2021 & Self Worth

I was really shocked when I realized that it had been nearly a year since I had posted anything. I have started posts in my head when I couldn’t sleep, but whenever morning came, I was too tired to sit down and type it all out. Even now, I am not sure how this is all going to come together in writing. I definitely feel rusty when it comes to expressing myself here. So bear with me while I hopefully get back into it!

As most years probably are for most people, 2021 has had its up moments and down moments. One of the up moments was finding a physical therapist who is knowledgeable about some aspects of my various conditions. My ME specialist was very wary about sending me to any kind of physical therapist. I wanted to work with someone to maintain any strength that I had in a way that wouldn’t exacerbate my symptoms, but most physical therapists would have no idea what to do with a patient like me. Well it’s not that they would think they didn’t know what to do with me. Unfortunately, they would most likely do the wrong thing (pushing too much activity and working too roughly with my body). So I had written off being able to work with a therapist. But my mom found a fabulous PT through her orthopedic surgeon. She has been seeing me since April and has made a marked difference in the number of migraines I get. She has also been giving me small, isometric exercises to help strengthen my body in a safe way. I do all of my “exercises” laying in bed. They are as basic as activating my core for three seconds at a time. She understands that my body gives delayed feedback, so we always start very very low and slow to see how my body copes with the movement. She listens to my concerns and symptoms and always lets my body take the lead. She also noted that my body is extremely hypermobile, so strengthening the muscles around my joints should help with my overall body aches and pains. I am so grateful to have found someone like her. I have been desperate to do something to help with the deterioration of my body. I don’t really think of this all as “graded exercise therapy” because I never go outside of my energy envelope. This isn’t about some false curative path to completely restored health. It’s about finding strength and stamina safely within the limits set by the disease.  

As mentioned above, there have definitely been some lows this year. Two events really stick out in my mind as lows that made me question my self-worth and fight not to be drowned by feelings of inadequacy and guilt. They both happened in the same week. I turned 30 this year. Now this wasn’t all bad. Brandt and I took a lovely trip the weekend before my birthday. We stayed at a beautiful mountain resort just over the Virginia border. Of course trips nearly always bring out mixed emotions. I love being with my husband and experiencing new places. We have been to some nice spots over the years, and this trip was no exception. But the drive up was enough to nearly exhaust all of my reserves. Each year I feel the diameter of my life shrinking, less and less able to travel outside of the confines of my home. We had scheduled a few, small activities to do while at this resort and had to cancel two of the four. Brandt went hiking, but I couldn’t go with him. We logically understand that I have these illnesses. We have planned around them for years, but it is still hard. It still sucks. And we still get upset over it.

Moving on! The weekend of my birthday, nearly my entire family gathered together to celebrate! We were just missing my mom and my younger brother Daniel. Now I will get to why my mom was missing in a minute. It was so fun having them all here. My sister Kristin made a beautiful and delicious cake, and all of the women got pedicures and massages. We spent the day together as a family playing games, eating food, and opening presents. My parents and Brandt had organized 30 presents for me to open, and my siblings spoiled me with a generous gift too. It was a wonderful day, and I felt loved and celebrated. So why am I calling out turning 30 as a low point of the year? It wasn’t the actual celebrating. That was a definite highlight, made special by the people I love most. But the actual reality of turning 30 is what has been messing with my head ever since.

I know that “age is just a number” as they say. And I need not feel differently about myself just because the sun has circled the earth a few more times. But something about entering a new decade of my life with this illness has been challenging to process. I got sick when I was 23. Still just a kid by most accounts. Who let me get married?! (sike, I am so happy I got married) But when you are that young, you feel invincible. I never, ever thought that I would still be sick at 30. I never thought I would lose nearly my entire 20’s to this disease. And that’s not to say that I didn’t live and love and enjoy my 20’s. I did! I made amazing friends, had a fulfilling job, strengthened and nurtured the bond with my husband, served in my church, made beautiful music. But I did all of these things completely exhausted. In pain. Fearing each day and what it would bring and needing to push through constant malaise to do anything. And all of those activities that I loved, doing all of those things that brought me fulfillment, joy, and purpose made me infinitely sicker. I can’t drive. I can barely sing or play the piano. I can barely attend church let alone serve like I was.  I am so incredibly grateful for the friends I have, as making new ones has become complicated and cumbersome. Entering my 30’s worse than I started out with this illness is scary. What will 40 look like? And yes, I have stopped doing the things that lead to my precipitous decline. I hold out all hope that that is enough. That I have hit my bottom and will either coast here or see some improvements. But you never know with this disease. Sometimes you think you are doing everything right and then have a mini crash for seemingly no reason. And that is terrifying. Maybe that one outing was one too many. Maybe I will never completely recover from the second dose of the COVID vaccine (off topic, but still something I think about).

The other thing about turning 30 is constantly reevaluating the expectations I have for my life. If you would have asked my younger self what I thought I would have been up to at 30, it would not have been this. I would have thought I would have a career and/or children. That I would be accomplishing far more than I currently am. Of course, I could have never predicted being married to someone like Brandt when I was younger. So maybe the predictions of the past weren’t all better than what I ended up with. I am sure that I am not the only one who takes stock of their life and wonders what more they could be doing. Who feels like they didn’t accomplish all that they should have. But I do have to come back to a previous post of mine asking the constant question of “what if?”. Constantly getting down on myself for what I am capable of is stupid. I know that. I do have to take each day one by one rather than getting caught up in the bigger picture of the failed expectations of my life. I have to set new expectations that don’t discourage me. I have to take a true picture of what my body will allow me to do and work within those confines the best I possibly can. And changing the expectations for my life doesn’t mean that I have lost hope for things to improve. I always have an ear to the research going on the in the field and look forward to advances.

Getting back to why my mom was missing from my 30^th birthday celebration. My Grams, her mother, passed away four days before my birthday. She had been deteriorating over a few years, so it was a relief in some ways that she was no longer in pain. But it was also incredibly heart-breaking to finally lose her. I believe in life after death, and so I believe that I will see her again. I believe that she has been reunited with so much of her family and is happy.

These monumental life events often bring out a lot of negative emotions while dealing with my illness. I can handle my day to day okay. I have a routine that helps keep my body as cared for as possible. I have pared down nearly all of my responsibilities outside of my home so as to minimize exacerbating my illness. When this routine is broken, and I must confront the reality of this disease in a new environment, it is incredibly challenging. Being unable to attend my Grams’ funeral was pretty devastating. She took care of me when I was in college, especially when I got a bad case of mono. She was my home away from home. She lead and taught through her extraordinary example of selfless service. Not being with my family to celebrate her life and get that goodbye was challenging. The trip to Utah would have been nearly impossible for me in normal circumstances, but with the COVID pandemic still raging, the trip was out of the question. Beyond just being with family, I yearned to be helpful. I wanted to clean my Pa’s house while he mourned with his children. I wanted to cook or help make plans. I wanted to create music for her. I wanted to sit on their porch and just feel close to her. Instead I watched the funeral over Zoom. And that was it. That is what I did to celebrate my Grams. That was all I could do. And it tore me apart.

If I couldn’t be helpful in Utah, I wanted to be helpful in North Carolina. I wanted my parents to come home to a clean house. After being in Utah for weeks, I knew that my mom was exhausted emotionally, spiritually, and physically. I really wanted to make this happen. The only problem is that I can barely clean my one-bedroom apartment. Brandt does most of our cleaning. And so, he took on this project too. I know that I talk a lot about Brandt in my writing, but I honestly would be lost without him. He cleaned my parent’s entire house with a happy and kind attitude. He dusted, vacuumed, mopped, scrubbed, and got clean sheets on the beds. How many women could leave their husbands to clean an entire house and know it was being done well? I laid on the couch and watched hockey and quietly cried in grief and gratitude. Halfway through cleaning, Brandt had to run to the grocery store before it closed. At 9 PM after cleaning for hours, he left to do our grocery shopping. Would I have loved to have taken this off of his plate while he was performing this major service for my family? Uh yeah. It is devastating to have to sit back all of the time? Yep. At the end of all of the cleaning, he leaned over, kissed me on the head and gave me the credit. He said “this was a really great idea”. As if I deserved any of the credit. As if I had anything to do with it. Gah! Where did this man come from?! He is unreal sometimes.

Being unable to serve the people you love the way that you want is difficult. Trying to find ways to show your love and appreciation is important. Even if it can just be kind words that day. Sometimes I do feel like a waste of space. Like I might one day melt into my couch never to be found again. And that that might not be the worst thing in the world. But I have to snap myself out of that train of thought. I have to tell myself that I am doing what I can with what I have. My dad is always good for “pearls of wisdom” as we like to call them in my family. He sent an email to the family a few months ago, and in it gave the answer to all of these questions of self-doubt and feelings of unworthiness: “please just push forward every day, doing the best you can with the energy you have, and, in the end, all things will work out”. That is all anyone can do. Push forward with the energy that you have. I do not have a lot of energy, and if I start comparing myself to others or to the fictional version of myself that never got sick, I will be miserable. But I can ask myself: am I doing what I can with what I have? Everyone has their trials. Some are brought on by physical health, mental health, the choices of others, or even the choices of themselves. I will say it again both for myself and for anyone reading this: Do what you can with what you have. That is all we can ask of ourselves.