Response to “The Big Question” Originally Written by belowtheradar002

Please go check out the original post! It’s amazing

As I read your latest blog post this morning while waiting for my high school bus, I was close to tears. The repeated question”How do we do this? How do you live” is something almost all chronically ill people can relate too. The thought of living the rest of your life in a state of Ill health is daunting as is, but then having to fight for your rights as a patient, a human being, along with trying to retain your health is a massive juggling act that absolutely no one deserves.

I have a similar answer to you K, to this ever daunting question. While I was seeing a neurologist way back in 2008, she didn’t believe in the scale of my pain, so time and time again she refused any type of treatment and just told me “You could be like this the rest of your life, you need to learn how to deal with it.

As you can imagine, when she told me that I was not a happy camper, but I have found out that, her making that statement has forever changed my life. I know that I have No other option other than to go on with my life, with the occasional down days..

But I’m not perfect, I often loose sight of the goal and I lay in bed for days on end, and I let my pain take over.. But having the support from my family, friends and online community can always give me the boost to get back on the wagon!

Again, please check out their original post!

4 thoughts on “Response to “The Big Question” Originally Written by belowtheradar002

  1. I just wanted you to know I was truly touched by this post, by your joining our conversation and our family. know you’ll always have support on your journey. xo, A

    • Thank you so much. I read your blog every day and I look forward to it. It makes it all worth it when you know someone has been touched by your writing, and you know you have a wonderful community and family who supports you,

      Much love and spoons


  2. There’s so much truth to this! It’s such an overwhelming question when it gets asked, especially when you’re still struggling!!

    I understand the doctor perspective, too. I was recently just told “we have no other options for you, good luck with your symptom management” and written off. It’s absurd that not even medical professionals who can see our pain and discomfort can provide us with any comfort.

    Love and spoons to you dear as we walk this journey together.

    • It’s so difficult to try to face your life once you’ve heard those words.. It’s unbearable to think that some people hear that the first time they walk through the door at their very first appointment..

      Much love and spoons

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