8.31.08

i have to say this "learning to live with chronic illness" is the main theme of the past two months.

while john's blood levels have been good and his meds have been able to be slowly decreased over time and he has not been hospitalized since last spring, he's still not ..."him".

last week at work we had our large fundraiser and john danced. he didn't dance as hard as he used to but he was up on his feet for probably two hours. that two hours took him SIX DAYS to overcome. for an entire week he was exhausted, going to bed early and sleeping in, and still needing 1-2 two-hour naps each day. he couldn't engage with the kids and was in pain.

2 hours of moderate activity = 6 days of recovery? holy cow.

during that week someone called john and he said he was in bed. she asked why and he said he wasn't doing well. she was shocked and said, "i thought you were fine and that was all over".
no, he is not fine. it is not over. it's just that people move on and john's not a complainer. there are times that i'm guilty of it as well.

it dawnd on me the other day that i don't even know all that's going on with him all of the time. i will go days without asking how he is because i just assume that he's ok or he'd tell me. that's not so. every time i ask, there's something new: no feeling in the top of the feet, new vasculitis spots that have showed up in long streaks down his calf, swelling in his head, this weird spot of swelling in his finger that was so bad he couldn't wear his wedding band, red spots that look like blood blisters on his legs that scab over like bug bites gone wrong. i've never asked and had him NOT have something new to report or show me. what that tells me is that he is still sick but he is not a complainer.

it's hard when people ask, "how's john?". it's sweet and i'm thankful that they care but i'm never sure how to answer. to look at him he seems fine. but he's not. how do i explain that in many ways he's closer to 67 than he is 37? he's fatigued, exhausted, in pain, and swollen. he can't play with the kids, exercise, play basketball, lift or do much of anyhting physical like he used to. while you'd think this means that there are only physical limitations, the reality is that all of these pyhsical limitations have created psychological ramifications as well. he's less, ...happy? jolly? optimistic? i don't know the word. he's frustrated. yes, that is definaltely accurate, he is frustrated.

it's just recently that he's started expressing this to me. it's just now that he's saying "i'm afraid to start exercising b/c i'm afraid it will lay me up for days and days and then who will watch the kids when you're working?" and "i'm afraid to get new accounts (before he got sick he had a business taking care of the elderly but he has lost that business due to his inability to work which has drastically impacted our finances) because how can i ethically commit to take care of someone else when there are days i can't take care of me or the kids?" and "i'm frustrated because how can i finish what needs to be finished on the house (the bathroom addition that is currently nothing more than a big hole in the side of the yard, the upstairs bathroom that has the never ending leak into the computer room ceiling, the siding that currently is just our house wrapped in 'LOWES' wrap) when a few hours of physical activity lands me in bed for days and we don't have the finances to hire someone to do the work."

what's worse about that is that there are many studies that connect mold to vasculitis. our house is d-a-m-p for sure with a 100 year old well in the basement and an underground stream that runs under the house. we did find mold behind the walls during one of our many attempts at fixing the bathroom leak and we replaced all of that but it leads me to wonder what's behind all the other walls of the house? the house is so moist that many times a year we cannot open certain doors because the dampness makes the door casing swell. and i think of the kid's allergies and wonder... but that's all for another day i suppose. in the mantime, we certainly can't sell a house that's in need of siding on the outside and paint on the inside. i'm not sure we could obtain a decent mortgage in this economy anyway with only me working. so here we are.

we talk about optimism and baby steps and moderation and how far he's come and all that, yes; but the reality is we both know that for now this is our reality and it is effecting every aspect of our lives even if in ways that are not obvious to the naked eye.
so when he comes to me with exasperation in his voice to report that yet another someone has said, "i thought you were fine and that was all over", it breaks my heart.

and things could always be worse. yes. that is true.
and things could be certainly better too.

tomorrow is september. john got sick january 8th. it has been a very long year.
k