I am actually at my hubby's work right now, because we had terrible storms this morning and I didn't want to be home by myself. So I'm sitting here and thinking...AHA! Great opportunity for HIM to tell you (through me or you'd only get 2 or 3 words!) what's it's like being a caregiver to someone with chronic illness. So I asked him what affects him the most, or what stands out greatest in his mind as to dealing with my disease.
His first response was : mood swings. For example, some of the medications I'm on, particularly prednisone, makes my moods swing very dramatically at times. This past year I've not not-so-great a year. I've been on higher doses of prednisone, and there were lots of anger issues and lots of crying. Also, I do not handle disappointment well. I'm getting better. But he hates seeing me get my hopes up and then not be able to do what I had planned.
He also doesn't like how it effects me when people judge me one way or the other. Many look at me and just see a mostly normal looking person, with a trach, maybe thinking I had throat cancer. (Oh, poor thing, kind of thing). Or, they look at me like I'm normal, and I'm just taking up the handicapped spot because I am lazy. That one BURNS my butt. He also notices when people treat me like a sick person...acting like I can't do a THING for myself...and they talk really loud too, which cracks me up.
I asked my husband what the worst thing was. He said not knowing what's going to happen five minutes from now. "One minute she's sitting here typing, and the next she could have severe double vision, sudden neck weakness and arm weakness, and not be able to drive home."
I think he really worries when I go out, especially by myself (without Jacob) not that that really happens TOO often...because he says my pride won't let me call him if I needed help. He's probably mostly right. : )
I asked him what his primary emotion was regarding me, my health, and our lives with my health. The overwhelming response was worry. Worry that I will be okay, that I will be able to do what I need to do with Jacob, worry that we don't be able to complete plans we've made...
So there's a tiny bit of the point of view from a caregiver of a chronically ill person. My husband does NOT talk about emotions, and I had to ask 1 question 10 different ways before he answers. It's like pulling teeth! But I think he did a pretty good job.