Adjusting to the Truth That I Can Never Go Back to My Healthy Self

When I first got sick with Lyme disease but didn’t know what the hell was going on, I believed this would pass and I would go back to “who I was.” I was sure that whatever reaction I had had from the cortisone injection in my back would somehow get figured out and then I would be better. I was convinced my left foot hurting was just a running injury or part of my back problems. Every night I lay my head against my pillow and asked whoever could hear me to please please please just let me go back.

Please let me go back to my healthy body, the body I existed in for 28 years.

Just let me be her once more.

That desire for my old body and old identity stayed with me for the years that followed. I cried many tears wishing for some shift or change, some way back to who I was before. I longed for the days where I only lay in bed at night or to take a nap. The days where I never felt nauseous from drinking water, never knew the bright burst of nerve pain from just placing my feet on the floor, and never struggled with putting on clothes because my joints hurt too much.

Before the complex regional pain syndrome (CRPS). Before the Lyme. Before the gastroparesis.

Surely there had to be a way for me to feel exactly as I had before. In the early stages of “being sick” I held on to that belief and felt certain this was the only way I would be happy. I would accept nothing less than being 100 percent better and running, working full-time, and doing whatever I pleased whenever I wanted. This was the reality I dreamed of and one that kept me living day after day. Surely I would get fixed and then I could be her again.

Time moved on. A year passed and then a few more.

I slowly adjusted to being sick that first year. It no longer was a new reality but the one that had been happening for many many days. Feeling like crap from the moment I woke up was no longer strange but a given. Our lives shifted and my husband Sean and I built a new life dictated by how badly I felt each day.

We accepted that some days I wouldn’t leave the house and some days I would. My nausea dictated our menu and Sean became accustomed to me not eating dinner with him and often me being into a different room so the smell of food didn’t make me throw up. Doctor appointments peppered our weeks. Sometimes I needed someone to drive me because I was in too much pain, and sometimes I could drive myself. There was never any consistency besides the fact that I never ever felt 100 percent well and usually 60 percent at very very best.

I did my best to keep working, holding tightly to the belief that this ability allowed me some sense of normalcy, of occupying the faint reminder of who I was before. I was only able to work a few days a week, but working often meant my pain got a lot worse. Sean became resentful of my job because I put work above all else and my days off were all spent in bed or at the doctors. We rarely went out to dinner. When we did we often had to leave early because eating had made me sick to my stomach. People stopped inviting us to get togethers. It was a difficult time in our brand new marriage.

Then things shifted again  and we slowly adjusted to my CRPS taking center stage and with that, I shifted into becoming a 31-year-old disabled woman complete with her own wheelchair and shower chair. It is our reality and one that over time we have figured out, though not without some growing pains.

I struggled with the idea that maybe I wouldn’t get better for much of 2015. Quite a bit to be honest.

One day I looked at my Mom and said, “Im not sure I am going to get better. How do I live my life in this wheelchair, Mom? How in the world do I keep living this way? How do I live a life in this much pain?”

She came over and held me in my wheelchair while we both cried.

I realized that I could never go back to who I was before becoming sick.

***

Anything we go through in life changes us.

New jobs, falling in love, having a child, losing someone we care about. Illness. Divorce. Death. All of it molds us and we shift. We shift and shift and shift as our lives move through good and bad periods of time. We are who we are at our core, but life pushes us in new directions and we flow through each change.

Even if my pain goes away, my nausea goes away, and I walk around like a normal person, I will never be the Genevieve that existed before all of this. I have experienced too much to reside again in a place of ignorance about chronic illness and disability. Just like my struggles with mental health issues, I am forever changed.

I will never be able to take walking for granted, never assume that my legs will carry me anywhere I want. I will never forget what its like to literally not be able to eat even though I am starving. I will get in the driver’s seat of a car and remember how I couldn’t drive for 17 months. I will never forget that a body can fail you at any moment. I will be out in a store and be reminded of when I couldn’t leave my house for 16 days.

Yes, these memories will soften and move backwards in my brain but I know that at some random time or place, I will be reminded of this period of my life.

It’s strange to think of who I might be when and if I feel better. What will I achieve? What will define me then, when illness and pain are no longer at the forefront of my existence? I fight to not be defined as being just a sick person, but it certainly makes up a portion of Genevieve.

***

Yesterday at physical therapy while walking up and down the pool, I asked my physical therapist if she thought I would run again one day. She sat there for a few seconds quietly and then said, “Physically yes, I believe one day in time with a lot of work you would be strong enough to do it. The question is it worth it given your history of getting injured. I think it would be better to find another way to do cardio that still fulfills you.” So today I have finally given up on running, after carrying that hope in my heart for several years.

Maybe I will one day be 100 percent better. Maybe I will be at 75 percent and my feet will hurt some days after a long day. Maybe I will always be nauseous when I eat certain foods that aren’t good for my gastroparesis.

Maybe maybe maybe.

The only truth I know for certain is that I will never be who I was before chronic illness and pain changed my universe. We can’t go back to who we were when we were healthy, but that doesn’t negate that who we will become won’t be just as worthy as who we were before. I look forward to seeing who I become if and when I finally feel better.

A longer version of this blog was originally published on Ship With No Sails.