I can so relate to this. I have to think about every step I take and rest after every chore - it’s exhausting. I feel shame and MS is just part of the genetic lottery. Why do we feel shame when there was nothing that we did to cause our health issues?
It’s so true. I always say “I would hop on one foot to fix this”. If someone said “Would you tattoo half your body like machine gun Kelly to have just ONE of your chronic pains go away”? (For me it’d be my jacked up spine nerve), I’d say yes without blinking. That’s INSANE. Someone else would read that and think “what?!??” And that… that is the difference between those that are healthy with sometimes-sickness and those that are in deep and not sure they’ll ever be given a way out. That this may be it. This IS life and how it looks. And how do we make that life worthy when with every small step the world seems to go “that’s a step?! That’s half the step of everyone else around you. Why are you even stepping at all?”
Yes! For sure! I would tattoo half of my body to feel “normal”. It is something that people just don’t understand unless they experience it. You say things so beautifully and put into words the way they I feel. I say to myself all of the time, “that’s a step?”.
I’m glad your write about it…. You write much truth. I rarely go to the emergency room for my version of normal just my abnormal…. And I remember one day hearing a young adults (mid 20’s maybe) SCREAMING In pain with a dislocated shoulder and I thought, “oh that’s how normal people react!” I can’t do that! I don’t have the energy and I don’t have the brain power to respond like that to severe pain. I have other things I WANT to do. That isn’t belittling others in any way, and I haven’t miraculously “overcome” my pain…I just don’t have that luxury and I feel guilty when I even shed some tears at all! I appreciate you writing because I’m less alone. It doesn’t stop the pain for either of us, it doesn’t make us somehow better than or anything else…. But we’re less alone knowing we’re not the only ones struggling and desiring a better life than what we were dealt. Thanks for your vulnerability. (And I think others want to think we’re “better” than we are because otherwise they have to start to face their own fears of illness, suffering and mortality…) xo
Thank you for writing this. This helps me feel so much less alone too (needed) and you're so right on realizing how our reactions might not be normal but we also might not have it in us to show pain in the way that's expected. Sometimes "getting zen" and holding still feels safer in every way
No shame ever Bailey, there's no reason you should ever even think that! Remember, "those that matter don't mind, and those that mind don't matter". Those that know you as well as I do, would never even think of shame and you in the same sentence. You are a magnificent teacher, a beacon of light and love in an otherwise ugly world. Jesus is the light of the world, and a lamp to our feet. His light shines brightly in you dear one. 🥰
I can so relate to this. I have to think about every step I take and rest after every chore - it’s exhausting. I feel shame and MS is just part of the genetic lottery. Why do we feel shame when there was nothing that we did to cause our health issues?
It’s so true. I always say “I would hop on one foot to fix this”. If someone said “Would you tattoo half your body like machine gun Kelly to have just ONE of your chronic pains go away”? (For me it’d be my jacked up spine nerve), I’d say yes without blinking. That’s INSANE. Someone else would read that and think “what?!??” And that… that is the difference between those that are healthy with sometimes-sickness and those that are in deep and not sure they’ll ever be given a way out. That this may be it. This IS life and how it looks. And how do we make that life worthy when with every small step the world seems to go “that’s a step?! That’s half the step of everyone else around you. Why are you even stepping at all?”
Yes! For sure! I would tattoo half of my body to feel “normal”. It is something that people just don’t understand unless they experience it. You say things so beautifully and put into words the way they I feel. I say to myself all of the time, “that’s a step?”.
I’m glad your write about it…. You write much truth. I rarely go to the emergency room for my version of normal just my abnormal…. And I remember one day hearing a young adults (mid 20’s maybe) SCREAMING In pain with a dislocated shoulder and I thought, “oh that’s how normal people react!” I can’t do that! I don’t have the energy and I don’t have the brain power to respond like that to severe pain. I have other things I WANT to do. That isn’t belittling others in any way, and I haven’t miraculously “overcome” my pain…I just don’t have that luxury and I feel guilty when I even shed some tears at all! I appreciate you writing because I’m less alone. It doesn’t stop the pain for either of us, it doesn’t make us somehow better than or anything else…. But we’re less alone knowing we’re not the only ones struggling and desiring a better life than what we were dealt. Thanks for your vulnerability. (And I think others want to think we’re “better” than we are because otherwise they have to start to face their own fears of illness, suffering and mortality…) xo
Thank you for writing this. This helps me feel so much less alone too (needed) and you're so right on realizing how our reactions might not be normal but we also might not have it in us to show pain in the way that's expected. Sometimes "getting zen" and holding still feels safer in every way
No shame ever Bailey, there's no reason you should ever even think that! Remember, "those that matter don't mind, and those that mind don't matter". Those that know you as well as I do, would never even think of shame and you in the same sentence. You are a magnificent teacher, a beacon of light and love in an otherwise ugly world. Jesus is the light of the world, and a lamp to our feet. His light shines brightly in you dear one. 🥰