Everything takes longer. Often much longer.
Everything hurts and the tearing pain is a constant reminder of the many changes you're facing. Constantly. Always. Every moment.
You can have neuropathy and still LOOK marvelous! People don't necessarily see that you even have a problem unless you have a walker or cane. And they certainly don't understand what it's like living with CIDP. Or realize that having constant pain makes you tired.
I used to be able to fall asleep the moment I flopped into bed. I was out. Completely. No problems, no issues. In fact, I've earned several Gold Medals in Napping.
Now when I try to sleep I can't quite let go and relax because of the pain surging through my limbs. Squeezing my joints and muscles tight. So I thrash. Shift sheets, pull blankets and flip pillows, trying to get comfortable. I fail. Then I fail again. So tired, but all I can do is squirm and watch the minutes and hours tick by.
Sometime I shut my eyes briefly and then the pain starts eating at my limbs, big painful bites. I have to move, get up, try to get resettled. Again. No wonder I'm so tired.
If you have neuropathy and the stinging, stabbing, numbing, annoying pain constantly tweaking your hands and feet, arms and legs, you know exactly what I mean. Or if you wake up with your legs feeling like concrete blocks you understand the discomfort that comes with this disease.
On a positive front, I met my new neurologist today. He seems great. Very knowledgeable. Caring, kind, a good listener. But even an appointment with my doctor can take a lot out of me. Getting in and out of the car hurts, trekking down long hallways with my faithful walker, pushing open heavy doors which moving my walker, getting up and down from unfamiliar chairs, undergoing tests, answering questions. Always trying to avoid falling.
It's all exhausting.
Let's all hope for a peace and rest tonight. Sleep is such a priceless gift. So is you taking the time to read my Life with Neuropathy articles. Here's to new options, more strength, and greater healing. Cheers. And thanks for listening.
John
P.S. To follow my Life with Neuropathy blog, visit lifewithneuropathy.blogspot.com. Find the three lines next to the search button in the upper right hand corner and click "Follow." You'll be notified of my future blogs. Would love to have you on my core team of readers! If you missed it, please read last month's article about calluses.
P.P.S. For further thoughts visit Let's Talk about Mobility, Let's Talk about Speed, Let's Talk about Changes, or Let's Talk about Giving Thanks. You can also read about Losing Your Doctor, Using a Handicap Placard, Walker Envy, Saying "Owww" when it hurts, dealing with Pain, or the Humor of finding out your personal walker was a star on the TV show Monk! If you have a grab bar try this link. For thoughts on Resolutions try this. Finally, if you ever find yourself dropping things like I do, please feel read this.
P.P.P.S. I still drop stuff each and every day! Sometimes two, three and four things at a time! Or more...
Thanks, Jamie, for the perfect picture. Photo by https://unsplash.com/@jaimestreet.
Thank you for sharing. I live with someone who has neuropathy and doesn't share much but I do observe the struggles. I find your blog helpful for me to understand what my partner may be experiencing.
ReplyDeleteThanks for your thoughtful comment. Neuropathy is a difficult diagnosis and it just helps to have others understand what we're going through...
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