Blood Giver / Lift Me Up / Putting Her to the Test

October 12th, 2021 - 2351 hours

This was Monday (before my P.E.M. nemesis crushed me full-on into the mattress)

Mundane Morning

I suddenly came into consciousness at 4:44am for my inconveniently scheduled blood draw. Thankfully, Mr. Phlebotomist spiked me right in the wrist, piercing the vein dead center. Total success!

I had briefly used my illegally owned and operated heating pad beforehand, as a means to inspire greater blood flow and a rapid vein expansion response within the region.

They also whisked away my urine, per my original request, and much due to recent irregularities. Heavy sedimentation, kidney pain, right side only bladder irritation, urine dark for days consecutively, and then the opposite with a nearly pale translucency (this result has been typical in-between Dark Urine Events).

Nurse First, Weights and Measures

Post-dawn, the Assistant Nursing Director covered my area. She's wide-eyed, open-ended, and absolutely full-on saturated with endless inertia (and prone to being described in terms commonly hyphenated).

She desperately wanted to weigh me. Several people did, in fact.. utilizing something called a Hoyer Lift. But that's an apparatus I likely cannot tolerate, because direct pressure on the muscles is to be avoided. Having my head needlessly dangling off the edge at a difficult angle would also be ill-advised. Then there's my circulation to the extremities potentially being disrupted.

So after some going back and forth business, and perhaps some rough eyeballing, the braintrust agreed to list me at 130lbs.

Gosh, this is super-duper BORING stuff.

So, how about a story problem instead?

If Howard weighed 87lbs in early 2019, then weighed-in at a much heftier 114lbs by early 2020, can you extrapolate what his current weight is today?

Shower Hour

The Shower Dude came into my room, ready to whisk me away for my weekly shower. But I refused his offer, explaining to him that I only take one shower per decade. He stared at me dejectedly, then left the room. Then came back minutes later, asking me again. And that was that.

Hours later Mr. Shower Dude came back and asked me if I'd like to hop on the Hoyer to be thoroughly weighed. Again, I refused. What must he think of me now?

Commode Mode

I got totally killed, but didn't fall down to my depth. Close call though. Wibble wobble. Lunge dive twist.

Heart pounds and pounds. Body done in. Light is pain. Sound is penetrating. Muscles ache.

I know you understand.

Physical Therapy Bee Enters the Fray

Black bandana pulled down over my eyes. Earmuffs set in place. I am locked into a semi-permanent bodily position. A statuesque pose with a slight left side pelvic tilt, keeping direct pressure off of my coccyx. Then I allow the extraneous noises to pass through me, pass through me.. offering no resistance...

Knock, knock. She greets me. Her name is Bee, the Therapy Goddess. I listen to her voice. I can tell that it's going to be okay. She means no harm.

Priority #1 - make the commode transfer far less dangerous

Priority #2 - make shower event workable

Priority #3 - better organize my area, items within immediate reach

I explained to her in graphic detail my physical limitations. She was kind, considerate, and uncommonly understanding. So much so, it brought tears to my eyes. She even stated that she wished to make my life easier. I mean, who the hell ever says those kinds of things? In my life experience.. nobody.

She will schedule two specific shower specialists to work with me each and every time, learning how to transfer me directly to the shower cart (from my bed), then clean me without utilizing physical touch (of course, after wheeling me down to the shower room).

The Therapy Goddess explained to me that she'd had previous experience working with a young person like me, in his 30s, with a similar condition. Haha! I let it pass.

Note: several other people attempted to weigh me and/or shower me throughout the day - no comment on what the latter suggests

Director of Activities

The Activities Director came to visit. Impressive title, right? Except that she's only the "acting" Activities Director. Why? Because their department is extremely shorthanded. More regularly, the department employs a cast of nine. Right now, she's it. She's the entire department. Her alone. All 97lbs.

The apparent problem? No one is interested in applying for the job(s).

Oh, and Bee told me that lockdown restrictions had just been lifted. That would allow my roommate to actually… leave the room from time to time. Well earned pieces of quiet for me. You know that's what I seek. Plus, it'll be good for him, too. Maybe my near constant state of silence offends him somehow (we do chat sporadically).

Responses to Recently Asked Questions (previous comment section)

"Didn't you have a therapist once upon a time?"

I still do have the online therapist available, the one who has been volunteering to talk to me free of charge these past few years. But I have absolutely no privacy here. Besides that, his strong suit is mindfulness (not coincidentally, the only thing allowing me to remain sane during these recent years in bed). But neither relationship related stuff, nor emotions, are his particular thing. He's more focused on non-things.

In that regard, I feel I need to invest more effort into the specific things I've been obsessively writing out in recent days. The pointed observations involving my place in all of this needs to be evaluated. Addressing my role and involvement, yes, that too! And hers. I need to find my truth.

Logic dictates a specific course of action be taken… but I am finding logic altogether unappealing. I'm seeking out a loophole.

For me, almost all of the difficulty has to do with being in limbo. That's the problem. Where the hell am I? Or it's all about suffering in denial. I feel I need an interpretation from an unfamiliar outside source. Validation. Something tangible to chew on, then spit right back out.

"What's the Deal with the Dental Work?"

As they need to pull out all of my teeth, I need to first decide if their plan will work for me. The drugs they'll use. The risk. Having to be there by myself without an advocate. Having this done in the dental office, rather than in a hospital. How I'll handle coming back to the nursing home. What'll happen without me having any teeth for 30-days (dentures eventually). Will I be able to communicate my needs?

I suppose my primary concern is being able to speak clearly and intelligently with doctors (assuming Dr. Woo Woo sets me up with the much needed referrals to a variety of specialists). It may defeat the purpose of me being here, if I can't get the help I think I need.

"A Crooked Clock?"

Yes yes yes - definitely tilted
Or the building is askew
Bullet holes, too

"A Hug Thing?"

Someday someone is going to hug me because they want to. If/when I get better. After I've taken a shower or two. :)

Cheers,
H





THIS was my original blog entry opening (FEEL FREE TO SKIP IT) - It's something fraught with emotion. And I was going to delete the whole damn thing, but this is as close as I'm going to get to actually talking or expressing my current stance to somebody.

*Days okay, nights suck.

I've started today's blog entry on five separate occasions already.. a hundred words here, two-fifty there. Each and all attempts have been scrapped, as neither my head nor my heart was in the right place. Right now I am officially 60-hours into a dreadful experiment. An effort that's gradually tearing me apart from the inside out.

*No, it's not really. Not literally. Surely I am over-dramatizing, right?

< Also, I realize that everybody suffers. And know that suffering is all about perspective, one's mindset. But I do not seem to be able to get there just yet. Acceptance? What the hell is that? >

The Experiment

My objective is to NOT text, call, or otherwise initiate contact with my wife under any circumstances. I am curious to know how long it'll be before she even notices, or cares to check-in. Really, how many days shall it be?

Or perhaps it'll be weeks. or other larger units of measured time. I suppose it's yet to have crossed her mind, "How is my husband doing there?"

So that's weighing on me right now. Heavily. Making me insane.

Comments

Tooth Procedures:

we went thru it. My husband had many teeth pulled, all at once, without general anesthetic, in the Dental Office. Mostly they wanted to go. (the teeth).

He was given temporary dentures on the same day of the extraction. He wore those intermittently. Later, another pair that fit better got made. Then you have to more or less get another pair made maybe after about year, as the gums heal more etc. (we had a big fight with this insurer, and they were refusing to provide the dentures which fit). (We should have sued those people).

Thinking about all that, its possible you would be better off doing this work in smaller stages. Because of the ME. Since your there for now, what if you just did it in phases, every couple of weeks, a few weeks later, its mostly done.

Lockdown:

Ok, that explains alot.
 
Part II.

Premature Evacuation of Prior Comments.

So yes, if Jeff could take a trip to the Rec hall for a few hours, you'd get a quiet break. Everybody in the place, sounds like they need a break!

Yes, you can talk without teeth, a bit of a lisp.

Therapists: you need a real thoughtful kind person to chat with about what you know you need to chat about, and its not Mindfulness. You already have demonstrated you have a PHD in Mindfulness.

Generally speaking: once the Goddess has entered the room, life is just better.

Its really heartening, for all of us here, to hear and know that Kind Caring People Exist there.

Personal Spiritual Crises.

I experience those, maybe you do too. I did alot of asking for help a while back, prone on my bed, so sick and feeling it so unfair.

I have asked for Help. I have asked for Hands, to hold me up.

Sometimes you just internally have to ask for Hands, to Help Hold You Up.

But realize too, that you, Howard, hold up alot of us, as well.

It takes a Village.

Gotta Be a Way

To take a bath. Or to somehow be in a shower with gentle water falling softly across you.

Suspended Disanimation

Humans love novelty, they say. Adventures, a change in scenery. Bucket lists, check the boxes. The unpredictable.

Yet, it's very hard to be a suspended human. Its hard to drink the black water in the dark well. Why do we have to walk down that path, sometimes ? Why can't we see out of this forest? Why is no light available, to see with?

Uncertainty, unexpected change in our inner core state. Not knowing, not having the answers.

All things considered, you're handling all this remarkably well.

yeah, right. No, really.
 
I truly feel for you, Howard, being in that PEM generating environment. "Rest home" is a misnomer, as it's more like a PEM home. And no one can understand the mechanics of ME/PEM, everyone wanting to weigh and shower you and the 4:44 am blood draw. I want so badly for you to get some good rest and quiet time. Would they consider a sponge bath, but maybe that's too much for you too? Showering is ever very difficult for those of us who aren't bed-bound.

I'm glad you like your physical therapist and hope she'll be willing to understand ME and especially PEM.

About your experiment, it's crossed my mind a few times, wondering if your wife knows how you feel about her if you've told her. Sometimes we girls need to know someone really wants us and is willing to fight for us. But you may be lacking "fight" as many of us are here. Maybe you've told her how you feel about her, but if not, she might be waiting to hear it, her own experiment.
 
About your experiment, it's crossed my mind a few times, wondering if your wife knows how you feel about her if you've told her. Sometimes we girls need to know someone really wants us and is willing to fight for us. But you may be lacking "fight" as many of us are here. Maybe you've told her how you feel about her, but if not, she might be waiting to hear it, her own experiment.
You make a good point @christiankatz "her own experiment" worth thinking about @Howard
 
wondering if your wife knows how you feel about her if you've told her.
Also @andyguitar

good question:

Briefly... Yes, she knows up and down, back and forth, how I feel about her. As these years in bed have passed, I've become far more in-tune with my emotions, while also willingly expressing them (perhaps too often!). And I'm hoping my actions indicate the same.

That's the one benefit about being ill and mostly isolated... ample opportunities for self-improvement.

In any case, tonight is better than the past three. :)
 
I am basing my action off of her inaction. Without getting too deeply into matters, I am nearly always the one who has to initiate contact with her, or show interest (a duty I've held without complaint.. especially considering my always in-bed status). So what happens if I suddenly DON'T do that? Why is that childish? I don't understand… Perhaps because I am being childish.

I am trying to get a read on the situation. I don't care how busy, sad, engaged, distracted, burnt out, or even glad to be apart from my wife I was… I would at least text a smiley face emoji thing, or a heart, or perhaps offer a simple "hang in there" .. if I knew my significant other was potentially struggling.

But she doesn't know either way, because she hasn't asked me anything since I arrived here eleven days ago. In the least (and removed from the situation), I would assume the abrupt change of venues is challenging.

By no means am I insinuating she's a bad person, or uncaring, or whatever (she's been caring for me since 2015)… It's just that I am disappointed and hurt. My expectations are not being met (my fault).

Yes, I am seeking out (not on purpose, initially) a means to measure something that cannot easily be measured (interest, intention, love). To me, a person's actions are somewhat measurable, or observable, or in the least, worth noting.

I do not always understand the complexity of emotional matters, thus, my often soliciting input (here). I need to better understand myself, so that I may better understand others. I don't know how else to accomplish this. I am always striving to be a better person. Basically, I use the hell out of each of you (and everybody else on this forum). My overall quality of life (and for that matter, being alive at all) can be credited to a cast of hundreds on this site.
 
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Hi Howard......Eleven days already? (Of course I'm not the one who's there). Time has no meaning any longer....perhaps it's retirement.

I have the nasty habit, b/c of my childhood and deaths of so many, of having to be the person who leaves first. I've discussed it with my psychologist, but I have no real answer to any of it. I think it's just our life experiences and what we expect out of others.

Did you and your wife ever talk about things to reach the argument stage? Often men will walk away at that point, instead of settling the matter at hand. No, it doesn't just disappear but is stored in the psyche for another time.

I don't pretend to know how all marriages work and what makes everyone else "tick." Is that what drew you to your wife to begin with....her lack of talking and just accepting things as they appeared? It all makes such a difference.

Anyway, some good point (as usual) were raised
 
PT 11. Don't know what happened there, cont.......but how you feel (which may change daily) is your biggest concern.

You seem to be getting a few hours of sleep, let's hope that will improve with time. Glad they're working so hard on the weighing and bathing problems. How is that bedsore of yours doing?

I have to say that the people there sound very kind and helpful....so score one for you. Is there anything you need that we can provide?

I'm listening to someone you'd probably hate....Nat King Cole. Sounds great, fits today's mood (again...yesterday was the same). Not your kind of music, I understand, but someone used to like this music, you know. Yours, Lenora.
 
So what happens if I suddenly DON'T do that? Why is that childish? I don't understand… Perhaps because I am being childish.
I don' t really see where your being childish...your struggling to understand and alot is offline right now.

This can result in a lot of projection which is frustrating, totally get it.

And your processing all the phases which includes feeling angry and frustrated.

Maybe you could send your wife a letter, which expresses whatever the various things are you'd like to say. And maybe don' t pressure her to respond - like just say enjoy the break...chat soon when its right. Or let's have lunch next Sunday.

And being there, for now, seems like a good thing for you, hard as it is. Your getting some much needed medical attention. Maybe there are some fixes, some symptoms that can be improved, some help for you to feel a bit better.

I would wish that for you, we all do. And for everyone here, for that matter.

:angel:
 
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Yes, @Howard, I had also thought about you writing your feelings to your wife (to clarify) them, holding them overnight and checking them again before you send the letter to her.

I don't know much about her, don't know her personality, etc., but we're all drawn together for reasons that suit us (as husband and wife). You've changed along the way....hey, we all do, and maybe she hasn't b/c she has chosen to be super busy instead. She also has a lot to process. OK, I'm not going to add to your already growing list of confusion, but try to clarify your own position on things and, if nothing else, leave the door to friendship open. We all need friends, but I would love to see things work out between you. Yours Lenora.
 
Very few on this forum have been fully bedbound (no showers, baths etc for YEARS) as we have Howard. Just as some cannot conceive of this illness, some cannot possibly imagine what its like when your spouse becomes your caretaker and they resent you and lose interest in you ...because they have been changing our bedpans etc for years now with very little help. I think its good to remember, that your audience is going to be small for whom has been through this day in and day out for YEARS.

Your feelings are SO valid. Your wife said she could no longer care for you and got you in a nursing home. This is a fact. Although we understand logistically....you are a human that has every right to feel the full devastation of this. Very few of us here have lost everything as you have and begun again in a room with a roomate and two beds and the only belongings on the table next to you. Always express yourself, its how we get through this level of difficulty and utter heartbreak. As my therapist also tells me, some of us (especially with this illness) question ourselves often because of situations we have encountered in our lives (a theme) and we forget that we DO KNOW whats best. We will sound our own opinions here but know that you DO know what resonates within you the best and it is right....for you.

This IS YOUR SAFE space.

Proud of you warrior friend. Seriously, its kind of incredible what you are doing right now. Don't forget your strength. Its unique.

Keep on keeping on and i always appreciate you sharing your journey. It makes me feel less alone in this world of one room.
 
As my last post here, I need to clarify a few things in your post @sunshine44 before I trot off:
Very few on this forum have been fully bedbound (no showers, baths etc for YEARS) as we have Howard. Just as some cannot conceive of this illness, some cannot possibly imagine what its like when your spouse becomes your caretaker and they resent you and lose interest in you
I'm one of those who were fully dependant and totally bedbound. I was bedbound and close to vegetative for about 6 years, and DB had to perform tasks for me that I found humiliating and emotionally repellant.

He did so without a cross word or a complaint, and while he's not the most astute evaluator of human interactions (by his own admission), and women in particular, he had an innate sense of how my condition made me feel, and how that diminishment affected what was left of me....

His understanding of that was expressed clearly when he quietly removed his antique gun collection to a safer storage unit, just in case.

I think that for most in my and yours, and @Howards situation, our SO's usually have a sense of how all this feels to us, as well as how devastatingly it impacts their own life, tho perhaps that understanding is more fully and vividly recognized on the second one.

At least that's my, perhaps delusional, experience in my decade-plus of this illness.
Your feelings are SO valid. Your wife said she could no longer care for you and got you in a nursing home. This is a fact.
Whoa-up there. We need a fact check here ....

It was our understanding (and by our, I mean anyone in @Howards threads who got their information from those thread sources) that the decision to go into a nursing home was @Howards, not his LPW's (tho I;m sure at that point she agreed with it), and based on some very real and pressing concerns: the serious deterioration in what was left of his teeth and the impossibility of being shunted, juggled, bounced, and wrangled back and forth from his home to multiple, endless, wrenching dental appts and the severe physical effects that would have on him, before even factoring in the trauma of the dental procedures themselves..

It also offered the hope of access to all the Drs and all the labs and all the evaluations that he hadnt been able to obtain under his then-current conditions, for all the same reasons stated above re his dental appts.

So if you know something else, I need to clarify that it doesn't match up with the received information from @Howard himself in his threads, and it certainly doesnt conform to my understanding of the circumstances.
 
Hey, @Howard,

I just stopped by your blog to see how you are doing today.

Uh oh.

I, personally, have never commented on your relationship or your marriage because I firmly believe that NO ONE can ever really know or understand another person's marriage (or relationship with a long-term partner). It's simply not knowable to ANYONE outside the marriage or relationship. (Well, except for maybe a marriage counselor, but only if both parties are being completely honest. ;))
 
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Thank you C.Katz :hug::hug::hug: .... it's not something that I trot out too often, and Im so grateful to be out of what DB and I ruefully call The Troubles, that even tho I dont have much of a life compared to who I was before all this, when you compare it to those nearly 6 years, it's flicking heaven !!!

And on my bad days, which are still not as infrequent as I'd like, I have to remind myself of that and remember to be grateful, no matter how small the blessings may seem when I'm in The Pit ....

I've really got to trot out of this blog now, as I promised. I think it's better all the way around.

You take care, yes ??? I know we'll meet up in other threads, so til then ....:hug::hug::hug:
 
Enni Francis quote:
Learn to fill your own cup first. You cannot pour from an empty cup. You can only give what you have.

@Howard, my sense is that your wife has caregiver burnout. I don't think she was speaking in some mysterious ancient code that you as a man have to spend long mental energies trying to figure out or call in "experts" to help you to decipher.

You're only defaulting to that anyways because you're taking this all personally.

However, when she said, "It's not you; it's the disease," I gotta believe she was mostly telling the truth.

More accurately, "It's not you; it's the disease..."

...and the job...and the family needs...and her own health...and wash, rinse, repeat more of the same, pouring out day after day, week after week, year after year.

You cannot pour from an empty cup. You can only give what you have.

So as hard as that is to swallow, @Howard, "It's not you; it's the disease" (shortened version) is going to have to become a kind of mantra to you right now.

She cannot pour from an empty cup. She can only give what she has

...and through no fault of her own (and not yours either) the cup is dry. :(

You cannot take it personally!!!!!!! And you're going to have to give it time and practice loving husbandly patience while she gets her battery recharged or her cup refilled or whatever, IF you truly want your marriage to survive.

That means no "experiments" or tests.

In real life, those don't work anyway and it's not fair to do it to those we say we love.

Tests only add to the load.

You cannot measure the strength of her commitment when she has no strength to give to you right now.

Instead what you do is remember all that she has given in the past.

You let that be a kind of bank account of love. You remember all the deposits she has made through the days, weeks and years and let her draw from it now when she cannot put in anymore because:

She cannot pour from an empty cup.

Okay...so two mantras. :)

You have to do this if you really want your marriage to survive. Do you???


:) If I may, I think that's all that @YippeeKi YOW !! was trying to say.

And please don't stop coming here and posting.

We really do care.
 
Regarding extreme Muscle Tension.......I just ran into some info that might be applicable to you, @Howard .

Do you think you could have EDS or a variant of that? There is just something up with connective tissue for alot of us.

It seems some extreme muscle tensions could be tied to this phenomenon.

And there are some online discussions of treatments available which might help.

Like HERE:

http://www.heraldopenaccess.us/open...sautonomy-l-dopa-and-oxgenotherapy-s-efficacy

Some info from Twitter Expert Patient who is digging this up....

"it turns out that many people with EDS may have dystonia, which is a condition that can cause painful muscle spasms, involuntary muscle contractions, and unusual muscle tension. the good news is that this type of dystonia is treatable!"

"the medication that can help is levodopa, more commonly used for Parkinson's. the body converts it to dopamine. it's usually combined with carbidopa, which makes more levodopa available for the body to use. one of the US brand names of this combination is Sinemet."

"it's a good idea to start on the lowest dose. if your dose is too high, you may experience even worse spasms/contractions than you got without the medication. this is a good sign - it means your dystonia is indeed related to dopamine, and you just need a lower dose."

"the hardest part may be finding a neurologist willing to help you by prescribing a Parkinson's medication off label on the basis of one study. but if you have EDS and are experiencing these muscle symptoms, it's worth pursuing if you can, since it is so treatable."
 
Very few on this forum have been fully bedbound (no showers, baths etc for YEARS) as we have Howard. Just as some cannot conceive of this illness, some cannot possibly imagine what its like when your spouse becomes your caretaker and they resent you and lose interest in you ...because they have been changing our bedpans etc for years now with very little help. I think its good to remember, that your audience is going to be small for whom has been through this day in and day out for YEARS.

Your feelings are SO valid. Your wife said she could no longer care for you and got you in a nursing home. This is a fact. Although we understand logistically....you are a human that has every right to feel the full devastation of this. Very few of us here have lost everything as you have and begun again in a room with a roomate and two beds and the only belongings on the table next to you. Always express yourself, its how we get through this level of difficulty and utter heartbreak. As my therapist also tells me, some of us (especially with this illness) question ourselves often because of situations we have encountered in our lives (a theme) and we forget that we DO KNOW whats best. We will sound our own opinions here but know that you DO know what resonates within you the best and it is right....for you.

This IS YOUR SAFE space.

Proud of you warrior friend. Seriously, its kind of incredible what you are doing right now. Don't forget your strength. Its unique.

Keep on keeping on and i always appreciate you sharing your journey. It makes me feel less alone in this world of one room.

A very valid reply. It must be incredibly difficult to be the sole caretaker, and for the one in the bed to feel the resentment that builds up.

I wish I could provide helpers for all in this particular position. It would give the partner a break and perhaps a small feeling of being somewhat normal to the party that is bedridden.

Thanks for another view. Yours, Lenora.
 
"it turns out that many people with EDS may have dystonia, which is a condition that can cause painful muscle spasms, involuntary muscle contractions, and unusual muscle tension. the good news is that this type of dystonia is treatable!"

"the medication that can help is levodopa, more commonly used for Parkinson's. the body converts it to dopamine. it's usually combined with carbidopa, which makes more levodopa available for the body to use. one of the US brand names of this combination is Sinemet."
I wonder if dopa mucuna could be used instead. It's a supplement but one where someone can develop tolerance so it needs to be taken on a rotation.

And of course, with everything you have going on it would most likely be best to find a doctor that would be willing to work with you on it.

That is if that is still one of your goals while you are there in the care home.
 
And of course, with everything you have going on it would most likely be best to find a doctor that would be willing to work with you on it.
I just wanted to toss that into the mix, and definately a doctor seems necessary to work thru something like that, but I just wanted to make sure Howard was aware of this info.

Maybe its a not applicable.
 
A very valid reply. It must be incredibly difficult to be the sole caretaker, and for the one in the bed to feel the resentment that builds up.

I wish I could provide helpers for all in this particular position. It would give the partner a break and perhaps a small feeling of being somewhat normal to the party that is bedridden.

Thanks for another view. Yours, Lenora.
so kind of you.:heart::heart::heart:
its a very difficult kind of hell.
 

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