PEM by numbers

I want to share quickly what PEM looks like with an objective measurement. A good indicator of my condition is my heart rate. Here’s a poster I put together (using a free phone app and as quick as possible because I’m still not recovered as you can see, so please excuse the poor quality of graphical aesthetics!) showing my resting heart rate since last month measured by Fitbit. It tracks my baseline condition pretty well, with higher heart rate indicating my body feeling overworked, making me more susceptible to crashing.

PEM heart rate

PEM (Post-Exertional Malaise), also referred to as PENE (Post-Exertional Neuroimmune Exhaustion), is a hallmark symptom of ME. Patients with ME (PwME) experience severe exacerbation of symptoms following exertions. Threshold for mental and physical activities that would be too “exerting” is much lower for ME patients. Recovery time is prolonged, often lasting days or even weeks.

The top graph was snapped a while ago when I started thinking about this blog entry. The bottom graph was snapped today. Yes, I’ve been tachycardiac all day and writing a blog right now is not the best thing for my health, but f* ME! (And for that matter, publishing a post yesterday did not help but I have too many things that I have been working on and wanted to get something out). This poster would be better if I make it now instead of a week later, and I need to have a blog post to go with it! It is partially to show why I haven’t been as active as I would like recently.

As you can see, following a notable exerting activities, there is an accompanying period of time that my baseline condition is worsened. I forgot to label, but small up-trend before point 1 was after a doctor’s appointment. I am an ME patient after all- it’s not worth spending energy, my most precious asset, again to remake the poster (I made it ghetto style using whatever phone apps I had, so it was going to be a whole new job). It is concerning that I didn’t get to return to the previous baseline following most of these PEMs. I really should take care of myself better and rest/sleep more, less time on the phone/tablet (I will after I’m done with this post =X). With ME, there is always a concern that after a huge crash, ME symptoms are exacerbated for a very long time (possibly/practically permanently in some cases). And by not getting proper to deal with these comparatively lesser PEMs, I am leaving myself more susceptible to such an event.

One big problem of PEM is the “post” part, meaning I often cannot feel the consequence of pushing myself past my limit until it’s too late. Another difficulty for me mainly due to my personality is dealing with the tails of PEM during which I feel better than the initial crash, but my body has not healed yet and requires more rest. I get too excited about some energy returning and want to immediately jump into something more engaging and fun (like writing yesterday and today) – I have ADHD and self-control and prioritizing are not my strongest suits. In case you are wondering that I seem to focus on writing just fine, ADHD is not just about “attention” but “executive functioning” (paying attention to and prioritizing the right things).

Avoidance of PEM is important not only because it feels extremely poopy (I sensored myself here, but I honestly don’t know any word that can accurately describe the misery of PEM), but also because it is a warning sign that our bodies are getting harmed. With the potential of over-exertion leaving a lasting damage to the ME patient’s body, it is important for us to be perceptive and responsive to the bodily signals. I learned some time ago, even before my ME diagnosis, that my heart rate would spike when I was doing too much. I started to check my heart rate using a phone app (it uses the smart phone camera to detect the subtle color change in the skin). After the events in May, I figured I didn’t have a much room for errors anymore, and got a continuous heart rate monitor (Fitbit Charge HR – an expensive pedometer according to my husband, but hey, it measures the heart rate and has a smartphone app). No endorsement of the product here, BTW. There might be better/cheaper options out there than a Fitbit, but I wanted to get one ASAP and didn’t have much energy to research.

My heart rate goes up quickly when I engage in an activity that is past my physical capacity, so it serves as a good alarm for me, warning me to back off from what I am doing. I developed a habit of checking my heart rate often while engaging in tiring (for the lack of better words) activities to avoid a “crash.” And it does not take much to push my limit nowadays. One frequent offender is speaking. My heart rate goes up more nowadays than when I was running on a treadmill while I was healthier. Eating (chewing food) also involves coordination of many facial muscles, like talking, so I can’t snack on things like beef jerkey anymore. I gave up chewing gum for several years now because of my jaw issue, but I used to buy it by boxes, and it would certainly be something that I would have given due to ME. On bad days, I’ve seen my heart rate soar past 120 bpm just from drinking water.

Thankfully, as long as I keep the offending activities short and stay mindful about how much I’m pushing myself, I can (usually) get away from PEM or deal with a minor one that I can recover from after a good sleep. So I am not going to crash severely because I drank water to stay hydrated even if my body is temporarily going into a hyper-drive.* But there are occasions that I choose to embrace PEM like meeting my sister-from-another-mother and my nephew, or times that I simply cannot avoid over-exertion because of external circumstances. The severity of PEM is somewhat correlated to the amount of exertion, but the loose correlation itself is not enough to predict the length and intensity of activities that I can tolerate. How much I can do at a given time varies too much depending on how I have been doing past days/weeks, or just because my body says so.

My “crash” can look different each time relating to what led to the total exhaustion. I will illustrate the PEM that I am currently dealing with as an example here (point 6 on the poster). A couple days ago, I went to the hospital to visit neuro-rehab department for a power wheelchair evaluation. This appointment was originally supposed to happen in April, but was pushed back multiple times all the way to October (then they found me a spot in September afterwards when they called me to push back the appointment again because of staff schedule and I complained how my appointment was taken off the schedule so many times already), so I was eager to take the appointment when I was offered one off the cancellation list. I was pushing to have my in-home PT/OT put together an order for a power wheelchair, knowing these things always take longer than they should, and September was too far out. I wasn’t functioning enough (too ill to use the wheelchair enough hours of the day) for them to justify to the insurance company until recently. I started to transfer to my current rental reclining wheelchair without assistance and also to tolerate sitting at an angle for a while in bed (see the improvement leading up to the point 4 on the above poster). I finally had enough functionality to ask for a custom power wheelchair for home use, which would hopefully help me return to school eventually when I can revert back to my condition prior to my severe ME exacerbation in May. The timing just seemed perfect.

The evaluation itself went well and they are ordering the exact type of chair I was hoping for. It was definitely a lot of work, talking to the evaluating PT and the wheelchair vendor about my needs, having my strength tested, and trying out the wheelchair to demonstrate that I can tolerate and use it. What I didn’t expect was the transportation difficulty to get to the appointment. My husband just started working this past week, so it was my first time leaving home with someone else. I ended up using a lot more strength for transportation, and with added stress of unfamiliarity, the transportation itself was as exerting as the evaluation itself, if not more.

My trouble with sensory overload and overall cognitive functioning worsened, leaving me sensitive and grumpy. Overuse of muscles made me much weaker, and made my limbs feel extremely heavy. The worst part for me is the hardest to describe because I really don’t think the words like “tired” or “fatigue” do justice to what I experience. Sure let’s call it fatigue, but so bad that it feels like my essence of life is leaking out through every pore of my body and it is painful because I’m losing a part of me. So tired that my mere existence is too difficult. I hate when health care providers ask me to describe my “crash” because I know they are looking for symptoms like nausea, vertigo, shortness of breath, etc., (which I do experience by the way), that have labels and they understand. I feel like “fatigue” is not a proper word for it, so I can only give such imaginary description. Everyone experiences fatigue, so it’s easy to scoff at this word (and one of the reasons the name Chronic Fatigue Syndrome is losing favor). But I certainly did not experience anything close to this kind of complete exhaustion until ME became prominent. If you know a good, succinct way to describe the “fatigue” of ME, please let me know!

The acute exacerbation of my ME symptoms is followed by the prolonged recovery time that my body is still sensitive and vulnerable, not back to pre-crash level, but it’s not as miserable as to feel my life getting drained from simply being awake. Because the only thing I can do during the acute phase of PEM is rest and sleep, there is some relative improvement in my quality of life thanks for to the misleading sense of “feeling better”. I start doing things again instead of getting as much as “do nothing” rest as possible (by nothing, I really mean nothing except minimal life necessities like eating, drinking, potty, sleep). My heart rate tells me that I’m not done with PEM, and I’m aware of it. That’s why I’m not trying my new recliner, and turned down my husband’s offer to take me out for a quick ride to let me leave the apartment, which I would have jumped in gladly a few days ago. I was really looking for being un-bed-bound while being bed-bound (clinic visits so far don’t count; there’s nothing fun about it!), but I have enough awareness that I need to stay put if I want to have my independence sooner rather than later (defined by potty alone).

So here is why I wasn’t posting for a while, and replying to comments or messages. I will probably go away for a few days again now that I really saw what I have been doing (not letting my body recover enough before next push) after making the poster. The good news is, no important appointments for a while that I cannot reschedule (my retina exam can wait), so I have plenty of time and no excuse not to rest!

*I am speaking exclusively about my current condition. Every ME patient is different and ME severity can be variable even by hours for a single patient. So someone with mild symptoms on a good day may tolerate going out for a couple of hours without triggering PEM; for some, they receive nutritionist and water exclusively by intravenous access.

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