How I Learned to Embrace My Pain

Today I am so tired of being tired. I am so tired of having to weigh my list of things to do, versus my list of what I want to do – and knowing that I cannot possibly do them all. I am a relatively young woman. I should not have to choose between getting groceries,  finishing the laundry or taking my kids on a promised afternoon hike to feed the birds. It just seems so unfair. Today I am feeling miserable, angry and resentful. And I am completely at peace with these feelings.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I have spent the last four months taking part in a “mindfulness intensive program.” It has been a complete game-changer for me. I have always been a positive, glass half full kind of person. When I first started dealing with the consequences of Ehlers-Danlos syndrome (EDS), I was able to maintain my upbeat, happy attitude. I would get knocked down and get right back up, swinging even harder. Many, many times I would end my recount of the latest hospitalization or dislocation with, “But it could always be worse.”

As the years passed, and the flare-ups or injuries were taking longer to recover from, my positivity started lessening a little. I would still end the recount with reflecting on the fact that it could always be worse, but the words felt hollow to me. This is where the line between logic and emotion started to blur.

Fast forward a few more years. Now I am trying to run my business, raise my three young kids, maintain some sort of social life and be the best wife I can be to my very supportive husband. I am, rather unsuccessfully, attempting to juggle too many balls in the air, and still live with the reality that my health is failing me. I was trying to ignore my body. Ignore when it would tell me to slow down, to get more rest, to take it easy.

Well, I have learned that if you ignore what your body is telling you long enough, it will simply just stop. Imagine a giant gong being banged. My body stopped on me last summer. It made me pause and reevaluate what I was dedicating my limited energy too. I decided to take a step back from my business, and put everything non-essential on hold. I took much needed time to give both my body and my mind a rest. What I learned is something I have known all along. Our minds can make us sick, and our minds can heal us. By ignoring the warning signs and forcing my mind to ignore the constant pain, work through the brain fog, power through the fatigue, I was making myself sicker than I needed to be.

I mentally had a very hard time taking a step away from work. Being self-employed is a mindset. I never shut off my work brain. I was always “on.” I have worked since I was a teenager, taking less than a year off after having each child. So putting my business on hold did not come naturally to me. That being said, taking a true step away was the best health decision I could have made. It enabled to me dedicate 100 percent of my attention to feeling as healthy as a person with EDS and anklyosing spondilitis can. I readjusted my goals and mindset. I slowly worked my way back to my positive, cup half full mindset.

Being on a “pause” also allowed me the time to invest in an amazing opportunity – the mindfulness intensive. When I was working full-time there is no way I could dedicate there hours every Friday morning to learning the practice of mindfulness, plus the hour a day to practice meditation. My main objective when registering for the program was to learn how to embrace my pain. What I gained from the course was so, so much more. I have found an inner peace that I believe was always there but had been dulled from years of neglect. Years of simply pushing through, of feeling like if I ignored the pain, I could pretend it was not there. What I learned through my practice is that while some pain is unavoidable, suffering is not.

Living with a chronic illness, or two in my case, does not mean that I have to live with suffering. It does not make me a victim. By allowing the pain I am feeling in, and sitting with it, it no longer is something I am angry about. It no longer controls my thoughts. It simply is. It is a part of who I am. I have good days and bad days. I cherish and celebrate my good days, and I am embrace my bad days. I learned to love myself in it’s entirety – dislocations and all. I no longer worry about how tomorrow will be…Will it be a good day that enables me to play with my kids, get groceries, respond to emails? Will it be a day filled with pain that requires me to stay in bed and rest? It doesn’t matter. It will be what it is. And I am OK either way.

So, when I woke up feeling lousy today, and immediately my mind went to my long list of things to do and what I hoped to accomplish. And then the anger and frustration set in. Angry that I cannot just hop out of bed like a healthy 40 year old woman can, and frustration that the tasks I had planned to get done would have to be put off in order for me to still go on a hike with my kids. My reality is that some days I can do it all. Some days I have to pick and choose, and some days I cannot do much of anything. By allowing myself to feel the anger and frustration, it went away. It didn’t control my thoughts. I felt it for a while and then it dissipated into a feeling of peace.

Today is what it is. And tomorrow will better.