (but I enjoy the challenge).

There are so many possible ways to engage others, and I never knew or realized any of this prior to my becoming ill. This is a whole lot of fun. Options, variety, and even some worthy challenges.

Band-Aid Brand First Hurt Free
Yes, "Hurt-free" is good! Fortunately, I'm in the final stages (I hope), as now it's just normal itching and splotchiness. If I do not acknowledge the itch, it eventually goes away. :)

I am not The Itch. And neither am I The Illness.
Yeah, the relations I am having with people right now are very … I cannot even come up with the words. There's just all of this substance and depth, or sometimes it's a matter of nothingness and joy.
Aww, this is such a beautiful change from where you were over a week or so ago. I'm just so happy for you, @Howard. It's also great to find another blog post from you. I'm sure we've all been looking so forward to it.

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