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It IS In My Head

07 Apr

I was just reading the blog of a WordPress blogger who suffers from the same kind of pain I do, known as Central Pain Syndrome or CPS.  In their blog, they were talking about medications but I got the sense it was also kinda about how people who think CPS is a figment of our imaginations just don’t get it.  I’ve heard others who suffer with this say that they’ve been told that it’s all in their heads and they’re just imagining the pain and while no medical practitioner has told me that – and they’d be wise not to – I happen to know that it is in my head thanks to the stroke I had.

I don’t think they understand that it doesn’t take being in this kind of debilitating pain very long to make you want to do anything to make it stop, up to and, sadly, including killing yourself.  I belong to a Yahoo group for people with all kinds of CPS issues and when we get to talking about the types and amounts of medications taken, whew, it’s mind-boggling to see what a lot of people are taking and some of the treatments they’re subjecting themselves to in order to make it stop hurting.  We’ll even flirt with serious drug dependency since a lot of us are taking enough opioid class drugs – like Oxycotin and Fentanyl – several times a day to get our neighborhoods high and some, where allowable, are smoking enough weed to bring back fond memories of the 1960’s Flower Power movement.

I had mentioned during a recent post to the group that I find it necessary to really manage my medications to get some relief without running the risk of addiction and, of course, incurring expenses for the drugs.  For instance, I know that Fentanyl will do a number on me so well that I wouldn’t know who I was, let alone that I’m in such pain – and that’s both good and funny.  One downside is that Fentanyl is highly addictive and makes heroin look like baby aspirin; the other is that even generic Fentanyl costs an arm and a leg even if you have insurance to cover it because it’s not one of their preferred drugs.  Last time I checked, the .75mcg Fentanyl transdermal patch was costing over $300 for a 30-day supply and the pills were just over $235 for 30 days.

Another downside is that while it will make me forget that I’m in pain – I’m too busy being stoned to notice – it makes me almost totally dysfunctional; one moment I’m kinda coherent and the next, I’m so stoned I gotta lie down… and I’ve done it in some of the oddest places, too.  I had to get off of the patch because I simply couldn’t afford it and the withdrawal symptoms are a bitch.  I opted to use lesser strength drugs, trading relief for functionality and if you’re thinking that was a bad move, you’re right – it was because the stuff I’m taking now barely takes the edge off and is one of the reasons I can’t sleep for days at a time – and that’s if I take all of them every day as prescribed and, no, when I do that, the drugs laugh at the sleeping pill I take and kicks it to the curb; it’s like I never took it.  So, in order not to give myself some problems due to sleep depredation, I take the serious drugs only when I can’t cope with the pain anymore.

Again, if you think that’s a bad idea, it is; once I take the “good stuff,” forget about sleep then my appetite takes a hit and, oh, yeah, if I happen to forget to take the next dose, I wind up going through withdrawal – but the worst of it is feeling sick to my stomach.  They do get me quite high and almost to the point where I can’t do shit; but not so much that I can’t function as expected.  I have some of the weirdest dreams I’ve ever dreamt when I’m going full-bore with the drugs and while it’s often funny as hell, it’s also very disturbing.

And compared to some folks suffering with CPS, I’m taking baby doses of medication – chew on that one for a moment.  For me, it’s a terrible trade-off; I’m damned if I do, damned if I don’t.  I thought having the stroke was the worst thing that’s ever happened to me but the physical problems it gave me, well, I can deal with them.

It’s the pain that’s become the worst thing I’ve ever experienced.  I explain it like this:  Imagine spraining your ankle – you know what that feels like.  Then imagine that pain all on one side of your body from head to toe.  Then imagine what it’s like to have that pain every day for five years and counting.  Then factor in that everything in your environment triggers the pain, like the air around you and even the clothes you wear and being naked all the time, while nice and kinky, is even worse and perspiring feels like being bathed in acid and that even plain water on your skin is enough to make you have to gird your loins and really man up just to take a shower – you do not want to know what’s like.

You know how you say at times that you wouldn’t wish something on your worst enemy… but you really would?  I really wouldn’t do that with this because, as I also tell people who ask, it’s a miracle that I’m still sane.  Just the mental effort alone is staggering and while I’ve gotten better at shunting the pain off to one side, it just never, ever, goes away.  Oh, yeah, try having a sexual relationship with someone when you can’t stand to be touched on one side of your body.  I will say that not only do I fight through this because, hey, I still like and wanna get laid, but when I orgasm?  Wooo-whee!  Can’t even begin to tell you what that feels like – I don’t have the words to describe it and if I did, eh, you’d probably not want to know about that, not because it’s TMI (like I care about that) but the best way I can describe it is to say it’s beyond good… and beyond scary.

Unlike other sufferers of CPS who’ve had spinal injuries that can’t be repaired, my pain is in my head – yep, your boy is officially brain-damaged and, nope, it can’t be repaired or, if it could be, I’m not willing to have them fucking around in my head like that because the damage is way too close to my brain stem.  Like most stroke victims, there’s always that chance that I might stroke again and while I can kinda accept that (and try not to do anything to make that happen again), my biggest fear is that if it happens again, I’ll survive it and be kinda/sorta okay… but the pain will get worse.

I can deal with the gaps in my memory; I can cope with the muscle weakness and lack of the fine motor skills that allowed me to play “The Moonlight Sonata” beautifully… but I know I couldn’t deal with more pain because I’m barely dealing with the pain I have now.  I could choose to go broke and stay doped up but I wouldn’t be able to do anything, forcing my wife to really take care of me.  Nah, I can’t abide by that – my ego won’t let me and this is probably one time being a stubborn, hard-headed guy actually has a good purpose.  I fight the pain and it’s been a five-year battle so far.  It’s not quite a stalemate; there are moments when the pain roars in triumph when I have to reach for the hard drugs that scare the shit out of me because of what they’ll do to me.  But while I’ve not gotten any better, I haven’t gotten any worse so I see that as a win for me and I am more than determined not to let the pain win because if I lose, it will lead me down a path I will not survive – and I ain’t hearing any of that!

They say it’s mind over matter and that if you don’t mind, it doesn’t matter – but this does:  I do mind big time.  As strange as it seems – or maybe it’s just me – this has been, at times, funny as all get out, like not being able to tell whether I’m not or cold or, as I like to say, the left hand really has no idea what the right hand’s doing.  It’s like they can’t agree on whether or not it’s hot or cold and, sometimes, I can’t tell because I really think my body gets so confused it just says, “Oh, fuck it…”  Don’t get me wrong; this is some serious and potentially dangerous shit… but I thank God for giving me such a warped sense of humor that’ll make me laugh at this.  Plus, I laugh at it because I already know crying just makes it hurt even more.

I’ll leave you with this final thought.  From time to time, I’d read or hear on the news where someone with a lot of pain – usually terminal cancer patients – would choose to end their lives.  I didn’t understand it and that’s because I had no idea what they were going through so the decision to commit suicide didn’t make sense to me.  I understand it now and, yes, there are times when I think that dying wouldn’t be all that bad because it would be the final solution to making this awful pain go away.  But, uh, that would make me go away, too – not even trying to hear it or go there because, pain or no pain, I love me and even with this pain, I’m too much of a coward to off myself… but the thought has been put into my head by the pain and my mission in life is to keep it locked away.  One day, I will die… but not because the pain made me do it.

On to other things!

 
8 Comments

Posted by on 7 April 2011 in Life, Living and Loving

 

Tags: , ,

8 responses to “It IS In My Head

  1. marriagecoach1

    8 April 2011 at 13:45

    Don’t you feel like punching out people who claim it is all in your head?

    Have you tried accupuncture? I would suggest going to a good accupuncturist to try and get some relief.

    Blessings
    John

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    • kdaddy23

      8 April 2011 at 15:28

      What I’d like to do if they were stupid enough to say that to me is cause them some similar pain so they can understand. I’ve talked with others who suffer with CPS about accupunture… but no one who has this condition as a result of a thalmic stroke has reported any success in mitigating the pain. Folks with CPS as a result of spinal injury and even shingles have reported some relief – but I know it wouldn’t work for me; there’s have to be a way to shut off the nerve impulses to my entire right side and there’s just no way to do that. I’ve come to understand that the pain is a result of hypersensitivity; what I feel is hyped up and interpreted by my brain as pain along with the stresses my weakend right side deals with when I move and stuff like that. For instance, when I type, I’m stressing the muscles and tendons in my right hand and that causes pain; but the increased tactile sensations of my fingers on the keys also gets translated as pain along with everything else I can feel on my skin.

      Some people have a stroke and have numbness… and I’d rather have that than what I’ve been living with for the last five years. At its worse, even a slight breeze can set me into fits – and all because I can feel it more on one side of my body than the other. Another example: I know it’s about 72 degrees in the room I’m currently sitting in; my left side feels comfortable, my right side feels like I’m freezing and I’m wearing a sweater. While I’ve learned to “ignore” the crazy feelings wearing clothes – covering up helps but doesn’t – I can’t cover my hands or face; wearing gloves doesn’t help because, at some point, my right hand will start to perspire and here comes the burn.

      It ain’t pretty, is it? It’s beyond annoying and is debilitating both physically and mentally – yet I have to endure.

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  2. marriagecoach1

    8 April 2011 at 16:12

    The reason that I suggested accupuncture is because while I have never tried that, I give a lot of people almost instantaneous relief with accupressure. I do so by applying finger pressure at the base of the skull pressing inwards and upwards at the base of the skull where there is indentations on the wings of the skull. It has worked every time for headaches. It has also turned some women on.

    Blessings
    John

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    • kdaddy23

      8 April 2011 at 16:29

      My martial arts training got me familiar with the various pressure points on the human body so I understand a lot of what accupuncture does and how it can affect parts of the body (and sometimes lethally). The problem is how to apply the necessary pressure in a way that has an effect on one side of the body as a whole – and you don’t even want to know what I feel when I touch one of my pressure points with a finger and I don’t want to know what a pin-prick would feel like. Accupuncture can take care of a lot of things… but I still don’t believe or can prove that it can stop me from feeling things on my skin without causing some permanent damage to my already damaged nervous system. As I said, it’s not a problem with my spine – the problem is literally inside my head and at the base of my brain where it is untouchable. Accupuncture can shut off certain nerve impulses… but how do you shut down someone’s skin, the largest organ on the human body… and then only on one side? No one’s figured out a safe way to do this and the drugs don’t stop the pain; they just get me stoned enough that I’m not paying attention to it a whole lot – but it is always there: It just never, ever, stops, not even when I’m sleeping. In order for me to not feel it when I try to sleep, I have to be totally unconscious and, for me, 3mgs of Lunesta will do that provided I haven’t taken the cocktail of medicines to hold back the pain. And, bad for me, I’m one of those people who experience the reported bad taste when taking Lunesta (Ambien doesn’t work on me).

      And maybe I’ll blog about what it feels like when I get horny…

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  3. marriagecoach1

    8 April 2011 at 16:38

    Well I have a high degree of confidence in the oriental accupuncture. I am told that the needles are so small that most people don’t even feel the puncture. You have tried everything else, it could not hurt to try accupuncture. Just a thought.
    Blessings
    John

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    • kdaddy23

      9 April 2011 at 01:01

      I get that, John, and I do appreciate the recommendation… but I’d feel it and you’d really not want to see how I react when someone accidentally brushes up against me, let alone stick a needle anywhere on the right side of my body. God bless you for your thought and I do value it just the same. Before the stroke and all that, it’s an insignicant stick; after the fact? No, sadly, the pain makes me more prone to near-instantaneous violence and I go out of my way to avoid that more now that I ever have before.

      Let me try to describe it: Have you ever been sunburned? If so, you know how that burns and stings and all that, right? That’s how I feel at the low end of my pain and, at its worst, I want to kill myself and, oh, yeah, it fluctuates all day, every day. Now, if you wouldn’t want someone touching you when you’ve been badly sunburned, imagine how I’d feel about a tiny pin-prick. That and I already know how I’d react and, to this day, I am still ashamed of myself because how I did react to being stuck just a tiny bit on that side – there’s method to the madness.

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  4. marriagecoach1

    9 April 2011 at 13:48

    Well you know your own body. One of the problems with doctors is that they develop a “God complex” and don’t listen to their patients. By the way, what do you call the guy who graduates dead last in his medical school? Doctor.

    I don’t make the same mistake.

    Blessings
    John

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    • kdaddy23

      9 April 2011 at 13:53

      Yeah, I’ve heard about those guys and, thankfully, my doctor listens – we have had great interaction for the last 20+ years. I talk, he listens; I ask, he tells. If a person’s smart, they participate in their health care and just don’t entrust their lives to someone who won’t listen!

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