10.4.08

john continues to be fatigued, to the point that i've noticed he has started planning his days accordingly.

for instance, we had 4 air conditioners that needed to be taken out of windows throughout the house. he said, "i'll take out one a day for 4 days". huh? it caught me off guard but it makes sense. he knows he can't do all 4 in one day. he just can't. running errands, trying to work a few small acoounts, caring for the kids, ...all of it needs to be planned ahead and broken into bite size pieces over the course of days. what he used to be able to accomplish in a regular day is now spread over the span of a week-ish.

today he has some family over helping him with a project. it is so kind that they came to help and i'm pretty certain that have no idea how appreciative we are. we couldn't get it done without them. i'm dreading tonight though because of what this will mean for him over the next few days.

today he will work hard to keep up with them and not show any signs of pain or weakness (that he can possibly hide anyway). and tonight, when everyone's gone, he will be literally spent. i could say that he'll be sore and swollen, in pain and stressed, ...but it won't give you the whole picture. it won't explain how he'll be up most of the night in pain. it doesn't express how he may or may not be able to work his small account tomorrow, ...or even over the next few days for that matter. it doesn't show you how in the evening, after a day of activity like today has been, his legs swell and sometimes break out with vasculitis spots. his whole face swells and turns red his eyes turn to little bloodshot slits and he can't help put the kids to bed b/c he's so exhausted and in pain. and it doesn't illustrate how, 24 hours before they arrived, he was so so tired and did not want to go out friday night to take care of one of his accounts but he knew in his heart that there was no way he could do BOTH accounts AFTER working on the project with his family, so he forced himself.

i take my health so for granted. i could say i don't, and truthfully this past year has taught me to appreciate it more than i did. but still, the reality is that i do not need to think about 'what will i be doing 48 hrs from now' so i can plan how to handle today, so i don't set myself up for failure 72 hrs from now. it's all like this big timed puzzle that he has to plan out in his head from day to day and task to task. it reminds me of an elderly person, which is hard to swallow at 37 years old.

don't get me wrong, he pushes through while still playing with the kids and being reasonable and i am proud of him for knowing his limits. it's still just such a change from what life used to be like. the 'crisis' we were in has passed. he hasn't been hospitalized in 6 months and his meds have been decreased over time to the point that he is only on 2.5 mg of steroids and blood thinner and rarely has to give himself insulin shots anymore. now, though, it's learning to live with this chronic fatigue and weakness and pain and exhustion, and prolonged threat of decline that causes such anticipatory stress that it's both physically and emotionally taxing.

if this is how i feel, i can't imagine how he feels. he amazes me.
k