Recorded scrap of paper – Christmas 2013 breakdown

Christmas 2013, I broke down and I cried…

It’s uh, it’s Christmas. And uh, you know, I never get a break from this.  But it’s Christmas. And uh, my little boy was so excited to play Battleship. And I haven’t played it since I was a kid and I thought it’d be so much fun. I played on his side and Mama was on the other side. And uh, and it was physically hard to sit there, and you know, there was a lot of light in the room – I can transcend that – and I was having a good time, except that all those little holes in the board – the fast pace of the game, even though it’s not a fast paced game – the intellectual engaging of trying to figure out ‘Okay… I missed on this spot, is there a battleship on this spot’, you know, whatever.

It just irritated my brain so much and I tried so hard – to uh – to not let it show. But it irritated my brain so much that I’m now in such an irritable mood. Not towards my family, you know, cus I don’t take it out on my family at all.  But I was in such a great mood, it’s Christmas.

You know, and uh, my body. I get through what my body does. But I just wanted to play a game with my little boy. And uh, I cant ‘ – I can’t do anything.  You know? I can’t play any games that tug at my brain at all because it irritates it so bad. I can’t do anything physically. But why do you got to take my brain? I just wanted to sit there with my little boy. And play a game. It’s 5 years later and I still can’t play a game. I just want some minor little bit of existence here, you know.  I bet you all the f**kers who did this to me are sitting with their kids. They’re having no problem playing a game. They have no problems taking their money and going home.  Look what they did to me. I just want to play a f**king game.  Give me just ONE day… It’s f**king Christmas!

Recorded scrap of paper – 16 November 2013 1:33PM

November 16, 2013 1:33PM

Concentration is incredibly difficult for me, amongst other things. There’s a lot of examples, but this morning is a pretty good example. Something real simple.

In the mornings I have a much easier time, making breakfast. There’s a much higher percentage of chance that I can do that. But come lunchtime, absolutely  by dinner time, my abilities are lessened.

But at any rate, this morning, about 8 o’clock this morning, so I was about as fresh, uh, about as fresh as I can get as far as mental sharpness and abilities and such. And uh, I made my waffles. I made 3 of them. Aedan decided he wanted one. Which was difficult for me to process splitting what I just had into another plate and giving him one. Super simple, but it was tough for me. But what I’m trying to record about was we have some guys downstairs working on the basement.  And um, as I was putting the waffles on my plate, one of the guys said ‘hey Michael I got a question for you, can you come here’ or whatever it was.  And it was a total shift of course of subject from ‘I’m eating my waffles’ – which takes a lot of concentration – Making them does, walking there, moving my arms, everything.  Every little step involved in that – reaching your hand to go get the waffles, everything takes intense concentration.  And so when this guy asked me – or even mentioned my name –  it broke my concentration. Sort of like what you do to a dog when he’s sniffing something you don’t want him to go towards, you break his concentration.  Well the same thing happens for me in that I don’t seem to have much working memory, just the guy downstairs bringing up my name snapped me out of that concentration of accomplishing a task which was getting the waffles onto my plate. Then I had to get a fork, which was another step, which irritates my brain anyway. But when this guy called my attention, I couldn’t seem to switch at all back to my waffles.  I dropped them on the counter, wherever they were and I had to go handle that. Um, because his question was important. And my instinct is to just try and respond to whatever anybody does or says, uh – still.  So I just put my waffles down wherever they were, I wasn’t even thinking about it. I think it was the countertop, and then later came back to them.

It was a real struggle trying to pick back up where I was – to figure out “okay, uh, where was I” … I had to get them on the plate. “They’re not on the plate, they’re on the counter – uh…  I got to get them from the counter to the plate. Shit… I need a fork. Uh… fork…” and… and I get frustrated about needing a fork because then it breaks my concentration from trying to sit down and eat. Anyway, its extremely difficult. No matter what it is – no matter who asks me what. Any break in concentration from what I’m trying to do is tough because I generally cant get back to the spot where I was when I was distracted. Sp that might mean that if, say, for the past month Im solely concentrating on trying to get words out… or solely concentrating on just getting  through the day because my baseline’s lower – or whatever it is.

Um, if Nikki asks me if I want to eat something, for example. Of course I do, and I will. But that’s something – that’s something that’s a departure from whatever it was I was trying so hard to concentrate on. Even if that was just movement from one place to another. It’s gotten better in that it’s not as painful – but there’s a physical sensation. I don’t know if I’d necessarily call it pain or what. But there’s a physical sensation and I feel tunneled. My vision feels tunneled and I get very detached, even more so. Uh, this is so hard to explain. But mentally I get a big detachment and I almost feel tunneled (my vision) and I’m so disoriented.  When that man called my name this morning, and all I was trying to do was sit down to eat my waffles – that’s how basic my functioning really is. And that’s how hard I have to concentrate to accomplish these things at all, or to stand a chance at accomplishing something.  Even just walking, everything I do takes intense concentration.  I find myself, now that I’m struggling harder to pay closer attention to my everyday –  which I don’t like to do because you’ll go crazy if you do.  But anyway, I’m trying to pay more attention to it. And I notice how much I concentrate on every little step – still after 5 years.

I remember this in the chair (where I was bedridden for almost 18 mos), if someone was calling me and the phone was right next to me, I knew I wanted to answer it so I could scream HELP – so someone could come help me. But I just couldn’t process how to move my arm – even if I COULD move my arm and most days I couldn’t – but on the days where I could at least move my arm enough to grab the phone or something, I couldn’t process and make my arms or body do that. Which is more of a mental disconnect.  I couldn’t understand the steps I needed to take and couldn’t get myself to take them. I was very confused about the process of reaching to pick up the phone.  So I remember that, but I guess I’m sort of shocked at how it still affects me every day.  I’ve just learned to cope and adapt.

But today was a good example in that it’s something so horribly minor, you know. That guy just calling my name is what did it. And I was doing something so super simple. Which is just trying to get my waffles from the toaster, which I was able to do.  But then I had them in my hands and somewhere in between the toaster and the plate, the guy called my name. And that was it.

I was frustrated, but I hid it very well. But its very frustrating for my brain and I cant help but be frustrated.

Recorded scrap of paper – 03 November 2013 – 2:10PM

03 November 2013 – 2:10PM

 

The more tasks something has, the less the chances I can get through it. Especially when my baseline is lower and my brain and eyes tire faster – as well as my body does – faster than they do at the moment. And um, at times like that – and that happens nearly every day – certainly at the end of the day. To varying degrees and some days its like that all day.  So for example, if I’m going to make myself something to eat. Or would like to try. On those kinds of days, if… See – I don’t think people realize how many steps there are in actually accomplishing a small task.

If I have to get a spoon from the sink that’s dirty, I have to first understand the pile of dishes that’s there. Then learn… figure out how to navigate it without knocking stuff over. Actually get my – coordinate getting my hand in there… all that stuff takes intense effort and concentration for me. And um… especially when my baselines lower. Even, um, even  if it’s something as easy as getting a clean dish out of the dishwasher. That sometimes… all the sudden realizing I need a spoon, right, for example. And uh, I’ll go “oh shit, it’s not in the drawer”. Then my brain goes okay… and it really takes a while to swing around like a glider, to change direction of thought, to go “okay, where can I find one…” And I look around slowly, you know. And I’m very detached and I feel very confused and just lost. And I look around very slowly – cus I do everything slowly when my baselines lower – and um… I look around slowly and I see it’s in the dishwasher right? And uh… cus this happens often.

And then, ok. Switch gears again. Get it from the dishwasher. Ok. I gotta open the door. The handles closed. Ok. I have to flip the handle. You know, and so on and so forth. Everything that’s involved in getting down to get the fork or the spoon or whatever it is. Ok, find the spoon – shit. They all look like knives or forks to me. You know and it’s too much… it would make sense of course – cus Nikki brought this up once or twice – you know, it would make sense to grab them and put them in the drawer. And I’m absolutely that kind of person, I would. But that’s an extra thing I can’t do at the moment. And if I do, I’ll lose my train of thought and wont be able to get back – you know in my head – to making the sandwich or where I was making the sandwich. Uh… at any rate, all these things are levels of complexity and they’re extra steps. And if I then have to go get something in the refrigerator , ok – shit. That’s an extra step.  Open the refrigerator door. My God, if it’s not right in front of me… where do I find it? Oh shit. It’s in the back. And then that becomes a process that I try to figure out … and I struggle to figure out, uh, spatially how to get something out of there. Like, if I have to move stuff – I’ll put it on the floor if I have to that’s fine. But that’s an extra step that my brain has to think of. An extra challenge my brain has to overcome. Whereas when I was able bodied, of course, those things are automatic. I would just move stuff, I would just grab it.

And um, so when I’m not doing so well or I’m slower, things get sometimes impossibly difficult. Just by the number of small steps that then compound. On top of the fact that my brain and my eyes tire – so if it becomes a longer, more drawn-out process, um, then I can’t do it. But for example, on those days I might not be able to make a sandwich but maybe I can make oatmeal. If all the conditions are right. If the bowl and the plate that I use to do so is exactly where it should be. If the oatmeal is where I always put it. If the measuring cup is on the wall where it should be. If the trail mix (container) has trail mix in it. If that’s not buried. And that one rarely is, it’s usually on top. But um, at any rate. So that’s how it is. And uh, I have more success now that all the things are laid out  – well, not all the things – but a couple of the things I regularly use are laid out and they’re labeled. They’re clearly labeled and that’s helpful for me…

Uh… yea.

Recorded scrap of paper – 25 October 2013 – 8:20PM

25 October 2013 – 8:20PM

Although I’ve been doing better recently, a lot of times I have a hard time talking a long time. At least later in the day, like it is now. It’s 8:30 or something.  And uh, things are always much worse starting in the afternoon. Goes downhill, always.  But, I have a hard time getting through the mental state to know to pick up or find this recorder. A lot of times when I do I get mentally lost. Like now, my breathing is just shallow. So I – I need to take a break and stuff. A lot of times I’m silent. Um, but it’s hard getting my thoughts out – even when I feel I have some I can get out. If I don’t have someone – like a scribe chasing me around listening to me babble – which would sound absolutely bat-shit crazy. Um, I can’t always get my thoughts out because they’re always so random and scattered. I started this recording with something specific I wanted to say, and, having a very hard time getting back to it.

And uh,… anyway… Thoughts into actions – or the thoughts out somehow. By the time… if I’m able to get to the computer to start up the video…  like I need to be in front of a piece of media, uh, recording media, when these thoughts come. And it somehow just needs to be out. Um… because I don’t have the physical stamina often, at times like this,  when I get the thoughts but I um, my body’s having worse issues as is my mind. My um, my ‘ability to get things out’ mind. So I lose my train of thought to be able to write often, and if I try to type it my fingers start having a hard time, my arms start having a hard time,  my eyes start having a hard time so that’s another big problem. My eyes get so tired, they just fatigue so fast. Still orders of magnitude better than it’s worst point. But… but all these different issues that I have come together because they all happen at the same time to make things – not impossible – but um, uh… not successful. It doesn’t happen or amount to anything that becomes of any effect on my situation. Nothing comes of it. I either lose the scattered pieces of paper – because I’ve done this for all these years. Not as much recently, the last year or two, uh, I – I didn’t give up of course. I never give up. Clearly, I don’t give up.

But uh… See and the more I talk too in this, I try to get thoughts out but I’m distracted by my heart. Right now. I’m distracted by the pains running down my legs. The different types of pains in my legs and  running down my legs. The tightness in my chest. I’m distracted by my eyeballs that hurt so bad. Distracted by my face that tingles, by my lips that hurt. Well, my lips don’t hurt that bad, I just feel my lips. And so then I lose my place. Everything becomes very frustrating. I absolutely don’t quit because of frustration. You know, I’m able to handle frustration, but it’s there.  Frustration – it’s not that it never exists.  Unless we can get to a place that that happens, I would love that. But, I think its your ability to quench that fire as fast as possible – and that I’ve… I don’t think I will ever ‘Master’ something, but, I do think I’ve done an amazing job.

Wow… my limbs are so heavy. You know, and I, this is normal. I uh, I just live with this. This is better than it’s been. Far better.  Thankfully I’ve remembered the Amino Acids and the ProDHA about 6-8 weeks ago. Since then things have been better, still doesn’t amount effectively too much. But.. but you’re grateful for your small wins. Effectively it’s a small win but to me, it’s an order of magnitude of functionality in the sense that I’ve been able to… able to talk to my son more coherently when he wants to ask Daddy a question. Or be able to respond in a way that isn’t confusing … or scary to a child. Um, we’ve had to tell him that I have a ‘loading’ screen. You know, like a ‘Now Loading…’ screen like you see on a video game or a computer or something. And when I pause, it’s because I’m trying to process what he’s asking. Because I have a very hard time switching, uh, from… uh, transitioning from thought to thought or from streams of thought to streams of thought, um, that I don’t try to control. Meaning if someone asks me a question, that’s a change that I didn’t make. And that becomes a problem for me to overcome. So when my Son asks me a question, a lot of times I have to pause – well more than a lot of times, almost always. Except the last… there’s been twice I think, that stand out to me as being very well recently. I’m very grateful for that.

Uh, we’ve had to tell him certain things now more so he doesn’t get hurt emotionally somehow by him trying to read Daddy’s reaction. Because my reactions aren’t’ always consistent. Because I’m in a very dynamic situation with my physical body and my mental abilities and state. And so I can’t always respond as playful, or as quickly, or as… um… I might not be able to look as happy consistently – although still happy- he can tell the difference. He’s a very intuitive little man. Little boy. Um…

I have to take a break.

Recorded scrap of paper – 25 October 2013

25 October 2013 – 8:05PM

I’m standing here in the Garage like I always try to do – well not always but often. Very very often try to do. I’m standing because I try to stand as much as I can. That’s my ‘Defiance’. And uh, I’m doing what I frequently do and that’s either replaying conversations in my head when I was desperately trying to ask for help  from somebody – unsuccessfully – and uh, as Nikki pointed out today… uh, I didn’t realize. I’m having a hard time figuring out my mental, uh, situation as well. Nikki pointed out that when I lead the conversation, I have a much better time. Which is why people often, understandably, misread my abilities. When they lead the conversation, like happened last night, I get so… I get very lost and it’s like – like when I was a kid. In the Indiana Sand Dunes, running down the hill. There’d come a point where such a steep Dune and such a steep hill – at least to a kid – uh, you’re running with giant leaps and steps just trying not to fall, tumbling down end over end. And that’s precisely what that point of ‘Terminal Velocity’ – that you reach – is precisely what happens in my head when I start to get lost. And that’s how my head feels. I’m just rushing to keep up.

But I’ve practiced keeping a straight face because Doctors would otherwise, completely dismiss – even quicker anyway – dismiss what I’m desperately trying to tell them unsuccessfully. Explain through the mental problems that I have… besides it [my list of symptoms] just being a giant scope in the first place to figure out on your own. And uh, I’m not depressed about the situation that I’m in. I’m just at the point where I’m waking up mentally enough to see the reality of where I am. And I realize I’m just not getting the help I need. Simply not getting the help I need in any way, shape or form. Well, that’s not entirely true. I’m just not getting the basic help I need. And I’m fighting so hard, in every conceivable way that I’m now coming to the realization that maybe no one will ever understand how hard I fight every day. And how hard I fight through a mental fog, too. Keeping a good attitude and trying hard to make sense of my thoughts, on giant white boards behind me here in the garage, that I had to fight through a mental fog to ask a friend to help me with. Then fight through a mental fog to try and describe what I was to say and do. Everything I’ve done is a huge, HUGE effort on my part and uh…

I’m going to take a break.

Recorded scrap of paper – Friday 2 September 2011.

 

I’m on autopilot of sorts and  uh, I guess you could say, you know, with the detachment from the reality around me in the sense that everything’s like a movie or something. And while I can now control my limbs and talk and function, to varying degrees, all of which is minimal at best, but nonetheless very degrees of completely nonfunctional, nonspeaking, nonmoving, to looking good on the outside for a few minutes at a time. But being on autopilot, by that I mean, I do a lot of things that I don’t know how I do them. For example – well because my vision is so undoubtedly and obviously uh, proven, uh, but my vision is so poor at times. And I am trying to concentrate as best I can on how I do things and why maybe. At least try my best to make a mental note and pray that I’ll somehow remember it – by some minor miracle.  But at any rate, um, so I’m starting to notice things and so I think its real helpful to record into this recorder.

But I think I may have figured out a way to start to summarize some of it and it began with me being on Auto-Pilot, in the mental sense. I also have severe cognitive difficulties which I believe is a separate issue. Because I’m confused, my thoughts are scattered, wholly disorganized, completely random and rare. Although, with Glutathione daily and also with Adderall for some energy and a little bit more focus, um,  I’m able to start to articulate some of this a little bit better as that streak of glutathione successfully, which is and has been really difficult to achieve… but if I can continue a string of Glutathione back to back everyday, and Adderall, um, a little more movement is possible and so is a little more thought.  Even with the Glutathione alone, if I remember right, I might have made note that it seems that as time goes on that I start to think a little bit better at some point. Although I think it plateaued, but um…

I think I can finally start to summarize my days, uh, somewhat, and it’s that my function just in general, overall – visual, audio, mental, of course physical moving it’s kept to a very very bare minimum and I save my movement for stuff that’s important. Like going and uh, maybe tickling the boy a little bit or cuddling on him or something. For the most part that’s all I’m capable of doing generally. I’ve never been able to play with his T-Ball set – none of that kind of stuff. But its kept to a minimum.  And so in the morning I’ll go and sit on the couch in the Garage, because it’s reasonably warm out, sometimes very warm out. And I just rest. I just simply exist. Although I’m always in a very peaceful state whenever I become very detached or very spacey or when my body starts shutting down. I’m always in a very peaceful state, I’m happy and I’m grateful for everything I have. I know that this sucks, but I feel as though I’ve learned to deal with all of it very well and search for the beauty of life – which I think I’ve done as best I can. I’m in a peaceful state, but I just simply exist. I’ll stare at the trees for an hour or two or three, or however many. Or I’ll stare at the sky. I try to move a little bit, and even if that’s pacing, or standing up looking like I’m doing something… um, but really just resting my eyes and my brain as well.

If my body is capable of doing anything, at all, I try to push it to its absolute maximum. Whatever that might be. However little, or however much. I push my body to the maximum, but I try my best to rest my eyes a bit and my mind – I found that when my body is able to do something for 5, or 10 minutes and I was sitting on a nice stool with the car in the garage, just working on cleaning some spots on the body or something very minimal. Only for a couple minutes, and then I would have to sit somewhere else. Or do something different, or even just stop entirely and stay sitting wherever I was. Just kind of space out and rest myself. That’s a good day. A very good day.

 On the not so good days, I stay on that couch and I don’t move. Or I move very very little. And a lot of times I’ll keep the garage door closed if I’m doing that because I get kind of self conscious, you know. It kinda looks weird you know. Here’s a guy that looks reasonably normal on the outside just sitting there. That’s kind of weird, so… But even on the bad days, so long as I haven’t been without Glutathione for too long, even though I can’t move or its very hard for me to move very much or sustained or whatnot. If I… It seems that I’m saving my energy, whatever I might have and it’s usually not very much, for the last half hour or 45 minutes of the day before Aedan goes to bed at about 6 o’clock. It’s like clockwork with the kid. So it’s perfect because I hit the wall at about that time, at the latest. But that last half hour, 45 mins… man, I just swing for the fences. Anything I can do, short of blacking out – you know because I’ve kinda learned to walk that line very delicately …  I just go for it. And I love life. In those moments. I just kind of exist all day peacefully just saving up for those moments. But anyway…

Maybe every 45 minutes or an hour, maybe a little more so sometimes I suppose, I will go inside from the garage from just sitting on the couch or slowly and gently pacing back and forth – I mean very slowly, or anything. Then I’ll go inside and maybe give the boy a kiss on his head or something. Or I’ll sit with him for a couple minutes, or as long as I possibly can stand to. Because the pain becomes very intense when I stop. Oddly. So when I can move it helps some of the pain, sometimes. And it’s only certain types of pain it helps. Doesn’t help all of the different types because there are multiple types at once. But after a couple minutes with Aedan or however long I can sit – and again, a lot of times its very difficult for me to sit still. In the garage I have the freedom to move and not look normal about it. Just sporadically get up off the couch and walk to the table which is 2 ft away in the garage. Or anything. I can move very haphazardly and randomly which helps sometimes. But then of course it zaps whatever physical energy I had. But sometimes it helps keep some of the pains from getting too bad – some of them. But anyway, my eyes get real tired. My brain gets real tired when thinking. And again, it seems like that’s a completely separate issue. The cognitive problems  vs how disassociated I feel with the world, disconnected. I don’t remember anything about myself in a lot of ways, I don’t recognize myself as me… it’s really difficult to explain. I can’t, I haven’t watched movies in years. Since I got sick. It’s just something my brain can’t do. If I can watch anything at all it’s things like American Restoration or something. It’s a half hour show where I can just space out, there’s no real storyline that I have to pay attention to like anything else. It’s just watching pretty images of some guy restoring a random 1920’s firehouse or something weird. Or American Pickers for the same reason. But generally my eyes just blur out and I’m completely spaced just staring at the TV. Every once in a while checking in when something either catches my interest and I seem to wake up just a tad, or if I’m not capable of even that some days or at some points, then I just kind of blur out and stare at things. And try my best not to look weird when doing it. And uh, it’s kind of hard. Kind of hard to describe is what I meant.

It’s hard to fight through a lot of this because it seems that if I can scream loud enough at the movie screen, or somehow get this Auto Pilot to do something, like try to feed myself – and it’s rare that I’ll remember or realize I’m hungry. I lose track of time. When I’m in that blanked out state, which is more often than not, then the concept of organizing some kind of food setup for myself, finding the food, what do we have, what ingredients can I find… or, you know, the normal stuff. Open the fridge, what do we have… visually I’m almost immediately overwhelmed with the fridge, and I get – I don’t know if confused is the right word but, um, all of this again with a completely neutral reaction. I’m not having any emotional reaction. I’m not freaking out, I’m not happy or sad. I’m just at absolute peace somehow. But things just overwhelm my mind in the sense that it can’t seem to process it. Again, like looking at the fridge, it just confuses my brain somehow. But if I can get through that, which is difficult, and trying to fight through that sometimes it causes a physical pain in my head – in my brain – it’s amazingly difficult to describe. It’s almost tough for me to believe, but it’s true. I even noted that a long time ago.

But then, I don’t have the energy to do any of it at some point. The physical energy – my body starts just shutting down. All of the sudden it’s like a weak battery in a flashlight. You know, when you first turn it on you might get a little something out of it for a couple of seconds. And it seems reasonably bright. Nowhere near full power, but the bulb is bright enough. And then all of the sudden, once it starts to dim just a little, all of the sudden at some point it just starts going down down down down bang. Like it just starts to slide down a little, getting dimmer and dimmer, then it hits this slope and bang. Gone. The light bulb goes out.

That’s kind of what it’s like in my body. As if I can get a short burst of energy or something, like turning that flashlight on after you let it sit a while. The bulb lights up, and then I might try to do something. Like get off the couch in the garage and try to do something that would be productive, or that might entertain my mind. Like making a little jump for Aedan for his Monster trucks out of wood or something. I have varying degrees of small amounts of energy. And if I can get up and do something – so for example even going to the kitchen to try and find something to eat, uh, do everything I can, fight as hard as I can to feed myself. Then I get confused about it. And again, that’s IF I can remember, IF I can get close enough to reality and/or scream loud enough at that movie screen for that character to do something, then my mind is actually confused by the process. And if I can somehow get through THAT, I end up with very little, if any, physical energy to actually do it. And so I just bloop –  that’s it. I mean again, I don’t freak out about it. I’m in a perfectly peaceful state. I mean, it is what it is. Freaking out is a luxury I don’t fucking have. So I don’t. I mean, what’s the point? It’s not going to change anything, I’m gonna be like this. And freaking out is going to rob Aedan of a Father he can look back on with any goodness. You know, and it’s going to take away a lot of his world too, just by the negativity. NO. You know, it is what it is.

I’m not even that connected to reality in real-time when those things are happening to say what I just said, or to think it. It’s just the way it is. I’m perfectly cool about it. I don’t even process it, it’s just like POOF – a fuse gets blown and I’m just totally spaced out. And that’s it. Then it’s just like I’m some Zombie robot or something. I really can’t do much about it, so I just go back to wherever I was sitting. Or just go sit on the couch in the living room if it’s later at night and Nikki’s working. And I’ll just sit. Because that’s all I can really do for the most part. And I just, you know, exist. Happily and peacefully, but I exist.

I kind of went off course, but I’m just trying to let it all out as best I can. So I kind of lost my original point, but hopefully I’ll get something useful out of this later.