Toughing it out with Neuropathy

Today's post from aidsmap.com (see link below) is a hard-hitting personal account of an HIV-patient with neuropathy. It's the sort of story that people without neuropathy may need to read but is difficult reading if you're in the same boat. It's just very close to home for many people and while it's perversely comforting to know that someone else is going through the same thing or worse, it's an uncomfortable feeling to be confronted with the 'what might be' scenario. Don't get me wrong, everyone will have the utmost sympathy for this guy and would do anything to help if they could and like in the old cliche, 'can feel his pain' but it does touch a raw nerve. It highlights how important it is for neuropathy patients to find and keep an effective support system - it's not a disease that's easy to bear alone.

Living with Peripheral Neuropathy
by Chip

I didn’t know, at first, why my feet hurt so bad. I would wake up every 90 minutes or so every night.

Because of the ‘way’ they hurt I thought they were just cold. I tried wool socks. Wore wool socks at work. (Came to find out later heat exacerbates the pain.)

Then one day, sitting in a bar reading a gay-rag advertisement for HIV meds, I saw it. PERIPHERAL NEUROPATHY. That had to be it.

Why didn’t my doctor tell me about possible side-effects I should watch for? Is there some medication that could help? Would I always deal with this pain?

My doctor confirmed the diagnosis and said that some patients deal with the pain anywhere from 6 to 18 months. He explained the reason for the way my brain was ‘sensing’ that my feet hurt. He prescribed an antidepressant that works on nerves that may eradicate the pain.

I was so hopeful! How desperately I needed a full night’s sleep! Well, the medication DID help me sleep but the pain persisted.

After two or three medication trials and a pain specialist intervention, as well as about 10 years later… I still suffer the with pain of peripheral neuropathy. Everyone has heard of a cure, something that helps, how I can deal with this pain. I’m beginning to understand now, that I have become a completely different person because of this pain. Consider for yourself the possibility of a headache or toothache for ten long years. At times I joke that the original antidepressant was prescribed to prevent me from going crazy with this pain.

Don’t doubt for a second that I haven’t considered suicide. I’m not going to make this a long philosophical discussion that has become my life (my HIV status is playing second fiddle now). Everyone listens, everyone cares, everyone hopes and prays for me, people love me, and for that I am grateful.

Someone with a physical abnormality has no way to hide so that people won’t look and wonder or show compassion. Maybe that WOULD actually be harder to deal with on a daily basis than to just be in pain with no one noticing. Maybe I’m the cry-baby now, wanting somehow to make people know about my pain. Funny thing is that when the same people who know of my condition ask "how are you doing?" and I answer "okay", I sometimes want to scream “THEY HURT AS BAD AS ALWAYS AND EVEN WORSE TODAY!”

It would be very easy (let me tell you, very VERY easy) to give up. You may want to as well if you are reading this in between medicating yourself, whether physically, mentally or spiritually. I’m still here. I don’t wanna stick around all by myself. Hang in there. Tough it out with me. Rub some dirt in it. We’ll be OK some day. If not in this world, well for sure in the next…

http://www.aidsmap.com/Living-with-peripheral-neuropathy/page/2053217/