You Will Never Do Pacing Perfectly

A couple of weeks ago I had frozen peas and corn for dinner. I was in my post-Festive season symptom flare. Mostly horizontal. Limited capacity for much and I’d run my food stocks right down. There was no protein option, but at least I ate some vegetables. Its was fine, as a once off.

I don’t know why eating a bowl of peas and corn felt sadder than a bowl of cereal for dinner. Actually, I do know why. Pop culture has normalised eating cereal for dinner—sometimes—and its something I did as a university student, before I became disabled. So I guess that’s ok then? I suspect what I felt was a tiny sting of despair.

Despair is a funny emotion: the dictionary says it is the complete absence or loss of hope1. It wasn’t really despair at one slightly sad, if nutritionally acceptable, meal: it was despair that I couldn’t manage to get myself dinner. It was the despair of ‘this should be easy’. My hope was the perennial grind-culture hope of ‘getting my shit together’ which is perfectionism talk, and kind of code for ‘being impeccable’2.

You may wonder why not just order a meal delivery? They are available here in Melbourne. I have used them, sometimes. If I lived in a house rather than an apartment (one of 100 in our block), I probably would have. The delivery person could have left my bagged dinner on the front step, and I could have snuck out and grabbed it after they left. Instead, I was already in bed, and it was a hot and humid summer evening. I would have needed to put on my compression garments to go down to our building’s foyer to do a face-to-face collection. I just didn’t have it in me.

The next morning I struggled through brain fog and post-exertional malaise to problem solve getting groceries. It takes a lot of support to function as well as I do. It also takes a lot of thinking and planning to make the best use of that support. My helper could tag along to act as ‘pack mule’, but going to the grocery takes about 45 minutes at the pace I can walk, and she’s only with me two hours per week. I had a lot of other urgent tasks too: watering plants; getting stuff off high shelves; doing a few dishes and emptying the dishwasher3 So I hoped to avoid using it all on shopping.

Why don’t I get home delivery? Having heavy groceries dumped in the building foyer, at a random time during a 4 hour window, during summer, then having to ferry them upstairs is not as much help as you’d expect. If the delivery person leaves them near our letterboxes, which are public access, deliveries can be stolen. A couple of orders had so many missing items due to stock shortages that I couldn’t meet the minimum spend, and the order was automatically cancelled.

In fact, don’t get me started on how many ‘conveniences’ that are touted as solutions for disabled people don’t work with many of our limitations. But drop me a comment if you’d like that topic covered in a future newsletter, and do share your own convenience fails.

The solution seemed to be Click&Collect4. I was able to grab the last slot of 2-4pm. My carer was due from 12.30-2.30pm, so that gave us half an hour’s grace. But 2pm arrived, we were parked in the Click&Collect car space and no notification had arrived.

Rising panic didn’t help me trying to work out the best option. Go into the supermarket and shop manually? Wait and hope? Go and hire a Flexicar and come back, alone, when the order was ready? I was embarrassed by this amount of difficulty with a basic task like buying groceries. I was annoyed that I might have to spend extra money to hire a car. I had a migraine starting and wasn’t sure driving was a safe option, as I can lose depth perception during a migraine. Maybe a taxi? But what taxi would come to drive me 500m and back? Tears pricked my eyes, and my kind carer seemed ready to do anything to fix a problem that was not of their making. I felt like a complete and utter failure in that moment. The warm wash of shame held me paralysed.

This tiny crisis had a happy ending. Encouraged by my helper, I rang the contact number and explained the urgency. Within 20 minutes my groceries arrived, were driven home, and unloaded before my helper had to leave. Most of them were even what I ordered. At which point I collapsed onto my bed and wept again with sheer exhaustion and the embarrassment of being seen as—of being—helpless, even for an hour or a day.

My feelings were so big, they piqued the corner of my mind that was still able to notice anything. Why was I even thinking about all of this? Why was I obsessing about efficiency? Why was failure at being optimal with my time management so painful? Why did it feel like with any incompetence or difficulty performing, my enoughness was on the line?

A year ago I noticed that being good hasn’t healed me. Now, it seems, I am trying to be ‘good’, to hustle my way around my energy limitations not to be healed, but to be impeccable. Despite limited energy, to ‘manage’, to be as independent as possible, to still be seen as a competent, worthwhile person. (Ouch.) But just as a budget won’t help you when you don’t have enough money to pay your essential bills, an energy budget won’t help you when you don’t have enough battery power or spoons to keep yourself fed and clean.

If we could hustle our way out of the problem of being human, I’m pretty sure we’d have done it by now. Part of the problem of being human is fluctuating capacity. Part of the problem of being human is that we’ll all be ill or injured at times.

That afternoon, my inner critic said, “You know what’s wrong with you…?” and prepared to settle in to clarify.

I said, “Yes. Absolutely nothing is wrong with me. I am sick but that doesn’t mean I did anything wrong or I am anything wrong.”

Neither are you.

Thank you for reading, your time and attention are a gift!

• How much do you have to ‘achieve’ in a day, to feel like a fully functioning human? To have justified your existence? (Your existence needs no justification, that’s just the intersection of toxic capitalism and ableism trash talking you.)

• Do you, or have you ever, kept out of sight because you were not at your best, and you didn’t want anyone to notice? What did your inner critic say to you about it? Whose voice from your childhood did that inner critic use? Does it call you a flake, lazy, stupid, useless or some other unkind thing?

• Is there a person or people in your life who you can bear to see you in your clueless, exhausted or strung out moments? A person or people who you know will (or would) still love and respect you even if you turned up with only 15% of your usual abilities? Take a moment to appreciate their presence in your life.

• Bonus question: Are you someone who can witness another person’s moments of weakness and not weave them into a negative identity like ‘needy’ or ‘flaky’ that they will carry forever after?

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