I have always been active to manage my Ehlers-Danlos Syndrome (type III) symptoms but it was my diagnosis of Lupus in June 2017 that made me adapt the way I exercised. I started Actively Autoimmune, which is an an online space advocating exercise as a tool to manage invisible illnesses, as I noticed that a lot of the fitness bloggers on social media were targeting healthy people striving for excellence, rather than for those coping with pain, illness and fatigue. I started a social media account to track my progress but also help to spread awareness and encourage others to use exercise as a management tool with their health.
Exercise has so many benefits, both physically and mentally and it has always been a big part of my life, especially now. A lot of my health and symptoms are out of my control, and I am so severely limited in what I can do due to pain and fatigue. Exercise for me is a way to be in control for that 20 minutes, to show what my body can do. Even gentle movement on my mat and stretching makes the biggest difference to how I feel which is why I want to spread awareness that just because you cannot run or do burpees, does not mean you cannot workout at all.
Most people who get a cold, or have pain or fatigue take a rest from exercise. However, those of us with chronic illness would never exercise if we rested with these symptoms. Each day I have joint pain, particularly in my knees, hands and back, I have bladder pain and dysfunction, abdominal pain and nausea. My heart rate is erratic and I have to monitor it throughout. Almost every workout I do I have to adapt whether it is modifying exercises, rest stops during walking or swapping out challenging yoga poses.
Fatigue is the biggest challenge, I only have 2-3 ‘usable’ hours of energy per day which has to fit in work on my online business, medication, eating, self-care, hospital appointments, pharmacy trips…and exercise
My biggest personal achievement was after being in a wheelchair aged 14, I managed to re-learn to walk and then run aged 17. Every time I get on my mat these days it is an achievement as I am choosing to respect and look after my body.
As a physiotherapist & Pilates instructor, I want to combine my experience as a patient, passion for movement and knowledge as a physiotherapist to change this. I started Actively Autoimmune to inspire, to educate and to support the invisible illness community to benefit from exercise and would love to share this message with my home county.