Adapting and Thriving
Being diagnosed with Mitochondrial Disease, while it likely has given needed answers, is overwhelming. The uncertainty of how the disease will progress can be paralyzing because the only certainty is that Mitochondrial Disease is unpredictable since it impacts everyone differently-even with the same genetic mutation and even in the same family. Learning different skills and be willing to adapt is crucial.
Patients with “Mito” need to understand how to conserve energy and what can affect the energy in their body. It’s learning to become in tune with the signs and signals the body gives and not ignore them. Pushing past your personal threshold can have potential consequences. Pacing and thinking about the most effective way to complete a task/activity and adapting the task to conserve energy is beneficial. Learning to ask for help if needed is an important tool.
Following a routine helps me plan my potential energy use. (the “spoon theory” is a good explanation for pacing). Pre-planning the day can help but there are external factors that can affect you and derail all good intentions. Allow for things that are completely out of our control – like weather fluctuations/barometer changes or illness etc. Rest when necessary and do not berate yourself or feel like a failure if you must stop and reassess.
You have some control on how to help support your mitochondrial health, for example:
- Fuelling the body properly with Food (what this looks like for one person will differ for another because “Mito” is a metabolic disease).
- Staying hydrated
- Movement/Activity and exercising to personal ability
- Taking your prescription medications/supplements according to the guidelines and not skip doses,
- Avoid toxins that can harm the mitochondria like certain prescription drugs, and external environmental toxins
- Sleep regulation/hygiene is so important to regenerate the body, so rest when you need to and try to maintain a healthy sleep schedule. If you have sleep issues, don’t hesitate to ask for a referral for a sleep study.
- Therapy: Occupational, Physio, Counselling, Massage, Acupuncture etc.
- Use Mobility devices and adaptive tools when needed
- Form a Support Team of family and friends; join Support Groups
- Use a Tracking Journal
Mindset is important for me, making sure I do not have a defeatist attitude and that I am being a willing participant in maintaining good health. I can’t just sit around being complacent waiting for a proper treatment or cure. I need to make sure I keep trying and challenging myself and not compare my accomplishments with anyone else’s. I try to let go of societal expectations; because what others think I should be able to do and what I’m capable of doing may no longer match up.
The quote “Adapt or Perish” is a great reminder of how our ancestors adapted to their surroundings to come up with different skills, technology and thought processes to Thrive. Human beings are resilient, and we can adapt to what life throws at us- so many of the “Mito Warriors” emulate this daily.