After finishing my chores on a particularly bad pain and fatigue day, I lay down in bed. I pulled my weighted blanket over me.
Before I drifted off to sleep I thought, “This is it.”
I realized this is how the rest of my life is going to be.
I’m going to need to take naps after doing housework. I’m always going to be in pain.
I’ll need to see doctors. In fact, I’ll see several of them every single month.
The medical tests will never stop. I’ll need medication for the rest of my life.
I’ll never work a full-time job again. Sometimes I’ll need help when I don’t want it.
This is how I’m going to live the rest of my life.
I wake up from my nap and shuffle over to my computer. In one of my Facebook groups, someone poses the question, “Who here can remember the last time they didn’t live with chronic pain and illness?” I thought about it. And I realized the last time in my life I truly felt healthy was when I was 14 years old. The last 11 years of my life I have spent being sick. At first, I was more functional, but I gradually became less and less so.
When I quit working full-time, I was hopeful that I would eventually recover and could go back to work. Two years have passed since then and I haven’t been able to return to the workforce. I’m self-employed and I work part-time. But, working part-time has been a deep source of shame for me. Even though I know I’m better off not working full-time, emotionally, it still feels like a failure.
At the same time, I’m plagued with guilt. Here I am, feeling sorry for myself when I could have it much worse. I know many people who cannot work at all and require caregivers. Or, on the opposite side of the spectrum, I know people who are forced to work, but desperately wish they could stop. All in all, I’m quite lucky. I have a very supportive wife who pays the bills. Through her, I have excellent health care benefits. We live in a nice house, have pets, and live comfortably overall.
When I talk about how hopeless this life can feel sometimes, I’m reminded of all the things I do. I work part-time running my business, keep the house clean and bills paid, and I write.
But something still feels…off.
This isn’t how I envisioned my life, and even though I’m making the best of it, there is still a deep loss felt.
Growing up, I never imagined I would be disabled. In school, I was one of those “gifted” kids who was told they could accomplish anything. In reality, I had to take several leaves of absences from college and I graduated three years behind schedule. I struggle with working and keeping a consistent schedule. And so much of my life, too much of my life, revolves around finding new ways to keep the pain at bay.
I take pills every day. I do physical therapy and exercise. I get surgery on the joints the doctors tell me are too far gone. I rest. I get massages and trigger point injections. I get Botox in my jaw, and I wear braces. Everything I do has provided some relief, but it’s not complete. And, I still have to worry about overdoing myself. Can I walk the dog today and if I do, can I work later? Can I go to the grocery store or will I almost pass out like last time? Should I vacuum or save my energy for laundry?
Sometimes I feel like my life is just waiting for my next medical appointment. I find myself saying, “If I can just make it to my next massage appointment (or OMT appointment, or trigger point injection, etc.) I’ll be OK.”
I feel overwhelmed by the sadness that comes from living with a chronic illness. But I also feel some hope too. Because I am ill, I understand others who are ill and I can help them. I can focus on what I really love and care about instead of working all the time. I know that I am strong because only someone who is strong can bravely and unapologetically live this life.
My doctor reassures me that it’s normal to feel sad sometimes, being chronically ill can be a sad thing.
Right now, I’m trying to continue working through my grief and accept that this is how my life is — at least right now.
Maybe they’ll invent a cure for Ehlers-Danlos syndrome (EDS) tomorrow, who knows?
We’re all human beings just trying to make sense of the world.
And I intend to do the best I can to leave the world a little better than I found it, even if I have to do it in small ways.