The importance of being Earnest: Getting up for chronic fatigue sufferers

The importance of being Earnest: Getting up for chronic fatigue sufferers

We’ve all heard the term Long Covid and Chronic Fatigue Syndrome. But what are they?

Chances are, if you’re reading this article, you already have one of these conditions or, know someone who does. Regardless, I’m here first to give you a layman’s term break down and then we’ll dive into some combatting methods, if you want to do Pilates or any other kind of exercise.

Long covid is something that scientists are still figuring out. Many have said it is due to mitochondrial issues after covid. It has been likened many times to a brain injury. Long covid comes with many varying symptoms however, a huge part of it is the debilitating fatigue that most sufferers endure. CFS (Chronic Fatigue Syndrome) is the same in that it causes extreme tiredness and doesn’t improve with rest. For more science on that, please see these articles here and here.

In my experience as both a long covid patient and the family member of someone with a chronic condition plus, from reading support groups, Long Covid (and its’ kin), is basically something that gaslights you on the daily. Many sufferers wake up feeling like they haven’t slept, their brain fog is at an extreme and they have many random conditions from: lack of taste & smell, tingling in their feet, skin conditions they never had before, heart trouble, digestion problems, poor short-term memory etc. Imagine someone inserted a truck into your head. That is how it feels some days. However, like any condition, there is a spectrum. The issue for quite a few of us, just like CFS, is sometimes we feel completely fine and wonder if it was all in our heads. Then, we over exert ourselves, and I don’t mean climbing a mountain. We may have decided after one day of work, we could do a second and maybe take a small beginners salsa class. Suddenly, half way through that second day we crash. We never make it to that salsa class and we can’t move for weeks. However, for others, the fatigue is ongoing and any exercise- sometimes something as simple as walking to get the mail, pushes the body into that PEM (post exertional malaise). This isn’t an attention seeking game we are playing. It affects our ability to earn a living, to have fun, to live our lives as even basic contributing members of society. It is one of the reasons I turned to online. I know people who can’t commit to leaving the home for a class and wanted to help them and I personally, can’t teach as much as I used to.

The most important thing we can do for ourselves, is to pace ourselves, learn to read our own bodies and be our own advocates. Doctors are not always going to come to our party.  But that is enough of that. See the links above if you want to learn more. Now onto Pilates!

If you love Pilates or want to try it or, get back into it, or even do any kind of exercise, I am here to help you see if this journey is for you. While I’m no scientist, I have had the misfortune to suffer from long covid and still have it, albeit mildly to this day. I also grew up with a family member with a chronic health condition. I didn’t become an expert overnight. I have a mild heart condition and slow immune response so I have spent my life being in and out of illnesses while simultaneously (pre-covid), managing a life filled with travel and years as a dancer. I offer here what I have learnt as a movement professional, long-term illness and chronic fatigue sufferer.

1. Consider what you can have to combat PE in terms of oral medication. Then try working into your first day of Pilates.

2. Start small. Test yourself with something simple- not The Hundred. Try sitting on the ground and working on your breathing for only 30 seconds. Then move to standing. Lift your arms up in a inhaling breath and lower them. That is all. Do nothing more.

3. If that works, the next time, whether that be the next day or week, you can move to simple movements like Angels in the Snow or Marching Legs (with hips on the ground) or both. Do no more than a minute of these, even if you feel fine.

4. Keep up this pace for a few weeks to a month.

5. Keep adding on gradually in small increments. Remember the tortoise and the hare? Slow and steady wins the race.

6. In order to know your limits, at some point, feel free to push yourself a little extra. Make sure that you have any medication on hand and no other appointments scheduled for that day.

7. Keep a diary if you want to, of how things go, so you can look back and understand your body more, find any patterns and make exercise plans on the fly if you need to.

Philosophy as you continue in your Pilates and Life Journey

1. Know that this will be a trial and error for months, maybe years. Know that even when you think you’ve found a pattern that it may have to be reduced again. Do not hold onto the fear that it might change but, do not allow disappointment to hold onto you for too long when it does change. Cry, but let it go.

2. Remember, no one is in this race but yourself. You do not have to prove yourself to anyone.

3. Keep a positive mindset, believe that things will get better eventually and have your favourite snack on hand for when you lose that positivity.

4. Do not allow Long Covid or CFS to become enmeshed with your identity. Advocate but don’t assimilate. It may have to define how you live but it is not you. Otherwise, when it does go, you may mourn its departure and struggle to find your identity.

5. Plan rewards for yourself and those who support you whether it's as simple as a smile and thanking yourself and them or a good meditation session. 

 For a free video on doing gentle Pilates and fascia release during a sudden drop in energy: https://youtu.be/OZCkhG5_C8o