More About How It’s Going With My Post-COVID battle
saturday, february 20, 2021…
COVID, or more correctly…Post-COVID Syndrome… is proving to be quite the formidable opponent. I’d like to tell you that I’m just as formidable…but there’s that whole “be real with your readers” thing I’ve committed to. Truth is…I’m feeling anything BUT formidable these days.
And yet… other than NOT formidable…I can’t succinctly explain how I AM feeling.
My breathing is weak and wheezy. My energy is zapped. My concentration is laughable. I’m full-out exhausted. But none of that really captures it. I don’t know how to accurately capture it. Even now…trying to write this out…frustrated tears are falling because none of the words I string together will be sufficient.
I need to figure it out, though. I have a long-awaited appointment with a new primary in early March. But, I can’t exactly expect her to be able to help if I can’t tell her what’s wrong. Right…?!?
can’t find the words…
I’ve been here before. I’ve done this already. Trying to convince people…family, friends, physicians, myself even…that something really is wrong when nothing looks wrong. I look okay…but I’m not okay.
In one of my therapy sessions, my counselor and I talked about the challenges of invisible illnesses. At the moment, I don’t look like I have Parkinson’s Disease. I don’t look like I’m fighting post-COVID. And that’s great! It really is. But…might this all be easier if I did “look the part”? Would there be more understanding and grace from others if they could SEE what was wrong? Would I feel more worthy and deserving of their understanding and grace if I looked sick/injured/unwell…?
As you can tell from the title, I began writing this five days ago. And it’s still not right. It still doesn’t say what I’m trying to say. I considered deleting all of this drivel and simply sharing a link and saying “read this”. But…”be real with your readers”. So, here it is. The unedited, unorganized, messy cluster that is my heart and mind right now.
Thankfully, someone else figured out a way to put all of this into words in a much more cohesive manner than I appear capable of.
Please do me…and yourself…a favor. Click on this link that I’m sharing. It explains what I can’t.
Thank you for your posts, Nikki. You may not have said how you are feeling exactly like you’d like to, but your writings always help me, this one included. Your sharing so honestly helps me understand what my mom is going through in her more advanced stages of PD. She deserves to be understood! I can not tell you how many times she has just said, “I wish I could explain how I really feel…”
Praying for you to recover quickly and fully from the effects of Covid. Please keep writing. You make a difference!
Thank you for such kind words, Heather.
I say an awful lot that “a parkinson’s diagnosis is mean…let’s make it meaningful”.
Thank you for making me feel like I’m accomplishing that by helping you understand your mom a little more.
I appreciate your support and I keep you and your mom in my thoughts and prayers.
-Nikki
When you said ” Would I feel more worthy and deserving… Is something I’ve thought about often. I went from not telling anyone to having to explain my PD. And then feeling like I was using PD as an excuse. I want to be understood. It is so hard to explain what it is like to live with PD.
Beth –
Thank you for taking the time to read and reach out!
Yes…wanting to be understood. Such a challenge from every perspective.
I get it. I hear you and I see you. Please don’t hesitate to email me anytime you need an ear.
-Nikki
Love your honesty and bravery Nikki! I think of you all the time. ❤️😘
You are always so kind and supportive, Gaye!
Thank you for taking the time to read and reach out!
-Nikki