I graduated with honors from an Ivy League law school, and it was largely made possible by coffee. There was a Cinnabon right around the corner, so most mornings I picked up a ginormous vat large cup to get the day going. I mean, how else do you fuel an 11-hour study session? Coffee got me through the bar exam, and then carried me through a six week road trip. One of the best memories I have of that trip is laughing with a best friend over The Worst Cup of Coffee In The World. No, really. The coffee at the Conoco in Sandpoint, Idaho was the worst, and we gave it the official designation it deserved. Buying the first cup of coffee of the day on my way to work was my treat for being in the office by 7am, and on the weekends it was an integral part of pretending to be a writer.

Then I got sick. Still loved coffee but it stopped loving me. First I gave up regular for decaf. Then I gave it up altogether, except for occasional indulgences, because it had such a vicious effect on my gut. My coffee pot was pushed farther and farther back in the cabinet. I drank tea, but even that became touch and go after awhile. Giving up tea or coffee sounds like such a small thing. Compared to losing my career or the ability to drive, being unable to drink coffee sounds so insignificant. But to me, losing coffee was one of a thousand paper cuts. On its own, it means very little but along with everything else I’ve lost or been forced to give up? It was insulting. I know I can’t work, but I can’t even drink coffee? Come on!

I found some treatments that dramatically improved my gut symptoms. As my gut improved, I started to wonder if any of my dietary restrictions were now obsolete. First, I added back tea. Then a cup of coffee, just as a test. No problems. So in a fit of optimistic insanity, I had coffee three days in a row. I know, right? And it was fine. FINE!

And just like that, I got coffee back. I know many people recommend that CFS patients avoid caffeine (and a host of other things). I also know at least one CFS patient who is able to take care of her teenaged sons only through the power of coffee. For me, it’s about being able to drink the beverage I associate with productivity, long road trips, friendship, and writing. It’s about having that piece of my normal back in my life.

This morning, I made half a pot of coffee. I filled my cup and went to carry it upstairs to bed so I could work on this post. And it bothered me that there was coffee left in the pot that I was 50% likely to leave unconsumed because I would not want to use the energy to go back to the kitchen, refill my cup, and carry it back up the stairs. Sometimes I make it back for that second cup, sometimes I don’t. What a waste.

And then it hit me in a flash of clarity that made me feel brilliant and stupid at the same time. We have insulated travel mugs in this house. DUH! So I fished one out of the cabinet, and poured the second cup in there. Thus armed, I carried both cups upstairs to bed. No wasted coffee, and my second cup would stay warm until I was ready for it.

It’s only taken me 18 years to figure this out.


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10 Responses to Coffee

  1. Johan says:

    I never liked coffee, but occasionally drank it in small amounts when “needed”, because it made me alert (good) and nervous (bad). When I got sick I had to give it up (no regrets there), but also every other caffeinated beverage. Now I occasionally drink a little Cola Zero (medicinal) to get me going on special occasions, but too much makes me hyper, spending energy I do not have resulting in a crash.
    I am back at drinking tea (real tea, not the herbals-good-for-your-health variety), which is something I dearly missed: Earl Grey and Prince of Wales.

  2. prefer not to say says:

    Hooray for small victories! I’m sharing your happiness this morning.

  3. Ruthann Auten says:

    Congrats on getting coffee back! I never drank the stuff before I got CFS because I didn’t need it. It took about 4 years for me to get diagnosed and in that time I started drinking coffee just to be able to do anything. As soon as I was diagnosed the doctor told me not to drink coffee. Now that I am on Lyrica, I absolutely must drink coffee to be able to function or I would just kind of sit/lay there staring at the wall all day. On a good day, if I drink coffee I am able to do a few things. On a bad day, the coffee does nothing except taste good. I hope that made some sense–I’ve only had half a cup so far and I don’t know whether today will be a good day or not. As usual I enjoy your post! It’s amazing how the story of an illness can be told through so many — UGH can’t think of the word or even a word.

    • Jennie Spotila says:

      RuthAnn, I know a patient who cannot function at all if she doesn’t have coffee and Provigil. There have been limited trials of stimulants in patients, but I’ll stick to coffee for now!

  4. Ruthann Auten says:

    LENSES! That is the word I was looking for. In this particular case the lens you used was your experience with coffee and CFS.

  5. Ahhh – the great coffee debate! For me, the world would be a sadder place without good coffee.

    My experience has been very similar to yours, Jennie. Caffeine is a stimulant and should be treated with respect. At times of heightened sensitivity, I need to avoid it but, for the most part now, I relish it as often as I can.

    I now find that when my body can tolerate it then I want to drink it but at times when I feel more weak then I don’t even want to think about it. It’s a useful technique that I seem to have developed subconsciously; perhaps you have too. And sometimes it takes eighteen years to come up with the best answer to life’s most important questions.

    Long live the coffee bean! I’ll think of you when I’m enjoying my next cup šŸ™‚

  6. Joe Landson says:

    No one asked the important question: What treatments helped you get coffee back? Because I sure do miss coffee, and moreover so does my unfinished master’s thesis — the one that is a year-and-a-half overdue… Ahem.

    • Jennie Spotila says:

      Joe, yes! I was sure someone was going to ask. Two prescription meds have helped, but I do not disclose my medications or treating healthcare providers on this blog. I took probiotics for a long time with some benefit as well.

  7. JoeyH says:

    Joe, I’ve got you beat on how long my master’s thesis has been moldering! Anyway, I have to say I’m really thankful that caffeinated coffee has never sat well with me, and that my brief bouts of smoking never got me addicted to nicotine. Those are *rough* to give up. I have no problem with decaf, though, and the caffeine in tea doesn’t bother me. So at least I can enjoy those yummy beverages. The downside is that stimulants of any kind rough me up, so the Adderall and other meds my doc tried at first only made me feel worse. It would be nice to have the *option* for an occasional jolt of energy (even if you’re just borrowing from later on).

  8. Rachel M says:

    I’m a coffee lover, too. And I also had a period when I couldn’t drink it.
    These days, I rather need it for its medicinal effects as well as enrichment of everyday life with the ritual of making it and appreciating it.

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