Life Life Rare

Hello, I'm Stephen Smith and today we're going to talk about when you're too tired to swing, when there's just not enough fight to get off the mat. Living with a rare disease is often challenging. Sometimes it can be downright exhausting. You know the feeling. You've hit the mat so many times you don't have the strength to lift your shoulder, to pull yourself back up by the ropes, or to take another swing at your adversary. All you want to do is lie there until the room stops spinning and the pounding in your head subsides.

But you can't. There's too much at stake. Too many people are depending on you, and deep inside you wonder whether you'll be able to get up at all if you stay down too long.

How do you cope? For starters, remind yourself that this is a long match. The round you're in at the moment will eventually end. You'll hear the bell and retreat to the corner.

And once you're there, allow your support system to help you prepare for the next round. Let them give you encouragement. Medical care. Strategy adjustments. Be it friends or family or your online community, make sure you have the right people in your corner.

When a new round begins and one always does, you have to put the previous rounds behind you. Focusing on what you didn't do right before only distracts you from the fight ahead.

Some of you listening to this podcast today have been in the ring for decades. My match with a rare disease, myasthenia gravis, started nine years ago. There have been times I thought I was down for the count, and other times when I've prematurely raised my gloves in the victory that I only thought was mine. There's always a surprise. An uppercut you didn't see coming. A quick jab before you smack into the mat. Down again. But not for the count. Close, perhaps, but not for the full count.

Today you may feel like you're too tired to swing. You may be counting to ten in your mind as you tell yourself, "I just can't go another round."

But you can. Take some deep breaths. Listen for that bell that sends you back to your corner. Regroup. Focus on the challenges ahead and how you plan to attack them. And never forget that there's a crowd of fans surrounding the ring. We're cheering you on. Listen to our voices. Hear our words of encouragement. Working together, we can all stay in the fight. Visit liveliferare.com to subscribe to the companion newsletter to this podcast. And leave comments and start a conversation there.

And thank you for visiting and listening, and keep walking with us on this journey as we all discover and pursue what a rare life means to each of us.

What is Life Life Rare?

Are you facing trials? Are physical and mental challenges weighing you down on our journey? Through his experiences with the rare disease myasthenia gravis, host Stephen V. Smith shares encouragement and inspiration as he seeks to create a life of meaning and connection. "Live Life Rare" is the companion podcast to the newsletter of the same name, which can be found at liveliferare.com. Join in the conversation as Stephen helps us discover and pursue what a rare life means to each of us.

Hello, I'm Stephen Smith and today we're going to talk about when you're too tired to swing, when there's just not enough fight to get off the mat. Living with a rare disease is often challenging. Sometimes it can be downright exhausting. You know the feeling. You've hit the mat so many times you don't have the strength to lift your shoulder, to pull yourself back up by the ropes, or to take another swing at your adversary. All you want to do is lie there until the room stops spinning and the pounding in your head subsides.

But you can't. There's too much at stake. Too many people are depending on you, and deep inside you wonder whether you'll be able to get up at all if you stay down too long.

How do you cope? For starters, remind yourself that this is a long match. The round you're in at the moment will eventually end. You'll hear the bell and retreat to the corner.

And once you're there, allow your support system to help you prepare for the next round. Let them give you encouragement. Medical care. Strategy adjustments. Be it friends or family or your online community, make sure you have the right people in your corner.

When a new round begins and one always does, you have to put the previous rounds behind you. Focusing on what you didn't do right before only distracts you from the fight ahead.

Some of you listening to this podcast today have been in the ring for decades. My match with a rare disease, myasthenia gravis, started nine years ago. There have been times I thought I was down for the count, and other times when I've prematurely raised my gloves in the victory that I only thought was mine. There's always a surprise. An uppercut you didn't see coming. A quick jab before you smack into the mat. Down again. But not for the count. Close, perhaps, but not for the full count.

Today you may feel like you're too tired to swing. You may be counting to ten in your mind as you tell yourself, "I just can't go another round."

But you can. Take some deep breaths. Listen for that bell that sends you back to your corner. Regroup. Focus on the challenges ahead and how you plan to attack them. And never forget that there's a crowd of fans surrounding the ring. We're cheering you on. Listen to our voices. Hear our words of encouragement. Working together, we can all stay in the fight. Visit liveliferare.com to subscribe to the companion newsletter to this podcast. And leave comments and start a conversation there.

And thank you for visiting and listening, and keep walking with us on this journey as we all discover and pursue what a rare life means to each of us.