Sasha Exeter shares insights on managing FSGS and fibromyalgia holistically, prioritizing mental well-being, and advocating for comprehensive health strategies.
How do you balance managing chronic illnesses like Focal Segmental Glomerulosclerosis (FSGS) and Fibromyalgia alongside your busy schedule of professional and parenting responsibilities?
There has been a lot of trial and error over the years, but I think what’s helped me manage my chronic illnesses is looking at things holistically. I understand the importance of movement and exercise, eating the right food, sleep and finding ways to lower my stress levels; especially when dealing with autoimmune issues that cause chronic pain. To stay on track, I ensure that my workouts are treated like meetings and are entered into my calendar, so I don’t miss them. I track my food intake, so it’s easier to identify what may have caused a flare-up and what I should remove during a reset period when I want to bring down inflammation. I will be honest, sleep isn’t the easiest thing to control with so much work travel, but when I am home my bedtime routine timing is aligned with my 6-year-old. Sleep is when our body heals and regenerates, so it’s critical when dealing with chronic illness. I try to avoid screen time within 30 minutes of bedtime to ensure that I get restful sleep.
How do you prioritize your mental well-being while navigating the challenges of living with chronic conditions? Are there any coping mechanisms or self-care practices that you find particularly helpful?
Mental and physical health are so connected, so you can’t take care of one without the other. Shortly after I was diagnosed with fibromyalgia, I spent a lot of time doing CBT (cognitive behavioural therapy) and mindfulness courses in the hospital and during therapy sessions to help teach me the skills to mentally navigate the mental health issues that came as a result of the decline in my physical health. I still have to employ those tactics quite often. Long walks outdoors, even during the Winter months, are part of my self-care routine. I know it sounds more like a physical thing, but the fresh air, deep breathing techniques I use and being able to clear my mind acts a bit like active meditation and does wonders. When I lean into self-care practice, I notice a positive shift with my mental health and that helps with my physical health.
What key messages or initiatives do you want to educate others about regarding living with chronic conditions like FSGS and Fibromyalgia?
The biggest takeaway I would love to emphasize with those living with chronic conditions is to look at health with a 360-degree perspective and to not rely on just one thing, like medication, to help deal with symptoms. Being active and prioritizing movement, even if it’s just daily walks, as well as taking supplements, getting adequate water intake, eating a well-balanced and clean diet that is easy for your body to digest and process, having a self-care routine that includes ways to improve mental health and getting sleep are so incredibly important, especially when undergoing prolonged medical treatment for your conditions.
