Fluctuating energy levels in chronic illness can be confusing

I’ve previously written about the spoon theory, which posits that different tasks require a certain amount of energy, or number of “spoons,” to complete. Those of us with chronic illness have a limited number of spoons each day, and tasks cost us more spoons than they cost a healthy person. For example, someone able-bodied might need one spoon to shower, whereas someone with Cushing’s disease, like me, might need three.

But I want to take this analogy even further to address a common misconception people have about chronic illness. Healthy people tend to wake up with the same amount of energy each day. Sure, they might be a little sore from working out or a little tired from a flight, but for the most part, their energy level stays pretty consistent.

However, I wake up with a different number of spoons each day. I might have 50 one day and three the next. It causes so much confusion when I can walk around without mobility aids and stay out late one night, and the next morning, I’m stuck in bed or relying on my wheelchair.

Recommended Reading

July 18, 2025 News by Andrea Lobo

Woman’s case highlights ‘challenges’ seen in cyclic Cushing’s syndrome

Inconsistency

I get frustrated with people’s expectations for me. “But you could do that last week.” “Well, just rest and we can do it later.” I can’t. I wish I could, truly. I wish I could be consistent. I can’t begin to explain how difficult it is to wake up with no energy and realize that my day will be more difficult. I long for the consistency of a healthy body.

Also, I want people to realize that I’m not being hypocritical or picking and choosing activities based on my mood. My body doesn’t always show up for me, even when I beg it to.

Recent confusion

Recently, this issue has been exemplified by stairs. My partner and I have a staircase in our new house, which has been a fun challenge for me. We have a bedroom set up downstairs in case I can’t get to the second floor, and a fridge in our main bedroom upstairs so that I’m never stuck without food. We’re also installing a second railing, padding the stairs to make them stronger, and putting a light switch at the bottom and top of the stairs. Lastly, we leave a cane at the bottom of the stairs in case I need assistance climbing them, and I have my husband at home to help me when needed.

However, because friends and family have seen me move up and down the stairs, many now think I can tackle them at any time.

I can’t.

I’ve trained hard to handle the flight of stairs at home, and some days I can’t even do that. That doesn’t mean I’m now able to climb five flights of stairs, or that they’re no longer a problem for me.

I understand that the lack of consistency can be confusing. All I need is for people to ask me what my needs are that day. I’m very capable of communicating, so I’d prefer that people avoid making assumptions. My home is set up to accommodate my disability, but not every place is.

You can also follow my journey on TikTok and YouTube.

Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Cushing’s.