One of the most un-lovely fallouts from being chronically ill is that my life has become very small in many many ways. To my mind, I am currently in a state of extreme stasis. Equilibrium. I am finally mostly off the roller coaster of constant crashes and ER visits and horrible pain spikes and major health crises. But this has come at a price, and lately I am wondering if the price is too high.

Because I see that my family has become collateral damage to me treating myself like a fragile molecule.

Let me break that down a bit so you can understand what goes on.

I feel mostly rotten about 98% of the time. I am physically uncomfortable in varying degrees, dealing with pain that is either hurty or pretty darn severe 100% of the time.  I feel great never. So I have gotten used to avoiding anything that will exacerbate my pain or discomfort.

The problem is that this gets to be a slippery slope. Things like sitting at the table playing a board game with my kids makes me hurt. My back hurts, my neck hurts, and at some point my head will hurt worse. My nausea will escalate and I will spend the night chasing it down with meds, hoping I don’t throw up. Will I die? No. Will I need medical attention? No. Will it injure me? No. So should I suck it up sometimes and just do it? Probably. And it’s like this with a lot of activities that come up in our daily lives. From taking walks, to going out, to running various errands. If it’s at all a stretch for me I will invariably decline to do it.

I have gotten so sick and tired of feeling awful that I have gotten myself into a space where I will avoid feeling worse at almost any price. My default position is to say no to everything because almost everything makes me feel worse all the time. My life being a narrow spectrum is pretty darn fine with me as long as I just don’t feel any worse than my baseline of mediocre-ly bad. If my base pain level is a 6-7 and I am managing it and hanging on and keeping the house running, I feel like I can’t spare those extra few points on the pain scale to be a more fun mom or a more spontaneous wife.

Except I’m not the only person in the equation.

And that’s something I’ve been forgetting.

That when I say no, no, no, I’m not just limiting myself. I’m cutting off the options for everyone around me. I’m limiting fun for my husband and my kids. I’m making my husband’s world smaller and my kids’ disappointment bigger. My illness takes center stage and my failure becomes larger than life. It’s pay now or pay forever.

So my pain is more managed, but ironically my life is more out of control.

Right now I’m kind of struggling with how to fix that.

If I was a hypochondriac, or merely exaggerating, I could give myself a big fat pep talk and, heck, just smile and cheer on up my way out of this mess!! 🙂

But my pain and sick is for real, and I don’t know how to make that fade enough to not scream in my face every time I try to quiet the noise.

I can do more on “good” days, but the reason I even have “good” days is because I treat myself so gently so much of the time.  For someone who was raised with “push through it” and “no pain , no gain” and “pain is weakness leaving the body”, all of this coddling is downright abhorrent. I literally used to hate and despise myself for not being tough enough to just be un-sick through sheer force of will. But I’m here to tell you, whether it’s a failure or not, all these years later, I simply cannot do it. I haven’t been able to overcome it, and it is what it is. I still can’t stand it, but I don’t seem to have a choice.

And my family’s along for the ride.

The question is, how do I make this ride as comfortable as possible for all of the passengers, now that I am reminded that I driving a bus and not a unicycle?