When you live each day unsure if it will be your last. If you fear that the next time you walk outside and look up at the sky to feel the sun’s warmth on your face, it’s the final time you will do so unaided. Or if you don’t know whether you’ll be able to enjoy dessert tonight. Then you need to grab every opportunity that comes your way.
When you are having a good day, go outside and laugh. Be with people who make you happy and allow yourself to try something new. Sit on the grass, let a butterfly land on your hand, and breathe. Each day brings many good things, and sometimes it takes being confined to a hospital bed surrounded by beeps and nurses rushing past to remind you of the blessings of “normality.”
Hospitals can suck your emotions and leave you feeling drained. The stark white walls and clinical smells can be overwhelming. When all you do is lie in bed, watch the same small screen, and miss your family, you can be tempted to sleep the time away. While sleep helps with the process of healing, you also need to sit outside and breathe in fresh air (if possible).
Following a couple of years of monthly hospital admissions, I was overwhelmed by the reality of my chronic illness. So, I decided to take a step back to look at what’s important in my life. Is going out dancing more important than relaxing with friends? Is having a sleep now worth the payoff of being able to visit family later? Is sitting outside with my dogs more important than sitting in front of Netflix? Is taking more vitamin tablets more difficult than getting nutrients naturally from being outdoors? Is paddling my feet in the pool better than blobbing on the couch? Each person is different, and different “treatments” work for different people, so I cannot give specific advice. But I have made life changes to make my heart happy once more.
The work that I do is a heart job. I’m proud to take care of rare disease patients. Other rare warriors inspire me, and I learn from them while providing support where possible. I realize that these things are important. My priorities are my friends, my family, and my fur children. Live your best life. Be kind. And never ever give up.
You are so loved.
Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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