When excuses aren’t excuses

A more bitter part of me wants to demand that, before anyone gives anyone with a chronic or enduring illness advice about what they should be doing, they should have to live through my past couple of weeks before giving it.

Now, before anyone panics, it’s just been a tough couple of weeks. I’ve been caught in what I call an “autoimmune loop,” first triggered by allergies, then flowing into everything from debilitating insomnia to blood sugar spikes and crashes. Good times…

I will grant, that having endured that, I’m particularly sensitive when people start throwing around, “Well, all you have to do is…” advice. I admit it. It pisses me off. After spending two weeks feeling like you’re a combination of drunk, high, coming down with the flu, and hopped up on way too much caffeine, that kind of advice hits wrong.

But I’m also listening, and in the course of listening, I have my own advice. I understand those of you trying to help people like me mean well. You sincerely want me to feel better. You believe you have answers, and the fact is that you do.

You’re also not listening.

Almost every conversation I’ve ever had with someone who believes they know how to fix me revolves around a single premise: everything I have to say about why their advice is a struggle is an excuse. I’m here to tell you, no, it’s not.

Yes, I can be doing more than I am. Yes, sometimes, I have to push through the terrible consequences of my current state of health in order to make it better than it is. That is true.

It is also true that, when my blood sugar crashes while I’m walking around the grocery store, so I have to cling to my cart like a lifeboat, and thank God my wife is with me to drive me home because I might not have made it otherwise, and I’m still shakey more than 24 hours later, it’s not an excuse. This stuff really happens. It really does limit what I am able to do. I have to keep in mind that every expenditure of effort I make comes with a cost I have to pay, sometimes for days. That’s not an excuse. It’s reality.

All I am asking you well meaning people to do is to understand that. Modify your expectations by the reality of the health I have right now. Not the theory of how healthy I could be. Not with a guilt trip about how I’m unhealthy because I did it to myself. With the fact that, right at this moment, what I’m experiencing is what is.

Help me with my reality. That will actually help.

DLH

Are we awake?

Unfortunately, sometimes we’re awake when we don’t want to be. Insomnia has many and various causes, but for some people the problem is both chronic and enduring.

I’ve struggled with sleep as long as I can remember. For whatever reason, I’m more awake late at night and I tend to hit my stride just about the time everyone else is ready for bed. Being a night owl makes living what most people call a normal life difficult at best.

But the problem is that it’s not just staying up late. My body seems to have an awake switch that, once its turned on, no matter how tired I might otherwise be, I’m awake. There is no real rhyme or reason to that switch. It can stay on for one day, wake me up in the middle of the night, or in my worst circumstances, keep me awake for weeks.

I’ve learned to cope with that kind of insomnia for the most part, but I’ve discovered that it makes recovering from an illness a challenge I did not anticipate facing. Now, in addition to the challenge of being awake at appropriate times, I have to make sure that I am not so fatigued I cause myself further harm.

That said, it is a problem that can be managed. I have to be careful with when and how much caffeine I consume, and I’m discovering that how much, when, and what kind of calories I consume can contribute as well. As with most things, this is a learning experience, and as I learn, I will continue to share what I know with you.

DLH