The one with the spoons

Chronic illness is a tricky thing.  My husband and I both have chronic, autoimmune conditions, but with a very different severity.  Mine comes and goes.  If I am eating well and taking care of myself - I’ll have periods of no symptoms, and then an occasional flare.  Matt’s is daily, forever.  I read a really good article that my sister-in-law shared with me a few weeks ago.  It talked about chronic illness  in terms of spoons.  Everyone gets a certain number of spoons per day, and everything you do in a given day costs you in spoons.  Need to get dressed?  That’s a spoon.  Have chores to do around the house?  They are each a spoon.  Commute to work, take out the trash, cook a meal…..spoon, spoon, spoon.


A normal person has pretty much unlimited possibilities for their day.  All the spoons you could want.  Ours are limited.  Right now, for Matt, they are very limited.  In addition to his diabetes, he is dealing with pretty severe GERD (reflux), and resulting esophagitis that has been going on since early November.  He has to eat small meals exactly every 3 hours.  And the meals can’t be just anything - they have to be either a liquid meal (shake) that is prepare and measure (gotta get in enough calories), chicken and veggie soup, or cod and sweet potatoes.  That is all he is eating right now.  If we want to go for a date night, eating a meal is out of the question right now.  If we want to see  movie, we have to consider what time it starts, how long it is, when we can squeeze in one of his meals, and whether his blood sugar will have any problems during the movie.  It’s the height of spontaneity, let me tell you.  If his blood sugar goes too high, he has nerve pain and other complications. If his blood sugar goes too low, he will crash and feel terrible until he eats or drinks sugar, which is difficult given his reflux.  If he has too much fat, his gall bladder spasms.  If he has too much protein, it worsens the GERD.  If you have followed all that, you can pretty much tell that he doesn’t get to eat much of anything.  He has lost a significant amount of weight (he was thin before this), and is trying as hard as he can to gain it back, with little success thusfar.  


When he was first diagnosed with diabetes, it felt like our number spoons was cut in half.  He was on some pills, and it was fairly minor.  Then he became insulin dependent.  Wait now…needles?  Lots more blood testing daily?  Definitely had more spoons taken away.  Next came his neuropathy diagnosis.  Lots of pain and more pills.  Spoons gone.  He has had other complications, but the latest struggle with GERD has probably been the worst.  We feel like we are down to about 2 stinking spoons.  We have adapted over time, and make it work, but man, is it hard to explain.  People will ask how you are, and you have no idea what to say.  Do you say how you really feel?  If you say you are barely hanging on for dear life and some days you really don’t want to go on….well, people will generally want to run in the opposite direction.  So, you lie and say you’re okay.  Even people who really know you well, generally want or expect to hear that you are doing better.  Sometimes I think they are afraid to ask because of what the answer will be.  You don’t want to be a downer, but then again, you also can’t do stuff.  So, at some point, you either have to keep making up excuses, or just come out with why it is you can’t do stuff.  


There is a lot of uncertainty about what the future holds for us.  We try not to think about it, and just deal with what we have going on today.  Make the best of it, enjoy what we can….take nothing for granted.  Looking back, we had no idea how great he had it just being on a low carb diet and shooting insulin a few times a day.  That would be a cake walk now.  On the flip side, we take time to enjoy very simple things now.  If there is a day he is feeling good - we will really try to make the most of it.  We are more intentional about spending time together as a couple and as a family.  We don’t sweat the small stuff.  


I guess I write all this to say, if you are a normal, healthy person, and have a friend or relative who is dealing with a health crisis that you don’t have experience with - sometimes the best thing to do is to just give them a hug.  Tell them you are sorry they have to deal with it.  Let them know you are there, and if you are willing, that you have a spoon to give them.  Cause there are days we run out of our own.  

For more on our story, click here.