Things I do that make me go wtf

So I’m watching Jeopardy!.  I don’t remember the category but there was a picture of a woman shown as a clue with one answer.  Even before I read or heard the answer I knew it was Theda Bara.

I can’t remember what I did yesterday.  I probably wouldn’t recognize most of the people I’ve ever known, maybe even some relatives.  How the heck can I recognize Theda Bara?

I have trouble recognizing actors from the last 50 years and I pull the name of an actress from the 30s out of my head?

My brain is weird.

I did skip it this year

In case you were wondering at the lack of posts about my illness and hospitalization, which in the past I did on the anniversary dates of specific events, I did intentionally avoid blogging about it this year.

I was going to post on Sunday about the day I came home, because that was a great day, but I decided to keep silent – until now, which is just in case anyone was wondering.

I just wanted to try to think about other things.  To be honest I did think about it, but I didn’t focus on any of it which I would have done if I were writing a post.

I don’t know if this was a better approach or not.  It helps to let it out and writing about it actually can give me some distance from it and internalizing it is the hard part, but I needed to try this approach to see how I felt after the two months was over.  When I figure out the results I’ll let you know.

Still recovering

OK, so that post about the dentist really does prove that I am obsessed with cycling.  I was more concerned about missing a day riding than about going to the dentist, even knowing how much that would take out of me.  After all, I’m still recovering from the dentist today.  So, really, that’s two days riding I’ve missed.

I really wish it didn’t take so much pounding and prying and drilling to get things done.  My lip is still swollen.  With my big mouth you’d think they could get at my teeth more easily.

As it is I can only ride for 15 – 20 minutes several days a week and then I can’t do anything else for the rest of the day.  Occasionally I need extra days off to recover more fully.  I can’t cycle on days I go to the doctor or to the store and I really shouldn’t on trash night but last week I did.  Still, I like it and miss it when circumstances keep me from it.  I think it’s because it makes me feel normal for a little while.  I know it’s illusory, or at least temporary, but I’m going to keep doing it and we’ll see how far it takes me.

Sometimes I hate it when I’m right

Doctors sometimes ask me if I exercise or what I do for exercise and I explain that I don’t do structured exercise.  I use what I do around the house as exercise.  Anything extra that I add would make it hard for me to do the things that need to be done.  I’m not always sure they believe me – some obviously do, but I even doubt myself sometimes.

Well, now I’ve started cycling and guess what?  I’m having a hard time keeping up with all of the things that I need to do.  As a result things have been piling up around here.  It’s not good to be proven right in this circumstance.

Sure, things could be much worse, but this is what I have to deal with, doing all of the things that I couldn’t keep up with before while also cycling as often as possible.  Don’t get me wrong, I’m really not complaining.  Seriously.  It’s more like I told you so (I told me so?).

Eventually the weather will determine what gets done, but until then I intend to keep up the cycling and do my best to make everything else work.  I’ll take it as a challenge/exercise in scheduling and prioritizing and figuring out how best to manage my energy.

Lessons and examples from riding

The mount and dismount issues when I am riding my bike are very definite and highlight an ongoing problem that I have.  I don’t know if I can get better at this, it might be something I can’t improve at.  But, it might fall into a class of issue I have with movement and if that is the case I think that it can be improved.

The problem with being completely deconditioned the way I was, where every muscle has atrophied, is that every muscle then needs to be rebuilt and strengthened – or reconditioned.  That would be fine if you were five years old.  Right after this all happened to me someone I knew said that I was just like his 5 year old son.  And it was true.  What kids do, among other things, is strengthen and condition their bodies.  That’s what play is.  Kids move everything.

So do some athletes, which means that there are ways to train your body.  If I were 20 I would probably be better off, but I’m already at the age where natural deterioration takes place.  Whatever.  I’m still going to try.

The real problem is that I have still not moved my body in every way that it can be moved.  I still find examples of this when I try to do something that I haven’t done since I was in the hospital.  It happened with walking, then walking backwards, reaching and bending and various other things that you take for granted.  You don’t realize just how much and in how many ways you have trained your body over the course of your life.  When you don’t move a muscle for 2 months you need to build all of that back again.  But it is an incremental process and some things just don’t have priority.  Until one day you try to do something and your body just says no.

Case in point: getting on and off of a bicycle.  I haven’t had occasion to move my leg in that way lately so I can’t.  But if it is just a matter of conditioning and not some deeper problem I should be able to improve.  I knew that I would need to focus on stretching if I got into this.  The specific exercise will tighten my muscles and I need to counter that.  I sort of knew that I would need to work on getting on the bike as well but I was thinking about coordination.  Now I know that I need to stretch as well so that I can put my body in that position.

So, I will work on that.

One good thing is that I seem to be balancing OK.  I wouldn’t trust my body to handle any sudden movements or adjustments but I do fine just riding around the neighborhood.  That’s enough for now.  I wasn’t sure that much was even possible so I’m happy.

As for the rest, I think it will come in time.  Until then, and even if it doesn’t happen, I’m going to keep on riding.

Aargh

I spent the whole day finishing up some paperwork for the LTD insurance company. They do this periodically, asking for a doctor’s assessment of my condition, updates on my status, a list of docs I see and meds I take, and a few other things.

I don’t think they have any idea how difficult that is. It doesn’t sound like much, but it involves two extra trips to my doctor, pulling together all the information they want (that I have no other reason to keep track of in one place), getting the other info that I don’t normally have anyway because I have no use for it, filling out the forms and then checking everything.

This is just the kind of stuff that I have trouble with.

So, as productive as I may have been it certainly is tiring and I don’t get anything else done. It even managed to drive everything else I needed to do out of my head.

Oh well, at least it’s done and gets mailed tomorrow. Did I mention I had to fight the thing to fold it small enough to fit in the envelope? No, well, there was that too.

All I have to do the rest of the week is two doctor appointments, one trip for the dog, a run to the post office, some quick shopping for things we’ve run out of (that’s what I was supposed to do today) and make four more doctor appointments.

Fun, fun, fun.

Yes, it could be worse, but it still isn’t anything you would volunteer for.

Well, sometimes I just have to vent – in public even, but I should stop complaining. If my head has cleared enough maybe I can go read.

Venting

About all I can think of to sum up how I feel at the moment is $@&!. No, it’s not about the state of the economy or the appalling condition of politics in the country. This time it’s personal.

Today I had myself measured, sonically probed, tested, stressed and probed some more. No irradiation this time. Technically the results were good and I should be happy. The problem is I still have an electrical problem with my heart.

Not the cardiologist or any other doctor I have mentioned this to thinks it’s a big deal. Unfortunately I do.

I know that I should be happy with the overall state of my health. I handled the test pretty well and the results, especially considering my condition, were encouraging.

But I am very depressed at the moment. That’s why I’m here venting. I am pissed. I don’t know why this happened – neither does anyone else. Whether this is the result of my illness or some medication or would have happened anyway doesn’t really matter. However it happened there is nothing that I can do about it.

So I’m depressed.

I am also alive and relatively healthy. I could be much worse off. I just can’t get past this yet. I was hoping that a change in medication would make this condition go away but it didn’t. Nothing is worse, but nothing is better. In fact, as I said, I handled the test pretty well and the cardiologist said the results were good. I was actually very nervous before this test for no really good reason and then it went well. My heart performed well under the stress and the doctor didn’t recommend any treatment, just come back in the fall. Of course I used to see him once a year and now it’s twice.

What’s also not helping is that I am exhausted – I mean I’m having trouble just standing up and walking across the room. I am also sore, and tomorrow I will be in even more pain. My legs are not happy with me, my lungs are tired, my heart is glad that it’s over and in general my body is wondering what the heck just happened. And my brain is frazzled.

Oh, and my chest already itches.

Things could be worse and eventually I will see that is true. I will see just what my life is like and realize that I could be in much worse shape. I am alive. However healthy I am, I am still alive. I should be happy with how the test turned out, and I will be. It’s just going to take some time.

Have pity for my poor wife who has to deal with me when I’m like this.

Stretched thin

I hope everyone had a good weekend. I had family events on Saturday and Sunday, so I am recovering today. I also had two days of enforced rest on Thursday and Friday. Enforced by me, and I managed to pull it off, too.

As a warning, this will be a physical condition post for those who are curious or want to know they are not the only ones in their particular predicament.

So…

That task I set myself of preparing for possible new appliance deployment, though it was an intermittent effort, really did me in. I may have hurt myself. Last Wednesday I realized that I had hit a point that I haven’t been at it in quite a while. I ignored the warning signs, like easy things leaving me exhausted, and I kept pushing. My wife calls this being manic, I say it’s being obsessed, so we compromise and call it a compulsion. It’s a state where I don’t want to let myself stop because I worry about things backsliding.

But I went way too far and actually started going backwards physically. I am more than tired. I have a deep exhaustion that permeates my being. Just to be a geek, I will mention that the perfect description is from The Fellowship of the Ring – Bilbo Baggins, his age unnaturally extended, describes feeling thin and stretched, like butter spread over too much bread.

That’s how I feel. There’s nothing left. There are no energy reserves, no more strength, no more stamina – and yet I still feel as if I need to keep doing things. Something, anything, to prove that I can get things done and to accomplish something more than being, well, more than being what I am and admitting to my limitations. I am forced to face those limitations when this sort of thing happens.

I hope the fact that I managed to rest for a couple of days indicates that I am learning from all of this. That would mean that there’s hope for all sorts of improvement, in a careful, moderate sort of way.

Ugh

Tired is not a strong enough word. I may have been able to put up a couple of posts – and that last one I didn’t even write today – but as I’ve said before, blogging about reality is easier than talking about myself. Here goes, anyway.

I have been trying, of late, to catch up on almost six years’ worth of chores. I made a very small dent – the kind you can pop out and don’t need filler for – in the task in the last week or so. In the process I have managed to prove two things.

First, I have proven to myself that I am delusional. I’m sure most of you already knew that. Well, really I just confirmed that I am still disabled. There’s a nasty trick your mind and body play on you when you are disabled. It happens to people without a problem as well, but I think it’s a bit sneakier when you have a disability. When you are sitting, as comfortably as you can, and feeling somewhat like your old self, you get this crazy idea that you’re really recovered and you can do anything that you want to do. That can last for a long time, it can last at least as long as until you stand up and try to do something. Then it all comes back to you as you do one or two minor chores and then collapse in a heap.

I’ve been feeling a little better with the warmer weather, though all of these storms aren’t good for me. So, since there are signs that we are going to need a new washing machine any day now, I needed to do some prep work. The area leading to and around the washer is somewhat inaccessible, at least inaccessible enough to prevent a new appliance from being installed. So I have been trying to make some room. I did manage to, but at what cost, at what cost? OK, too melodramatic. I exhausted myself.

But at least I got a chance to try. Now for a week or two of recovery.

Oh, I did say I learned two things. I am not as bad as I used to be. That should come as no surprise since I was pretty bad, but I’m not even as bad as I was last year. There is an interesting converse problem whereby the more you do, the harder it is to do some things. It’s not that they are harder in and of themselves, but when you spread your energy around to more things you have less for each task. Still, it’s good that the variety of things I can attempt has grown.

It’s the parceling out of the energy that becomes paramount. Do you use it to look fully capable in public, or do you use it to load the dishwasher and take out the trash? These are the questions of my life. Sounds like a soap opera, doesn’t it? I guess that explains the melodrama.

Snapshot

Before I start in on where I am going there are some things that I want to get out first. I wanted to post this earlier this month, but here it is now. This is for anyone who is interested who is already reading this blog. It is also for anyone out there searching for blogs with medical conditions that they share. But it’s more than sharing conditions; knowing that you aren’t the only one with the problems you have helps – at least it helps me.

I apologize for the length of this post, but I want everything visible so anyone who finds this won't have to click through a link to find the information.

For the sake of people searching I will once again say that I had Legionnaires’ Disease, Acute Respiratory Distress Syndrome (ARDS), sepsis, was intubated and on a ventilator for 6½ weeks, in the ICU, suffered multiple organ failure (I think they call this MODS), was on dialysis, my heart stopped, I had multiple infections and I almost died.

So, before I move on to where I want to be, here is where I am at now.

I have a brain injury and related cognitive issues, nerve damage, persistent muscle weakness, scarred lungs, asthma, COPD and PTSD.

Specifically, I have:

• Pain in my right hand and left leg from nerve damage
• Overall weakness from muscle atrophy and persistent weakness
• Inability to stand or even sit up unsupported for very long
• Lack of stamina
• Severe fatigue, as in any exertion and I just hit a wall. It’s a deep exhaustion where the chemicals to move your muscles are depleted
• Burning pain that runs from my left hip down into my foot
• Difficulty focusing and concentrating on tasks and an inability to multi-task
• Difficulty handling stimuli – if I go out, such as to a store, where there are many, many stimuli, like a supermarket, I am quickly fatigued both mentally and physically
• If I watch people while they are talking I will lose track of what they are saying because I get distracted by their mouths and eyes – which can make it look like I am not paying attention or trying to lie when all I am trying to do is hear the actual words and not just the sounds
• Memory problems: as in I’m not sure what I remember from the past and I have short term memory problems. I have trouble remembering the right word and sometimes use the wrong word. Also, if I am looking at or listening to something while trying to talk I may say what I see or hear instead of what I mean to say.
• Some hearing loss, both volume as well as frequency – I thought this was from sepsis but apparently the myriad antibiotics I was on could also be the cause; just another example of the cure causing problems. No complaints; they did it all to save my life.
• Vision problems that includes nerve damage around the eyes, eye fatigue and pain
• Ringing in my ears
• Shortness of breath, sometimes when I’m just sitting down
• Difficulty sleeping – both falling asleep and staying asleep
• Crazy-ass and often disturbing dreams
• Depression
• Anger management issues
• Overall nerve damage

The nerve damage includes, top to bottom:

• around my eyes, which affects muscle control
• around my ears
• around my nose, which also affects muscle control
• my neck – my head tends to fall to the side, especially to the left, when I am tired
• Throat and Larynx – my voice is not the same as it used to be, which means that not only do I not sound the same, but I can’t sing like I used to and sometimes I can’t laugh. The not laughing may be the worst part of it.

  I also have an odd sensation in my throat. An exam by an ENT (I’ll post about that some other time) showed no visible physical damage so it is the nerves.

• Numbness in my right forearm
• Ulnar nerve damage that means that I can’t use half of my hand properly, or even feel it. Numbness and tingling don’t really properly explain this sensation.

  Imagine that you are wearing half of a glove that cuts off sensation and restricts movement to three fingers and limits the use of the other finger and thumb. You feel like you should be able to take it off, but you can’t. I can’t use the hand like a hand, even though it looks pretty normal.

• My right hand is also a major pain location. The damaged nerves, including the nerves in the hand itself, are not responsive to normal sensation but give an amazingly increased pain response, sometimes just out of the blue in excruciating fashion. Meds for this only reduce it some, and if I take enough to do that I get sedated into immobility. So there is pain all the time and using the hand (writing, typing, eating, stirring, gripping) just makes it much worse. When I get the sudden electric-shock pain I get what I call the Dr. Strangelove effect: my muscles cramp, starting at my fingertips and running up my arm, so that my hand curls up and my arm follows and it jerks up till my hand is by my shoulder.
• In my left hand it’s mostly just the little finger
• On my left thigh there is a large area of loss of sensation. This is also a major pain location. There is pain all the time and using the leg (standing, walking) makes it much worse. Of course, sometimes when I’m just sitting there I get a lightning pain, as if someone stuck an electrified spike – or multiple spikes – into my leg. This can make me fall down.
• There are also some internal problems with my digestive tract and I’ll just leave it at that.
• Nerve damage in both ankles that affects balance
• Both feet, the outside three toes mostly, bottom and top of foot around them as well, which is a pain location as well as a problem walking and balancing

Also:
I sometimes have trouble completing tasks because I will miss a step or two even when I have written directions.

Overall loss of muscle, my current muscle mass is at most half of what it was by my perception. I lost 60 lbs while in the ICU and very little was fat. I am much weaker than I was before. What muscle I do have is not as strong as it used to be. The exercise that I have been able to do, which most days is limited to activity to take care of myself because of my lack of energy, has not put on much muscle. I am stronger than I was 3 years ago, but I am still very weak. I have no stamina.

My recovery time from exertion is long; it can take days to recover if I go too far. I test my limits all the time, and I can sometimes tell when I should stop. Of course there are times when I just have to go on, like when I need to go to a doctor or just take care of daily chores. Afterwards I collapse.

I have asthma and COPD; I have scarring from the disease and the intubation.

I have been told by pulmonologists that additional oxygen will not help (and would actually hurt) because I am using as much as I can.

I have PTSD.

I have anger issues, the stupidest thing can set me off. I perceive things as threats or challenges to me and my abilities when they may not be, and probably aren't. It’s like the fight or flight response is now just fight even when there is no real threat. I can’t run away from what is wrong with me so I just get angry about everything.

I have trouble talking and eating because the long intubation moved my teeth out of alignment.

I also have high blood pressure and a stress ulcer, both only since being in the hospital.

I still have some more tests to go to check out my blood chemistry and look for brain lesions (oh joy).

There is a lot more to do, and I’m not stopping. This is just to let people know where I am now. I'll let you know where I’m going and how I’m getting there in future posts.