There has been a lot of hard on this road. The road has been long and twisted and full of unexpected ups and downs.
For almost three years I have been dealing with autoimmune disease. For nearly two years I have had a name for it. Psoriatic Arthritis.
In the months leading up to my diagnosis I dealt with the worst physical pain of my life. I hurt every day. Not knowing what was causing the pain… not knowing how to make it stop was a terrible and confusing. Physically, mentally and emotionally I was at an all time low. Physically, it was hard getting up every day; parts of my body hurt so badly. It was harder trying to act like everything was okay.
After receiving my diagnosis was hard. I was grateful to attach a name to what I was experiencing. I was glad too know I wasn’t crazy. It was good to know I had an avenue towards getting better. But being diagnosed with an autoimmune disease is life altering in every sense. It is hard hearing, There is no cure. You will have this disease for the rest of your life. It is hard knowing that now and forever more I am different, altered, damaged. That’s how it felt in the beginning.
Minor medical intervention (steroid shots in my inflamed foot, steroid drops for my inflamed eye and a short term course of oral steroids) helped me get close to my previous normal. But there was a decision to be made about stronger, potentially harsher medications. I did the research and stressed over the possibility of being attached to medication for the rest of my life. Rather than go on medication that had potentially harmful side effects, I chose to alter my lifestyle. Dietary changes (going gluten free, dairy free and eating Paleo) reduced the inflammation and got me the rest of the way better. Learning to eat in a new way was hard. Imagine eating anything you wanted for 36 years and then having to eliminate the one thing that is in just about every single thing you eat. Easy peasy, right?
Over the course of the next two years more minor flares occurred. Last month I experienced my worst flare since 2017. The usual medicine helped, but it was no longer enough. I was told by multiple doctors and specialists it was probably time to explore those harsher and scary to me medications. It was hard to accept the fact that everything I had done had not worked out the way I thought it would. Even with the knowledge that I needed to take this next step, I anguished for two days before finally taking a deep breath, gulping down a glass of water and swallowing four tiny pills that scared the shit out of me.
It has been gut wrenching watching my husband and boys forced to be a part of this journey. My husband has been incredibly supportive, loving and safe place to land. But I see how it effects him. The stress placed on him seeing me in pain and unable fix it for me. Him, only wanting me to be and feel better. The times where we both secretly wondered if better was possible. I haven’t been able to participate in our lives the way I had before. Learning to hack family life in a new and different way was hard. My boys are young enough that they don’t know any better. But not being able to play with them they way I want to…. Trying to explain why I can’t take a bite of the treat they are trying to share…. Receiving kisses on my flaring foot because “now all better, Mommy?” that is when it hits hardest.
There has been a lot of hard, but the hardest part of all of this has been letting go. Letting go of the body I once had. Letting go of the ideas I held for my future. Letting go of the life I had become comfortably accustom to. Letting go of how things should be. There are no shoulds now. There is only what is.
I had to let go of the need to know. When will I be better? Will I get better? My whole life I was a planner. In everything, I always needed to know the likely outcome before forging ahead. My stepping forward was reliant on the plausibility of my success. I had to know I would do well. Now, I have no idea how this is going to pan out. There is no way to know. Autoimmune disease has no rhyme or reason. There is no predicting. There is no certainty.
I had to let go of the obsessive need to fix myself as quickly as possible. I would think once I was better, once I was completely healed, that was when I could start living well again. I had to accept that I can only do so much and even with doing everything right, I still may not end up with the outcome I think I should get. Remember, there are no shoulds now.
The hardest part of this journey has also turned out to be the best.
With my day to day health firmly in the unknown, I have had to live each of my days well and to their fullest. Just because I feel good today does not mean tomorrow will be the same. I am learning to live in the present rather than reminiscing in the past or fretting about the future.
The comfort ability of the life I had been living meant I was not taking risks. I was not pushing myself. I was not growing as a person. Having an incurable disease has made me ask myself what do I really want out of life? I am still scared to take chances, but I do so nonetheless. I have stretched and grown more in the last two years than at any point in my adult life. The last five month have felt like a rocket ship! I don’t know if I will be good or successful at any of these new things I am trying, but trying and learning is better than always wondering if I missed out.
Parts of my body are different now, but we all change physically as we get older so clinging to the pipe dream of always appearing as I once had was fruitless.
Stressing over healing was likely a contributor in prolonging my road to wellness. Stress is one of the worst things anyone, but especially those of us with autoimmune disease, can do. Stress kills you from the inside out. It is easier said than done, but learning to ease up on the need to be better now has been worth it’s weight in golden good days.
If I am being honest I am still working on letting go. It is a constant process, but I am getting better. When my thoughts turn toward the negative or I get stuck in a this-sucks-loop, I find that I don’t stay there as long. It is getting easier to pull myself back up. I’m living a robust life again. The vulnerability I feel is no longer shameful. This vulnerability, long ago stuffed into the smallest recess of my heart, has allowed me to feel wholeheartedly once more.
Letting go is the hardest thing I have ever done, but it is the best thing I do every single day.
