Re-starting…

The journaling is supposed to help with the mental health challenges of struggling against a disability during a pandemic. But this past week, no amount of journaling (or lexapro) probably would have changed it. After struggling against something for so long it is very hard to keep a positive hopeful outlook on things.

For my part, I havent been journaling because i felt too down to journal. Kind of a catch 22 there. So I’m going to try to re-start with this and re-gain some of the lost momentum.

I think that doing board game videos was one way with which I could manage some positive outlook. But we havent been doing them as much. Jen is super busy with work. And I’m depressed and unmotivated. Also, i havent been logging my fatigue but I think it may be worse than it was before. Or maybe that is just the fatigue/depression combo.

But I made my phone calls today to keep treatment plans and testing moving.  And Ive been solo playing small card games as much as I can stand sitting at the table. And so it is. Just 2 months until my next blood letting.

Building up false hope…

I cant help but to do it to myself. I have a good day, or just a modestly ok series of days, and I think I’ve turned some kind of corner. I convince myself. I buy in. Then I quickly learn that I’m full of shit. Wash, Rinse, Repeat.

I did it again. I did legitimately think I had turned a corner by Friday of last week. Again. When in reality, I followed a patter that had previously worked and had discussed before. 

It went like this: Lay low and do very little activity for an extended period such as a week. Enjoy a period of greater energy such as a few days. Crash like the world is ending.

So yes, thank you for checking in on another episode of I am a Complete Idiot.

biding time…

Another two days. Another two days of fatigue. With that said, I generally continue to see enough energy to be productive. However, it occurs to me this may partially be due to the fact that I limited my activity last week. With activity back in a low range, that might have left energy to tap into.  Anyhow, here is a quick recap.

On Monday, my fatigue wasn’t too bad in terms of achiness, but I was exhausted all day. It never really hurts but most of the time I am tired and my body is achy. Then on days like Monday, I have minimal achiness but I’m still completely sapped. This means I am limited in what I can do – both physically and especially mentally.

Yesterday was a typical day. Lots of fatigue. But I managed to push through a bunch of it and get some stuff done. I wouldn’t say it was a highly productive day – but it wasn’t one of those days where I managed nothing.

Today, I am doing ok. But Ive got the achy fatigue factor and my back is starting to kill me. I just don’t have much core strength right now. And I cant do the work I need to to get it back. So in time I will, but that means I have to watch and not overdo it. Which I almost certainly have today. Despite the achy fatigue I have managed to get a lot done – mostly sorting through bills and such.

Initially and the thereafter…

This post was from yesterday morning. It did not publish for some reason.

It has been a few days since Ive written. And Ive learned some things about my fatigue and the blood letting in the thereafter. Last Tuesday I went through my first rite of blood letting (and no – I will never refer to it as anything other than blood letting). 

Wednesday was incredible. Except for a few hours in the afternoon, which were fixed through rest, I was fatigue free. Now the fatigue was heavy when it occurred. So that was a negative. But it had been a long while since I’d had so little fatigue in a day. It felt like heaven.

Thursday was brutal. Heavy fatigue. Very tired. Exactly what you’d expect. And the fatigue continued into and through the weekend.

However, I was actually quite active for a couple of those days. Friday I had a very high step count. The kind of step count that usually meant major suffering. I did some cleaning in the attic. I even carried some loads of books (no more than 8 at a time) upstairs as part of a re-shelving plan.  I even had a zoom gaming session where we played Detective – A Modern Crime Game. Side Note: This is serious fun.

And not surprisingly, on Saturday, I was heavily fatigued. But I managed a bunch of games – though mostly quick ones. And while my step count was low – it wasn’t abysmally low. So I had a productive day despite the fatigue. So my energy wasn’t entirely drained.

Now Sunday, I remained fatigued, but not quite as much. I managed two zoom sessions with family plus games. I managed a normal amount of steps as well. 

And this morning, it is early, but I am not fatigued as of yet. I can feel some early signs that it is likely coming – but this is better than I have any right to feel. Don’t get me wrong. I’m totally sapped. But I think Ill get a few things done today. I feel my brain power will be particularly low. Well see about that. But this beats full on fatigue all the time. So I feel there are some mid-term benefits here that are most likely due to the blood letting. But it also seems clear that my doctors are right and that there are multiple factors impacting my fatigue. As it certainly persists.

the unfortunate…

Well, I did not wake up free of fatigue like I hoped.  In fact, this morning completely sucks. But I’ve managed to deal with several medical and fiscal matters. Now I have to decide what to do with the rest of my day.  The hardest part of that is figuring out what I’m up for. The fatigue is telling me it isn’t much. Alas, the trials of fatigue continue…

promising day…

Today was promising. Except for a few hours in the afternoon, I was fatigue free. I did have some general tiredness. And my mind is a bit scrambled today. I think the changes in my body are promising but messing with me a little too. Still, today was a blessing. Yesterday was the lowest of lows for me. 

So what is next? I have some doctors appointments in the next two days. If I wake up tomorrow without fatigue I see no reason not to return to work. Then its just a matter of working on my conditioning. I am so ridiculously out of shape. It’s been too difficult to walk. I don’t think I’ve walked more than 1/2 mile (in a day!) without repercussions for months. 

And if all goes as planned, more board game reviews, music posts, and perhaps even some music creation. So much ahead of me if I can find and maintain reasonably good health. 

a cautious development…

A12pm. Wednesday. May 6.

After years of experiencing at least some fatigue almost every day, I have started my day today with minimal, if any, fatigue. The secret seems to be the blood letting (aka blood donation) process I went through yesterday. I’m knocking on wood and pleading to the goddess that we have solved this thing. I am so ready for this to be over. But I wanted to, cautiously, share the potential good news.

the let downs…

11pm. Friday. May 1.

Happy May Day! I was bound to struggle emotionally at some point. And this week put me to the test. A couple weeks back, I was so pleased with how well rested I was going into the weekend and we got a lot of games onto the table (and overall quality time to boot). It wasn’t planned out exactly, but it was lovely.

Last week I managed to hit my step goals daily and earned myself a step up. The idea, of course, is to gradually move to a higher level – and make it more bearable to participate in normal activities at some point. Well, this week hasn’t gone so well. I’m so utterly exhausted. My mental energy is crushed. Sometimes I get aphasia and it got real bad the past two days. I cant recall basic words. I have to provide extra focus to basic motor functions or I might spill something. Forget games. I’m utterly dysfunctional.

Hopefully the blood letting works. Because this is growing increasingly frustrating. I felt pretty down today. And as money came in I absolutely have overspent. I’m just acting out – trying to ease the burden I guess. But I’m not handling it in the healthiest way when I do that. It’s just when you are couch bound and mentally dull, or at least when I am, it goes poorly.

And so I am stopping for the weekend. No step goals. No stretch goals per se. I need to rest, heal, maybe meditate? 

10pm. Sunday. May 3.

The weekend was brutal. Not only did I suffer physically, but I continued showing a lot of brain error. I know the fatigue can cause me to struggle with word recall and such. But sometimes its really bad and this weekend had a ton of the very worst of this. So I rested all weekend. Tomorrow we shall see how well that helps.

10:30am. Monday. May 4.

May the force be with you! Unfortunately, it is not with me today. Already couch bound for the day.

the blood letting

12pm. Tuesday. April 28.

Yesterday was a complete loss. The only thing I did was post on here. My fatigue was so heavy I spent most of the day trying to distract myself from it. I did manage to hit my steps goal as I need to hit that no matter how I feel. Today is slightly improved but not great. I’m already on the couch and in rest mode.

11am. Thursday. April 30.

Light on the updates. This week was a bit stressful. On one front, finances were tight. That has worked itself out temporarily. Though we are still potentially tight depending on when the IRS payment happens. I lost some sleep over that Tuesday night. I usually sleep well.

On the other hand, the potential for continued disability is before us. Based on the fact that i am heavily fatigued 5 or 6 days out of every week (and moderately fatigued on the other days) and unable to sit at my desk for more then 2-3 hours at a time on a good day – its just unlikely ill be ready to work anytime soon. And now we have to get ahead of that by other finding a quick fix to my health or doing what we can to ensure the disability payments continue.

We had an appointment with my Crohns doctor yesterday. My tests for Crohns have been good in terms of intestinal damage. So he thinks it may be another factor. I absorb iron at a high rate and he thinks it is possible that is causing the fatigue. So I may need to actually release some iron that may be affecting my liver or adrenoglands. The best way to do that is through bloodletting. Yep, bloodletting. 

So I’m calling the vampires now to get an appointment to donate. If they will not accept me I can do it through UPMC where they take the blood but don’t use it. Ill google leaches in a minute (so not doing that).

the stress is too high

MOne thing that this time off has done for me is to force a pause. When life keeps coming at you, it can be tough to process stuff on top of the physical health limitations. What Ive discovered is that I have some things going on internally that needed maintenance. I’m doting on them. So well see where those things lead. But the “down time” has been very helpful for helping me assess many things.

At the same time, the stress of an international quarantine and a constant struggle with fatigue, means that I’m constantly struggling with my mental health. And bad habits such as impulse shopping are showing some of their worse tendencies. And since I’m still waiting for the insurance company to hopefully (knock on wood) approve my disability – finances aren’t great right now. The one bit of good news is that the IRS finally recognized we are qualified for our payments. So we were able to enter our direct deposit info and just await a pay date for that.

12:30pm. Thursday. April 23, 2020.

I should be retiring to the couch now, but watching the “The Pandemic is a Portal” teach in with Arundhati Roy and Imani Perry.  So I’m listening to this before heading downstairs to rest. I’m really struggling. I started the day with a lower level of fatigue but its peaking now. And I am barely doing anything. I have barely started on my steps. Today will be a struggle.

12am. Friday night. April 24, 2020.

Today was a solid day. I did have fatigue issues of course but probably my lightest day since Monday. Yesterday I was Uber conscious of not over doing it and that worked. I also managed to hit my goal for the week with steps. Which means that tomorrow I crank it up a notch. The goal is to sustain for 5 days and then gradually increase. That is similar to what I was doing before. But this week I reset to where I was before I ran into big trouble. So this next step is where things went further south. I have to get past this step though. I’m barely hanging around amount of steps I take when I go to the office territory. It’s an important step to get past this wall.

But I definitely rolled back a bit on upper body stuff. Not that I was doing much before. But I’m intentionally limiting that. One step at a time so to speak.

11am. Monday. April 27, 2020.

Well, things didn’t go so well on Saturday. Very heavy fatigue. I thought since I was mostly restful on Friday I would be better off than I was. Unfortunately, that wasn’t the case. I guess just keeping up my steps was enough to disable me for the day. We got one game in early that I limped through so to speak. I rode my adrenaline through a top 100 video recording. Then had to hit the couch for the rest of the daytime and we had to cancel plans for a zoom gaming session. I did manage a little of mini gaming in the evening. But that didn’t last long.

Sunday was slightly better. I was fatigued for sure but I managed more gaming, including the constantly rescheduled zoom gaming session. But by the end of that I was so tired. So I’m not sure how I managed a top 100 video recording (just one more to go!) but I rode my adrenaline so hard that I was almost spastic. 

Not surprisingly, today I am extremely fatigued. I’m at my desk but I can tell that isn’t lasting long. Today should be my shower day but I lack the ability to muddle through a shower right now. That is a bit soul crushing.