Don't Put Things Off With Rare Disease

Don't get me wrong—I can sometimes be the queen of procrastination. I have my "lazy" moments. But I want people to understand that if, sometimes, well, often, I don't do something because of my health, it's not laziness at that moment! When living with a rare disease, there can be many factors at play to putting things off or procrastinating.

Procrastination versus health

In fact, I try hard to be honest with myself and others when I don't feel like doing something. It happens so often that my body doesn't give me a choice; if it's just a question of will, it's better to admit that!

Plus, people think too often that I'm using my health issues as an excuse, so I don't want to do this. Also, I prefer when a friend is honest with me and tells me they don't feel like coming over on a particular day rather than making an excuse.

Lazy moments are okay

Lazy moments happen, too. Mine sounds like:

• "I should call to make that appointment with the doctor in six months… but I don't feel like calling right now. I'll do it tomorrow."
• "I should go out in the rain to pick the ripe tomatoes in the garden...Ah, whatever, let's say I forgot to."

Why to avoid putting things off

However, when you have unpredictable health and a failing memory, you quickly learn that, in general, except for those moments of totally conscious procrastination, it's best to avoid putting anything off.

It's an essential aspect of "not putting things off" that risks forgetting! It is risky to think to yourself, "I have to remember to do this later," when you have executive dysfunction as I do.

I mean, everybody forgets things, but let's say, in my case, it's not a once-in-a-while issue. Before I had this problem, I was very good at remembering things! Now, if I'm not adding something to my reminders app or calendar, it likely won't happen.

But, of course, the central point is to do things while you can.

Best intentions for a picnic day

Here's a recent example. My spouse and I have wanted to picnic in a nearby park all summer. We've wanted to go for months, but we have yet to.

Some days, I didn't feel good enough. A picnic sounds easy, nothing too tricky, but I need to feel good enough to walk at least a little bit. At other times, we put it off because we thought another day would be better, one of us had a work meeting, or we didn't want to go at peak time.

Of course, there's the weather: a picnic in the rain isn't ideal. Plus, I don't tolerate heat well, so during a heat wave, it's not possible either. Sadly, we have more and more of those!

So we rescheduled the outing for the following week, and then I wasn't feeling good enough to go there and work on the same day. I was injured and couldn't walk, and the weather continued not to cooperate.

Spontaneity and rare disease

Sometimes, it's easier not to plan, and spontaneity isn't effortless when you live with a chronic illness or rare disease. But looking at the number of times I've had to cancel plans because of my health, I should've understood by now how good days are sometimes rare, so when I feel good enough, I should jump on the opportunity!