Thief in the Night-Stealing Moments of My Life

I missed a soccer game. My youngest daughter’s first game ever, and I missed it.

I missed a lunch date with friends. Wonderful friends who have been ridiculously supportive.

I missed a cookout at my own house.

I missed countless family walks on beautiful spring days.

All missed.

Moments and memories all stolen from me by psoriatic arthritis. Flares have cost me so much and the price to pay is steep. I pay in the form of missed smiles and laughter, missed moments of seeing my kids grow and enjoy life.

Psoriatic arthritis has stolen much more from me than simply my health. No, that would be the biggest understatement of the century. PsA has stolen so much more than that. The list of things I feel cheated by with PsA is extensive and grows daily.

What has that thief in the night stolen?

My enjoyment in work- Being a teacher is a very physically and mentally exhaustive job. Many hours spent up and moving has left me with swollen feet and sore joints. Not to mention the brain fog that comes with trying to complete thoughts, sentences, or remember simple tasks.

My moments with friends and family- There have been times when the fatigue has been too great to do some of the activities that I have planned with friends and family. Hours watching soccer games, taking shopping excursions, and visiting the zoo have all been stolen from me. Missed opportunities to develop deeper and more meaningful relationships with those that I love weigh heavily on my heart. My children are only young once and at the darkest moments, I mourn the loss of those special memories that I will never get back. All due to the pain and fatigue of psoriatic arthritis.

My love of some favorite hobbies- Let’s face it, when simply showering is a chore, there is very little time and energy left to pursue those once favorite hobbies and pastimes. The thought of unearthing those beautiful beads to make jewelry or the frustration that comes from my hands not being strong enough to bend the metal to my will is enough to keep me from even trying. Once loved hobbies now lay forgotten on the shelves. Stolen from me by PsA.

My security- This one is especially hard for me because I have always been a “doer,” secure in the knowledge that if I wanted something done, I would do it myself. I was independent and strong. Every day I knew what to expect of my mind and my body. Now, from day to day and sometimes moment to moment, I don’t know what to expect from my body. I don’t know when I wake up whose body I will have that day. Will I feel 100 years old, or more like myself? This uncertainty can be very unnerving and difficult to plan for. Beyond that, living with PsA has also affected my financial security. I earned my Masters degree with the idea that I would be able to contribute to my family financially and be able to do the job that I love. Now, with my health facing such an uncertain future, it is difficult for me to be secure in the knowledge that I will be able to contribute to the financial security of my family.

My emotional stability- PsA has left me with a great deal of anxiety. I often experience a feeling of being out of control of my own future and of the life around me. Sometimes I feel like it is difficult to cope with feelings of inadequacy and anxiety at not being an “equal partner” in my marriage or “pulling my weight” at work. PsA has stolen the emotional stability that I once had and left me riddled with guilt and anxiety where I was once strong and independent.

The good news: we do have a choice

I know that moments when my pain is minimal or when I feel energized are fleeting. I never know what is coming around the next corner or when my next flare will be. I have developed a deep appreciation for the flare free moments. I value those times when I do get to see the soccer games, when I am blessed by time with friends, and when I enjoy my hobbies. Now I value that time so much more than I ever thought possible. I am reminded to never take for granted those moments in time, however brief they may be, when life feels manageable or even normal because despite all of this, all of these stolen moments, I choose to feel blessed by the moments I do have. I choose to focus on the positive.

I choose to look that Thief in the Night right in the eye and say, “No. Not today. Today, you will not steal my hope for the future. Today, you will not steal my moments of joy. You will not steal a of lifetime of missed memories. Today, you will not win.”