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.