Mental, not Physical: It's All in My Head

I'm starting to feel a little defeated. I am taking hits from every angle. And I am only able to hold it together because of the people here. You're it.

WARNING: I am about to rant and rail. I would expect most of you have dealt with similar obstacles. I am not unique. Still, I wish to share. Perhaps doing so will help someone else, or maybe even me.


Joy of Joys

Finally, I talked to my long standing therapist today (very non-private video session with staff constantly in and out of my room.. roommates television loudly tuned to "Texas Walker Ranger" .. which is a horrible 80s show featuring Bruce Lee). And during this session my therapist reaffirmed his belief that there's nothing physically wrong with me.

Yes, I was already experiencing wide ranging difficulties heading into our session.. and that was just about the very last thing I needed to hear.

Seriously. That happened. And then he said I just need to start exercising.. a constant refrain. And then something about me just needing to want it badly enough. He said losing my wife was my fault.. saying I did this to myself (the "illness"), implying I wasn't motivated enough to make the effort to get out of bed (an opinion shared by his colleagues). And yes, he's always thought this, but it's really bothering me right now, because…

My big sister and brother-in-law also believe the same thing, insisting I take the medications the psychiatrists are pushing.

And then my good friend (over the phone last night) gently hits on the same thing.. "Is it possible this is all in your head?"

Yes, of course, sure… I've ALWAYS entertained this possibility. I would willingly accept ANY accurate diagnosis of any kind. My ego? My pride? Not a problem. Neither is applicable.

I lay in bed all day. I am now rather physically ugly, undesirable, and until last week, hadn't showered in six years. I'm alone after having been left behind by my only love. I no longer recognize or relate to my estranged son. And again, few believe there's really anything wrong with me.

So maybe everybody is right. And if they are, I could no longer live with myself. I would have ruined my life, as well as disrupted all the other lives around me.. those who used to love me and care about me.. due to my being a veritable headcase!

So what the hell is going on here? It feels like an intervention? All these unrelated others seem to be conspiring against me all at once. Perhaps I do have delusional disorder!

New threats, that's what we need. Who the hell doesn't love the excitement and drama generated by New Threats?

Cut me off? Lock me up? Just do it already! By all means, teach Howard more valuable lessons. Throughout my entire life, everybody has been wanting to teach me lessons, because I do not naturally comply. I fight. I fight back. I've always been fighting to maintain my authentic self. THERE'S NOTHING WRONG WITH ME, OR THE WAY I AM!!!!!

So, what am I supposed to be doing here and now? Someone please answer me. I don't want to die, just to prove a point. Answer the question, either way. What do I need to do? I am caught amidst a whirling blur of confusion.

My muscles are full of tension, constant tightness (and now, always aching, because I cannot sleep here). And the only time when this tension is relieved is when I am meditating, being mindful, sleeping, or sexually aroused. So, do these factors indicate that the "illness" is all in my head? Why can't anybody fucking tell me? Please just tell me if I did this to myself. Am I the one to blame? Am I?

Although no one here truly "knows" me, the person I portray through my writing is the actual 100% authentic Howard. I leave it all out on the table.If I did not do this, my words would be meaningless. I hide little to nothing (except when I feel as though it may hurt one, or offend the many).

Within months, years, or decades, each of us will cease to exist. And through these struggles I've come to believe that nothing much matters… besides our ability to relate and positively impact others (and/or ease human suffering).

So in this instance, perhaps you, or some eventual somebody, will find value in these words. My intention is true. But my aim is unclear.

Fear not!
Howard




NOTE: the questions above are not meant to be directly addressed by each or any of you.. it's just me letting my frustrations bleed through - :)

NOTE 2: I am in the most physical pain I've been in since illness onset. Body wide, my muscles ache and burn.

Edit: comes and goes in recent days, no big deal .. tolerable - emotional gravity and/or stress

Comments

Your one last longstanding companion....your therapist...GASLIT you?! what the actual f***.....

Oh man. Howard, This is NOT in your head. Its mob mentality. Not enough is known about this illness so the mob mentality is to go medieval ages and say its mental...hmmm, sounds familiar...like say same exact scenario of how they used to 'treat' AIDS and 'MS' in beginning.

We can't fast forward time but know this isn't in your head.

I am really hoping you are able to rest somehow and take a break from all of this. It will still be waiting for you.
 
Oh. my. gosh. I'm speechless. You know that we know none of this is in your head. Millions of pwME would know that.

I wish you had a therapist who understands ME. Maybe someone here knows one.

It would also be great if someone here, who understands ME would bring you to their home to live. That's what I'm praying for. We really care about you, Howard, and feel for you, and what you're going through.:hug:

This must be unbearable for you, but you're bearing it like a champ. I'm so sorry for the extra pain you're feeling.:(
 
Thanks, all. I almost feel guilty posting this blog.. not wanting anyone to worry or upset anybody.. but I feel it's important to put this out in the open so others know what's this reality is like.

And everything seems to be more okay after I've had conversations with other humans. In the past two days I've had positive relating with the visiting overnight nurse and the daytime CNA. --- It's an ebb and flow. I snap out of it reasonably quickly. Fall back in. Climb out. I need to realize and accept that this is going to a tough on my body at times. The pain will go away. Again, I'm okay. Just needing to express in this way. :)

I just cannot think nor conceive that this is in any way my fault. I must find a way to reframe these accusations. It's just that these people really know how to hit you hard... using their personal knowledge of me (that I've willingly provided) against me.
 
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this We Must Be Crazy topic.....

I spent four years FOUR YEARS every day- around 3:30 I'd head to this reclining chair, under the sycamore tree, next to the babbling brook. I'd put myself into a mental state of- Letting go of False Roots. A meditative event.

This firedrake? (that avatar)...its involved in Removing That Which I Don't Need ....these False Roots, these fake stories. This attention on illness. The body knows how to be well. Its just choosing something else for some reason.

We are all wizards. I know this. I really do know this. I truely believe it.

My chair and four years didn't fix a thing.

My chats with my chinese herbalist, who is like my therapist in that 15 years later- we talk about various things.

He focuses nearly 95% on My Anxiety. All this man sees, is a woman who has nobody to talk to about anything that matters really. And if I have an opinion and try to bring it up, he cuts me off with this Anxious crap.

its just crap. Because they are blinded, by their own views, their own perspectives and they can't see you- even though Your Right There.

My dearest friend, like a sister? She says I am a hypochorndriac.

It was only in the last phone call we had, brief, that she admitted this to me, and then she crossed over. She grasped- finally- that I'm dealing with a real something.

When the person who knows you better than anyone, has written you off as a fakir- its f-ing heartbreaking.

I' ve distilled this down to - she gets sick or ill and somebody fixes it, so its better later. Well, nobody fixes us. So there is no better later. So this basic disparity in outcomes- explains alot.

***
So the whole group knew all along you just weren't trying. What a bunch of clever Presumers. They are so smart!

Projections. They don't ask nor do they listen. They dont' research or read or investigate. They just presume.

There is just one s-load of this crap happening generally in the outer world many of us now question having much of anything further to do with it.

***

Whats totally understandable is- your being surrounded by this in an unrelenting way and its not OK.

and its not surprising its just wearing you down.
 
I just cannot think nor conceive that this is in any way my fault. I must find a way to reframe these accusations. It's just that these people really know how to hit you hard... using the their personal knowledge of me (that I've willingly provided) against me.
maybe one thing is your fault. After finding yourself entirely isolated, and better in that you improved...but didn't recover back to normal functionings....you sort of got stuck at that spot.

but its not your fault its the circumstances, the tremendous challenge of working the US medical system while being gravely ill.

I blame myself sometimes I failed to work the system. I should be a lot further along in getting a few more tests, working thru this or that, trying harder to deploy fixes.

But when the dental implant surgeon, so concerned with my medical records, literally stated to my face and in front of three nurses: " I do not believe you".

My body served up: your never going to see him again. No, your not going.

cancelled.

Thanks, all. I almost feel guilty posting this blog.. not wanting anyone to worry or upset anybody.. but I feel it's important to put this out in the open so others know what's this reality is like.
don't- its your roller coaster ride.

We are worried, we are upset because we care and its OK.
 
.. not wanting anyone to worry or upset anybody.. but I feel it's important to put this out in the open so others know what's this reality is like.
Thanks, Howard. What you're experiencing has been eye-opening, and I'm grateful you've been willing to allow us to see how they really think out there. I honestly didn't realize they were that ignorant to this disease. Like you, I don't have documentation of this illness. I'm able to prop myself up to see Doc twice a year, and I'm afraid to say anything because of the fear of getting the treatment you're getting.

Just stay out of the psych unit. You probably know they'll take away your electronic devices, and you'll lose the support here. But you wouldn't actually lose the support here. We'd be fighting for you.

We could always flood those doctors with letters from the ME community. Just a thought, but maybe it's way out there.
 
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@Howard
Am not at my best today, particularly in terms of thinking, so I'll keep this brief and I hope it helps allay your intermittent creeping fears that maybe the bastards are right, and also any paranoia about the fact that they're reacting specifically to you and to your ME.


Over a period of a little more than 2 years, I dragged my sorry self and my exhaustion, nausea, inexplicable abdominal and other pains, blinding headaches with no previous history of same, crippling back pain, and increasingly frightening weight loss to 5 different Drs, and my PCP twice.

I was told by every one of them that it was all in my head, that it was the not inconsiderable stress that I was under (and that was before I learned what really bad stress was. It seemed sufficient at the time), that I was depressed, that I needed to take a vscation and I needed to lower my stress load.

Every one of them tried to force anti-D;s and anti-anxiety meds on me, and shook their heads in irritation when I refused the presxriptions.

DB finally, at my request, dragged me, gasping for air (my left lung was being crushed as was my heart by a giant lymphatic tumor, and ditto my lower vertebrae by yet another one, just two of the approx 25 they later found throughout my body) into the local ER, where a Physicians Assistant diagnosed me in about 15 mins,. sent me for an emergensy CT, and admitted me to the hospital immediately with well-advanced stage 3 Non-Hodgkin's Lymphoma.

Not one of the Drs I went to, inlcuding my PCP of 17 years, ordered a CT scan or apparently read my labs, which at point of dx showed a lymphocyte count of 14-15,000 when the normal is 1,000 and at 3,000 becomes concerning. The only testing done was within their specialty, and was read with their prejudices and stereotyping all firmly in place.

As far as any of the Drs who are mistreating you currently apologizing,. I wouldn;t wait standing up. Not one of the Drs who''d sent me home to die ever apologized, even tho I'd bump into them fairly regularly in the hospital during the month and a half I was there, and at least one of them feloniously altered my medical records to erase anything that would highlight or even indicate his reckless negligence in treat me.
 
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He does not believe I need to be medicated. :)
He also feels as though he's failed me, despite the fact that my overall quality of life HAS gotten better (improved mindset) in recent years.
Can you send him the info prodivided for you in your 'Psych' thread.

As a psychologist that info would be critical for his re-education, as well as for his deeper understanding of what you're dealing with ...
 
We could always flood those doctors with letters from the ME community. Just a thought, but maybe it's way out there.
Not at all. I've had the same thought. It was a tactic that @Countrygirl used very effectively when she was trying to protect @Eva 24 ....


Also get-well card bombing @Howard himself, to let the staff and what passes for Drs there know that he has a community of friends, deeply interested in his care and treatment ,,,,
 
Thats incredibly awful Yippee. I am so sorry that happened to you. So much unecessary suffering.
It takes too much energy to even begin to understand the gaping holes in our medical system.

Tonight my neighbor came over and she had both her elderly parents in the nursing home past year ....and shes suing the nursing home (although no lawyer will take her case because the laws are so stacked for the nursing homes). She wants to become an advocate. Shes seen things she can't unsee. Her mother had a brain tumor amongst many things.....and they couldn't get a neurologist to her....but they got many psychiatrists to her and put her on multiple psych meds before her passing. The stories go on.

Blah.
Something must change these barbaric ways.
 
My physical body is enmeshed with pain. Everything hurts. Burns. Hours on end. Unrelenting (atypically severe, never this bad). I've been up most of the night suffering.. perhaps needlessly.

Meanwhile, my mind holds on and holds out. I can and will do this. I am encouraged. If not for myself, I'll do this for you (right now), and others who have yet come along (I need reasons). Yes, eventually I'll have to do this for myself, but I just need to survive these particularly difficult moments happening right now.

I appreciate the resourcefulness of this amazing community. Somehow over these trying years you've managed to keep me alive (sometimes due to this forum simply existing). :)

H
 
Over a period of a little more than 2 years, I dragged my sorry self and my exhaustion, nausea, inexplicable abdominal and other pains, blinding headaches with no previous history of same, crippling back pain, and increasingly frightening weight loss to 5 different Drs, and my PCP twice.
Ugh. What an unnecessarily awful experience. :-(
no words

Be kind to yourself and hang in there today :)
 
My physical body is enmeshed with pain. Everything hurts. Burns. Hours on end. Unrelenting (atypically severe, never this bad). I've been up most of the night suffering.. perhaps needlessly.

Meanwhile, my mind holds on and holds out. I can and will do this. I am encouraged. If not for myself, I'll do this for you (right now), and others who have yet come along (I need reasons). Yes, eventually I'll have to do this for myself, but I just need to survive these particularly difficult moments happening right now.

I appreciate the resourcefulness of this amazing community. Somehow over these trying years you've managed to keep me alive (sometimes due to this forum simply existing). :)

H

I tell myself minute by minute sometimes and thats exactly what you do. Its an art form popular in hell, lol. Trying to make this lighter. Hang on for others until you can hang on for yourself again.

baby steps. rest. do what you can, with what you have, where you are...and for you, right now....that may mean doing a whole lot of nothing for a little while and just float.
 
and they couldn't get a neurologist to her....but they got many psychiatrists to her and put her on multiple psych meds before her passing. The stories go on.
.... and I've got another hundred or so. Your friend's story is heartbreakingly familiar, and it pulls me back, kicking and screaming, to the horrors I had to battle against to keep those bastards from actually killing mama, altho even with all that I truly believe that she died sooner than she would have otherwise, and it breaks my heart. I'll live with the guilt of that failure for the rest of my life, so they managed to kill both of us, indifferent ways.


While I was with her all day and into the evening, then rabbiting off to DB in the other hospital, I was also trying to find a reliable, decent home care-giver so I could take her back to her home, where she would be infinitely happier. Because of everything I was dealing with at the time (I'll spare you), I knew that I could only do 12 hours, and I needed help.

There was none.
Something must change these barbaric ways.
Bring dynamite and a crane, like the song says.


Nursing homes are almost always owned by corporations, which are owned by ....(rim shot and cymbal paradiddle) ... doctors. Yeah, the very people who put their patients in there earn HUUUUUUUGE amounts of money on their subsequent misery.

I thought that my experience was singular,, that it was because of the crap medical group that mama was signed up to thru her insurance. I'm learning that no, not singular. Global.

God help us all, cause they definitely won;t ....
 
Why are things this way? A lack of empathy? A lack of expertise? The insurance industry?

Several of you likely remember my ridiculous ordeal trying to get this feeding tube placed... the very thing necessary to save my life. They kept trying to send me home from the hospital, despite the fact that I could not orally ingest fluids and weighed all of 87lbs.. and I am six feet tall! I would have been dead within days. This was AFTER they performed my 4-hours long first gastric emptying study... the one that confirmed fluids WEREN'T emptying. I was so full, I was literally aspirating.

And the only reason I was able to save my own life had everything to do with round-the-clock research, encouragement, and advocacy provided by several of you... plus, several nurses who stood up to the discharging doctor, refusing to comply. Seriously. This all happened a mere two and a half years ago. I do my best not to revisit these former things, but what the f****** f*****???

I just slept 20-minutes. Improved.
 
Because its a business.....and many other reasons. :(

It still baffles me the fight you had to go through to get a feeding tube. You were a PRETTY clear cut case of needing one asap. I remember those days well. You had to call for ambulances multiple times and play games of not mentioning ME/CFS etc. Its all totally nuts.

I know i haven't shared many of my stories here but the trauma is SO immense from these people that were supposed to help me past 4 years. Twilight zone is truly the scenario.
 
I'm sorry you had a rough night.

I hate to think of you in so much pain. :(

Praying you can sleep some more.

Are you still doing the tart cherry? Does that still help sometimes?
 
Are you still doing the tart cherry? Does that still help sometimes?
You know.. I'd forgotten the past three nights! Yes, it does still help.. I wake up feeling more rested (whenever I actually get a few hours sleep.. at least 5 hours. At 7 hours I feel like an all-new human). Weird how everything hurts and aches at fewer than 5 hours sleep.

Thx for the reminder... but it's not like I've got a whole lot to do here.. Ugh

I'm still trying to gain access to an email account here so I can forward my daily/weekly task lists (and motivational messages) to be printed out - they keep promising they'll do this for me

I'm visual. If I don't see it.. it doesn't exist. I easily forget.
 
Hi @Howard.....I'm sorry this is all happening to you. We won't debate whether it's fair or not, but will look toward what can be done for you.



1. Ask the doctors directly (before you're moved & drugs are started) exactly what the plan is...names of drugs, doses, day to day living.

2. You have been bedridden for a long time. I know my sister (who lived in Flagstaff) couldn't walk and was determined to go on a trip to Europe. Darned if little by little she was able to walk again....and she was on oxygen and was in terrible health....to say the least. (She did make her trip!)

3. So small exercises to strengthen your legs aren't bad. Little by little (and they should take this slowly) you should be able to sit in a chair. I know from my forays into the hospital that there was a time when I was too weak to walk, probably from IV drugs, anesthetics and the like, but I did go short distances with the therapist. When she brought in those reddish bands, is where I drew the line. OK, they may have been fine to strengthen my legs while sitting, but walking with those things on? No way!

4. I did walk back and forth from the bed to the wall...big deal, but at least it was something. I had everyone who visited either exercise with me or Rod would take me out walking. I never wanted to see those bands again, but there may be a place for them at some point. I don't know.

5. It did take time to recover my ability to walk, but like my sister (and she was much, much worse....her legs had withered away), I did it. I simply wasn't going to get out of the hospital until I proved that I could walk....I could see that.

6. Exactly why did they put the feeding tube in? What was the disease, syndrome....whatever? You need that name as my guess is that they'll slowly try you without it at some point. So the more info you can provide them, the better.

7. No one did you any favors by letting you sit in a room alone at home for this length of time. Anyone would slowly fade to black under those circumstances.

8. If you're put on the usual meds, gabapentin and something for anxiety (I don't know if you need it or not, but that seems to be the way it will go), you may find the reserves to do what's necessary. I sincerely hope so. I really do, as you know. One thing's for certain....you're not getting any better at the rate you're going.

I've been on gaba, am now lyrica (close relative to gaba) but the first is the model for all of the others and it has been around for a very long time. It was the first drug that gave us any relief from pain, so expect to be "out of it" for a bit, but it won't be as bad for you as it was for me. Body wts. are now taken into consideration. I wouldn't even dream of being off lyrica....I know my pain would reach terrible highs. Ice also helps, but not the type of ice they have in hospitals. Unless they have Ace ice bags, forget it. Heating pads make the muscles tighten up even more,,,,at least for me.

You have a good mind and can put it to use as you go through this. People seriously underestimate what meditation, prayer or even imagination can do for a suffering body. You know that, so you're quite a few steps ahead.

Don't forget to ask them what their end game plans are just so you'll know. Can you have visitors? (I'm sure you can if COVID isn't around). What does the Ombudsman's Office have to say (unless I missed that).

We would also like to see you in better health, perhaps even able to fend for yourself if groceries are delivered, but it will take time and you'll probably need someone checking in once a day for awhile. But that's OK, there are worse things. You do have to get in the system though, you really do.

What's the point of you leaving now? You have nowhere to go, so at least the basics are being taken care of where you are. See, I'm the type of person who always, always thinks of the alternatives....have to make it right for myself and others somehow. I would love to see a healthier Howard...let's work towards that. Yours, Lenora
 
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I've been on gaba, am now lyrica (close relative to gaba) but the first is the model for all of the others and it has been around for a very long time
From what I understand, Gabapentin is sometimes used for depression, so I wonder if that would be enough for them to leave you alone, @Howard. It's rare that I can tolerate a medication, and I tolerate it fine. It has really helped me with the burning and pain while I'm in bed, and with sleep and anxiety. However, my brain doesn't work nearly as well as before I started it in March. And that's on a very low dose of 200 mg, but it's worth it to me.
 
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