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.