My name is Vicki, and I have bilateral progressive peripheral neuropathy. I have had this condition for over 15 years, and I am ok with it!
In the Beginning
My journey started in my mid 40s when I noticed numbness in my right calf. It was not something that I really was concerned about; it did not hurt or cause any disturbance in my walking, that I noticed, so I went on living like usual. Then I noticed that I kept tripping over things that were not there. My foot would not lift like it was supposed to. Drop foot! What in the world was that? Oh well, I went on my merry way.
A few years went by and I got out of my vehicle one day and rolled my ankle. I knew right away that I had injured it, but my fellow buddy told me to walk it off! I did that for one year and eventually had to see an orthopedic surgeon to repair the damage I had caused.
This surgery woke the monster that was sleeping in my body. Within days, my toes started to hurt. I thought my cast was too tight. I blamed the pain on the surgery. After 12 weeks in casts and braces, I finally went to physical therapy where it only got worse. My right foot was sensitive to hot and cold water. They both felt the same. I had burning and crushing pain in my foot. Electrical shocks shot down through my foot into my toes. My therapists were a little confused.
I was sent in for an EMG and the results came back positive for PN in both of my feet and legs. I was told that the reason I was symptomatic in only one side at this time was that traumatic injuries can bring out symptoms.
Ok, now what do I do?
In seven years, I have been on Gabapentin and Lyrica, both great, but I am finding out that I am extremely sensitive to them and the side effects are worse than the condition. At this point, I have decided not to look for the easy way out. I have good days and bad days. Why? What is the difference? I go on a self-discovery. I am alone in the journey. I do not know anyone with this condition, or even know what it really is. I start researching neuropathy. What makes it worse? Inflammation! Idleness! How do I manage the pain then? Diet! Exercise! Most importantly, I must get my mind in a healthy place.
Starting with ME!
My mind is the first place I start. I am useful! I am productive! I am not a burden! I started doing a gratitude journal every morning to start my day. I listed five things that I was grateful for each day. It gives me a positive perspective of my world each morning. I found a support group online. I was recruited to come over to Peripheral Neuropathy Success Stories in Feb of 2020. Here I found a home. I found answers to many of my questions, and I found a community of great people! I was soon made a moderator. I have found a great passion in this group and love helping my fellow warriors. This has helped me get my mind in an extremely healthy place of acceptance and that acceptance is the first step in making my life easier to live and manage my symptoms.
Diet and Exercise do help
I went further and found that if I changed my diet and got rid of the sugar, processed foods, white flour, white rice, I felt better. I cut down on gluten, but not completely out. I do eat bread sparely, but not white bread. I eat plenty of vegetables and berries, small amounts of meat (with dinner) and beans, whole and ancient grains. I feel so much better and know that this is helping. If I do eat sugar, I have a flare-up.
I try to keep moving. Use it or lose it! I have noticed if I do not wiggle my toes, they stop moving or stiffen. Move those little piggies. Move that ankle joint. Keep those muscles toned. You don’t have to climb a mountain, just keep moving. I do foot pumps to help keep my feet warm. Exercise if vital for everyone, but when pain sets in, we do not want to move, and I believe that is the most important time for me to move. So I try to push through and do what I can. I usually feel better afterward.
It’s not what I lost, but what I have GAINED!
Lastly, I cannot look back on my life and see what I have lost. I have to push forward. In just living, we give up things due to age or ailments. Neuropathy only robs us if we let it.
I rode a Harley motorcycle for years. My husband had one and I had my own. We loved riding through the countryside, feeling the warm breeze. Because of the numbness on the bottom of my feet and the drop foot, I had to stop riding five years ago. My husband and I discussed it, and we decided to sell the Harleys. We purchased a trailer, and now we camp. Life is about living, not deprivation. I make it a point, if I give up something, I replace it with something else I love equally. For instance, I love to hike in the mountains, but it is difficult for me now due to the terrain. Now I hike in the lowlands in the forest where it is flat and equally beautiful. I can still do things.
I have been working with our Peripheral Neuropathy Success Stories in a wonderful program called “Buddy Up.” It is a one-on-one mentoring program that pairs a trained “Buddy” with a member who is struggling and needs advice or just to talk it out with someone who understands. Our “Buddies” all have neuropathy and have understanding, empathy, and compassion. I feel so privileged to have been asked to lead this initiative. I have worked with numerous members and feel so fulfilled when they realize results from sessions. This is all part of moving forward with neuropathy.
If I could give any special advice to someone reading this, I would tell them:
- Communicate with your doctor, communities are not the place to ask medical questions, but they are a great place to get information on what people are doing to get relief
- Do what you have to do to keep positive. A negative mind brings stress, stress brings tension, and tension brings pain. Do a gratitude journal!
- Watch what you eat, keep a journal, notice the effects of sugar and other foods on your body. Do certain foods cause flare ups?
- Replace any activity you have given up with a new activity. Do not deprive yourself! Stay busy! Distraction is our friend!
- If you are feeling down, reach out for help!
Neuropathy is not the end, it is just the beginning of a new journey! I am enjoying this journey and like so many I have been on before, I will see this one to fulfillment!