The Long, Long Road

I thought I would have caved in by now, fallen in like a deflated souffle.

It’s been 25 days since our life radically changed in one split second, or perhaps it occurred over the course of many hours. Hard to tell, hard to know.

All I’m sure of is that the days we used to have are gone. Gone forever, or gone for a while, we don’t know.

His sister says to tell him, “Chin up.”

Oh, if it were only that simple. Simply a matter of will.

I worried about me. Once I stopped being consumed with worry about him, I remembered me. Twenty-four hours in, when I left the hospital for a shower and change, and a quick nap that never happened, I made the conscious decision to increase my prednisone.

I’d spent over a year weaning down, weaning off. And I did stop, for about a month, but then the old pains came knocking and I gave up. “I’m done,” I said to the nurse practitioner at my last rheumy visit. Done, done, done.

If a little prednisone is the difference between feeling good and feeling bad, then bring it on. I told her I was on one milligram, and would stay that way. She nodded, but I didn’t need anyone’s permission. My body, my life, my decision.

So that Sunday at home for the first time after his massive heart attack, after I knew that he’d made it through that first night, that first 24 hours, I told myself what to do to keep myself going.

I would increase my prednisone to five milligrams, five times what I was getting before. And I would stay on that dose indefinitely, for as long as it took, till my slow, self-plotted days resumed.

Right now my days are nonstop, nonstop, a whirlwind of medical appointments hither and tither. Nights that don’t include much sleep, or much rest. Nights that when I do sleep a little, I do so halfway, alert for any sound, any need.

And therefore, I find myself surprised that I’m feeling fine, physically. I am tired. I am exhausted at times, and I can’t think straight at other times, but that is normal. That is a normal reaction to such a crisis.     

As we proceed down this long and tortuous path toward recovery, I have to give thanks that at least one of us is feeling normal, and that so far I can still claim the fortitude to keep on traveling down that seemingly endless road.

This song keeps playing in my head, the mournful beat and the words:

You know I can’t let you slide through my hands

I watched you suffer, a dull, aching pain

Faith has been broken, tears must be cried

Let’s do some living, after we die

 

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2 thoughts on “The Long, Long Road

  1. phat50chick

    Irma, we are stronger than we think. You are stronger than you think. You’ve been pushing thru your whole life. You’re not stopping now. The pred is probably a great coping mechanism to keep your body at a level that will allow you to keep pushing as long as necessary. Glad to hear from you

    Reply
  2. Carla Kienast

    Irma: There is an old saying that God doesn’t give us more than we can bear. To that I have often replied, “I wish He didn’t have so much faith in me.” (Meaning of course that perhaps my abilities to cope have been overestimated.) I wish I could be there at your side to help carry this load. Know that I am there in spirit and that I also have great faith that you can walk this road. As you have done by upping the pred, remember to take care of yourself. It’s hard to do when someone you love needs so much. Just remember that, as they say on the airplane, put the oxygen mask on yourself first, so you will then be able to put the mask on your loved ones. In the midst of everything you have going on, it means a lot that you have taken time to update us. Sending hugs and strength.

    Reply

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