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Managing My Anxiety of Possible Retinopathy – Diabetes Daily

I remember feeling anxious. Sitting in the waiting room of the eye doctor in March of 2019, I knew this sensation all too well. It came from my experience of receiving “bad news” one too many times. I was nervous but quietly tried to connect with the inner knowing that I was not the only person who has to go through these types of feelings. With a deep breath in and a long breath out, I thought of my friends within the diabetes community who constantly remind me that I’m never alone.

When you live with diabetes, it often feels like you’re just waiting for that next thing to go wrong. We try to be positive but at the end of the day we’re still human and being scared of the unknown is normal. Even people without diabetes typically know the risks associated with trying to manage blood sugars without a properly functioning pancreas and/or metabolism. Heart disease, nerve damage, kidney failure, and blindness are issues people with diabetes may live in fear of since day one of their diagnosis.

Deep down, I knew something was off. My vision had changed enough that I had a sneaky suspicion this time would bring that moment where I would be told that there were now signs of diabetes in my eyes. And I was right.

The doctor informed me that I had retinal bleeds in both my eyes but that “I didn’t need to worry” and they wouldn’t need to treat it just yet. She even kindly offered to check them again in 6 months time if that might make me feel better. It did… and at the same time, it didn’t. I suddenly felt sick to my stomach. Thoughts of friends who have gone through so much with their eyes raced through my mind. Would I have to experience all of that, too?

Photo credit: Sarah Macleod

I started to cry and felt the same sadness wash over me that I had felt in 2012 after being diagnosed with gastroparesis. The guilt and shame I had been working through for years knocked on the door to my heart but I knew that the only way through this moment was to face this new information with acceptance and an attitude that I wasn’t powerless.

I had been taking a pump break while in yoga teacher training and had decided to continue on injections after I had graduated from the program. However, upon being diagnosed with retinopathy, I made the decision to switch back to my insulin pump once again. Everyone is different, but for me, having an insulin pump is a privilege and asset I couldn’t ignore. I knew that utilizing the technology available to me would be in my best interest.

When it came time for my next appointment, the world had already been impacted by COVID-19 and I wasn’t able to get my eyes checked when I had anticipated. I did my best not to let the fear creep in, but working from home and being on screens more than ever before didn’t do much to quell my anxious mind. Yet I knew I had to keep going.

For months, I tried to find a balance between discipline and letting go of what I simply could not control. I stayed connected with the diabetes community and my peers who understood what it was like to be managing diabetes daily while also navigating additional complications, illnesses, and issues. Utilizing tools like emotional freedom technique, guided meditation, and yoga continued to be a way I could serve myself while remaining focused on the balance I wanted to achieve.

I can’t tell you how many tears I cried. The worry would consume me most when I thought of a potential future pregnancy, breastfeeding, and motherhood. I wanted to see the children of my dreams and soak in every freckle on their face, their tiny fingers, and little toes. I wanted to see my children grow and watch them become who they were meant to be. If I lost my vision, how could any of these dreams come true? I found acceptance in knowing that I was willing to do whatever it took to preserve my vision even if that meant facing treatment options that terrified me.

It took me so long to make that next eye doctor’s appointment. Yet I knew in 2021 I wanted to address any of the issues I had been avoiding because of the fears that still existed within. The night before my appointment, I joined a meditation session with my diabetes friends and appreciated the energy, loving-kindness, and support that our “diabetesangha” was offering to me. It allowed me to relax, be present with how I was feeling, and honor any emotion that was coming to the surface to be acknowledged and released.

Sitting in that chair again, eyes dilated and heart open, I felt hopeful that I may be given the news that nothing had changed and to just keep working towards optimal glycemic control. However, the news I received was even better than I had anticipated. The doctor told me she could no longer see any signs of diabetes in my eyes. The retinal bleeds were gone and I was doing just fine. I was overjoyed and elated at the knowledge that I had reversed my diabetic retinopathy.

Each one of us living with diabetes is different. Despite ardent efforts and steadfast diligence, we don’t always receive positive news or the outcomes we are most hopeful for. Yet it is important to recognize that we must not give up even when we’re given bad news. There are avenues of support as well as resources and recommendations from peers and professionals that can offer us a sense of empowerment. If you are struggling with diabetes complications, remember that you are never alone and that there are people who understand what you’re going through. Don’t lose hope and keep in mind that there are many paths to healing ourselves body, mind, and spirit.

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