In the ever after…

After my post yesterday, I quickly fell asleep and slept through the rest of the afternoon. What’s crazy about that is that I’m getting 8 hours of sleep every night. I’m also actively trying to avoid a situation where I’m inactive and that leads to sleep. It seems like cleaning that 16 square feet of floor in the attic wore me down and I fell asleep. It’s ridiculous but its my reality. I’m so far from where I want to or need to be.

But I wont give up. On the plus side, I think that gave me enough energy to film the 51 to 60 of our top 100! And so well be able to get that out this week. I just need to edit it and there will be a window for that since I can do it in a reclined position.  But after taping the video I was too tired to edit it last night.

I also struggled to fall asleep last night. Naturally that meant I overslept this morning. I have been waking on a regular schedule as part of my routine so a bit disappointing. I guess that’s for the best in this case though since I took so long to fall asleep. But after waking and working my way to my desk I realized immediately I wasn’t going to last long. I was heavily fatigued out of the gate this morning.

We had some board games arrive today. Unfortunately, at least for now, I’m unable to enjoy. I also had a reading pillow I bought arrive. I needed a way to support reading in a reclined position. It is too much to hold the book sometimes. And yes I realize that is ridiculous. So I am hoping that the pillow wIll facilitate the reading process. I’m not sure it will because I did buy on the cheap and its more optimally suited for an ipad.  Anyhow I’m couch bound for the rest of the afternoon so ill let you know how that goes.

On Fatigue…

It’s important not to get frustrated. But it can be difficult when I wake up with fatigue and the bare thought of trying to tackle a task is overwhelming. When that is the case, I try to take small positive steps. So this morning I started the day with some basic stretches. I made sure to sit at my desk rather than the couch. 

But I’ve admittedly stalled out some. Today has started out similar top yesterday in that respect. Yesterday, I knew I had to initiate processes for extending my leave. So I pushed through that. But around this time I moved to the couch and within an hour had fallen asleep. And that is the worst. Because then I wake groggy and sluggish in addition to ongoing fatigue. Though it probably did help so that I could get through a few card games last night with Jen. 

I managed to stay at my desk until 1pm. I wasn’t very functional. Just drinking coffee and mostly scanning the internet. I maybe spent 20-30 minutes updating some charts on our board game plays spreadsheet. I wrote the majority of the post below and cleaned a very small floor area in the attic.  Then I retired to the couch to eat lunch and rest. As is always the case, having food leads to further fatigue.

At 3pm, I needed to use the restroom. I sat on the couch having to motivate myself before I could manage to move and make my way to the bathroom. I wanted to do something more than watch tv. But I was so tired, my body so fatigued. I had to drag myself up the steps to the restroom. When I left it seemed easier to pause in our bedroom to sit in the reclining Notre Dame chair and look out the window. I paused there before returning to the couch briefly.

By 3:30pm I was just frustrated with doing nothing. So I heated up some coffee in hopes of giving myself a jolt to do SOMETHING. I made my way back to my desk. Though for now i’m just writing this…

What is fatigue?

One question people have is what do I mean when I say fatigue? How is it different than being tired? 

Fatigue is achiness and weakness

One aspect of fatigue is that it’s not painful per se. It’s more achy than anything. It feels like I’m weak in my core – which I probably am (having been sick for so much of the last year I went through a prolonged period of little to no activity). And it’s not like being sleepy, though sometimes I do become sleepy at the same time. But it’s an important distinction for me – fatigue is not the same as being tired. Though they often come hand in hand.

I did not experience anything quite like this before my re-section surgery in 2015. Immediately after surgery I struggled with something similar, but I was in good shape before surgery and I think that helped. I also wound up losing my job immediately after returning from medical leave. So I was unemployed during much of my recovery and I was able to work slowly into shape before taking on some contract work in the Fall of 2016.

With that said, I think I dealt with this fatigue in smaller samplings throughout my life. I recall that I frequently struggled with needing to be motivated to overcome inertia. It was just less pronounced and therefore I thought it was more of a mental thing. I even had a summer when I first lived in Pittsburgh where I had back trouble. Some of that back discomfort is similar to what I experience now but on a much narrower scale. Which may or not be related, but I do wonder.

Fatigue Comes in Multiple Shapes and Sizes

My fatigue varies a lot.  Partially that’s because I have multiple ailments which can lead to fatigue: Crohns Disease, Asthma/Allergies, and Migraines for example. But the Crohns fatigue is very distinct. It actually feels like it originates in my intestines and shoots out from there.  It’ll affect my whole body but it’s most pronounced in my core.  And it’s most pronounced after I eat. Sometimes I think I’m having a good day, but then I have lunch and suddenly i’m sagging into my seat. I know a bit of a droop after eating is typical, it’s just obviously more pronounced these days.

The Crohns fatigue is also more frequent than other fatigue factors. It affects me daily. The other factors only affect me intermittently. And they are also distinctive in their own ways. The asthma makes me more sleepy. The migraines makes me feel distant (as if I’m looking across a river at the world). Overall though, the Crohns is with me virtually all the time. I can ride my adrenaline through lower levels of tasks. But if I try to do too much – the subsequent fatigue is more pronounced and it persists at this level for longer periods of time (anything up to several days at a time).

To give an example, last Wednesday I was feeling good fatigue-wise. There was little fatigue and I took advantage to take myself on a walk. I just went around the block because I haven’t done more than that in months. It is a big block but it’s still one block and I know that sounds ridiculous. Anyhow, I haven’t been able to escape the fatigue since. I tried doing some small exercises in the home on Thursday and Friday. And I’m talking very small. Well, on Saturday I had one of my worst days ever. I know it’s part of the process, but it’s hard to want to push harder when I know that level of misery is on the other side. I’ll never stop pushing things forward to some extent, but at times I will also hold back because the misery sucks. I don’t think I can help that sometimes I need to just rest.

Fatigue is Heavy

The weirdest sensation, and most frequent sensation, of my fatigue is that it feels heavy. In that, I mean that it feels like gravity is doubly strong. Being vertical, whether I stand up or sit up or walk, can become very hard to do. Forget about work – I get to where I just cannot sit up or stand up any longer. 

Conversely, I have found that my body wants to lean forward when I’m fatigued. A reclined position makes more sense, but my body wants to lean forward. Maybe that’s a weakened core? I’m not sure. But it seems counter-intuitive to me. And i inevitably feel worse afterwords if I cater to my body’s need to lean forward. Anyhow, that’s why if you are talking to me I might move to a sitting position – or gladly take one of the few remaining chairs around me. I just want to sit the fuck down.

Fatigue on the Side

Let me apologize now for zoning you out in conversations. Because one significant side affect of fatigue is the inability to focus. I already have a short attention span. When fatigued it takes extra effort to pay attention to other people in conversations, or complex material and data. It’s not that I can’t – it just takes a lot of effort. So if I do manage to get through a conversation or complex project – I will frequently crash right after from expending a lot of extra energy.

So yeah, things like reading books, completing professional development, completing work or personal project tasks can all become difficult. One thing Jen and I started doing recently is the board game videos. The idea here is that I needed something personal to do that motivates me and helps push my activity levels. And we both love doing this. Also, while computer work can be hard at times because of my need to be in a reclined position, I can edit videos on my iPad while reclined. It’s more of a spatial task as well which I think helps. So if I can’t do heavier work, I can usually adrenaline myself through a video (my body functions at a higher level when actively conversing) and edit the video. But not always. When the fatigue is more severe, both are too much. And unfortunately, the more I use up my adrenalin, the harder I crash. So I pay a price for that later.

Board Games (and Jen) are Saving my Life

One easy measure of fatigue is – am I able to sit up and play board games. This is easier for me to do than working on a video or work or finances. But even this is too much for me on some days. We still try and push through it. Play a few shorter games and then watch tv. But what would I be doing with my time if I wasn’t playing board games? I’d be so bored and my mental health would be terribly bad. Maybe I’d read more. But I can’t lie, board games have absolutely saved my life by providing an escape and less active outlet for my limited energy.

And I say that only slightly tongue in cheek because I know that at the core of my life, my wife Jen has saved every bit of my life. We play games together obviously, but her taking care of the home and me is so much work. And I get frustrated when things aren’t cleaner – but truthfully it’s just too much for one person. When I was working, we hired a cleaning crew to come in once a month and clean the house. It was the least we could try to do. But we couldn’t continue with paying that cost with me now on leave.

What folks maybe couldn’t understand is that for a long stretch there I was putting all of my energy and effort into work. When I could get through the work day – I struggled to get through anything at home due to fatigue. That meant Jen carried that load. And as I got worse, I couldn’t sustain work anymore either. That added to my stress and my self confidence, which then probably contributed to my fatigue.

At the same time, I am home all the time now but I’m unable to do all that much. I did manage to clean the office with Jen’s help. And I try to do stuff here and there but I’m not making the dent that I should be making. So I know I have to do more and I’m trying to do that in smart increments. Picking my spots if you will. 

And that is what living with fatigue is like for me. It’s hard enough for me, but imagine how it affects those around me. The fatigue can really challenge your self confidence and make you feel isolated. It also can drain the energy of those around me. So if I get over sensitive to something or don’t reach out much please understand that it isn’t that I want to be removed from things – it’s just that it’s difficult to maintain my normal settings. That doesn’t mean that I don’t love each and every one of yinz. And please take note of how this affects my family as well. I am a lot of work and not always energetic enough to be a great father or partner. I do try, but it can be a struggle just to communicate at times. 

Thanks so much to everyone for your support. I cannot say that enough.

Working through the Fatigue

I’m supposed to be journaling as part of my work on my health. But I don’t find it easy or find it motivating enough to journal in private for some reason. So I thought I’d use this space here – which is technically my blog space. No one ever has to read this. Just some thoughts as I try to work through fatigue issues – connected to my Crohns illness. Maybe some day someone going through similar will find some solace that we have been through similar.

I had been on intermittent leave for the past year. Starting last March, 2019, I had started to become sick every other week. Basically every 7 to 10 days I would come down with some kind of viral or sinus infection or something. I would get extremely fatigued to where I couldn’t sit up effectively. I’d miss at least 2 days of work and work through illness for the remainder of the week. 

I started to break this pattern in August of 2019. I had my longest stretch of not missing work before my mom passed away towards the end of the month. After a couple weeks of grieving and travel for the funeral I got sick again.  Not surprising under the circumstances. But I started to rebound in October and thought that things were looking up. But this is when the fatigue kicked in.

As I started to get ill less often, though I did get sick here and there, I became more active. Mostly this was just natural to be more active. And by more active I mean that I was more active at my desk with my energy or for bursts of time I’d be more active walking around. But I immediately ran into fatigue issues. For the previous 6 months I had spent most of my time very passive – whether at home sick and resting or at work sticking to my desk as much as I could to get through. Because a lot of this increased activity was not intentional, I had to start regulating my activity intentionally.

So I began monitoring my steps. Of course, it wasn’t just steps. I helped carry in an ikea box at some point and that knocked me out for 2 days. But the steps were easier to monitor so I tried tracking them. And that seemed to help but it meant that the rest of the time I had to do nothing. This impacted all aspects of my life. My poor wife for the past year plus has been carrying the load with house work. And longer than that honestly.

The hardest thing during this period was to make the call on what I should do re: work. I thought that I should be improving over time and so I tried to be productive, push through when I could, with the idea that if I moved the needle very gradually over time that things will improve enough to where I could work without significant repercussions. 

But it didn’t seem to work. At the end of January, I became sick. It knocked me out for most of the week and I couldn’t shake it. It took me weeks to shake and between that and the fatigue I missed more work time than I attended. I finally started taking serious the idea that maybe I needed to take some consecutive time off. And really, I had no choice as I continued missing work into March – so much so that I couldn’t complete any kind of meaningful transition for my time out of the office.

So I took a little over 4 weeks of FMLA leave. Part of the idea here was that if I overdid my exercise and wound up fatigued it would maybe lay me up – but I could take that time without stressing about what to do about work. And removing that stress has been very helpful. However, then came along the covid-19 pandemic.

At the same time that my need for consecutive leave was growing, my wife traveled to LA for a business trip. She returned home on March 4, 2020, with an illness. Over the next two weeks she would show all or nearly all of reported symptoms for covid-19. We also both experienced losing our sense of taste which has since been commonly reported as a symptom. So naturally I got sick – plus we had to isolate before most of the people in our area were expected to. We did eventually get tested for covid-19 and it did come back negative. But we are having some doubts since it was at least 2 weeks after she returned from LA and there have been an unusually high number of negatives in our area. There is some thought there might be an issue with local tests. Though obviously that could be coincidental.

And so my consecutive leave got off to a rough start. My doctor had recommended we see a nutritionist in help to adopt to a low inflammation diet. And a psychiatrist since this has all been very stressful and no doubt has affected my mental health. But since we were possibly infected we could not do that for the first half of my leave. Then I wasn’t sure if they’d be set up for remote visits and I didn’t want to leave the house. By the time I had recovered it was no longer on the forefront of my mind. So I’m finally getting around to making those calls now. Or I plan to today anyhow.

But I’m super fatigued today. Talking is very difficult. My wife was trying to talk to me and I started to shake and tear up at the strain of conversing. But my FMLA is supposed to end in 3 days so I need to talk to my doctor. I’m waiting for her now on a telemedicine line so we can discuss. I also had to reach out to work. I am pushing through these tasks even though I want nothing more than to rest. 

Not really true – I don’t want to spend another day just resting for a long long time. I’m tired of having to be horizontal or at least reclined so much of the time. I’m sick of tv but often too tired to deal with holding a book.  I also don’t want to be as miserable as I have been at times. Over the last few days there have been multiple times where my fatigue has nearly brought me to tears – including this morning. 

Fortunately my doctor is increasing my anti-depressant. And is supporting me in taking more time to work on this. Work has been very supportive thus far as well. And my wife has been incredible. My superhero for sure. And for all of that, and for the family and friends that I love, I fight on.

So I’ll try this as a blogable life event for a bit and see how it goes.

The night of 1,000 degrees

Someone once challenged me:

Would you rather drive to work, and walk to the woods, or walk to work and drive to the woods?

For me, especially at the time, the answer was easy: walk to the woods. The woods are my forever home – so long as we protect them at least. I have fond memories from my days of living in the woods. I liked when I’d be pooping and looking at our bathroom window (which happened to run from the floor to ceiling) and a black bear would be walking by. That’s a sweet experience. And nothing beat walking from home to a lovely roadless section along the Clarion River (which happened to feature a nice swimming hole) without crossing a road.

Later, I ended up in Pittsburgh, enjoying the city life. I was still close to some small woods (eg. Frick Park) which were nice for city parks. And after a couple of rough years, reveled in the wonders of small city life. And that’s what this song from Air Waves emotes for me. For whatever reason, I instantly get drawn into some of the many wonderful summer nights i’ve enjoyed, particularly with my wife, living up the city scene. And it’s quite wonderful.

Air Waves has quickly become one of my favorite bands. The song just hits the right mood and the lyrics appeal to how I experience life – always evoking moments and thoughts and memories.

My answer hasn’t really changed in regards to whether I’d walk to the woods or to work. But I’m grateful for the opportunity I’ve had to live up the benefits of the urban life for a while. And I’m thankful that Air Waves helps to recall such lovely times through their rather simple, direct melodic sounds.

Chemtrails – Deranged

This popped in my feed this morning and it really suited my mood well. Uplifting non-abrasive garage poppy punk. This is from the Chemtrails’ upcoming EP Headless Pin Up Girl. The full EP will be worth checking out.

Dimples’ – Half Moon/Frogeyed

I am not actively DJing right now but I greatly appreciate when people make parts of their catalog available for free. I appreciated it when I was DJing, but i’ve been a bit underemployed so I deeply appreciate it now. I had this one in my cart over at bandcamp forever and realized today they had made it available as an optional free download. Now, when properly employed I always drop in a couple bucks, but for now, I get to download this and it’s available for when I am back in the booth.

And how interesting and weird and awesome is this? The whole album is weird with occasional pop outs of melody and pop. The tone of the guitars and weirdness on this track are perfect for me. How about you?

But it gets better. They just released a new LP on my birthday two weeks back. That’s a nice way to celebrate. I was originally going to say Sebadoh III meets Yo La Tengo. If that first track was more Sebadoh III, this is more weird Yo La Tengo. Though the tracks I heard on the first LP jump out at me a bit more, it’s worth checking out.

The Suitcase Junket – Evangeline

Good morning. Signature Sounds features a lot of classic 50s and 60s style rock ‘n roll. This first single from The Suitcase Junket’s forthcoming Pile Driver LP is pretty great. I like the heavy approach with the overdriven guitar. Almost Bad Company-esque. Reminds me of looking through the record store on a summer day as a teen.

Sleater-Kinney/The Thermals/Britt Daniel – Rebel Rebel

I have a good feeling about 2017. I’m getting married. I’m checking out a new career path or seven. But god damn this would have been a nice way to end 2016 with Sleater-Kinney, The Thermals, and Britt Daniel of Spoon covering David Bowie! Let’s do this 2017!

War on the Workers benefit LP

Happy New Year! Let’s start the year off right with a proper celebration of the music of a true Pittsburgh icon in Anne Feeney. Anne’s daughter helped to orchestrate this benefit record of Anne Feeney covers named for her song “War on the Workers”. Anne has been successfully fighting off cancer for a few years now. Here is your chance to show your support!