In Which I Contemplate Day-to-Day Activities When You Feel Like Hell

I thought I’d take a break from book reviewing to meditate a little more on an issue of all-consuming interest for me–namely, my mysterious illness that may or may not be CFS/ME, an obscure strain of Lyme disease, babesiosis…the possibilities are vast and confusing, and your run-of-the-mill MD is left in a muddled quandary when faced with them.  So far most of the doctors I’ve consulted have wanted to treat what may very well be mitochondrial dysfunction or spirochetes eating into my brain with the power of positive thinking, while prescribing strong mood-altering drugs to render me compliant and uncomplaining about the process.  Yeah.  Unlike the Murphy’s, I’m very bitter.

So.  Despite being in the middle of winter break, I woke up feeling lousy this morning.  But why?  Sometimes the causes of my crashes are apparent: e.g., I get caught in a rainstorm and dash home; seven hours later I have to abandon my post in front of my computer to rush to the bathroom, and then spend the rest of the afternoon lying on the couch, till  I recover enough that sitting upright no longer seems like a Herculean effort.  But sometimes the reasons for my down periods are less obvious: did I just want to lie down and die this morning because it was raining (there’s a certain kind of low heavy precipitation-rich cloud cover that makes me feel worse), because I edited a solid 100 pages of single-spaced text yesterday afternoon, or because I finally got myself together enough to call Duke Hospital and confirm that appointment my doctor finally, after much arm-twisting, made for me almost ten months ago?  You can’t just wander into the specialist clinics at Duke Hospital on a whim, in case you’re wondering: this particular appointment, which is for the end of February, was made last March.  It’s a good thing I don’t actually seem to have leukemia or lymphoma or AIDS or any of the other things that were floated as possibilities, because if I did, Lord knows I probably would have wasted away and died before I received so much as a single treatment.

Anyway.  Carbohydrates (I’m going gluten-free just in case at the moment, by the way, but it seems to be doing F all for me, so so much for that), a quick lie-down, and clearing skies all came together to perk me up enough that by 10am I was able to drag myself down to Lowe’s so that I could finally get a new dryer to replace the rusty one that came with my new house, and that died a couple of weeks ago.  Going to Lowe’s and other stores of that ilk is always full of thrills and excitement for me, and this time was no exception.  Face mask firmly in place, I ventured through the front doors, hoping that dryers were somewhere near the front.  Alas, they were not.

I can’t decide whether things are better or worse now that I’m wearing a surgical mask in public.  In one respect they are definitely better: I haven’t caught a single infection since the beginning of the semester, even as everyone around me has been laid low with colds, flus, strep, bronchitis, sinus infections, pinkeye, and all kinds of other vile maladies.  After the Death Cold that triggered my latest relapse back in March–yes, that March, the one where I was pestering my doctor to refer me to Duke Hospital, and also that March when I was negotiating the offer for the tenure-track job I’m currently holding, which is a fun story that I will definitely share with you someday–I swore I would never go through something like that ever again, so face masks it is.  Only people definitely do a double-take and cringe away from you when you wear one.  On the other hand, at least that distracts them from the horror-tinged irritation they feel when they watch my slow shuffling progress.  I don’t “look sick,” but when walking around someplace like Lowe’s, I have to stop every three steps and rest in order to avoid keeling over and collapsing onto the sweet sweet floor, whose magnetic attraction grows stronger with every step…

Obviously I made it out of there.  I even bought a dryer.  But I’m not keen to repeat the experience, even though I know I will, and very soon, too.  I guess the moral of this whole story, other than my own desire to avoid doing any actual work and just sit here and moan about how hard things are for me (yes, I know they could be worse.  They can ALWAYS be worse.  I teach Russian literature.  I am aware of just how bad things can be), is that sometimes these “invisible illnesses” can really suck, and Post-Exertional Malaise, which I am convinced that I have, is particularly sucky.  So maybe I’ll finish this post off with the wisdom I have gleaned from perusing the internet and surviving my own gut-wrenching, in the most literal sense, experiences with it, and say:

If you have what I have and you think something is going to be too much for you, you are probably right.  The moment–THE MOMENT–the thought crosses your mind that you might be getting tired, or that you might need to stop, even if you’re sure you can keep going, STOP.  STOP RIGHT NOW!!!  And if you find yourself thinking, going into something, that you’re not sure if you can do it, YOU ARE RIGHT.  Don’t do it!  I repeat: DON’T DO IT!!!!  Before all my major crashes I found myself thinking, “I don’t want to do this.  I can’t do this.  I feel terrible.  Oh well, I guess I’ll just power through and rest afterwards.”  WRONG!!!!   Half the time when I had those thoughts, I never even made it to the thing I was supposed to do because I was prostrate on the couch with what seemed like a killer flu, and maybe was.  And when I did power through whatever it was I was trying to get through, that was even worse, because not just the next day, but the next week, and the next month, found me prostrate on the couch anyway.  Stopping whatever I am doing the instant I begin to feel tired or overwhelmed hasn’t cured me of my underlying problem any more than wearing a surgical mask has, but the two things together have significantly reduced the number of debilitating crashes I’ve experienced, and allowed me, even if with difficulty, to keep my job and be fairly independent about day-to-day chores and activities.  So if you’re struggling with a CFS-like chronic illness, don’t be afraid to stand up for yourself and protect yourself, even if your doctors are pressuring you to work out more and random people on the street look at you funny as you stagger by.  You only get one body, and you’re the one who has to live in it.

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