Looking Too Well to Be Sick, Feeling Too Sick to Act Well

By Allison Jonergin

When I begin to feel a bit better – yes, even chronically ill people are allowed to have good days – there is a lot of catching up to do. Sometimes it feels I have just enough time to come up for air before being washed down again.

Even when I’m feeling my best, the majority of my time is spent resting at home, sitting at appointments, standing in line at the pharmacy, and taking medicine.

I wish my schedule could be freed to do fun things, and I’d settle for being able to do productive things like housework. But if I push myself beyond my limits, even on good days, my symptoms will surge and I’ll suffer a setback.

It takes a great deal of work to tend to my basic needs. In fact, if I don’t care for myself adequately, I’m stripped of my ability to even perceive small joys around me.  Feeling exhausted, in pain, and impatient can turn into a vicious cycle wherein I take in only the negative and thus have only negativity to offer.

I can feel disgruntled about waiting over an hour for an appointment, or I can feel thankful I felt up to driving there. I can feel depressed that I spend more time with my doctors than my friends, or I can feel thankful I have a team of treating physicians who know and understand my diagnoses and symptoms. I can allow my self esteem to suffer for needing to rely heavily on my family for support, or I can be immersed in the love I feel when their support seems to never diminish, no matter how many times I must drop my bucket into their well. I can feel discouraged when I have no energy left after attending these appointments, or I can accept the sober truth that my chronic illnesses would be even less manageable if I stopped going to them at all.

I must diligently carve out time for rest and recuperation, as well as time to gently exercise my tender limbs, time to make healthy meals and time to just be. It’s not realistic to manage doing all of these things every day, but I can rotate my priorities so I take the best possible care of myself.

I’m not ashamed of my schedule, but I struggle to communicate that missing a nap isn’t like forgetting to drink my eighth glass of water. It’s more like not eating for four days in a row. It’s more like day 11 of the flu. It’s more like seeing stars after getting punched in the face. Brain fog clouds my windshield completely, and I feel like I’m trying to distinguish landmarks in whiteout conditions.

I make silly mistakes. I trip over my own feet. I get flustered talking about even the most familiar topics. I pace in and out of rooms, forgetting why I went into them in the first place. I feel like a stranger in a foreign land who can’t remember what she wants to say long enough to translate it into the local language.

My only source of relief comes in the form of a deep sleep.

It’s frustrating to sleep the afternoon away, but I know the importance of ensuring my body gets the rest it needs, even on good days.

Allison Jonergin is a SUNY Plattsburgh alumna and North Country native. She has fibromyalgia, CFS/ME and endometriosis. She also deals with irritable bowel syndrome, anxiety, depression and migraines.