This is a post about my damaged spinal cord, but I’ve been working at Automattic for seven years now, so I really can’t help but think about the first line of the Creed:
I will never stop learning.
I strongly identify with this line, but damn it is hard sometimes. The past two to three months I have been in physically terrible shape. Every 3-4 weeks I’ve been learning something new about how my body now works, and this learning is both metaphorically and physically painful.
Aristotle – “Learning is not child’s play; we cannot learn without pain.”
Damn Greek philosophers!
Really I think I’ve been learning something new about my body every few weeks for the past 10 months. Currently feeling hopeful that I can put some of the physical discomfort behind me, but a part of me knows that is probably overly optimistic.
In early June I went to a work meetup in Denver which contributed to me pausing my PT exercises for about two weeks. Then I tried to pick up where I had left off. It turns out though that muscles atrophy faster when you have a damaged spinal cord, so two weeks off is more like 4-6 weeks off for me. On top of that, it turns out I don’t really have much sensation in my abs. So when trying to do my PT, I didn’t realize that I had badly pulled my abs, so I kept going and pushing through as my exercises got harder. And then for the next week I really couldn’t stand up. About a month later, as I was finally getting better I pulled them again, probably due to dehydration.
My lack of sensation in my abs is so bad that my PT can push on them to get the muscles to release and I am perfectly comfortable where he says anyone else would be in agony. Turns out pain is a really useful feedback mechanism.
I now finally understand why every few years since about 2006 I have badly screwed up my abs to the point of having trouble standing. I just didn’t have enough sensation to tell myself when I needed to back off from whatever I was doing. This problem has been there for a long time. At least I understand it now.
I started on an APAP machine in mid-June. It wasn’t until about two weeks ago that I found a mask configuration where I am pretty comfortable and feel like I can sleep well. There was a lot of bad sleep along the way to figuring that out. But I think I can now see some improvements to two of the fatigue metrics that I have been tracking: grip strength and heart rate variability. This is pretty exciting. My grip strength – yes grip strength! – has increased something like 20% on average. Similarly my heart rate variability has increased by 10-20% which is an indication of less fatigue.
Pretty exciting that I am seeing an improvement in the metrics that I had identified as mattering. For some reason my watch has not been showing an increase in deep sleep, but overall I have also been feeling somewhat less fatigued so I’ll take it.
Unfortunately I have actually been feeling more tired which is probably related to how much sleep debt I have. Supposedly that can take months to catch up on. Just in time for kiddo number two to show up! 😉
The other recommendation I got to deal with fatigue was to start taking Cymbalta which is both an anti-depressant and can reduce nerve pain (maybe allowing me to reduce another medication which can also add to fatigue). I started in early July, and the side effects have been pretty terrible: insomnia, nausea, dizziness (especially looking at a screen), and light headedness due to my blood pressure dropping.
The first week was so bad that after days of nausea and insomnia I repulled my abs because I got very dehydrated. Then ended up calling an ambulance at 3AM when I couldn’t stand up without getting dizzy. Every time I stood up my blood pressure would drop about 40 pts. After they put two liters of fluid in me I was a lot better, but ya it was a bit exciting.
Sidebar: when you are laying on the floor unable to stand, alone in the house at 3AM (Mekayla and Morgan had gone camping), but otherwise ok, it is really hard to know when to call an ambulance. Also, it is really nice when you have a watch on your wrist from which you can make a phone call rather than having to go find your phone.
After about five weeks on Cymbalta, I think I am mostly adjusted to the medication. I am not sure it has helped with fatigue, but I am in an amazing mood. Given how rough the past month has been, I have actually been feeling pretty good about everything.
So… um… yay anti-depressants. I don’t actually think my depression was all that bad. It happened occassionally. What I thought of as maybe a few times a year. The reality is that it was always probably there more than I even now want to admit. Wil Wheaton probably explained this better than I can. But I would say that even though I am unsure just how bad it was, that I wish I had tried this years ago. If you are reading this and thinking about it, you should know that there are other meds besides Cymbalta where the side effects are typically not as bad.
This one is really just funny.
So my spine has become a bit crooked (not yet the funny part). It turns out that this was because my shoulder and back muscles had become chronically tight to compensate for my bad balance. My PT has been working on this for many months, and it is improving, but I decided to also add in getting a massage from someone who has experience with spinal cord injury clients. In lots of places my body has reduced sensation, but the sides of my torso are extra sensitive. A little bit of pain is just unbearable even when I know the massage is not that strong.
So, the massage reminded me that my sides are extra sensitive, and then solved a long running bout of marital discord. For years, Mekayla would lay on my shoulder, and then I would yelp and ask why she was digging her fist into my side and she we would plead complete innocence. Ignorance even. She would complain that I was being overly sensitive and I would say something about why she has to twist her knuckles into my ribs. This has been going on for years.
Turns out I was being overly sensitive.