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Heroes Community > Other Side of the Monitor > Thread: If Pain Was Purple
Thread: If Pain Was Purple This thread is 2 pages long: 1 2 · NEXT»
markkur
markkur


Responsible
Legendary Hero
Once upon a time
posted June 03, 2015 03:43 PM bonus applied by Corribus on 04 Jun 2015.

If Pain Was Purple

Thought I should post this general message at HC, just in case it might be of value to someone here.


"If Pain Was Purple"

The single most difficult challenge that I have faced in my long war fighting chronic pain is the heart-breaking loss of my most valued relationships. It is terrible enough, that words such as loss or horror cannot adequately describe how difficult it is to endure constant suffering. However. far worse for me, has been the slow and torturous drifting away of my loved ones.

Like any long term illness that people must face, my struggle has been a flowing flood of questions. The list of the thoughts that center on finding answers is a long and tiresome one, that covers a multitude of topics. Personal doubts, which include;  How am I dealing with this disease? Have I received proper medical care? Is there any new option? Am I a hopeless case? And the most common, the cry of despair; “Why me?”

I have lost my previous life, it is as simple as that. Mine were years of loving the sweat of my labors, making things by my own hands, being there for someone else and creating things that last. These are what I call earthy-pursuits. The same nature of efforts that men have always pursued since the dawn of time.

Losing my abilities to arthritic joints, that stab and ache in great pains has been a very trying experience. My pain-levels are so bad at times, that it sometimes feels I have a giant standing on my chest and I am now too weary to have a chance of wriggling free. As bad as that reality is, at times it is nothing compared to being discarded and forgotten by those I dearly love.

That is all I will say on my present experience. What concerns me presently is knowing I am not alone in this dilemma. As a person who is charitable to others I've sooner or later turned my attentions to the bigger picture. In the case of the difficulty of bearing a nasty disease; I know I'm not alone and also that others are experiencing all of the loss and grief I have observed and even more. It is also likely that other poor souls are in worse circumstance because they have not the strength and faith in which I have been blessed.

Now to the heart of the matter; Why are we that find ourselves living a tragedy of constant pain, so easily cast aside and forgotten by those we would never dream?
After various internal arguments surrounding my emotional struggles, I believe the best answer is, that they cannot see our monster.

During my healthy years I often saw this situation and I'm sure you have too. Someone enters a room, doesn't matter what sort. Say it's an office at work and this person strides in Monday morning sporting a cast. Quickly, compassion flows from his or her peers and is met by questions and concerns. For the purpose of this example. the accident victim gained a broken leg by skiing. I've seen this scene play out many ways; patches over an eye, a bandage etc. The most often is the very visible expression that something is really wrong is when the person is walking with crutches.

Another aspect of compassion, though it is not as common now, is the awareness given to the elderly as they navigate their world with a cane. At least some folks will open a door, grab running children or some other gesture of care and concern. I'd even call that form of awareness, respect.

My reason for thinking about all of the above is a simple one; I've have wanted to understand the decisions and resulting actions of those around me. Those unfortunates that have had to witness my demise and have been forced to do so without nearly the my detailed view of my calamity. Instead, they are on the outside and cannot see more than what emerges from me, whatever that turns out to be. My sadness, my grief, or my anger has been projected and even I have not always understood my current state.

If pain was purple, I believe that my loved ones would handle me very differently. Especially if the more wicked the pain, the darker the purple. Like a visible cast, bandage or sling they would see a strong indicator that something is very wrong. However, the curse of Chronic diseases of all types, they are invisible and because they are so, they are sometimes not even given the compassion of a crutch. But the difficulty does not end there, for there is also a time factor. The longer the illness lasts the more the invisible illness is doubted. I may be a fool but I do not suspect that the doubt rests on convictions but only on the long and weary experience if seeing their loved one slide away from the character they treasured. I hope it is that anyway.

I’ve bothered with this for one reason only; I figured if I disengaged my "woe is me” thought of others and took the time to share this hard-won insight, that maybe it would be a good idea for me to emerge into the sunlight of the public arena, share these facts and hope that both the victim of illness and those that must look on, receive some small help. It is both the least and the most I can do.
____________
"Do your own research"

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OmegaDestroyer
OmegaDestroyer

Hero of Order
Fox or Chicken?
posted June 03, 2015 03:53 PM
Edited by OmegaDestroyer at 15:54, 03 Jun 2015.

A very interesting post.
____________
The giant has awakened
You drink my blood and drown
Wrath and raving I will not stop
You'll never take me down

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Corribus
Corribus

Hero of Order
The Abyss Staring Back at You
posted June 04, 2015 03:19 AM
Edited by Corribus at 03:26, 04 Jun 2015.

It's hard to compare one person's situation to another, but I can sympathize to some extent. My situation does not seem nearly as debilitating as yours, yet in the last year I was diagnosed with a somewhat rare autoimmune condition that causes me no end of discomfort for long periods of time. People sympathize, but without experiencing it themselves, they can't really understand how much it affects every aspect of your life. Pain hurts, but it impacts other things - you hygiene, your social interactions, your general health. And when you know there's no end in sight... well, I guess you know.

Actually, I have let few people know in my real life, other than immediate family, and I endure it the best I can, stoically and without fuss, because I don't want to be treated differently. When it is too much, I make excuses for why I can't interact ("busy", or whatever) because it's just easier than trying to explain.
____________
I'm sick of following my dreams. I'm just going to ask them where they're goin', and hook up with them later. -Mitch Hedberg

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friendofgunnar
friendofgunnar


Honorable
Legendary Hero
able to speed up time
posted June 04, 2015 06:29 AM

Have you guys tried medical marijuana?

I know this one chick that suffers from migraines but she won't even try it.  

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The_Polyglot
The_Polyglot


Promising
Supreme Hero
posted June 04, 2015 11:28 AM bonus applied by Corribus on 04 Jun 2015.

Markkur's post is spot on, especially about the part saying the longer it goes on the more people tend to forget about it, even loved ones.

They are AWARE of it, but not in the same visceral way we are. At the end of the day it doesn't directly affect them, and they get used to me coping day after day, so it becomes 'normal'... and one does not get overly upset at normal things.
Long ago, when I was very little, I had an unhealthy fascination with Coca-Cola. I could drown in it if I had the chance. It got to the point that in a single night my bro and I drank so much, other people were cheering us on and actually betting on how much more we could drink. That's when I realized it had to stop, a mere drink should not be allowed to reduce me to a mere attraction.

Long story short, I've been clean for more than a decade now, but I still get jokes and barbs about my addiction to Cola. All they see is me not having touched a drop for basically half my life, and so their brain assumes that it follows that I'm no longer addicted to it, and wouldn't turn into a mindless Cola-chugging machine if given half a chance. I know different and keep telling them, but they dismiss this as a mere joke.

Same thing with my pain. As I silently endure, their awareness of it remains peripheral at most, barring a few extreme occurrences that remind them of the severity of my pain

The thing that comes to mind, is my relationship with brushing teeth. When I was little, my Dad used to brush it for me, to teach me how. Back then I thought most everyone had to deal with the same pains I've been dealing with my whole life, and on top of that, I considered my parents the ultimate infallible authority.

So, when I had to stand throughout each and every session, craning my neck awkwardly so Dad could have optimal access to my teeth, I kept mum about how HORRIFYINGLY PAINFUL it was.

When I started brushing my own teeth it got worse. Now I not only stood and passively endured, I had to actually inflict the torture on myself. The act of brushing my teeth was causing pain

-In my legs, no-one told me I could brush them sitting down so I didn't

-my mouth, I have overly sensitive gums that are prone to get inflamed at a moment's notice( I wasn't aware that this was a problem not shared by everyone until much later), and to this day they bleed a helluva lot even with the gentlest brushing

-My shoulders, as with typing and writing, I moved my arm from the shoulders whenever I brushed, I know no other way. Naturally, this isn't their intended use, so they cramped often(ON TOP OF ALREADY BEING SPASTIC)

-My wrist, I still had to actually HOLD the damn brush after all

Naturally, I ended up skiving off brushing as often as I could. My family, unaware of my plight assumed I was being lazy, and I was scolded, punished, and yelled at more times than I can count for ending up with lots of cavities, most of which were discovered late, cause my pain tolerance was such I simply didn't notice them until they got HUGE. I had to have multiple teeth pulled out entirely, thank god I still had backup.

I eventually had to wear braces(unrelated, my teeth are too big compared to my mouth, I had Dracula fangs for years) That as it turns out I was allergic to! At the time we didn't notice, just the fact that along with my gums which were now inflamed ALL THE TIME, and bled like a gutted pig if I even thought about brushing them, my tongue joined in, and got regularly swollen, sensitive, and riddled with disease. It was only after getting rid of my braces and swapping stories with the family doctor that she came to the conclusion I had to be allergic to the braces themselves. Needless to say, my family was (not for the first or last time) retroactively HORRIFIED at what I went through. It was midway through the brace phase that I tentatively suggested getting an electric toothbrush. I had to fight TOOTH AND NAIL for an appliance that UTTERLY TRANSFORMED the act of brushing my teeth, and now I only have to deal with my ingrained phobia rooted in my early experiences(another thing my siblings routinely make fun of) before the act itself.

Conclusion: Since I kept complaints to a minimum, my family DIDN'T REALIZE the severity of the problem, and no-one ever suggested using an electric toothbrush. I had to realize what I was going through wasn't normal, and research potential crutches on my own.
My dental hygiene improved by leaps and bounds, but I'm left with an irrational fear that I have to deal with on a daily basis... Not fun.

And this is typical of my life: I dismiss a seemingly ordinary thing like my wisdom teeth mildly hurting for months out of hand, because EVERYONE knows wisdom teeth hurt when they come out and when I idly complain a bit, it turns out the four had over 15 individual cavities in them, due to me not being used to brush teeth that far back in my mouth. I'm so used to extremes that I don't make a fuss for comparatively little things, and it comes back to bite me in the ass. And by not making a fuss, I don't draw the attention of my family, who assume everything is A-OK.

Another thing is my depression: As you all are no doubt aware, I've been officially diagnosed with severe depression a little over 2 years ago. The thing is, I felt the same for a good 1-1.5 years BEFORE that, not realizing I wasn't supposed to feel like that, not making a fuss, going one day at a time till Mom finally started noticing everything's not quite rosy with me. See the pattern yet?

After the diagnosis, everyone was considerate and kept in mind I was MENTALLY ILL... for a time. Then they got tired of it, and my not having gotten better yet just kept getting on their nerves, BECAUSE IT WASN'T READILY APPARENT THAT I STILL HAD A SERIOUS PROBLEM. Again, I kept being yelled at for insisting FOR ONCE that my problem wasn't going away.

Apparently I'm coping so well that my psychiatrist bless him, recently declared I was symptom-free, and it took me arguing against that position listing off what I considered to be still symptoms of depression that I didn't complain about nearly as much as in the beginning any more to convince him I wasn't out of the woods. The thing is, I accepted those symptoms as an inevitable part of being sick, and I didn't really bother complaining about them, cause they are being kept in check more or less by my meds, and the leftovers I can deal with. I'm rational enough to know killing myself is not a healthy desire, and that things seem worse than they are because my perception of them is addled, so whenever I get suicidal, I reason myself out of it, whenever I can't get up from bed I just ride it out and whenever my brain isn't feeling cooperative, I give up on ambitions of studying(I know, unfortunate with exams near, but my propensity for performing miracles is despite appearances and my track record, not limitless)

I guess what I'm trying to say is... I gave up on others fully understanding my situation a long while ago. Appearances are all they see and not having been tempered in the way Markkur and I have, they just can't consciously deal with the fact of our suffering the same way we can. They need a semblance of normalcy to make them periodically forget for a bit just how terrifying(ly painful) life as a cripple can be. We on the other hand, have to deal with this on a daily basis, and if we don't find a way eventually, we end up irreparably broken or just plain dead by our own hand. Incidentally, my psychiatrist tells me depression is shockingly common after someone becomes a cripple. I can understand that; they're being thrown to the sharks after fooling around the kiddie pool, that's bound to be anything but a smooth transition.
____________
Sanity through drugs. Order yours today!

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Corribus
Corribus

Hero of Order
The Abyss Staring Back at You
posted June 04, 2015 02:19 PM

friendofgunnar said:
Have you guys tried medical marijuana?

I manage the episodic symptoms of my condition with medication that has far fewer undesirable side effects.
____________
I'm sick of following my dreams. I'm just going to ask them where they're goin', and hook up with them later. -Mitch Hedberg

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JollyJoker
JollyJoker


Honorable
Undefeatable Hero
posted June 04, 2015 02:39 PM

Which brings me to another sorry thing here.

Blame it on the work and performance related ethic of the protestants - but it's a fact that in Western society it has long been unthinkable to "reward" illness with "feelgood" stuff.
Medicine MUST taste vile, drugs must NOT have pleasant side effects - God beware, you might come to like them, since temptation hides everywhere.
Interestingly enough, though, the brain knows different meanwhile. ESPECIALLY, when the pain is chronic, DEPRESSION eventually becomes a major factor, amplifying the pain in its own way, and meanwhile pain therapy substitutes a big part of painkiller dose with anti-depression drugs.

Now, the problem is - no painkiller is free of undesirable side effects, and the stronger they are, the worse it gets. Believe it or not - he best painkiller is still heroin, but of course we all know the side effects of that one (methadon as a substitute is also another devil). Anti-depression drugs are worse; I asked a doc of mine, whether they might work with my specific problem, and he said, maybe, but they might also kill me, he wouldn't prescribe them anymore, since one of his patients died from them.

Bottom line is, smoking dope might well be combining the useful with the pleasant - but chances are, a lot of people will think that you fake or at least overstate your problems in order to get legally stoned all the time.

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husham123
husham123


Famous Hero
Yes
posted June 04, 2015 02:40 PM

So, in some different words, you feel a high torture ?
I know what you're passing though, momentainly I am having lots of problems in real life. Though, you seem VERY affected, so I cannot compare myself to you. I spent my time on games, and on thinks like forums, because it makes me forget about many problems from real life.I don't know how can I help, but I may say that a psicholog can help. Believe me, I do weekly controls, so I can tell what I have on my heart, on my soul. It should help me. After this, I can't help you anymore without documentation, so I may have to learn LOTS to help you. Imagine I am young, very young, so I just can purpose you little.

Hope you will not feel as bad, and hope that you, as always as ANYONE will have a good life .
As Poly was depressed too, I think you both need some hugs . The pain can go away with some happiness, so SMILE
____________
What the darn-diddily-doodily did you just say about me, you little witcharooney? I’ll have you know I graduated top of my class at Springfield Bible College, and I’ve been involved in numerous secret

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Stevie
Stevie


Responsible
Undefeatable Hero
posted June 04, 2015 03:18 PM

@Markkur

"And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away. - Revelations 21:4

God bless you, brother.
____________
Guide to a Great Heroes Game
The Young Traveler

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The_Polyglot
The_Polyglot


Promising
Supreme Hero
posted June 04, 2015 04:16 PM
Edited by The_Polyglot at 16:24, 04 Jun 2015.

friendofgunnar said:
Have you guys tried medical marijuana?


Since over-the-counter drugs don't do squat for me, I'm playing it safe and avoiding pain medication altogether. I don't want to end up addicted to morphine or an equivalent. I currently don't have a clue what 'not-pain' feels like, and barring a permanent solution I don't want to get to know it, it'd be that much harder to cope knowing what I'm missing out on.
That's the reason I refuse to drink alcohol: I heard it's possible to self-medicate with it and I heard of being blackout drunk. I'd give an arm and a leg(or preferably both legs, I hate the buggers) to have a reprieve from my pain, but I'd end up as an alcoholic vegetable pursuing that pain-free state if ever I experienced it once, and I've seen what that entails. I'm better off in permanent pain, thanks.

Stevie said:
@Markkur

"And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away. - Revelations 21:4



I don't want to start a theological debate here, but that sounds horribly dull. In my opinion, the absence of negative extremes (pain, sorrow, dying, etc) renders one unable to appreciate the positive extremes. If I designed Heaven and/or Hell, I'd make sure to incorporate both extremes, so that

-Those in Heaven never forget how good they have it
-Those in Hell are excruciatingly aware how severely they are being punished
____________
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Stevie
Stevie


Responsible
Undefeatable Hero
posted June 04, 2015 04:30 PM

The_Polyglot said:
I don't want to start a theological debate here...


Then don't. I wasn't addressing you anyway.
____________
Guide to a Great Heroes Game
The Young Traveler

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markkur
markkur


Responsible
Legendary Hero
Once upon a time
posted June 04, 2015 06:19 PM

Greetings all, before I reply to anyone I should relate that I'm surprised that I've had this much response. Do not misunderstand me, for I know that "meaty topics" are well within both interest and ability here at HC but the last year, "it as seemed" as I've became more serious, the more I've felt out of place. Again, for clarity, I mean that in no negative way, for life today is I think a very complicated matter for most and I fault no one for the choices they make, or in this case, what prompts their engagement.

Since today, I am not "full-tilt-boogie" and "sharp as a tack" as I often used to be, I need to make an addition to the purpose of my posting if Pain was Purple. Please, I beg you, if the OP is one you think important, please copy it and pass it on and w/o my name. You can translate and send it out. Also, If you have access to a community billboard, facebook or any other public medium where people are...post it there too. I just want this issue to become more visible and hopefully "provide a starting point" for engaging or re-engaging families, friends etc. facing illness of any sort. After all every aspect of this is relative to events that one has experienced.

A very important idea has risen by your interactions. In addition to the above…“post links to this thread” now that it has been enriched by other voices. Please.

@OmegaDestroyer
Quote:
A very interesting post.


I fear it is a topic all of we mere mortals will face on one side of the fence or the other and eventually from both.

@Corribus
Quote:
the last year I was diagnosed with a somewhat rare autoimmune condition that causes me no end of discomfort for long periods of time. People sympathize, but without experiencing it themselves, they can't really understand how much it affects every aspect of your life.


I'm very sorry to hear this Cor. Dang I wish I could stop this stuff! A very important point about the personal impacts. For me to do justice to the depth Pain attacks a person, would be a serious Tome; I'm sure you'll agree. Pain even changes the way I play games. Now how silly does that sound on the grand stage of life? Yet I'm playing HoMM or HoI3 to escape...but I cannot flee! You know, I worked with lead for 22 years and one of the symptoms of lead-poisoning is "the need to run to the hills." I knew that feeling years back but at my age of 60 and with this terrific battle against Pain, my emotional need today is "Damnit I need a long vacation." Notice, I'm not wanting to flee...just take a long break.

Quote:
Pain hurts, but it impacts other things - your hygiene, your social interactions, your general health. And when you know there's no end in sight... well, I guess you know.


I do know but having you say so too makes my sharing much stronger. TY for contributing.

Quote:
When it is too much, I make excuses for why I can't interact ("busy", or whatever) because it's just easier than trying to explain.


I know that drill too. Folks begin to think maybe you don't like them? or think yourself above them? and unfortunately it gets worse.

@FriendOfGunnar
Quote:
Have you guys tried medical marijuana?


OK, true confessions here. I was a hippy for many years. I smoked pot like cigs and preferred it over alcohol for a number of years. A few years before my trial began I drifted away from the noble weed and never connected with it again. However, when my 3D (degenerative disc disease) began spreading through my joints, a friend suggested I try a doob. Oddly it made it worse for me, it actually intensified the pain. Like all medicines, there are cases where a remedy is a blessing and others were it's all curse.

Quote:
I know this one chick that suffers from migraines but she won't even try it.


Sounds like a stigma to me. There is so much propaganda surrounding drug use that's spread about by huge corporations wanting you to buy their high-priced "fix".

I should make this important declaration;  Everyone be very careful about Ibuprofen and others so called pain-relievers. In conjunction with my Fentynyl (a serious fake opiate, much more powerful than opium) I was also on very large doses of Ibu and I can tell you when I had to forsake everything in the way of over the counter drugs due to nasty problems with my stomach, I discovered that I had damaged my nervous-system just as bad as using narcotics. Do not be fooled because you have purchased something “approved” for your pain. I cannot to this day,  believe the withdrawal I suffered from stopping 1600-2000 mg. daily dose. There’s no jest here…I twitched terribly for a few days.

@The_Polyglot
Quote:
Markkur's post is spot on...


Thank you Poly for the large contribution. As I already said; it makes my start more meaningful and adds much needed depth and breadth.

Quote:
I guess what I'm trying to say is... I gave up on others fully understanding my situation a long while ago. Appearances are all they see and not having been tempered in the way Markkur and I have, they just can't consciously deal with the fact of our suffering the same way we can.


So true. But "never day die" my friend…in another way. “Always work on dialogues, refuse to quit.” My biggest fear has always been that I would reach a spot and realized "I’d let go." For me, I never want that regret.

@husham123
Quote:
The pain can go away with some happiness, so SMILE


I've lived long enough to know everyone in this life-play is important and sometimes provides good advice. Thank you for caring and sharing. There is an old adage in English that goes like this; "Laughter is the best medicine" So your effort was spot-on. A smile and a laugh are kindred spirits.

@Stevie
Quote:
Revelations 21:4


Thank you for the reminder Stevie

I've been in this struggle for 15 years now and this has been my personal anthem...1st Peter 4:19 I will "softly" declare, that accepting my fate and then doing "what is right" has, at each and every deep dark valley caused me to look about again and see the faces around me and forget my gloom. In modern expression's; I would also add a mixture of the spirit behind Petty's "Running down a Dream" in the early years of the trial and towards today, Young's sentiment; "Better to burn out than fade away."

As always…Make it great!  
____________
"Do your own research"

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markkur
markkur


Responsible
Legendary Hero
Once upon a time
posted June 04, 2015 06:37 PM

@ jj

Quote:
Interestingly enough, though, the brain knows different meanwhile. ESPECIALLY, when the pain is chronic, DEPRESSION eventually becomes a major factor, amplifying the pain in its own way, and meanwhile pain therapy substitutes a big part of painkiller dose with anti-depression drugs.


All valid points. Navigating Pain in todays medical climate is one nasty mess.

I'll share how silly professional logic becomes because of fear and ignorance.

There is a witch-hunt underway in America that is by Doctors that have never experienced what they treat. For brevity" A new alternate -treatment clinic opened near me and with the destruction of the "Real interactive MDs" that were about "practicing medicine", what followed was the non-narcotic treatment plan; which I'll add is expensive and safe from legal difficulties.

So I arrived in this brand new office for a consultation. After hearing all the hoops I would need to jump-through I asked; "if I do everything you ask of me and in the end I have to have a narcotic will you prescribe them?" No was the response. I silently shook my head and w/o word, left the shallow person behind.  




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JollyJoker
JollyJoker


Honorable
Undefeatable Hero
posted June 04, 2015 07:18 PM

I'm really sorry to hear these things from you - I have a similar, but still a lot less serious disc-related problem, and I know everything you can take against this stuff. Ibu is the least harmful, and that speaks volumes.
Anyway, what I've been learning is that there are two completely different things that make up pain. For one thing, it's the nerves that get violated, and so they do what they can and transmit pain. That's what stuff like Ibu is good for.
Then there are the muscles that cramp due to the nerves being harrassed´- and with that Ibu and the like does nothing.

The worst (and probably only) withdrawal symptoms I ever had in my whole life (and that includes quitting smoking which was easy for me when I did) came from taking a muscle relaxant over a period of 4 weeks. Had half a day I couldn't sit tight - had to move, DO SOMETHING, was driven by an unrest you wouldn't believe possible.
So that was that.
Had the same effect actually, after taking one of those anti-depressant pill. ONE. Woke up in the middle of the night, couldn't sleep anymore, total feeling of UNREST, until it wore off next afternoon. So that was that.

You know what works best against those cramped muscles? Some alcohol. Has not even to be a lot. A glass of wine or two - sweet relaxing.
Sure, it becomes a habit - but so what?

As they say, the secret is finding the right dose big enough to do good, but small enough to not do too much harm.

Which is something to keep in mind. We older pals won't live to become 100 anyways, and if I can choose whether to die from utter exhaustion due to having to suffer constant pain or from the damage that comes from a not so healthy lifestyle, I happily pick the latter - as long as I'm able to still pick, that is.

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Khalbrae
Khalbrae


Adventuring Hero
posted June 04, 2015 07:26 PM

I honestly have no idea how to express what I am thinking in this regard but I will try.

I apologize if it's brief. I would want to write somethnig longer but I lack the eloquence needed to properly express myself when it comes to things that are really important or affect my life.


My own mother is in chronic pain. She had had multiple surgeries, had cancer treatment, etc and also works a physical job at a grocery store bakery. My dad has gout as well.

Who knows what I am in store for.

You definitely have my sympathy but I just have trouble expressing it in any meaningful way.

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kiryu133
kiryu133


Responsible
Legendary Hero
Highly illogical
posted June 04, 2015 08:54 PM

I'm not going to pretend i know what you are going through as I don't have any physically debilitating disease. I don't pay people much mind, i keep to myself and try not to bother anyone which leads (to my regret) to me occasionally ignoring things i should call out. That's how i've always lived my life and how I'll probably continue. I mostly ignore anyone i meet. I suffer from a minor case of aspergers which doesn't recreate the same situations but similar ones do occur. I do not know how it is but i can understand.

I can not give you much more than sympathy and some reassuring words: I sincerely wish you and anyone else all the best and i hope you get it easier. Hang in there.

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markkur
markkur


Responsible
Legendary Hero
Once upon a time
posted June 05, 2015 04:11 AM

@JollyJoker
Quote:
I'm really sorry to hear these things from you - I have a similar, but still a lot less serious disc-related problem, and I know everything you can take against this stuff. Ibu is the least harmful, and that speaks volumes.


About the Ibu, you saw the massive-doses that they had me on; well, I did that for about 4 years. Because intense pain is so normal for me and also because of the Major dose of narcotic I could not tell how bad I'd became. In few words, the Ibu ate up my stomach and it was when I started waking from deep-sleep by having intense hic-cup attacks that i bothered to be looked at. (I have a strong aversion to doctors these days for some reason) Anyway I had Esophagitis and an inflamed stomach.

When I quit the Ibu I had nasty DT's I had no idea that stuff could also damage my nerves as well as my stomach lining. However, if you're having no problems that's good. Someone once said; "It's not what goes in a man that defiles him but what comes out of him." I used that as a guide ever since I read it.. Each of us have to understand how our personal factory (body) works and cannot rely on other peoples experiences. It's perfectly legal to drink beer but I've seen men's eyes change with one beer and absolutely become someone else. You know what I mean JJ.

Quote:
The worst (and probably only) withdrawal symptoms I ever had in my whole life (and that includes quitting smoking which was easy for me when I did) came from taking a muscle relaxant over a period of 4 weeks. ...
Had the same effect actually, after taking one of those anti-depressant pill. ONE. Woke up in the middle of the night, couldn't sleep anymore, total feeling of UNREST, until it wore off next afternoon. So that was that.


Know those stories too well. Here in the states Neurontin is the #1 drug that's peddled for nerves and they gave it to me. Even today I don't have trouble with depression but when I took that stuff? I slid down a long, long way. I threw the stuff out and asked are you trying to kill me? No one prescribes that stuff to me these days and several others that also caused the like. I don't fault the MDs it is my responsibility to know myself and if they try things, then I've got to be ready. <imo> One of the worst situations regarding anti-depressants is that Docs just hand out pills there's no talk-therapy and worse... they are not advised to get a coach; someone that knows them well and can pull the ripcord if needed. Instead people take stuff that "alters their thinking" and are supposed to navigate this change alone as if they had two brains to compare thoughts and behavior.

Quote:
You know what works best against those cramped muscles? Some alcohol. Has not even to be a lot. A glass of wine or two - sweet relaxing.
Sure, it becomes a habit - but so what?


For decades I enjoyed a couple of glasses of Mead or a good Weitzen but no more. As soon as I try to drink anything it feels like I've been struck with a hammer in the gut. Pretty sad really. Oil well. <S>

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As they say, the secret is finding the right dose big enough to do good, but small enough to not do too much harm.


So true. A lot of people don't realize that's the principle behind vaccinations.

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I happily pick the latter - as long as I'm able to still pick, that is.



<imo>Everyone has to decide for themselves. 20 years of misery? 15 so-so? or 10 pretty good? I have no options so "I'm riding the storm out"


@Khalbrae
Quote:
I honestly have no idea how to express what I am thinking in this regard but I will try.


<thumbs up> Always the hardest step and thank you for taking it.

Quote:
I apologize if it's brief. I would want to write something longer but I lack the eloquence needed to properly express myself when it comes to things that are really important or affect my life.


I'll assume your are young yet...it will get easier. Just be you and "let 'er rip."


Quote:
My own mother is in chronic pain. She had had multiple surgeries, had cancer treatment, etc. and also works a physical job at a grocery store bakery. My dad has gout as well.


I'm very sorry to hear about your Dad and Mom, I truly wish I could help them and many others too but I can't.

It's seems to me they have a fine son. (or daughter if I guessed wrong) Just always do your best for them and try to get their minds on things they like.

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Who knows what I am in store for.


Don't take it to the bank yet, No one knows their fate. Remember, twins often skip generations.

 
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You definitely have my sympathy but I just have trouble expressing it in any meaningful way.


You have expressed yourself in a very meaningful way, Often, I am at a loss for words too and I am supposed to be well-versed. Don't feel you're alone when it comes to the matter of your heart.

@kiryu133

Quote:
I'm not going to pretend I know what you are going through as I don't have any physically debilitating disease. I don't pay people much mind, I keep to myself and try not to bother anyone which leads (to my regret) to me occasionally ignoring things I should call out. That's how I've always lived my life and how I'll probably continue. I mostly ignore anyone I meet. I suffer from a minor case of aspergers which doesn't recreate the same situations but similar ones do occur. I do not know how it is but i can understand.


If I may ask, why do you ignore people?

Also, sorry for my ignorance but what is aspergers? I've never heard the term.

Quote:
I can not give you much more than sympathy and some reassuring words: I sincerely wish you and anyone else all the best and i hope you get it easier. Hang in there.


Thank you for your kindness and empathy. The world needs more like you.

Btw folks, I keep forgetting to repeat a warning that I gave years back. Sorry Blizz if it creeps you out again, but be very careful with old-dust.

I was a big home-remodeler as a hobby and as Superman didn't wear masks. My disease probably came from that dust that I breathed when ripping out a very old ceiling. Arthritic illness can also be viral.

Use all types of safety equipment. Protect your eyes by wearing goggles, save your back with braces, two-wheelers, getting help etc. "Work smarter not harder"
____________
"Do your own research"

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kiryu133
kiryu133


Responsible
Legendary Hero
Highly illogical
posted June 05, 2015 08:39 AM
Edited by kiryu133 at 14:03, 05 Jun 2015.

markkur said:


If I may ask, why do you ignore people?

Also, sorry for my ignorance but what is aspergers? I've never heard the term.


The two are certainly related so I'll try to explain to the best of my ability. Aspergers is a variant of Autism if memory serves. I like to see it as a disease (Even if it technically isn't) as that helps me cope with it. Asperger's hinders me from easily understanding human emotions (Though people with aspergers tend to be very empathic and be good with animals) and the like and gives me a hard time to cope with social interactions. This together with my shyness and introversion means i practically shun new social contacts but It's light enough that i can easily work around it to be with already established friends which i enjoy very much.

Ignoring people is probably not the wrong word though. I just don't want to bother anyone so try to keep myself out of their way. If i meet someone i know I'll give a nod or maybe have a brief chat, however i don't like talking to people so it will be a couple of words at most.


markkur said:
Thank you for your kindness and empathy. The world needs more like you.


Aww, thank you!

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markkur
markkur


Responsible
Legendary Hero
Once upon a time
posted June 05, 2015 01:17 PM
Edited by markkur at 13:19, 05 Jun 2015.

kiryu133 said:
The two are certainly related so I'll try to explain to the best of my ability. Aspergers is a variant of Autism if memory serves. I like to see it as a disease (Even if it technically isn't) as that helps me cope with it.


Well. you are certainly clever. Sometimes we do have adapt the worlds labels and definitions to better suit our experience. In your case however, consider this; "A disease is a particular abnormal condition, a disorder of a structure or function, that affects part or all of an organism." I think it is safe to say this applies to your condition. However, as you said, what matters is what you think; what helps you the most.

After my long fight against my "horrid-stuff" I finally reached a point where I did not care what they called my "arch-enemy" since they did not understand much about it in the first place. When I told JJ that I have 3D, that is my little joke for the lowest common name used for some of my symptoms. In my case, because Arthritic illness comes in over a hundred forms and there is not a cure for a one of them, what would be my gain to know what the most correct label might be? For me? None. I don't care if they call it strawberry ice-cream as long as I can still buy the real strawberry ice-cream.

Medical science is nowhere near as advanced as I thought it was till I really needed the stuff. Again, I don't take this out on the Docs (at first I did - maturity comes in stages) most are good folks, they simply do not know enough and because of legal-fears, practicing medicine has been dang near destroyed in my lifetime. When I was young, they actually had "exploratory surgery"! Now imagine some caring Doc getting his patients' permission to take a look in desperate circumstance today. You have to be on your deathbed to get drastic efforts/measures these days; it doesn't matter that you have something that has you on the fast-track there to the very same place.

My symptoms nearly match ankylosing-spondilytis (the onset was identical and my thoracic has self-fused on 3 vertebrae) but because I tested false in one all important test, I did not receive the label. Even though, it is well known that sort of test is not even reliable. Sometimes logic is not in the middle of a diagnosis. As of matter of fact, today...a "machine must make the determination" for just about anything.


kiryu133 said:
Asperger's hinders me from easily understanding human emotions (Though people with aspergers tend to be very empathic and be good with animals) and the like and gives me a hard time to cope with social interactions. ...Ignoring people is probably the wrong word though. I just don't want to bother anyone so try to keep myself out of their way. If i meet someone i know I'll give a nod or maybe have a brief chat, however i don't like talking to people so it will be a couple of words at most.


That registers with me. I have a close relative that has Autism, and it is like that for him to some degree. He's a wonderful person but being understood has always been very difficult. I discovered he has gifts that I do not, just like every other human-"bean"<small joke> I've met.

Fight the good fight, whatever that means to you.

Thank you for caring and sharing.

Ps, In the end, probably the biggest bummer about all of this; is that my wife and I had this dream of starting a food ministry for poor-folks in our home county. However, because of "straw-berry ice-cream" instead of getting to serve the needs of others...well, you can imagine the not so devastating switch. It still bugs us and probably always will as long as we draw breath.

Make it great!    



____________
"Do your own research"

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Sleeping_Sun
Sleeping_Sun


Promising
Famous Hero
Townscreen Architect
posted June 06, 2015 09:54 AM

husham123 said:
Look, man, if you really, really feel painful, then take some time without talking to anybody, and staying alone and thinking. After sometime, you'll notice that you'll feel better, and think better. [...] This way, the pain have gone away, [...]
As someone who is quite familiar, with loneliness and (over)thinking, I must say that THINKING and BEING ALONE can be a very dangerous combination, depending on the person, the people around you, life experience, and few other factors... On one hand, yes, it can be beneficial if one has a strong character, will, and the one is generally an optimist (not to mention the family support, religion, etc.), but on the other hand, it can bring even more pain (amplified one, mind you), misery and sorrow... in some cases and situations even depression, contemplation of suicide, etc. Just be careful, that's all I want to say.

With that said, I do not want to talk out anyone from being alone and thinking from time to time, when the need arises. I just wanted to share my experience that it is a double-edged sword.

All the best!

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