The Metaphor I Learned From My New House That Describes Life With Chronic Illness

In August my husband and I moved into a house on the property where my husband of 40 years was born. We had been renting a larger house, but the rent was being raised , and we felt maybe it was a sign for us to downsize and simplify our lives. I thought that maybe this was a good move to make my husband happier. Going back to his roots, knowing the landlady and her family all his life. It is also good for the landlady and her husband as they are aging and now in their 80s and there are two acres of land to be kept up. Having help makes that easier on them. The move literally happened on a two-week notice, so thankfully I hadn’t unpacked everything from when we moved into the other house two years prior. There was just something there that bothered all of us… including our dog.

As I started to organize things in the “new” house, I realized that it was wired for the time it was built… 1932. One to two plug-in outlets per room. That requires extension cords to meet all the electronic items we have. I realized at some point that it signifies my life a great deal. Being a caregiver, when I run into problems I add an extension cord to my life. My husband lives with many health issues. The most serious are arthritis, COPD, depression, anxiety and panic attacks, as well as needing to sleep with oxygen, not because of apnea, but because he doesn’t get enough oxygen to his brain when he sleeps. This requires a lot of giving on my part, and dealing with medications, several doctors and keeping track of everything that happens.

What is unique about our situation is that I, too, shave a chronic illness called Chiari 1 malformation which doctors didn’t find until I was in my late 50s. I have balance issues as well as short-term memory issues and problems finding my words sometimes. I have had no surgery and would not agree to it unless symptoms become so bad I couldn’t function. I have other issues as well like neuropathy and little feeling in one leg, asthma, etc. Normally I am not one who lets things get me down for long, but I do have bad days. It’s those days when I have to reach for an extension cord and plug it in so I can handle his bad day. There are days when dinner is a peanut butter and jelly sandwich because I have nothing left at the end of the day… no more extension cords I can pull from.

I do hate the times when people say “you look healthy as a horse” (even my husband). I may look it, but I sure don’t always feel it. I battled for disability for over three years until I decided it was time to stop battling. Yes, I worked for 23 years, but now I have so much pain most days that functioning is just out of habit. I was denied four times, and appealed each time except this last one. If it had been meant to be, it would have happened.

So as I find new ways to cope with my own illness, I also find new ways to cope with my husband’s illnesses. Some days I just want to crawl into a corner and turn away the world, but I can’t do that. I just allow myself to do what I can, when I can, and accept that I might not have the most perfectly clean and organized house, but I know it will get done when I have one more extension cord that is the right length.

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