a time diary and contemplations

2pm. Wednesday. 

It never feels like an adequate description. What is it like when the fatigue is at its worst? I’m not sure how to answer this question. But the answer starts with there is no comfortable position. It is constant discomfort. 

Needless to say but the fatigue is at its worst right now. I was tying to read but am struggling with my focus. I think I need to start a new book. Something completely immersive. But to keep things going, first I’m going to get up and do some basic stretches. I need to push through this.

11pm. Wednesday.

This evening went much much better. I was tired but not super fatigued. I think a combination of rest and other factors helped ease into the evening and I’m ever thankful for that. I was in need of a decent evening.

And we got to play some games. It looked dreary there for a bit so this was a nice bonus. We played one of our new games, Space Base. Really liked it. And then dove back into The Crew. Uh, logging each game, we’ve played a TON of this game in just a week. The games are super short which is why. Anyhow, its obviously a winner. And we like that it is a campaign game which we can easily replay with more players. Since we are using the 2 player modified rules, it’ll be almost like a new game.

11am. Thursday.

The evening was reasonable, therefore my morning will not be. To be fair, my mornings are generally my worst times. And my evenings are my best – particularly later in the evening. So I suppose it makes sense. I’m just disappointed that last nights improvement didn’t translate into a better morning.

Still, I have goals of editing a video, playing some solo games, etc… So Ill do my best to have a productive day. If I edit the video from the couch I can probably get rest and that done. And maybe have more energy tonight. So Ill move to the couch soon. Ill at least do my best to get through the hour at my desk and take care of finances or something. Or nothing. I’m quite fatigued.

12pm. Thursday.

Still at my desk but barely. So fatigued that I’m doing nothing of value. There are some simple sensible things I theoretically can do. But not doing really barely any of it. Still, I just want to do something other than the couch so bad. Therefore I havent moved yet.

Jen and I did have a conversation about how the fatigue seems greater in the past week since I took that walk around the block. I’m not sure if its because I’ve been more active – or the mirage of trying to be more active and therefore its more frustrating.

Nevertheless I’m so extremely miserable. I think its possible that Im not moving because I’m too miserable to move.  How dumb is that?

11pm. Thursday.

This evening went better than the day. The afternoon rest helped and we got a few games in. It helped me to build up my resolve to take another walk tomorrow. I know I have to keep pushing through to a certain extent – without overdoing it. It’s a tricky balance. One I get wrong more than I get right.

12pm Friday.

Rotated the laundry which was a good start to the day. My goal is to get our next top 10 edited, take a walk around the block, and film our next video. That may be too ambitious so ill listen to my body and respond accordingly. But it gives me 3 things ill feel good about getting done.  I may drop the walk since I’m doing laundry. That will provide a physical equivalent and maybe save a walk for tomorrow. I don’t want to let the fatigue get too heavy. Then I end up not doing anything as it is overwhelming.

Contemplating Fatigue

For a long time, I wondered about the appropriateness of my fatigue. I would google and find general references, but nothing that specifically applied to me. Then I found this British website on Crohns and Colitis.

This site was remarkable in how precise it’s descriptions were. On Physical Activity:

Low energy levels can make it very hard to take part in physical activities, such as sport. Some people find they don’t have the energy to carry out everyday tasks such as driving, housework or collecting the children from school. On very bad days, even walking from one room to another may require great effort.

On… The… NOSE! If I have to walk to another room for some reason, on bad days, I literally wait as long as I can put off the task because it’s just awful.

On Memory and concentration:

Some people find that fatigue makes it difficult to think logically. You may find that it can affect your concentration and memory. When you are very fatigued, you may feel you cannot speak properly, and may stumble over your words. Some people call this ‘brain fog’. See Talking about fatigue below.

On… The… NOSE! This became an issue with work where and personal projects. I just struggle through complex tasks anymore. On a good day I might be fine. But on other days I had to really push myself and ride my adrenaline through the work. Then when I’d get home i’d be exhausted and fatigued. This still applies of course, but it is part of the reason I needed to take a longer FMLA leave.

On Social Activities:

Unpredictable fatigue can make it difficult to take part in social activities. This may mean that you refrain from going on holiday, travelling, socialising, or taking part in hobbies or interests.

Again on the NOSE! I’ll stop saying that. But I cannot express enough how affirming it was to read something that was so on point. I felt adrift and it felt really good to have my experiences so accurately affirmed.

And the social part has been hard. I’m a very social person. I recall my boss at Edison Learning commenting on how I was the most social person he knew. I mean I was going to live shows at least once per week, playing softball, kickball, disc golf, hosting board game nights, going to football games, band practice, etc etc etc… I would go non-stop for weeks at a time, crash for a few days, and re-start.

At the same time i’ve never been super healthy. And I would get sick a lot. That crash I describe above would often be a sickness. But now, the ability to go go go is completely gone. And i’m not as good a friend as I find it hard to stay in touch. I can’t commit to planned activities. And I cannot follow through on commitments with anything close to reliable.

Everything had to go into work or I wouldn’t be able to sustain it. That meant Jen was doing the house chores. We shifted to grocery shopping online so we could do it together. Which I really appreciated because the constant fatigue made it real easy to feel isolated. I needed to feel a part of it.

Which, again, the British Crohns & Colitis website nailed:

Fatigue can have an effect on your emotions. If you can’t do as much as you would like, you may feel frustrated and angry. Some people feel isolated and lonely if they find it difficult to socialise with friends. This can lead to low confidence and depression. You may find it helpful to discuss your feelings with a counsellor. To find out more, see our information sheet Counselling for IBD.

So let’s move to what matters, which is how can I reduce fatigue. After surgery in 2015 testing showed I was very low in B12 and Vitamin D. So I’ve been supplementing in both since then. I had to do b12 injections due to the surgery itself – my body can no longer process b12 in foods into my body for use. But I’ve struggled with getting the Vitamin D to work. We finally had to ramp up my dosage and it finally started to move. But it took a few years to get there.

But it hasn’t stopped the fatigue. I think my energy is better though. And yes, these days I have to distinguish between fatigued, tired (or energetic), and sleepy. All completely different things i’ve come to appreciate. Which of course overlap at times.

Now, i’ve probably gotten impatient with the physical part. It’s difficult and slow. Here is what that website explains – further capturing what I already knew from experience:

There is some evidence that low to moderate intensity physical activity may reduce IBD fatigue. You could try gradually to increase the amount of physical exercise you do, while being careful not to overdo it. This can be simple activities, such as walking rather than catching the bus for short journeys, or going to exercise classes. It is important to achieve the right balance between doing too much and exhausting yourself, and not doing enough to make a difference. You might need to build up your activity level slowly over several weeks.

This goes back to what I was talking about the other day – managing my steps. I basically had to start really small and very slowly move myself up. To some degree this has worked. But it also really hasn’t. As my fatigue still became too much to bear and I had to go on a more standard leave from work.

So I was hoping with leave I could push it more and just deal with the days of heavy fatigue. But it isn’t exactly working that way so I’m back to incrementalism.

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