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.