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.

Fragile: Handle with Care


My existence has become fragile. Leaving the house presents a plethora of challenges from being sensitive to light, being sensitive to excessive motion and sound around me, all the way to the fact that movement is extremely difficult and very, very costly. Here’s one such example of just how fragile I am and how quickly my day can take a dramatic and ugly turn for the worse.

I meant to post this here a while ago, but as many of you experience as well, my brain is too busy trying to make it through the day that I don’t have much left for functions not related to daily existence. For some of you, you may not have yet noticed the effects of stress and/or anger. I noticed in the first 5-6 weeks of all this.  For me, having had a severe reaction, the effects of stress or anger are nothing short of horrifically ugly. Still, 5 years later I struggle with this daily.  Please, I would love to hear from those who can relate. It took me about 3 weeks to stop shaking and for the added pain and electrical sensations to begin subsiding. Just about this time, the flood hit Boulder – which only served to make things worse for me physically.

And again, every time my baseline gets lowered, it takes longer for me to get back to my previous baseline. Most of the time, I never make it back to my previous baseline. My new baseline is permanently lowered and the cycle of one step forward, two steps back begins all over again.

I wanted to post about this and my thoughts on it. But when my baseline gets lowered (like it was that day) I essentially am forced to crawl back into my shell until it gets better again. My brain and eye abilities follow my baseline too, so when things get worse, I get real quiet. Just the opposite of what you should be when you need help.

Even making food for myself becomes prohibitively difficult during those times. I’ve learned to deal with the daily fluctuations and the downward trends, but after 5 years it’s getting more difficult to cope. Especially since many of my basic needs still are not being met. ** I STILL DON’T EVEN HAVE A COMFORTABLE BED TO SLEEP IN!!! **

After 5 years, we’re still simply not getting the help we need. Makes it tough to get out of bed everyday when you know that no matter how hard you fight, you still can’t succeed without the basic help you need as a human being. Then, when I DO force myself to get out of bed everyday without fail, things like this can immediately destroy any progress I’ve worked so hard to make. Just erases it completely and sends me into a very frightening downward spiral of pain and neurological issues.

Doctor visits are no different. They leave me in the same state.I guess my point in posting this, besides just sharing, is that I would like to hear from those who have reactions like mine to stressors and/or anger. I know why this happens, Neurologically speaking. I was fortunate enough to have a Neurologist explain that part (at least). But I’d still just like to hear from others about their experience with Neurological symptom increases with stress or anger.

From my Facebook post – 6 September 2013

Yesterday was a very rough day, some people’s souls are just so ugly.

As you know, I rarely get to leave the house. These last 10 months or so have been rough as I’ve experienced some fairly big setbacks, but I’ll get to that another time. 

Yesterday, Nikki had a root canal and had 2 wisdom teeth pulled. She was a mess, and it was time to pick Aedan up from school. There was no other option, so I drove her to the school. Besides the physical challenges I face daily, I would have been mentally unable to get through that on my own, it’s too much for me to process. The world still happens too fast and my mind and eyes both become quickly confused and overwhelmed. Just like many of you are experiencing.

I parked in a Handicapped space and made it about 50 yards to the door Aedan comes out of. For the last few days, the light tremors had come back. I was already shaking a bit. I made it back to the car, clearly having a difficult time. This was NOT one of the many times this might appear invisible to others. Once I got back to the car, there was an older woman walking around my car, clearly agitated. She asked who’s car it was. I responded that it was mine and I started to try to get in.

She stood in my way and demanded to know if I had a Handicap sticker/placard. I said no. I have permanent Handicap plates. Two of them in fact, front and back. I expected that to be the end of it. But apparently ugliness knows no bounds.

Instead of walking away after seeing my plates, this woman actually had the audacity to block me from getting into the car and proceeded to tell me how I took the spot of a little girl in a wheelchair and how that since I decided to park there, they had to wheel her further. She went on and on… I was stunned. 

In front of me was this woman who was hell-bent on badgering a clearly and severely handicapped man (with PERMANENT handicap plates) for parking in a Handicap spot.

First, my brain was too confused to respond. My brain knew what it wanted to say, but once again, I couldn’t speak. That in and of itself is a hugely frustrating part of this sickness. But worse still, is that instantly all my electrical pain, shakes, confusion, etc all became dramatically worse. I immediately found myself in an electrical storm of intense, shaky pain. This is how my body responds to even minor stressors now. I learned about stress/anger and it’s horrific effects within the first 6 weeks of becoming “floxed”. Now 5 years later, it still has the same effects. 

I wasn’t then and still am not too upset about what happened. I wasn’t even that upset at the time, just more in shock I suppose. But even minor stressors will trigger an instant and massive increase in all types of pain, mental/visual and mobility issues. Almost 24hrs later and I’m still shaking and trying to cope with the substantially increased difficulties and pain. Thankfully I’ve learned how to control even small amounts of anger most of the time. If I did allow myself to get angry or more upset than I had been, I would be in a far bigger physical nightmare than I am at the moment. 

This is less about that woman and more about what I’m left to deal with in the aftermath. She struck a chord though in that like the rest of you, I have fought to be believed since day 1. So to have yet another ignorant person insinuate that I’m fine struck a nerve I’m sure. Like most of you, having Doctors be entirely unwilling to believe that something this horrific can possibly happen has taken a toll. And I’m sure subconsciously that bothers me more than I realize. But the black and white of it is here I am, almost 24hrs after one person made brief but insensitive comments, I am paying dearly in tortuous pain and a frightening increase in symptom intensity. For no reason. 

I remember this, this is what I’d feel after every single Doctors appointment. This is one reason I had to give up on Doctors. I could no longer afford the intense increase in symptoms and difficulties after Doctors arrogantly dismiss all that we try to tell them. 

I’m not sure this makes sense or that there was a clear point. I don’t want this to be my first post in 3+ months, but I have to get this off my chest. This is how my life has become, and how easy it is to get physically hurt now. I think most of you would understand or have similar experiences. Thank you for reading, and I hope I’ll be able to post more soon. Until then, thank you all for the kind words. 

Love for you all.

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.