Friedreich’s ataxia has numerous levels of frustration that can sometimes be maddening.
The fact you have to depend on someone else to live your life definitely causes tension and can be debilitating in itself. You never feel refreshed after a decent night’s sleep, which affects the amount of effort you can give during the day.
Simply put: FA is one of the most frustrating elements of life and it only gets harder as it progresses. It’s annoying and every little thing takes a lot of time and effort.
One of the best methods to deal with FA is to have patience. Patience isn’t something taught and learned in a single day and you can’t just snap your fingers to develop it. As a patient with any type of illness, patience includes the element of forgiveness. When you make a plate of food in the kitchen and end up dropping the entire thing in transit to the table or when your knees give out suddenly and cause you to fall in the middle of the grocery store, it seems like being able to move past the incident is almost impossible. That’s when having patience becomes a necessity.
Sometimes patients don’t realize how much harder they have to try — for everything. Often, comparisons to the average person lead to feelings of disappointment, which can be incredibly disheartening.
You have to understand the magnitude of what you’re facing. You have a progressive illness which affects your entire body. No matter the stage of progression, you can only do what you can.
There are many physical restrictions for FA patients, which is why it’s so important to be patient with the process.
It’s definitely easier said than done, like most lessons in life. Try to make it a habit of thinking, “OK, this is completely out of my control and I tried my best.” Patience and self-forgiveness are lessons learned over time. As long as you can make small mental changes and remain open to figuring out that process, it will eventually become second nature to you. Remember: you’re not the average person and you deserve the ability to mess up and move on.
Friedreich’s Ataxia 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 another 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.