My routine over the last few years has stayed fairly consistent no matter what month of the year. It mainly consisted of running from appointment to appointment, test to test, spending more time with my doctors and other medical professional than my friends. Not only did I spend much of my time in the same places doing the same things, I felt basically the same physically too. I was trying so many different treatments in an attempt to help me feel better and to be able to fulfill my energy needs. But this past winter, things started to change. I spent a lot of time in the hospital and eventually was discharged with something that I was terrified of but has helped make such a positive impact in my life.
Coming home on TPN (total parenteral nutrition, a form of nutrition that doesn’t need to go through the digestive tract, it’s instead infused into the vein) required some changes to my routine. Setting it up and running it takes time so there was no way to not change my schedule around it. At first, I was overwhelmed and nervous, it is a risky treatment because of the fact you need to be super sterile, but it has changed my life positively. I’ve had to make compromises and changes for it but meeting my nutritional needs has been huge. Calories are energy and your body needs them to function properly so finally hitting my target has been a game changer.
Having TPN made a big difference in making this summer better but it wasn’t the only difference. It also just so happened that many of my doctors are out on leave so I’ve had a doctor-less summer. You heard that right, no appointments! It was like being in high school again and having a summer break; a few months to just decompress and relax, giving me time to focus on myself and good things rather than always focusing on and being reminded of my physical health.
Without being constantly surrounded by the medical world, I got to enjoy a time of self-discovery. I set my focus on things that I had been wanting to do but hadn’t had the chance. I started by making little changes, trying to journal regularly and re-introducing mindfulness and meditation slowly. I tried to find the happy medium between respecting my body and it’s needs yet pushing myself to take the bull by the horns. I don’t know what made the biggest impact, I think it was the separation from the medical world, but I started to feel myself taking off the “sick girl” hat and putting back on the “Kathleen” hat.
This change has helped me in many ways. I feel more in touch with what I want and who I am. Before TPN, I didn’t have the energy nor did I feel well enough to be myself. When your body seems to be working against you, it puts you in survival mode. It makes it hard to be present when you’re just focusing on making it through the day. The symptoms of my illness also took things away from me. Learning and reading were always one of my favourite things but, because of fatigue, my brain felt like it was always encompassed in fog which, making it hard to focus. My mobility got significantly worse, making it hard to do anything that involved moving. Not being able to eat took away a huge social aspect of life. Those were just some of the big losses.
When you’re powering through on survival mode, you don’t have a chance to do much, including counting your losses and grieving them. This summer also gave me the chance to do that. Going through this process (again… it’s not a one-time thing with chronic illness) also helped me discover further who I am. I may not have regained those things that made me happy in the past but I have accepted the loss of them, making room in my life for doing other things to brighten my days and adapting others to make them accessible to me. I have found new hobbies that I enjoy like going for rolls with my family and spending time outdoors and I have further delved into other hobbies like crocheting and fibre crafts. I no longer see my body or my illness as the enemy. And most of all, I try to live everyday being present, focusing not on the regrets of the past nor the worries of the future, just the opportunities of today.
By all means, this doesn’t mean everyday is perfect. That is far from the truth. But overall, I feel lighter and happier and more present. I’m working hard at redefining my version success, not as having a lot of money or a bustling career, but instead focusing on finding happiness. Going by this definition, this summer has, by far, been the one in which I moved closer to my goal. I am thankful to have had time to allow myself to be me.