I wish I could take credit for that anonymous quote and the quote on the blog image. They both seem fitting right now. Sleep is something I’m getting more erratically these days. I know it may be just a larger short-term issue right now as I’m trying to develop new routines. But I find it’s annoying to finally fall asleep later at night and then be up right away at 6am.  I can be a morning person when I have to be, but it’s not a natural thing for me. Without my morning coffee or shot of caffeine, forget about it.

I fell asleep around midnight or 1 this morning, but I’m already awake.  It’s been an off and on problem for me for a few years now.  Started back a few years when I had to cut back on my caffeine which is hard for me to do.

That late afternoon buzz yesterday may be the culprit for this bout. I just casually had some caffeine much later yesterday at an hour I don’t normally without thinking about it. Something that doesn’t happen that often but I notice later when it does & I do stop to think. (Usually on a short night’s sleep). I generally try to avoid it after 1pm because insomnia is the price tag.

Other times, I’ve noticed it’s been because of certain medications.  So some of it is fixable and some is not. I just found recently I’m going through a cycle where it’s becoming more frequent again, especially since this last bout of decline.

Sometimes, I’ll be sound asleep and wake with a low oxygen level (this happened before I started using oxygen at night & I’d usually just gasp a bit). I’d generally be able to fall back asleep when that happened scary as it was. Other times, it would be I’d wake up to have to have to get up for various reasons & couldn’t fall back asleep.  Other times, I’d simply wake up for no reason or because my mind wouldn’t fully shut off.  I’d remember something work or personal related I needed to do or thought I forgot to do or might forget to do.

So I know it’s not just my lung disease at play all the time. It’s life.

However, I did feel since I’m wide awake, about doing this small blog post just to see what information is out there on lung disease and sleep problems. I know in TSC, it’s an issue sometimes for adults & children alike for various reasons (medication, behavior, seizure disorders & otherwise) but I was curious to see what was out there related to the connection between insomnia & lung disease.  What I found made me drowsy as much was somewhat dated & old.  But I did find a few helpful bits.

I don’t know that I agree with this article word for word, but since LAM and COPD have some overlapping symptoms I felt some of the points in the article were useful.

This Mayo Clinic link has a lot of useful information. It also pinpointed a lot of causes recently & in the past that also may contribute to my own personal difficulties sleeping.   So many chronic illness & rare disease communities also have multiple health conditions that can also contribute to this issue.

I,  for one, on the rare occasion it’s exceptionally bad will take an over-the-counter medication but I absolutely can’t stand how they make me feel in the morning.

I’ve tried magnesium as a supplement which isn’t a sleep aid but does help my body to relax enough to get to sleep. Sometimes it will help me to only be up short times then settle back more quickly & stay asleep.   I also have found (when I actually remember or think about it) hypnosis to be effective.

Many of us, especially if we take immunosuppressants, can’t take melatonin because of drug interactions.  Some of us with kidney issues also can’t take valerian on a regular basis either (if at all) but I know this does help some people.  I’ve had varying success with Sleepytime tea and Rescue Remedy sleep melts from time-to-time too.

I’ve always felt in this regard that I’ve been helped more by alternative medicine in this area. Though I know others who have tried many of these approaches & have not.  It’s a tricky issue.

My next natural question to myself in looking into this though, is once I have a transplant is this also something I’ll continue to struggle with?  My gut answer to that question was leaning towards yes even before looking into it. Especially for obvious reasons like medications (like tacrolimus & prednisone which are known offenders) but possibly for other reasons.  It does appear to be the case that sleep quality does remain an issue for post transplant patients & it’s discussed often. I don’t know if that brings me comfort or worry.

The National Kidney Foundation of Wisconsin recently had a webinar on September 8 for both pre & post transplant patients that I hopefully will be able to view soon as they do archive them.  I found an interesting presentation & some materials on their site (from February 26).  Sleep was the topic of discussion then too & a few helpful handouts & a presentation were prepared for group members.  The powerpoint presentation by Dr. Rose Franco hit on a lot of information I’ve covered here,  but also confirmed what I’ve suspected for years about the link between sleep problems & chronic illness. I felt it was a worthwhile read.

I see I have some tweaking to do to my routine that might help. Some of the disturbance lately makes sense with all the changes I’ve had to my health & life changes so maybe I can successfully combat some of it for now. I feel that at my follow-up appointment, I’m going to discuss it with my team. Going forward it is something I’ll have to keep an eye on. As my lung disease progresses, I’m having some issues with energy & stamina already due to increased progression of my illness; if I can keep insomnia out of the equation or at least limit a few bouts as an additional contributor, I’ll be better off.

In my looking into the subject, I found several links that stated most people who do struggle with sleep issues, especially when they have chronic illness, have a tendency not to report or discuss it with their health care professionals at all.  They only report it after it become a larger quality of life issue & they are suffering or having other problems exacerbated by lack of sleep.

I guess at least tonight/today, my bout of insomnia served a worthwhile purpose. I’m sure some people will question why I chose to blog about this as what I’m blogging about seems obvious or an issue that affects everyone at some point or another.

However, sometimes with so many serious issues afoot, this was a good reminder to me that my physical health, mental health, & ability to handle my pre-transplant challenges right now do hinge on a concerted effort to stay as well-rested as possible & I need to give my sleep habits equal priority & attention.

“The best cure for insomnia is to get a lot of sleep.” – WC Fields

Seems obvious, but is often easier said than done.