I’ve had a craptastic week. Three crash days, including one that involved a three hour “nap.” I don’t understand what triggered these crash days, but I never do. Usually, crash days take me by surprise because whatever activity I’ve been doing just doesn’t seem to be significant enough to cause a crash. My husband is rarely surprised by my crash days; he’s always had a better sense of my limitations.

Last week I made jam and had a doctor’s appointment. We had a family dinner to go to on Sunday, so I did very little on Friday, Saturday and Sunday – I just sat on the couch knitting and watching soccer. The crashing started on Monday, and seemed to get worse through Wednesday. I completely gave in on Wednesday, taking that three hour nap and just spacing out the rest of the time. I had hoped to write several blog posts this week, and maybe work in the garden for a few minutes. I did none of this, and am writing this post from bed.

Through all of this, I have been monitoring my heart rate. With two exceptions, my heart rate was good last week. I generally stayed under 95 beats per minute, and when I did go too high I immediately stopped what I was doing to rest. On both Wednesday and Sunday, I left the house which meant showering, drying my hair, applying makeup. On both days, my heart rate soared as high as 110 beats per minute during the process of getting ready. I took rest breaks (shower, rest, dry hair, rest, get dressed, rest, etc.) to bring my heart rate down, but then it would jump when I moved to the next step in the process. It was frustrating to say the least. On both Wednesday and Sunday, I had several episodes where my heart rate was high and I briefly felt like I might pass out. And on both days, my heart rate stabilized while I was out of the house to around 87 beats per minute.

So were those episodes the cause of these crash days? Was it the high heart rate while I was getting ready? Or was it the near fainting episodes? Both? Or was the crash the result of leaving the house twice? Or that plus making jam? Or none of the above? All of it? This, in a nutshell, is the maddening part of living with CFS. Despite everything I have learned about pacing, despite monitoring my heart rate carefully, I still have crash days. And because life is not a carefully controlled experiment, I don’t know which component or combination of conditions caused the crash days.

I hate crashing. I hate being unable to do simple things like sitting upright to knit, or talking to friends on the phone. I hate being unable to accomplish the things on my modest to do list. I hate the feeling that I am just taking up space and using resources without producing anything or giving something back. And I hate not knowing – after all these years – how to avoid crashing.

Using a heart rate monitor for pacing is an imperfect system. The monitor can’t capture the energy drain of cognitive and emotional activity. And despite my staying within the heart rate limits and breaking activities into pieces for an entire week, just two hours of elevated heart rate was possibly enough to cause three crash days. The heart rate monitor is imperfect, and I am most definitely imperfect in applying that system.

You know what else I hate? Complainy blog posts. I don’t like writing them, and I assume people don’t like reading them. So I will end this on a positive note. A friend called me yesterday from the store to ask what I needed. I couldn’t think of anything, but she insisted. When she dropped off the fruit I asked for, she also brought me flowers for no other reason than that I had a bad week. This friend has struggles of her own, but she took the time to take care of me this way. It turned my whole week around, because now I feel profoundly grateful instead of defeated. It’s the love and support of my family and friends that makes this illness bearable.

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11 Responses to Imperfect

  1. prefer not to say says:

    I appreciate that you don’t want to complain, but you have no idea what a relief it is to read someone else speak candidly about the limitations and mysteries of crashing. It’s just the tiniest bit less horrible to watch my husband go through it,knowing that we aren’t the only ones on the universe who have had to face this.

    • Jennie Spotila says:

      Thank you so much for letting me know this! It makes a HUGE difference to me to hear that my posts are helping someone, even a little bit.

  2. Sorry you’ve had a bad crash. So frustrating when you’re trying to do everything you can to avoid it. I often find that there are a number of other things that can add to my likelyhood of crashing not just overactivity. A season change, my hormones, a virus going about (I rarely get full blown symptoms of a virus just a general worsening of my condition).

    I want to challenge your sense that you need to be productive in order to have the right to use up resources! I guess I agree with the whole balance idea, but I believe your blog posts have a huge impact and so easily balance out any unproductive moments. You are a great asset to the ME/CFS community. Even if your crashes mean nothing else, you make them valuable by sharing. You eloquently show others that they are not alone in what they are going through. In my eyes there is a difference between complainng and sharing. I never see any sympathy searching in your writing only the desire to raise awareness of what this illness is like. I also really value your insight when you discuss scientific stuff and am really grateful for all you campaigning. In my eyes you are not only intrinsically valuable, but you serve a great purpose even whilst living with such a challenging illness. Its a great achievemnet.

    • Jennie Spotila says:

      Thank you. Your words are extraordinarily kind and much appreciated. Sometimes I question whether this blog and my activism are worth the energy. Thank you so much for reminding me that it all makes a difference. Please remind me again, the next time I forget!

  3. Sally says:

    The Real Life vs Avoiding Crash dilemma…. It’s mine too. And I echo the thoughts of the earlier posters who say how much they appreciate hearing what you have to say.

    Inspired by your posts I am now using a HR monitor to help track what is going on with me. I’ve found that my normal HR while on the computer is around 75. Tonight it is 85 and I’m pretty certain I’ve done a bit too much today. To be honest I don’t need the HR monitor to tell me this as I can feel some of the effects of adrenalin on my body just sitting here.

    In the pre-ME days I could have short adrenalin rushes and they would leave my system fairly quickly, but I suspect having ME means that if I get an adrenalin rush it takes much longer to leave the system. Does anyone else find that? In that it takes longer to wind down after being wound up?

    So my stressor today? I competed my little dog in agility (Actually, I only walk and try to “distance handle” – everyone else runs….), and I have done this in the past without a crash. Unfortunately, I think today something went differently. You see, hubby came for the first time, and I think the stress of knowing he was watching made me more hyped. Also the fact that I had to talk to him & explain things – including the “Just go away and let me chill before my round please!” comment!! And so some threshold got crossed….

    Anyway, I had entered the second day tomorrow too, but I’ve withdrawn my entries. I hope to be able to go and watch my daughter though.

    Sorry Jennie, I’ve rambled on a bit….. but I do think the HR monitor helps. I mean sitting here tonight feeling mostly okay, I can see real numbers that tell me I’ve done too much. Here’s hoping I feel well enough to watch tomorrow!

  4. Sally says:

    PS I’m in the UK so it’s about 8pm here now! LOL….

  5. Turtleknits says:

    Ditto everything “prefer not to say” says.

    There are so many recommendations out there, and so few (like, none) treatment options that work. Sometimes I wonder if I’m doing as much as I possibly can (for example, I’m not heart rate monitoring, or using the methylization protocol, or using Activimmune, or really doing a decent job of pacing…). Then I realize — who the hell is expected to manage an illness as serious and debilitating as this one is with NO professional help? That helps me give myself a break.

    Sometimes, and I know this is awful, I wish I had a different disease, only so I could go to a doctor who would recommend a treatment or management plan.

    I understand that you don’t like complainy posts, but know that those posts are immensely helpful to me.

  6. Suella says:

    Hi Jennie,

    Using the Workwell information would it help to count back 3 days and see if th actiity that day triggered something?

    Dan Moricoli was taught to take his early morning pulse rate and find its average. Then he was to compare that average to each day’s early morning pulse rate. When it was elevated much above his average he knew to take that day more carefully. I think he learned this from Dr. Klimas’s Ph.D student Connie Soul(?). It seemed to be a useful early warning system for him.

    It takes more discipline than I have right now, but it seems a sensible thing to try.

    I know Bruce Campbell felt that he learned to understand his illness through logging. I do wish I had his discipline. He is my age, but managed to recover as he undertook to deal with the illness very early on. Alas, I was 6 years before I discovered his wonderful course with all the online articles and support of my fellow students.

    Best of luck in feeling better soon. Dr. Lapp reckons we need to use care and rest for another 3 days after we feel better. And how hard is that to do for me.

  7. Justin Reilly says:

    This is my favorite post by you so far. Thank you!

  8. Diane says:

    Thanks for this post. I’m sending it to my husband. I am a health professional and feel like I have CFS, but I’m not yet willing to be labeled. I can still work part time, but I have begun calling in more and more frequently. This crash has landed me in bed for two days, even though I take prescrided stimulants. The stimulant medication has made the last 2 years of part time work possible. But basically to do that I give up every weekend and afternoon to just lay in bed. I have followed the envelope method of trying to conserve and judge my energy. It’s just that the envelope seems to be shrinking. I’m just now beginning to tell people my limitations and deal with their scepticism. Being this tired all the time and missing so much if life produces so much guilt….but there appears to be no choice. Thanks again. I guess I just need to vent.

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