When Chronic Illness Makes Marriage Lonely

My dog was bitten by a tick. We used tick bite preventative medication, but she still got bitten. One little bite left my dog with a high fever, lame in her back legs, and so weak she could barely walk from the living room to the kitchen without stopping to rest. Our vibrate, happy, full of energy dog was knocked down flat.

My husband reacted with frustration when he couldn’t make Daisy walk to the back door. I didn’t react that way at all. I knew down in my gut what it is like to have trouble walking from the living room to the kitchen. I knew exactly what it felt like to have weak muscles that don’t work. Instead of getting angry, I was able to coax Daisy one step at a time.

As much as I love Alex, he doesn’t get it. He has no idea what I go through, even though we’ve been married for 25 years. I wish I could help him understand. Years ago I introduced him to the spoon theory. It’s an interesting way of explaining chronic illness. Still, Alex cannot understand what it is like to be weak inside his own body. I can tell him, “I’m low on spoons.” And it helps, but not enough.

Because I have good days mixed in with bad ones, I think Alex gets confused. Yesterday I had energy. Today I don’t. Tomorrow? Well, I will find out tomorrow. There are times when I wish I could zip Alex inside a suit that gives him my chronic illnesses for a week. Just one week would help him get it. Until that suit is invented, he’ll have to guess. Since he can’t feel what I feel, he guesses wrong.

Alex struggles with empathy. He’s not a “feeling” kind of person. If the pipes in the bathroom need replacing, he can knock out the wall and replace them. He can cut cement board and rebuilt the shower. These are the things he’s good at. He’s not good at figuring out how he feels, or how other people feel. He’s not good at showing empathy. Alex knows our dog is hurting and is worried sick. He knows I’m struggling and is worried, too. But, sometimes he responds with anger when compassion is what is needed most.

Yelling at the dog for not being able to walk out of the bedroom isn’t going to help. Stroking the dog’s head, talking softly, praising Daisy for each step, telling her how proud you are of her, this helps. Kindness doesn’t come naturally to Alex. This has caused tension in our marriage. Sometimes I’d like a compassionate response, but what I get is a snappy comment, or a dismissive wave.

I’m not saying Alex is a brute, because he’s not. He can be thoughtful and sweet and generous. The only problem is, he can’t emotionally put himself in my situation. It’s tough for him to work out what I need. I’ve trained him to ask how I am doing, and to respond with, “I’m sorry.” Sometimes, just hearing that he cares helps. Because he does care, but Alex is a nuts and bolts kind of guy. If he can fix a problem with tools, he’s all set. Chronic illness requires tools he doesn’t have. He isn't interested in getting new tools, either.


Alex isn’t interested in learning about my illnesses. He’s not interested in what I need to do to look after myself. Alex isn’t going to hold my hand and tell me it’s going to be OK. When I had chemotherapy at a treatment center, Alex drove me to my appointment, dropped me off in the parking lot and left. He did this for 18 months. It never occurred to him to sit with me. In the treatment center, I watched couples hold hands and talk. I sat in a chair alone for six hours. Alex wasn't there.

The last time I had surgery, he didn’t wait in the hospital waiting room. He didn’t even want a phone call afterward. I drove myself home a few days later. When I need his compassion most, he’s not there for me. It breaks my heart. I want to fix him, but I can't.

Alex doesn’t get it. He doesn’t know how to respond. He built a wall between us where he can pretend there is no chronic illness, and I deal with it all by myself. I can share my whole life with him, except for my chronic illness. I wish I could share my struggles with Alex, but I can’t. Even though he is my husband, and I love him, when it comes to chronic illness, I’m alone. And I am lonely in my marriage because of it.

If your significant other doesn’t understand what you’re going through, you’re not the only one. I wish I could say your significant other will get it. I wish I could say it will get better. The hard truth is, it might not get better. Sometimes feeling lonely is something you get used to, just like chronic illness.

If you have any suggestions on how I can handle this better, or just want to vent about your own situation, please leave a comment. Thanks.

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Accepting the Unacceptable

Chronic illness requires us to accept the unacceptable. It is unacceptable to have an incurable illness. It’s unacceptable that science can’t fix what is wrong. It’s unacceptable that treatment is overwhelmingly expensive. In the USA, chronic illness vacuums every spare dollar and it still isn’t enough. Everything about living with a chronic illness is unacceptable. And yet, we still have to accept it. Rage, crying and despair doesn’t change it. It’s here and not going to go away. Accepting the unacceptable is one of the toughest struggles we face.

One thing that has helped me is learning not to obsess. I don’t think about diabetes every five seconds. I would go insane if I did that. Instead I think about diabetes only when I need to deal with it. When my insulin pump runs out, then I think of diabetes. Before I eat I have to test my blood glucose. I think about diabetes when I test. I think about diabetes when I bolus insulin before eating. I think about diabetes when I have to deal with it. The rest of the time, I live my life with diabetes in the background.

Getting to this point wasn’t easy. When I was first diagnosed with Type 1 diabetes, I freaked out. I stayed freaked out for the first year. The list of possible complications from diabetes is long and terrifying. I imagined them all happening to me, and tried to figure out how I would deal with them when they did. I created a mountain of fear and buried myself under it. Then I remembered I have to deal with problems when they happen, not before.

I treat my autoimmune form of muscular dystrophy with weekly chemotherapy. This chemotherapy drug causes cancer in humans. It’s a known side effect. Every time I take this medication I risk giving myself cancer. What a terrifying predicament to be in. If I stop taking my medication, I’ll die. If I keep taking it, I might get cancer. This is unacceptable. It is also the reality I live with.

I live with it by quietly enjoying not having cancer. Instead of visualizing the nightmare that might be down the road, I enjoy not having cancer right now. I enjoy not having diabetes complications right now. I’ve learned to pause and think about the things that aren’t happening. Instead of letting potential problems be an invitation to runaway fear, I’ve learned to shift my perspective. A hundred things could be going wrong right now, but they aren’t. I’m glad they’re not, instead of being afraid they will happen someday. Someday things are going to go horribly wrong. That day is not today. Today is a good day.

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Fighting Fear

Part of learning to pace myself is learning to tell the difference between a real problem and an imaginary one. It’s not as obvious as it sounds. The problems chronic illnesses cause have more permutations than a Rubik’s Cube. It is easy to be swept away by fear.

Fear of the unknown has survival benefits. It keeps us from going into a cave that might have a wild animal inside. If you came home and found the lock broken off your front door, you would be afraid a burglar was inside the house. Fear of the unknown keeps us from harm.

Our doctors gave us information about our illnesses. Fact sheets written in plain language explaining what our condition is, and what to expect, are helpful. They also unlock the door to worry and panic. I don’t know about you, but my mind starts trying to solve future health problems in advance. I don’t like surprises. If someone held a surprise party in my honor, I would leave. Yes, I was the child who was terrified of the toy jack-in-the-box. I like to know what is coming so I can plan for it. This makes living with chronic illness hard, because I want to know what to expect, only I can’t. Since I can’t know what to expect, I create contingency plans that have contingency plans.

If problem A happens, I’ll do action B. If action B fails, I will do action C. If action C fails, I will do…

I will do this all night long.

Problem solving in advance can be useful if I’m trying to figure out what to do if my insulin pump malfunctions. Most of the time, it’s not helpful. It’s just spinning in endless circles. Shrinking my perspective has helped me stop spinning around as much. Instead of trying to figure out how to cope with problems that might happen in five years, I’m learning how to focus on problems that might happen today.

Today my insulin pump might run out of insulin. My set might need changing. My pump battery might run out. To deal with these problems, I have insulin in the fridge, sets in the closet, and a spare battery in my purse. I’m ready for those challenges. I have Smarties candy in my purse in case of low blood sugar. As far as diabetes is concerned, those are the problems I am most likely to have today.

Today it is unlikely that I will lose my sight, lose feeling in my feet, lose my hearing, or have any other major diabetes complication. I am ready to deal with the problems that might happen today. I can leave future problems in the future.

Living with chronic illness is a day-to-day challenge for me. I have learned that worrying about what might happen, and trying to solve these problems ahead of time, just makes me crazy. Fear stalks me. Of course it does. The only thing I can do to combat my fear is dealing with today’s problems. I’m learning to acknowledge my fears, but not turn up the volume on them. Fear of the unknown doesn’t deserve my entire attention. Living my life, enjoying my friends and family, this deserves attention. I'm too busy living life today to be afraid of tomorrow.

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My first instinct was laughter

While surfing the crazy part of the internet, I found this place: http://www.qi-light.com/diabetes-treatment-by-qi-light.html

The Qi Light gave me the giggles. Does this look like a reasonable medical treatment?

 

Once I was done laughing, I got angry. The website claims this woo-woo light is a treatment for diabetes. This magic light bulb won't heal diabetes. If used along with test strips and actual medicine, it won't hurt diabetes, either. 

What makes me angry, I mean pissed purple, is the thought that someone will stop using insulin and start using this thing instead. My first instinct was laughter. Now I'm just shaking my head.

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Keeping the pace

Dealing with chronic illness is endless. We deal with medications to treat our illnesses, and medications to counter act the side effects. We go to doctor’s appointments when we would much rather be doing something else. Our illnesses flare up when we want to go on vacation. The only constant in dealing with chronic illness is how unpredictable it is. When I first got sick, I wanted to get better. My only reference point for illness was the flu, where sickness lasts for a few days, weeks at the most, and then life goes back to normal. It took me a while to understand normal evaporated without my consent. I expected to get better, and then got upset when I didn’t. I don’t get upset over progression any more, though. I have learned to expect the unexpected.

I don’t live in bitter resignation, gritting my teeth every day. I also don’t live in false optimism, looking for the silver lining. In that space between bitter and overly optimistic, is a quiet acceptance. I’ve learned that I cannot outrun chronic illness. Rage doesn’t make it go away. Neither does looking for the good in a bad situation. Like it or not, chronic illness is my running partner. What helps me most is regulating my pace.

Five things help me deal with this every day:

1. Make friends with the word No
My parents were active with several social service organizations. When I was growing up, I watched them say yes to every request. Will you write for our newsletter? Will you organize this event? Will you host this seminar? They always said yes. When my mom retired from her job, her social service workload quadrupled. People started saying, since you’re not working, will you be able to… I saw she was unhappy, so I told my mom she could always say no. She looked at me like I had green beans growing out of my ears. The idea of saying no never occurred to her. Perhaps because I watched my mom getting overloaded with requests, I learned the value of no. The word no is my friend. Saying no allows me to focus my limited energy on things that really matter to me.

2. Know your limits
Chronic illness can limit our physical abilities. A five hour hike in the woods might be beyond your abilities. It’s valuable to know this about yourself. Friends and family who remember who you were before chronic illness can try and push you, but you know yourself. The people who love you don’t want you to end up in the hospital because you pushed too hard.

3. Gently test your limits
I know this sounds like a contradiction, but many chronic illnesses flare up and die down. When in an active phase, walking from the living room to the kitchen may be exhausting. It is easy to become afraid of moving when you are physically wiped out and all you did today was take a shower. I have been there. I would still be there if I didn’t learn I could stretch my limits. My rule for limit testing is after three good days in a row, I can try doing something new.

4. Forgive yourself for weak days
Some days are weak days. Chronic illness can make it hard to get out of bed. Sometimes it is hard physically. Other days it is hard emotionally. When you are having a weak day, you have permission to acknowledge it. You have permission to rest.

5. Work to redefine what is normal
What is normal for me now is struggling to maintain my balance, muscle aches, poking myself with needles, taking lots of medication and resting frequently. It took time to make this feel normal. Since my illness is progressive, I have to keep redefining normal as my abilities change. Making room in my life for chronic illness helps me pace myself for the long haul. Life as I knew it ended when I got sick. Life as I have it now is still worth living.

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