Surviving with Neuropathy

This post is a very personal account of what it's like for many people living with neuropathy (see link below). As you will read, the writer takes obvious strength from his faith but not everybody will feel the same way. There is also absolutely no reason to connect him with HIV in any way but his story will strike a chord with all neuropathy sufferers. In a way, it doesn't matter where you get the strength to deal with it, as long as you do. What this man describes is almost a universal story and for that reason, it is well worth sharing here. The book he refers too is also reviewed elsewhere in the blog('Neuropathy Book Reviews' click on the link in the list to the right)

Surviving With Neuropathy
By D.Stewart | August 2011

My neuropathy (nerve damage) symptoms have been horrible lately. I have stenosis (narrowing of the spinal cord pathway) and radiculopathy (symptoms in the arms and legs). If you have neuropathy you are not alone. It changes your life adversely. I have been surviving with neuropathy since March of 2004.

I recently ordered two books to help me cope with the burning, tingling, puffy feeling in my arms, stabbing pain radiating into my arms and legs intermittently, and chronic toothache pain and tension in my neck. Doing anything causes pain in my fingers and toes. I've been switching fingers lately as I type because of the sharp pain in my fingers. I'm thankful that I am functional, but am having difficulty adjusting to all this. Only God knows the affliction that I feel inside my body.

One of the books that I ordered is PERIPHERAL NEUROPATHY: When the Numbness, Weakness, and Pain Won't Stop by Norman Latov, MD, PhD, who shares his own medical afflictions (neuropathy) with others to encourage them. Dr. Latov states on pages 103-104..

Functioning day to day is not easy. Living with neuropathy teaches you very quickly that you cannot take anything for granted. Just a few years ago, if someone had told me that walking up a flight of stairs could be agonizing and make me feel like I'd just climbed Mount Everest, I wouldn't have believed them. Let me tell you: I believe them now.

From the outside, you could never know anything is wrong. In fact, someone recently said how lucky I was that no one can tell I have this disease. Actually, it's a double-edge sword. I don't want people to think something is wrong with me. On the other hand, I often feel like I'm suffering in silence because no one understands what I'm living with. I try very hard to hide what I'm going through. ...

When you are diagnosed with peripheral neuropathy, you constantly are confronted with what life was like “before” and “after.” “Before” meant living without having to think about every little thing you do. It meant walking down stairs without having your heart skip a beat as you fear you may tumble down instead of walk down. “Before” meant taking a step without having to take a step.

“After” means thinking before doing. When you wake up in the morning, you get out of bed, remembering to be careful not to lose your balance.

SOURCE: PERIPHERAL NEUROPATHY: When the Numbness, Weakness, and Pain Won't Stop; by Norman Latov, MD, PhD; pages 103-104; ISBN-13:978-1-932603-59-0

That is exactly what I have been diagnosed with (peripheral neuropathy) and am going through. I have also been diagnosed with stenosis (narrowing of the spinal cord pathway and radiculopathy (tingling, burning, weakness, and pain radiating in the arms and legs). I read this passage and wanted to cry because that is exactly how I feel. I feel alone when I'm around people because they don't know the raging storm inside of my body... burning, tingling and pain in my arms and legs, arms that feel twice their normal size, my neck feeling like a bomb ready to blow, and neck pain like a toothache that radiates into my gums and facial area. The pain in my neck as I type is awful. It's a miserable way to exist. It seems like only a dream when I think back to a time in my life when I was pain free and happy. I am in God's hands. James 5:13, “Is any among you afflicted? let him pray.”

Until a person is afflicted with endless pain, they naturally can't relate to such suffering and can't possibly understand. They just can't. I know what's it's like to be outside on a beautiful day with the sun shining, and everybody is enjoying life and having a good time; but physical suffering within my body is afflicting me and it overshadows me. I look fine, but my whole body is crying out in affliction. I fight it and try to live anyway, but it catches up with me and oftentimes I feel overwhelmed in public with burning, tingling, fatigue, weakness and pain. I try to live a normal life, but it is difficult.

Philippians 2:13, “For it is God which worketh in you both to will and to do of his good pleasure.” That is why this website is here, i.e., because God has done a work in my heart to will and to do of His good pleasure. Amen and amen!

I ask for your earnest prayers for this ministry and me daily. The sharp pain radiating into my arms and legs is getting worse lately. I hope it doesn't continue to worsen. I can do things, it is just painful. For the first time lately, I've had to completely stop what I'm doing because the sharp pain in my fingers and toes is so excruciating painful. The more I do, the more they hurt. Still, I can't stop surviving and I have to fight these afflictions in my body. I'm in so much pain. I know that there are others out there suffering in pain and affliction. You're not alone my friend, you have my heart.

http://www.jesus-is-savior.com/Health_Concerns/surviving_with_neuropathy.htm