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.


I’m getting back into the routine of using my fatigue tracking tool. And I was answering the question “I felt isolated because of fatigue” and the answer is always true. Even with all of the support I get, my wonderful wife, my lovely family, my spectacular friends – I cant help but feel isolated. Even if just for part of the day.

I think part of that is that I frequently want to do things, reach out to friends or family around something, but lack the energy to initiate or maintain the conversation – let alone the activity that might go with it. This occurs at least several times per day and is often a constant feeling.

But there are other things that make me feel isolated. In some ways, I feel less isolated right now, because my being home all the time – is the norm for most people. So I have a solidarity that was different before. Still, while my wife works, I largely struggle to read a book or to finish a small spreadsheet project. I am on twitter a lot these days because it requires so little of me. Facebook feels like all of these friends and family around and I feel bad if I don’t communicate back. But on twitter there is no such pressure. It’s mostly strangers and politics and maybe ill retweet some shit, but not much else usually.

Anyhow, just a small window into the isolation factor. There is much more I can write but that should get the idea across. Yesterday was another heavy fatigue day. But I did manage to edit a video. Today I’m feeling a little more energy. We need to resolve the disability insurance before bills stop clearing. And get more videos edited.

Fatigue Tracking Tool

If you, like me, have Crohns and struggle with fatigue issues. It may be useful to measure your fatigue over time. I have mentioned this super useful Crohns and Colitis UK website before. Well, it has a couple of great tools.

First they have a simple 5 question daily measuring tool of the difficulty of your fatigue. Basically you answer 5 questions on a scale of 0 (no issues) to 4 (worst case) to measure your fatigue. You sum each answer to get a total score. A total score of 10 or higher demonstrates fatigue you should be seeking medical assistance for. Currently I’m scoring eat least 16 or 17 every day which signifies a significant issue.

But this was super helpful for me even when I was scoring lower. Right now, because I am pushing myself, I’m not having any days with low level fatigue. Before I was because I was resting whenever I wasn’t working. But even then it wasn’t enough. I was fatiguing so bad I was out of work at least once weekly – at my best.

So I kept a spreadsheet and tracked this data daily. I always questioned myself. I always doubted myself. And then I looked back at the data I was tracking and saw that in December, for example, my fatigue was at a 3 or 4 level 90% of the time including much of my xmas vacation break. I seemed to be managing it better in January with only 61% at that scale. Then in February, my tracking got a bit amiss as I was sick all the time. And then my fatigue was constantly overwhelming. 

In some ways, I think I maybe lost some of my energy to fight through it. And the more I fought through it the more level 4 days I had. But that became harder and hard to sustain over time. I know it wore me down. My doctor prescribed some lexapro to help with the psychological challenges.

Anyhow, the UK website also has a symptom tool. I found this useful as well. Mainly because answering the questions reinforces that my symptoms are normal symptoms. Every time I read a question and answered it as true, it helped reinforce that everything I am struggling through is normal – and not my fault. I think it’s very common for folks to struggle psychologically through this. It’s easy to blame yourself – and I have done a ton of this. 

So what I did is create spreadsheet tool that I use to track this data daily and evaluate myself. So I want to offer this spreadsheet tool to you. If you are suffering with Crohns or Colitis and want a way to track this over time, make a copy of the sheet linked below and give it a try. It is in google sheets and I can easily make you a copy and walk you through filling it out if you need that support. I know challenging this whole process/struggle can be so if I can help others thats great. Just be patient in case I’m slow to respond since I’m going through it myself.

To be honest, I’m so focused on pushing my body right now that I’m failing to track my data. But I’m going to fix that. It’s been so useful thus far.  It’s worth the 5 to 10 minutes per day to track.

10am. Friday. April 17.

It’s helping me to list the days. With this sick leave and quarantine thing I was losing track of which day was which. Yesterday was a productive day for me until around 2pm when my body just simply crashed. I still had hopes of a walk at that point. It didn’t happen. I fell asleep for a few hours despite having plenty of sleep. But I did complete one goal of finishing a book.

The reading is an important goal. Ive struggled to reach that goal due to focus which is an issue that comes with the fatigue. So that was an achievement. We played one board game before the fatigue became overwhelming again. And I managed to empty the laundry. But that task took so much energy that I understood and listened and rested.

But I’ve also been trying to get myself to prepare for some videos and have struggled at that. I finally put together a playlist for our next pink and green vinyl video. But our next top 100 video is lagging because I havent the energy to prep let alone record. But were going to try for tonight.

1pm. Monday. April 20.

Well damn. The weekend has come and gone. With my struggles during the week I had a strong desire to dial it down and just play games. So I did. I still experienced fatigue but in that relaxed gaming position I managed fairly well for the weekend. And I actually got some shit all done.

So now I plow forward. I have decided that if I can dial it down for the weekends, then maybe pushing through the week will be easier. Despite being very tired today I have had a good day so far. The tired part is mostly due to lack of sleep. I woke up early for no good reason. Honestly, the fatigue is minimal. So the dialed down weekend did the trick.

Of course, Since I was so heavily fatigued late last week, I also had dialed down at least Thursday and Friday quite a bit. So I may have to surge and slow and surge and slow. Ideally I keep it within limits and manage without to continue with my regime through Friday. But there are no guarantees of course. So I’m prepared to do what it takes to dial things down and then back up in cycles. Hopefully that allows me to keep a positive state of mind and to continue moving things forward.

Anyhow today has been productive. Rotated laundry. Cleaned and re-organized a shelf in the attic. Stowed some board games in the office. Played some solo Orchard games. And other small odds and ends. A fair amount of up and down while cleaning the attic shelf.  So my step count is good (without being too high). But I need to save energy for later so I plan to move to reading soon. Then getting things set up for some games tonight. We have a scheduled zoom session to play Detective which is an awesome crime saving game.

2pm. Tuesday. April 21.

So, our zoom play session was cancelled which was good. While my fatigue was limited yesterday, I ran into migraine issues. Sometimes if one ailment lessens it seems that another decides to step in. Which is stupid but I assume that is my body somehow handling it’s limitations. It can only be mad at one thing at a time or something.

Anyhow, that was yesterday. Today, I was super fatigued from the time I woke up. Took about an hour to get myself out of bed. Worked my way downstairs for coffee and stayed there for another couple of hours. Finally managed to shower and unload the laundry I put in yesterday. 

And now i’m at my desk watching the Tigers and Yankees play (MLB the Show). I finally managed to finish preparing the fatigue tracking spreadsheet listed above for sharing so I can post. Took all that I had. Though we’re also trying to get insurance company to approve disability extension. Work and Doctor are on board. But of course if we are to pay the bills, I need insurance to support.

Anyhow, today stands to be a very limited day after yesterday and with this heavy fatigue I’m struggling to do the smallest things. I’ll still at least do base stretches and such. I can push through a little but will shut it down some before the weekend to let myself heal.

suffering within a suffering world

12pm. Wednesday. April 15.

I just posted an hour ago, but I’m reaching in to add this.  My morning got off to a good start. I had set my mind to trimming my beard and showering before I went to bed last night. Therefore I was able to adrenaline myself through my initial morning tasks. I was slow to rise, but I pushed through. Now I’m quite fatigued. But I feel like I’m off to a good start. 

11pm. Wednesday. April 15.

Today was overall a good day. But I basically was couch ridden by 4pm and barely moved from that spot. I did a laundry swap around 6pm and that was enough. I came back from it in really bad shape. Just very fatigued. I pushed through a zoom call with the kids. That was lovely, but I did struggle with my focus a bit. I feel bad about that. I love them so much. It was lovely to get that quality time. Even if they poo pooed our background rotations and failed to pay to have a goat or llama on the call. PONY UP PEOPLE.

I’m lucky in this life to have people around me that I love dearly. But these are hard times. And there are many people are suffering in greater quantities. It’s hard to read about. It’s heard to talk about. It’s hard to imagine a way out for so many. Be well world. Be well.


A constant challenge with the fatigue is inertia. Heavy fatigue creates a serious inertia challenge. It’s difficult to move when you know how uncomfortable it can be. And how uncomfortable movement can make you later. You may notice that is a running theme in my days and nights. I’m trying to break thru.

3pm. Tuesday. April 14.

Having another very difficult day. This morning was brutal. I started out well enough with my daily stretches. But it went downhill from there. I am pushing myself to the table for some games. Inertia is a real challenge in times like this. My body feels incredibly heavy. I’m constantly uncomfortable. Sometimes if I can get myself going I can manage things. So thats my focus today. Start incrementally by getting to the table. Then for a walk. Then for laundry. Something along those lines. 

11pm. Tuesday. April 14.

I’m calling today a success. As noted above, the fatigue was awful. But I managed to do some productive things. Jen and I went on a walk – similar to the other day. We played a few games. I rotated laundry. And even managed through a zoom call with family (though from the couch in order to manage it). 

The things I consider victories may seem small, but they take a lot of effort. A long ways to go, but well see I guess. The key will be how I am able to follow up tomorrow.

11am. Wednesday. April 15.

Jen got paid today thankfully. Things have been tight financially with me on disability. And the worse I feel, the more prone I am to impulse buying. And Jen and I enable each other. And this situation, the global quarantine and the disability leave is completely overwhelming and stressful. Which leads to more…

But there are some great positives. We managed a zoom call with my siblings and nieces last night. I had to take it from the couch but it was great fun. In some ways, we are more connected as a result of all of this. I’d feel better about that if people weren’t dying and taking the roller coaster to poverty. But there is something valuable about finding the positive during otherwise difficult times. We were supposed to chat with the kids but were doing that tonight. There was no way I could do both and they had another thing going.

So, today, I’m making an incremental list of objectives that will help motivate me.

• Take a walk. Slightly longer today.
• Rotate Laundry again. FWIW, our laundry machine washes and dries and is super energy efficient but takes 6 hours per load. Which is why you’ll never see – do all laundry today. It exists from a prior era when I was single and had cash flow. It’s actually perfect for put in a load and go to work or go to sleep. Laundry is done when you are back from work or awake in the morning.
• Create playlist for next music to game by video.
• Prepare for top 21 to 30 games video.
• Play 1 new solo game. Learn and play Reavers of Midgard.
• Read. Just read for a bit. 

Reading should be fatigue compatible. But it often isn’t. When the fatigue is heavy, its just difficult to focus. So tv, medium shitty that it may be, is more beneficial for surviving the discomfort. But I’m making an attempt to shift that paradigm.

Sorry for the punctuation issues. I mostly write from my ipad which suits a fatigue friendly posture. And recent software changes have messed with my ipad keyboard.

Two Steps Forward and Back Again

This update covers the last few days.  Jen worked for the first part of Saturday but has been off since. The goal was to play a lot of games and make progress with my health. We havent played as many as we would like but we have played quite a few. It’s the usual one step forward, two steps back with my health. Herein I whine about it.

11pm. Friday. April 10. 2020.

Overall Friday was my best day in days. I got to my desk immediately as per usual, but I was productive for most of the 3 hours I managed before heading to the couch. I even swapped a load of laundry which was productive. I was experiencing fatigue, but only a moderate amount overall. Though it did catch up to me and I did move downstairs.

Reclined on the couch I managed to complete edits on our next top 100 video. Those take a while but they are perfect for me in this state since most of the time is just listening for edits and title queues.

After that we filmed our following top 100 video. My energy was very good. I did take a larger vitamin D dose yesterday so it must have paid off. Even though I had moderate fatigue my energy was good. 

Of course, this is tricksy territory since I’m prone to over doing it. I guess ill find out tomorrow. I was disappointed with my step count at first, but given the general level of activity, I think its best I kept it lowish. But as I said, ill find out if I overdid things tomorrow.

Hopefully all goes well. I would like to string together two productive days in a row. I havent done that in a bit. Ultimately, to get back to work Ill need to be able to do that with some level of predictability and consistency. I’m nowhere close on either right now. Most days I have small windows in the evening at best.

11am. Saturday. April 11. 2020.

I took forever to crawl out of bed this morning. I slowly descended to get coffee. Jen was working but I stopped and sat with her before continuing to my desk. Mostly because I was too tired to move. I’m at my desk now and I have some basic tasks to tackle. But I’m just too tired for the moment. So I am mostly trying to gum up the energy to do something. So far Ive only gotten far enough to write this.

1pm. Saturday. April 11. 2020.

Ive done next to nothing. The fatigue is very heavy today.  Back to the couch. I hope to push through a walk but laundry and everything else is off for today. I hopefully rebound later. Hoping I can play some games, but not optimistic right now about that. This is severe.

11pm. Saturday. April 11. 2020.

Today was up and down. The fatigue was very heavy. But it was time for my b-12 injection and that usually gives me energy. I got through a few quick games and one long one before the fatigue outweighed the energy. Then I relied on tea and wine to diffuse the discomfort and that got me through two more long games and a crossword. So overall I did ok for a bad day. But I’m glad its late and bed is calling so I can start fresh tomorrow. 

2pm. Sunday. April 12. 2020.

Not surprisingly, I woke tired. But especially fatigued. I was slow to rise. And skipped the shower. I struggled my way through a game of Castles of Burgundy. And despite an eagerness to play more had to rest after.  So we rested for a couple of hours. We had wanted to do some videos today but I’m in not shape for it.

6pm. Sunday. April 12. 2020.

Just went for a walk. Not as far as last Wednesday. Tried to keep it to a more gradual step up. Gotta stick with that daily no matter how I feel. We also managed to get in some light gaming after our rest earlier. So that was nice. Back to resting in hopes of maybe getting a couple more games in later. If I can manage.

7pm. Sunday. April 12. 2020.

I’m still tired from the walk and I didn’t even come close to the desired step count. Ill get more steps in. It’s just my reality that even a little can be too much at times. And Ive burnt a lot of non walking energy lately (for me). 

12pm. Monday. April 13. 2020.

As my days go, I had a little energy late last night and played a couple of solo games. I never hit my steps goal but I was overall active in a sense. Maybe not in a normal sense though. Anyhow, goal is to get another walk in today. Jen is off of work so I do have to commit to some games – which is agreeable to me. Helps pass the time rather than sulking in misery.

2pm. Monday. April 13. 2020.

Played games for 90 minutes. Having a lot of trouble even conversing right now. My wife was just talking to me and I stared at her and then realized i had no idea what she said. Typing this and keeping short as this is difficult to do.

6pm. Monday. April 13. 2020.

Unfortunately I have not rebounded. We tried doing a mystery box which we’ve done from the couch before. But today is not my day for it.

11pm. Monday. April 13. 2020.

Truthfully, tonight wasn’t great health wise. With my focus issues we had to cancel two zoom calls with family. Very disappointing. Luckily I have a wonderful wife who took care of me with yummy vegan baked ziti and appeased my need to recline for most of the evening. We did manage a few short games which I needed just to make myself feel better about how the day went. It’s effective to end the day with something positive.

And in the end, today, despite extremely heavy fatigue was good enough that I was able to rotate the laundry and play a bunch of mostly small games. Which was better than not doing anything. The couch and I certainly had a boatload of time to work through our issues. But at least I managed some fun through the discomfort. So I don’t always whine!

I think ill see if I can edit some video. It’s a relaxed task I can do from a reclined position and I’d love to get our next top 100 video out tomorrow.

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.

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.