Energy-Limiting Condition (ELC) and Pacing

I came across this term- Energy-Limiting Condition. Where Energy limiting conditions (ELCs) encompass a variety of illnesses that fatigue and energy impairment are key symptoms. It is not a disease itself, but a category we can use to describe our personal experiences with fatigue and illness.

Conditions are quite a few illnesses: (Examples)

• Long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), chronic Lyme disease
• Musculoskeletal conditions such as fibromyalgia, Ehlers-Danlos syndrome, rheumatoid arthritis
• Respiratory conditions such as chronic obstructive pulmonary disease (COPD), cystic fibrosis
• Neurological conditions such as multiple sclerosis (MS), functional neurological disorder (FND)
• Gastrointestinal conditions such as Crohn’s disease, irritable bowel syndrome (IBS)
• Auto-immune conditions such as lupus, Mast Cell Activation Syndrome (MCAS)
• Heart and circulatory conditions
• Inherited metabolic disorders
• Cancer and the effects of chemotherapy treatment
• Mental health conditions and being neurodivergent
• Polymyalgia rheumatica (PMR)
• Postural tachycardia syndrome (PoTS)

Symptoms are:

1. Fatigue: As the name suggests fatigue limitations are dominate. It can be overwhelming and tiredness that isn’t resolved with sleep.
2. Reduced physical stamina: Heavy Limbs such that simple tasks take more significant effort than they should be and we tire quickly. Which can, unfortunately, lead to muscle loss over time as we are able to do less.
3. Cognitive-mental fatigue: Reduced concentration and focus such that we cannot focus for longer periods of time. Limiting our concentration. As I mentioned in my reduced capacity to read for long durations.

Pacing

Pacing is mentioned in a lot of the articles I looked at and of course we are all familiar with pacing. But the difficulty with fatigue pacing for me lately with my additional MS diagnosis overlapping my fibromyalgia and migraines is that pacing fatigue is not quite like pacing pain at all. The symptoms mentioned above all have an impact. So fatigue, mental/cognitive fatigue, and reduced stamina all play a roll in reduced capacity through the day. With no ALARM to tell me that I should stop doing a task immediately. Or turn around on a walk. Or stop a mental task.

This is the best damn thing I found on pacing regarding this topic, but I couldn’t link to the reference.

It’s not endurance. This I know. With pacing with pain or energy-limiting I know it is not about endurance or pushing through. It simply is not, in either case. I also know it is about resting spaced through the day. Do a thing, I rest. I do a thing, I rest.

What I like about this quote and remark is that last part there. “That tiny pause where you check yourself before acting? That’s where you preserve tomorrow’s capacity.” And I think that is where I simply do not. I think I do not pause before I act. I have my things to do, which are few, I might add- and I do them with breaks. Simple as that. Some days I rest a significant amount. Other days not as much. Depending on my body’s signals and the lack of sleep from the night. But that Significant Amount is insane. I would like to even it out. And pace like I pace pain.

I imagine it takes practice. It certainly did with pain. And ‘push through the pain’ was definitely a thing I did until I couldn’t. So, yeah, that didn’t work well for me at all.

But we all know there are days. There are just days when the pain wins. And there are days when energy is just not there for anything. Not any task.

What I do now:

1. Pace: and this is a lot of resting between tasks. Spacing tasks out.
2. Conserve: Conserve the energy I have. Which means maintain. Take a nap if I need it. Eat when I need to. Drink fluids.
3. Choose tasks wisely: This is a matter of in a day choosing what to do and what not to do in my day. If I do one thing one day, then maybe I can’t do that other thing. I may have to save it for the next day. Planning these things accordingly. Some tasks simply take more energy resources than others and need more of the day. Some take less and can be done with other things.
4. Choose how I do thing: Some things have different ways on how I accomplish them. Sometimes it simply means I do them slowly. Sometimes it means I do them with breaks.
5. Exercise: Sometimes a short walk or a small amount of exercise can boost my mental energy of lesson my fatigue slightly. Sometimes. Either way it is good to do.
6. No multi-tasking: One I know I should not do because it scatters and splitters mental energy but I still do because it is just how my brain rolls.
7. Break up large tasks: So many things can be broken up through the day or week or month.

The art of pacing with chronic illness