As a writer, I have discovered that some subjects are more difficult to write about than others. There are times when the words flow easily onto the page and only require minor tweaks here and there, and then there are times when it is much more difficult to pull the thoughts out of my head and place them on the page. This post falls into the later category. I have been writing and deleting and rewriting and deleting words, sentences, and whole paragraphs for the last three hours, all in the hope of conveying a series of thoughts and feeling I have about living with chronic pain.
I started out with facts and figures (100 million Americans are living with chronic pain each year, which is more than the number of people living with diabetes, heart disease, and cancer combined), but discarded the two paragraphs I had written because they just did not convey the point I was reaching for. Then I tried a round about route that started by describing a local event that I missed out on this weekend because of my chronic pain. That was discarded because it too failed to convey the right thoughts and simply came across as whining on my part. I have started and deleted at least a dozen opening sentences, and I finally realize the main problem I am running into is that I am afraid to put these things into words. A part of me fears that by putting these things into words, I will give them power over me and my life. But I think the opposite is true. I hope that putting these things into words, I will be able to gain some small power over the pain.
So here goes nothing, or everything.
Limitations: Learning to live with the knowledge that my body’s failure limits my activities is very hard. Knowing that if I go grocery shopping, I will be on the sofa or in the bed for the rest of the day, if not the next as well, doesn’t always stop me from going. I am unable to contribute to the household by doing any of the day to day chores without paying the price: doing laundry unassisted costs 2-3 days of horrible pain that leaves me unable to do anything, running the vacuum costs the rest of the day, as does getting on the floor to play with my young daughter. I can’t walk more than a few dozen feet without developing a pronounced limp. I can’t make plans with friends or family because I never know if I’m going to be able to follow through on those plans. The list is ever growing, and seemingly never ending.
Loss of Friendships: I had a friend that I met way back in middle school. We had drifted apart at times over the years, but we always reconnected after a time and it was as if no time had passed. When my pain levels started interfering with my ability to go out, she stopped talking to me. No texts, no calls, and certainly no visits. She had it in her head that the whole thing was only in my head because looking at me there was nothing wrong. After 23 years of friendship, she cut me out of her life. I couldn’t go on all day shopping trips anymore. I couldn’t go hang out at the bar while she got drunk and flirted with a different guy each week. In her words, I simply wasn’t any fun to be around any more.
People stare: I have a handicapped parking permit, so on the rare occasions I do go to the store my walk from the car is shortened. Every single time I park and head into a store, I get the stare from at least one person. This person who looks at me and thinks that I have no right to that closer parking spot because I look “fine.” They see me walking, and maybe notice that I am a little slow, but otherwise I show no sign of being “handicapped.” These people do not know what it costs me to put on that show of normalcy and they are never around when I am limping back to my car afterwards. Instead, I get the looks of pity as I make my way back to the car. What a difference a few minutes makes.
Depression: Not being able to do the things that need to be done, let alone the things you want to do, is a difficult situation to find yourself in. When you suddenly find yourself unable to keep up with the housework; when you find that you can no longer stand up long enough to cook dinner for your family; when you find yourself unable use the vacuum; when any of these happen, it leaves you feeling less valuable as a person. You find yourself dependent on your family and/or friends to take care of all the little things that you normally do to contribute, and it is devastating. You are exhausted from fighting the pain all day and from not sleeping at night because the pain keeps you up. You are fighting a losing battle, with limited energy reserves, and it is easy to become overwhelmed and depressed. It is so easy to give up completely.
It is easy to lose sight of the good things in life when chronic pain seems determined to destroy you from the ground up. It is so easy to fall into the habits of self pity and hopelessness. It is so easy to hurt those you love, and who love you, because you lash out unfairly. Not because they did something wrong, but because you are in such a dark place, angry and disappointed with your lot in life.
This is not the life I wanted, or planned for, but it is the life I have. I have chronic pain every day. Some days are better than others, but I am never able to do the things I need or want to. I’m a housewife that can’t keep up with the housework. I am a mom that can’t take my daughter on a walk, much less to the park to play. I am a wife that has unpredictable mood swings ranging from unstoppable tears one minute to anger and frustration the next (or maybe that is reversed). I am a writer that can’t sit still for more than 10-15 minutes at a time, so I’m constantly interrupting the flow of my thoughts as I try to write because I have to move. Most importantly, I am lucky. I am lucky to have an amazing husband who takes care of me and our family. We have a son who is in college and helps out around the house as well. I do what I can, and often more than I should, but they pick up the slack every day. I am loved, and cherished even when I don’t feel worthy of that love. I have support, and I am lucky because not everyone who is living with chronic pain does.
I think it is important to write about this, not only for myself, but also for anyone else who is dealing with a similar situation. I am one person out of 100 million people who are trying to cope with chronic pain on a daily basis. If my words can help even one person who is dealing with chronic pain, then I have done good, and that is my goal. If you are living with chronic pain, how do you cope? What are your biggest struggles? Do you have a support system in place? Please share your thoughts.