How to manage Long-Covid...and those lesser recognised abbreviations the kids on tik-tok whine about existing.
I am terrible at pacing. I recently read “If you don’t have the energy to do it twice, don’t do it.” Kind of like what I should have been doing with my money my since I started earning it. Post-pandemic, Long Covid is having a profound impact on the population at large with many people identifying symptoms of post-viral illness. And the medical community is responding with a resounding "YES! LONG-COVID EXISTS!" while citing a variety of symptoms that many in the chronic illness community have been struggling with for years. I have a tenuous relationship with the doctoring community at best so going into WHY behind the general concensus around Long-Covids existence (yet not the pervasive nature of other post-viral chronic illness) will not be wise so let's stick to some good old fashioned life experience that might be a little more useful now that others are identifying a common symptom: Post Exertional Malaise (PEM) is a common symptom with Chronic Illnesses and recovery from other severe ailments. It is when the body experiences profound fatigue for a prolonged period of time afterward doing simple daily tasks. Yes, we all get tired after doing a thing but I need to stress, fatigue and tiredness are two different things. I'm going to mention that difference alot- and I will go into detail.
Let's get into some specifics of what it is and how to manage it!
It is NOT ‘normal’ fatigue:
Four intense hours at the gym are a killer. A 6km hike is intense. Twelve hours of work in a restaurant on a Saturday would destroy anyone. But the flip-side to this ‘normal’ level of intense activity, there is a ‘normal’ rate of expected recovery from the resulting fatigue and physical pain. When we use words “exhaustion” “tired” or “fatigue”, others feel comfortable likening their experiences to ours. These are common symptoms of experiencing general life and, occasionally, can be extreme when pushed outside the perceived norms. There’s that word again…normal. In a world where we are socially challenging this word…I will be frank: The average persons fatigue is not even remotely close to those mine or someone else with a disability or chronic illness. Which is why I prefer Post Exertional Malaise or PEM. Yes, it sounds very clinical. Because it is very clinical. Though someone risks injury if enduring beyond their physical or mental boundaries, someone experiencing PEM with a chronic condition is guaranteed to experience moderate to severe physical and mental impairment for a disproportionate period. Fatigue and exhaustion are sort of surface level symptoms for PEM that people feel most comfortable with empathising with. This can include, but is not limited to, difficulty swallowing, eating, digestion, gate issues, muscle fatigue and rapid muscle wastage (even in muscles unrelated to the muscles used), non-gastric metabolic dysfunction causing cognitive disfunction, blood volume changes, non-gastric vitamin deficiencies, skin sensitivity, onset of allergic reaction, even anaphylaxis with unknown origin or acute onset (suddenly you're allergic to the same fabric softner you've been using for 10 years), depression, seizures, heart murmurs. And these issues remain long after someone else would usually have recovered and might not respond to conventional medical treatment. Most of the time they pass under the radar as acute irregularities glossed over by over-worked professionals (long-covid seemingly being the voguing exception).
ERs do not offer a one stop shop for all treatment or adequate testing so refer you to your GENERAL PRACTICE, a distinction that now must be made because most individuals now report they do not have a specific General PRACTITIONER. Appointments with a consistent GP familiar enough with your case to match file-name to face can take upward of 3 weeks to obtain, and then they refer you for specialist consultant appointments that take upward of 6 months and are conducted individually with referral back to the GP. And that GP will send you to another specialist consultant. And round and round we go attempting to narrow diagnosis down to a single, illusive diagnosis BEFORE treatment is remotely decided upon. They are looking for the one-pill-fix-all. So when someone says “You should see a doctor if it’s that bad?” I’m trying, baby. I’m trying.
Time spent on you is NOT wasted time:
Whether it is an intensive skincare routine, a good book, a specific and beautiful napping place, caring for plants, some even find their career or profession so fulfilling that is psychologically and physically refreshing. Each persons recouperation looks different.
In the case of Chronic Illness PEM the difference is that the activity will be less and the recouperation can, to the outsider, look disproportionate to the activities undertaken. So, yes, some people might bathe (involving movement, body temperature regulation, inflammatory textures, chemical exposure) and require a 2 hour nap and limited movement afterward. However the bathing itself can be equally as fulfilling! Best case scenario, you have a secure base line of energy and activity. It might be lower than someone who is not Chronically Ill or in recovery. Having a routine established allows you to view extracurriculars in a more time-sensitive fashion. Having an understanding of your bare basics of what makes your life a liveable one. This isn’t something that can be done quickly; and it is genuinely something that one should take time to learn even if you don’t experience PEM but I would argue it is far more important. The time spent recuperating positive time with the self is not selfish especially if the majority of your time is spent in some form of recovery.
Use your aids shamelessly:
The world is not accessible. I mean…it’s getting there but, even if it reaches it, that is still one mahoooosive step away from being completely inclusive. Which is the ideal. And this plateau is lingering long enough that the result is us disabled folk internalizing the external pressures into a life-style choice purely to feel more welcome in an inaccessible world. So, yes…I will proudly…stubbornly- I mean stubbornly- I will stubbornly NOT use my aids. And then be staunchly proud about waddling round the house, bruising my limbs and huffing up my internal organs like a thirsty elephant. Much health; such happy. No one is uncomfortable AT ALL. As a young person with a disability, I have lost count of the times people have told me to SLOW DOWN. And I have outright refused the advice even if I’m struggling to breathe on a bench! Having a disability can be so BORING especially when the world around is going at a completely different pace to you. Everyone else seems to be seeing more, doing more, experiencing more. In an ideal world, they would slow down and go at my pace without pressure, even just for a second. (I did do this directly once…and was told that enough accommodations were already being made for me in their opinion which was a HUGE incentive to make similar requests, of course…). So it’s fair to say that a slower universal pace of life is not going to happen just yet. Something I am still getting used to is prioritising my needs and actively using the supports that I have put in place or that are offered to me: My wheelchair, my cane, firmer pillows, cloths on sticks. Having them at arms length, in my line of sight is one way to break the pattern enforced in me by ableism. Another is someone forcing it in my hand, reassuring me that my pride is not worth the aftermath, and telling me that a cloth on a stick makes me look like a Greek Goddess in a bath house.
People will try to empathise:
Best case scenario, they are seeking to make you feel less lonely. Straight down the middle, they're ignorant to the suffering of people with a chronic illness. Worst case, they're being a mindless pick-me girl who fancies themself as worse off. Someone might respond with “I get tired too.” Why yes, my friend, you do. But do you get “my body is rapidly and randomly killing me over the course of a week for having a single scented bath until it decides otherwise” tired? This isn’t exactly a ”me too” moment. Just respond how you wish others would respond to you. Be honest, how effective has someone saying "same here" been in changing anything about your situation? Tell me I’m pretty. Tell me I’m awesome. Tell me that you know I’m suffering but that you hope my achievements are fulfilling me a much as the fatigue is killing me. And offer to rub my back or get me a cold beverage. Or don't. But don't expect miracles or gratitude from reporting shared experience here. I'm sick, Sandra. Shut up about your ab workout doms!