Coronacoaster: The Long Covid Rollercoaster
Why it’s so hard to get off.
I’m in a crash today. I’m exhausted, my head aches and I can’t think clearly. Thoughts and memories sneak around my mind as if in a game of hide and seek, never quite revealing themselves. Sounds are jarring and my mood is low. It’s a day spent going from bed to couch. I might feel better tomorrow, a bit better again the next day. Until the next crash. Welcome to the long Covid rollercoaster, coined by sufferers as the Coronacoaster.
Visualise a rollercoaster. There are carriages traveling along tracks, full of apprehensive and excited people. These tracks go up and down steeply, and the carriage travels at an alarming speed, turning left or right sharply, jerking disconcertingly around unexpected bends. Sometimes the tracks go in a full loop, sending the carriage and passengers upside down. The experience can be exhilarating, exciting, disconcerting, frightening, or dizzying.
Being on the long Covid rollercoaster feels similar. At times I feel well and have some energy. Then I have a ‘crash’. I might suddenly experience a new symptom, and at times I feel completely confused and disoriented. But with long Covid, the ride is not voluntary and it’s nearly impossible to get off.
The long Covid cycle
Long Covid is an umbrella term for a range of conditions, induced by an infection with SARS-CoV-2, that can include myalgic encephalomyelitis/chronic fatigue syndrome, dysautonomia, postural orthostatic tachycardia syndrome, mast cell activation syndrome, as well as other associated disorders. This story provides a detailed description of the main symptoms of this debilitating illness. Good days are few and far between and generally the cycle looks something like this:
Good days
Rest and pacing for several days improve symptoms and increase energy. Suddenly having some energy after feeling unwell and exhausted for a long time feels like winning the lottery. It’s almost impossible not to jump into action, tackling tasks or activities I’ve been staring at helplessly for days or weeks. For a brief moment, I feel great! Finally, I can have a shower, take a walk, or deep clean the kitchen. So I get active for an hour or two, making the most of my fleeting energy.
The crash
By the time I feel tired, it’s already too late. I’ve overdone it. Again. I return to the couch, feeling pleased to have achieved something, but knowing with a sinking dread that I will pay the price.
Crashes can be triggered by other things too, such as eating the wrong foods, being too hot, or arguing with the kids. Watching my children play sport is my kryptonite, raising my heart rate to uncomfortably high levels that take hours to return to normal. Crashes result from a lapse in judgment, a forgetting about the inevitable consequences, or a desperate hope that this time will be different.
Now I find myself in a crash state, having used up all the energy in my battery, and then some. It’s back to rest and pacing for several days, and the cycle starts again. A deep crash can last weeks, or even months, before I can be active again. The question is…was it worth it? Was having a clean kitchen, that piece of chocolate, or watching a sports match, worth the pain, frustration and despair of being on the couch for days?
Why are we on the rollercoaster?
This is one of the most difficult challenges in long Covid because it’s as much a mental as a physical battle. In some ways, the physical is more simple. Extreme rest, a healthy diet, drinking plenty of water, being careful with temperature, avoiding stressful situations — each of these deserve a more detailed exploration, but that’s another story.
The mental challenge is far more difficult. It’s completely understandable that, after being stuck in bed or on the couch for some time, we will want to be active the moment we have some energy. We crave human contact, to have a semblance of normality, to achieve something.
Moments of feeling good give us a glimpse into a positive future and the belief that it’s possible to feel like our old selves again. Perhaps we even allow ourselves to flirt with the idea of recovery. But then, the crash leaves us feeling even worse than before, disappointed in ourselves, frustrated, demoralised and hopeless for the future.
Getting off the rollercoaster and reaching a point of stability, with fewer peaks and troughs, is what our bodies need. It’s much harder than it sounds.
The endless ride
For a few months, I felt like I’d gotten off the ride. I had prioritised rest and had taken care to avoid stress. My diet had been very healthy, and I had not even felt tempted by food or drinks that are known triggers. But life continues on around us and, like the debris from a wild storm, litters the path ahead with all manner of stress and challenges that are impossible to avoid.
My more recent crashes have been mild compared to some I’ve endured. But they are no less demoralising. Pinpointing what causes crashes can prove elusive. Was it the bite of a freshly baked chocolate chip cookie? Was it the stress of a dying cat or the new school term starting? Was it the recent heart rate spike while watching a netball grand final? Perhaps it was the exertion of briefly attending a 50th birthday party? It might also be cumulative, rather than any individual cause.
Getting off the ride
Getting off the rollercoaster for good is much easier said than done. Following some of my strategies may be helpful:
- Assess your triggers
Work out your tolerance to different activities. Keep a diary of what you do each day and how you recover from each activity. Over time, notice what types of activities cause you to crash. Write these activities in 3 separate lists: green, orange, and red. Orange activities can be attempted occasionally, but red activities should be avoided. Fill your days with green activities, with the odd orange every now and then, depending on energy levels.
2. Plan ahead carefully.
There will always be times when you cannot avoid an orange or red activity that is likely to cause a crash. Make sure you plan plenty of rest in the lead-up and for several days afterward. Ask for help where possible.
3. Be aware of your mindset
Avoid the temptation to do more on good days. The only way to be certain of not getting back on the rollercoaster is to have a routine and stick with it, regardless of how well you are feeling. On days when you have more energy, try to avoid thinking you can do more than normal. Keep your focus on green activities and give the extra energy to yourself as an investment in recovery.
4. Get in touch with your body.
Notice how your body feels when you’re on the edge of doing too much. As soon as you notice this feeling, stop immediately. Ask a family member if they detect a change in you when you are at your limit, and enlist them to help you know when to stop. For me, I experience a tightness across my chest and I can feel myself getting irritated and impatient. I might snap at someone or go quiet. When this happens I know I’m at my limits and need to rest immediately.
5. Invest in wearable technology.
Smartwatches can be a very useful tool to assist with pacing. I regularly check my heat rate and heart rate variability throughout the day, and modify activity accordingly. I can see in real time when I’m overdoing it and can take time to either stop and rest, or focus on deep breathing to regulate my heart rate.
6. Be kind to yourself.
Sometimes crashes are unavoidable. Beating yourself up is not going to help you recover. If you can focus on the long game, some mild ups and downs are not going to impair your recovery. Avoiding deep crashes is key.
Following these techniques are the essence of pacing and will help to manage energy levels. Pacing can be highly inconvenient. Every activity must be slower than normal, with breaks during and rest before and after. But this is nothing compared to the inconvenience of living with long Covid.
On the one hand, we need to live our lives and still do activities that bring us joy and pleasure. On the other hand, we need to avoid doing more damage by over-exerting ourselves. This is an exceptionally hard line to walk and has taken me nearly 2 years to find some kind of balance. I know I will still have the occasional crash, but my goal is to reach the point where my long Covid journey is less like a rollercoaster and more like bumps in the road.
Thanks for reading. I value you as a reader and I’d love to hear your thoughts. To support my writing journey, please clap, highlight or respond. Follow me for more.
