I woke up just a little bit ago from what has become the usual afternoon nap, feeling heavy, toxic, groggy and doped up. I have that lingering feeling of fatigue that sleep does not seem to reach.
When did I become a napper? Even in the worst of my Lyme I have never been a person who can sleep well in the middle of the day; that constant buzzing brain activity keeping me awake no matter how tired I am….that brain that even keeps me awake during the night when my sleep-deprived body is trying to shut down. I am trying to remember when that changed, sometime within the last several weeks or months I think. I know that the last few weeks at work I spend the day caffeinating myself within an inch of my life and counting the hours until I can go home and crawl into bed.
I guess the good part is that I have also for the first time in my life (without ambien) been sleeping better at night as well. I think it is thanks to an extra dose of this little guy on top of my Zen, prescribed by my ND
In any case the Lyme journey is interesting in that you realize that there are not enough words in the English language for fatigue; I have had deep discussions with fellow Lymies on this subject and we seem to be in agreement. Fatigue is now a catagory with at least half a dozen subcategories, or levels if you will that you can start to identify by their nuances, kind of like the 10 point scale an RN gives you for pain.
*(Please note; all levels given here still fall under the catagory of “but you don’t look sick” and “you must be feeling better because you look well” by the outside world, who do not understand Invisible Illness/Pushing Through/Trying To Function Despite and My Good Day Would Be Your Sick Day.)
1. 😐 Meh. Getting by, managing, functioning, but underlying malaise and general apathy which can easily be disguised and overcome with a smile.
2.😕 Bleh. Very much like level one but more underlying sleepiness, heavy limbs, still functioning but it is like wading through mud.
3. 😒Whahh. Insert all of the above only into limited hours of the day. May possibly spend most of the day resting, sleeping, being “lazy” to then emerge magically into Bleh or Meh for work or other activities.
4.😑 —–. Malaise, fatigue, walking zombie. Going through the motions, functioning (sort of ) in that you can get your body in motion and move through survival mode, but you promise no one that you will remember any of this….
5. 😵 whonk. No I don’t know what that word means, but it sounds like something hitting the floor. This is a day when you sit on your bed until one in the afternoon willing yourself to stand up, trying to work up enough moxie to just get yourself into the shower. I’m not sure if it’s because of POTS or not but I hit “whonk” fairly often right after a bath when I have drained the tub and have to stand up again. I look forlornly up at my towel and robe and standing back up just seems like too much effort. For Lymies whonk days are the days in between Meh, Bleh, Whahh and —-. These are the days you don’t see us, the days we bail on social plans last minute because our shoes are across the room and mock us with the distance. Remember even though we usually “look fine” and can pretty much overcome some Meh and Bleh days you don’t get to see us when we’re whonked, and we think the greatest invention in the history of the universe is the tv remote because it involves minimal movement and provides maximum entertainment.
So I hope you enjoyed my little off-the-cuff fatigue chart. Please note that any day can contain any of the above or combinations and anything in-between. Also please note that friends and family observing the functioning Lymie may not realize that even through we look fine, strange behavior, inappropriate responses, seemingly anti-social behavior, or just plain quietness or unresponsiveness can more than likely be attributed to the above. I know sometimes I will think back and realize I didn’t answer that person, or realize I spoke inappropriately or just came off dumb or unfriendly. It happens. We still love you, we still care, life is just getting filtered through Meh-Whonk.
My nap buddy ☺️