A heartfelt welcome once again to the Diabetic Partner Follies, a sharing place for partners of people with diabetes (PWDs). This week, we hear from Cheryl in Washington state, who's had a long and happy marriage with her Type 1 husband. But the disease has certainly been frustrating, calling upon both partners to muster up almost more strength and acceptance than they thought possible. As I read this, I knew just what Cheryl meant. I guess you probably will, too.
My husband and I just celebrated 10 happy years together. Seven years ago at age 33, this tall, thin, very healthy (never got sick, actually), plane piloting, water skiing, drag racing wonderful adventuresome guy came down with a very fragile case of Type 1. Our kids had fought off a very nasty case of stomach flu a month earlier when my husband started feeling thirsty and weak and had blurry vision. We took him to the doctor to discover his blood sugar was 495. A few days in the hospital and the doctors couldn'€™t agree whether it was type 1 or type 2 -- pills don't control it, so he's on insulin and we together try and learn all we can so he can deal with the disbelief, anger and frustration at his having his whole life turned upside down. They thought perhaps that his immune system was triggered by that flu and destroyed his pancreas cells.
At the same time, I was launching my home-based business after a few years working in failed dot-coms. Almost right away, my husband started having horrible symptoms that none of our then doctors could (or would) help us understand. He was nauseated to the point of being bed-ridden for an entire year. NO answers. He would sometimes turn completely cold and have to take a super-hot bath. He would have scary heart palpitations. A few years ago, for a period of at least a year, he would wake up in the middle of the night (normal blood sugar) and literally shake as if it were 30 below. One doctor we went to listened to all of these symptoms and I kid you not, said "What do you want me to tell you?" Needless to say, we're still very angry and frustrated with the medical system. His last endo wasn't much help, either. He once said, "I only do blood sugars..." Argh! Once early on, my husband had a bad low BG attack while driving. It scared him so badly that it was many months before he felt confident to drive anywhere alone. Now, we have the joy of hoping he isn't pulled over and tasered, should he have a low BG attack.
In recent years, he's been better able to keep his sugars under control but it's still a constant battle. Winter months were worse than summer, so I encouraged him to start going to a tanning salon and that has actually helped keep his spirits up. As many folks have mentioned, not many friends and family understand the restrictions this disease puts on you. Spontaneity is a thing of the past -- do we have enough strips, do we have enough insulin, get the icepack for the insulin, where are the needles, do you need a new lancet? No, I can't eat yet -- dinner's at 5? "Do you want to see the dessert menu?" LOL
We keep a can of sugary Sprite in the car just in case, and he takes a bag of 2-bite brownies everywhere as he knows precisely how much one will raise his sugar.
My husband doesn't "work," per se -- although a fantastic graphic/flash designer and 3D modeler, he manages the kids and most of the housework and cooking while I slog away at my computer for clients 12 hours a day. That's plenty of work in my book, but family and friends see it differently. I often get "the look" or lectures from family -- but they have no idea what it's like to live with, love and support a Type 1 fragile diabetic -- who has to live each day knowing he may not have as long as everyone else, who has a monkey on his back 24 hours of every day that's trying to kill him; who can't live the life of adventure and daring he once did that was such a huge part of his personality. Not to offend anyone, but if he had cancer or some more visible condition, I think (other people) would be more understanding.
And I'm by no means perfect. I get downright angry and depressed sometimes. It takes a lot of strength and acceptance when sometimes you just wish you could quit and not bear all of the responsibilities -- but I love him, he's my knight in shining armor, still. He fights harder than he lets on, he pushes himself for me and the kids and I couldn't ask for a sweeter, more charming and loving man.
(Thanks for letting me share, Amy. I really am so happy I found your wonderful blog and could share everyone else's experiences. It has really helped me get through some rough times and has answered my plea -- I had been looking for this place!)
-- Cheryl A in Washington