BSW, RSW
ME/CFS Chronic Fatigue Syndrome
Low Demand, Affirming Therapy:
Living within the Energy Envelope
The fatigue from ME/CFS isn't about tired. It's about a profound autonomic misfire. Changes in the immune system, the gastrointestinal system, the cardiovascular system and energy production result in a confusing array of diverse symptoms that are not easily diagnosed by medical teams or well understood by those around you. Well meaning friends, family and medical practitioners may suggest more rest, or extra time off work, without understanding that extra rest isn't replenishing in the way that it once was. I work with clients to acknowledge the real effects ME/CFS, mourn the past and acknowledge the changes needed to build a sustainable foundation, based in a new reality, that respects your actual energy level.
Why the Designation of Mild ME/CFS is a Problem
Mild ME/CFS is Not Mild
There is a tendency to see the word mild and interpret it as something that isn't creating profound challenges. Mild is used to compare to moderate and severe ME/CFS which have more severe symptoms, but it's not meant to negate the serious challenges of "mild" ME/CFS. In "mild" ME/CFS people are still often working at least part time outside the home, contributing to an idea that it's not a severe condition. People with mild ME/CFS can be left with a situation where they are only marginally able to care for themselves, with little or no energy for anything that brings them any pleasure. Their entire world can become a cycle of work and crash, not addressed by rest or better "self care" leading to isolation, loneliness and contributing to depression. I work with clients to acknowledge the profound effects of ME/CFS, reinforce the necessity of pacing and validating the challenges of even "mild" ME/CFS.
Post-Exertional Malaise
A Really Misunderstood Symptom!
Post Exertion Malaise, (PEM) refers to the crash that many people with ME/CFS experience when they operate outside their tolerance (pacing) by even a small amount. This can be something as simple as reading a complicated paper (using too much mental energy) or as complicated as a big social event. Observers see you at your friend's wedding, you look fine. They don't see the growing brain fog, the "sick" sweating that you know indicates a problem, your hand shaking in your lap. You look fine. But you know you're going to pay. For many people with ME/CFS 24 to 48 hours later they experience a reduction in capacity lasting days, weeks or even months. In some cases PEM sets in even faster (especially where there is extensive long term depletion). Even enjoyable events come with consequences. I work with clients to acknowledge the pain and frustration that can occur as the result of desired activities and to reconcile desired activity levels with current energy envelope.
When You're More Than Tired
Everyone Thinks They Know What Fatigued Means...
The fatigue experienced by people with ME/CFS isn't addressed by more sleep, or by more rest. While laying down may offer some relief from symptoms, rest is not replenishing in the same way that it is for other people. For some people with ME/CFS sleeping more in the morning, can result in the inability to sleep later in the day and trigger insomnia. ME/CFS creates a situation where some people have to create rigid sleep systems in order to be able to get any rest, this is counter-intuitive and can be bewildering to observers.
Pacing... a Reasonable Idea and a Huge Challenge
It Sounds so Simple, Slow Down. Pace Better. Acknowledge your Current Capacity
The current wisdom about ME/CFS is that pacing is necessary to reduce PEM and avoid developing worsening ME/CFS. Pacing is necessary, but not always achievable. Our daily lives are not set up for pacing. Our children need us, our jobs need us, our families need us, our house needs to be picked up sometimes. Pacing sounds so simple, but when radical rest, and ongoing pacing are needed, difficult decisions need to be made. For some people this means accessing paid supports, for others unpaid supports are the only assistance accessible, but discerning which choices to make, who to ask for help and what to do if there isn't help available can be very challenging, especially when you're already feeling perpetually exhausted.
