A new acromegaly infographic entitled, “A Day in My Shoes,” was released by Novartis this week. It was developed to help shed light on the impact of the disease on the daily lives of those living with acromegaly
I’ve always considered myself to be following a healthy lifestyle. I love gardening, I watch what I eat, taking brisk walks is my stress antidote, prefer going to the gym when it opens its doors at 05h00 in the morning, practice yoga, and wouldn’t forego an opportunity to participate in active adventurers. But that all changed over the years when my legs couldn’t handle the pressure, or painfully so, when I was diagnosed with #acromegaly in 2016.
For years, I had been experiencing debilitating headaches, poor vision, swelling in my hands and feet, digestive disorders and the worst form of mood disorders. It was only after it was discovered that I’m hosting a tumor that was causing excess growth hormone to be produced by my #pituitarygland that I started connecting the dots, and the dramatic change on my physical appearance and emotional state began to make sense.
I underwent surgery and radiation in 2017, but there was still a significant amount of residual tumor on my pituitary gland, so I began to receive shots and other medication on a daily basis. The surgery also left me with one functioning eye, in addition to it offering me the poorest vision any normal human being would appreciate. Even with treatment, my debilitating headaches returned, inactive thyroid leading to severe bloatedness and constipation, #hypertension, chronic fatigue, dizziness, muscle and joint pain. I quickly learned that these are known as acromegaly-related effects that manifest despite treatment.
As it turned out, the treatment was ineffectively controlling my rocketing GH and IGF-1 levels, tuning my days into a traumatic and depressing routine. Every morning, I am faced with the same painful journey. From the moment I wake up in the morning, I am confronted with aches in every joint and muscle throughout my body, feeling spent, fatigued, and soaking in sweat especially around my neck and shoulders.
Jumping out of bed is a thing of the past, I must brace myself for a new wave of pain because my feet hurt so badly, it usually takes me a minute or two to work through the stiffness and pain to be able to walk. My day starts in throbbing slow motion, it is even difficult to just hop into the bath or shower. Let’s not even go to the shoes, besides the difficulty in finding the right shoesize, it is always painful to put on shoes or to walk the whole day wearing them.
But, one of the biggest challenges I have to deal with in this journey, is explaining to friends and family what I am going through. I feel like I am on a continuous loop of moans and groans so I often fake the reality of my agony. I think it is hard for them to understand and so I speak and act positive even though that does not change what I am experiencing. It feels as if I am persistently disappointing people because their prayers are not effective. I keep a front that still describes my optimistic demeanour and I guard my optimism lest it begins to wear off and discourage those I’ve inspired to never give up in my book and motivational talks. Yet, the truth is, I simply do not have enough energy to go around in pain, depressed and having to explain to people what happened. I am beginning to feel like I am losing my entire sense of self, I do not know who I am anymore and what is my purpose in life. I prefer my private space safe form the demands of interacting with society. I am disheartened, depressed, and lonely. This has taken a huge toll, not just on me and my husband, also in my relationship with my teenage children.
At this point, I am sick and tired of being sick and tired Although discouraged at the moment, I am hopelessly optimistic that there is a solution and I am part of that solution. There has got to be a way, and I am looking forward to engaging with the little energy I have left to get me out of this dark pit. Anguish, disappointment, failures, hurt and pain will always be part of our journey. Therefore, I shall unapologetically pursue what makes me come alive, is healthy for my mind and can bring my soul joy. There is no doubt that I am at the right place to reach out and network with those in need of support and encouragement.