At the early age of 25, I was admitted to the hospital with an insanely high heart rate and a dangerously low blood pressure reading. I was kept under close surveillance in the palliative care unit while doctors and specialists began tests to try and figure out what was wrong.
About three months prior I had noticed myself slipping at work, making silly mistakes and losing track of what I was doing. It was uncharacteristic of me, and a big problem because at the time I was training on a guard mangier position in a high-end restaurant in Toronto. It’s not the sort of place where small mistakes are forgiven: seared scallops go from delicious and buttery to tough and burnt in seconds.
A little while after my focus and memory went I started to experience gastrointestinal issues that a series of drop-in clinic doctors called a stomach bug and sent me home to rest with a prescription for codeine. Eventually the 'stomach bug' gave way to fatigue. The kind of fatigue where I could start my day, have a shower, lift my arm to brush my hair and 10 seconds in, drop to the ground in exhaustion just to crawl to the couch and fall into a deep sleep for a good few hours. Thing was, in between the weird bouts of fatigue I would still feel normal. And not being one to complain I would do what I could with the energetic hours and rest during the tired ones.
Slowly all good hours turned to tired ones and I went home to my parents in Waterloo to rest up and ride out the ‘stomach bug’ doctors were sure I was suffering from. While there, despite my best efforts to eat I started losing weight, and lots of it. Which wasn’t helping my energy levels and my activity dwindled from that of an active, university graduate, career building, passionate 25 year old, sister, daughter, and friend, to making as many loops around the kitchen table a day as I could muster. This carried on, amidst the busy lives of my folks, inwardly scared by what was happening to their youngest daughter and outwardly keeping busy with work and the running of the house and continued doctor visits.
Late one Saturday night I dragged myself to the washroom and slumped over the toilet where I began to throw up over and over again continuing into Sunday morning. Already so depleted, I felt like a ragdoll, shaking with each convulsion, not knowing how I could possibly lose more nourishment or survive the ongoing assault on the body. When my Dad woke around 5 am Sunday morning and found me in the bathroom, flattened, I waved the white flag of surrender and said to him, “I can’t do it anymore… please take me to the hospital”.
So there I was, seconds after the triage nurse checked my vitals, people were running and hooking up machines and IV and racing me down the corridors. My vitals now stabilized but the journey was only just beginning. In the two weeks that followed, various specialists were brought in, blood tests taken, catscans and MRIs performed. I’d like to say I was feeling appreciative and grateful for life, family, and technology, but truth is I felt nothing. That’s what stood out, I was so tired, I just felt empty. Happy to finally shut off while someone else took over.
I did enjoy the company of my room mate, a cranky rough around the edges woman in her 60s just wrought with health issues from a life hard won. My interactions with Roberta showed me I still had a bit of fight left, with our hardy banter, complaints about shitty hospital food and the always active justice piece in me that lectured her doctors about how to best deliver bad news and still be mindful of the heart and spirit of the patient receiving it. Pretty sure that colourful woman received a new death sentence everyday while in hospital care.
I also cherished my early morning visits with my Dad on his way to work. He didn’t always know what to say so we would each pick a goddess card for the day and read it to each other. Do our best to enjoy the present moment, together. No one ever talked about an ending where I didn’t get better but it was hard to deny the possibility given the growing interest in the ‘young thing’ in ward C, sharing space with all the 90 years olds in palliative care to pass over.
The internist would sit with me everyday, intrigued and frustrated by the lack of direction with my treatment plan. Until the day of the breakthrough! The final piece of the puzzle in place, Doc was excited to see me that morning to share the good news, I was diagnosed with Addison’s Disease. Then we went on to talk treatment options, and life options. In the Doctor’s opinion I could read everything I could find on my newly discovered chronic illness and probably be overwhelmed and depressed or I could know what I needed to maintain optimal health and just go about life the same.
Reality has landed me somewhere in the middle. It hasn’t been enough to just maintain and go about life the same, because it isn’t. My normal is not what it was and not like the average person’s. I’ve had to really dial back on what ideas and dreams I had for myself. It pushes a person to get really crystal clear on what matters to them the most. I only have so much energy and so much good health to pore into the people and things I love. There is no acting now and thinking later. If I neglect the needs of my health, the effects are almost immediate. Training for any kind of physical accomplishment, work schedule, trip agenda, must be slow and steady, and often one at a time. Life is simple. But life is good. I have had help from many people along the way and I am so indebted to the constant support and understanding of close friends and family. Somehow I have had the good fortune of amassing the most beautiful, genuine, life-loving group of people and it makes all the difference.
Living with a chronic illness is just that, on-going. It has constant ups and downs and takes a lot of community, healthcare workers, diets, sleep, exercise, tricks, mindfulness practices, mantras, pages of journals, screaming in cars, laughter, and love- especially self-love, to live with it. So if anything I share here can make that same struggle or one like it easier for someone else, that makes me so happy. Welcome to my journal of health. I vow to be as honest and real as I can with my shared experience and I hope the same from you. If you have any questions for me, or content you want, or story you have to share then please write. Really looking forward to connecting with you as I continue along this life of mine.