2005 I was riding my bike every afternoon. Taking the same turns I always do, I like predictability. I dealt with very intense days, like most people do. I worked with people to help them improve their parenting skills. As part of a team assigned to decide whether a parent received their custody rights returned, it could be difficult. At other times it was tremendously rewarding. So, to come home, change, and hop on my bike, was my time to decompress. I rode for a half hour or so and came back home. I visited with my son, who I enjoy immensely. He just graduated from high school. My goal was to ensure that he could cook, at least a little bit, so that he did not choose fast foods every day while in college. I felt the time I had with him slipping away faster and faster like that fun house wheel one sat on until you swung off-totally out of control. These little lessons that I had to talk him into were a great excuse to be just the two of us, like we had often been while he grew up.

The next morning, I woke with extreme burning and numbness in my feet. I thought I just slept pinching them both somehow. It went away soon enough and it left my mind just as quickly. That same sensatioon showed up in the evening eventually robbing me of my sleep.

My favorite Uncle asked if we could go to California and pay him a visit. He was in his late 80's and I never wanted to miss a chance to see him. Planning the trip, getting my husband's and my own vacation time coordinated took up any other issues in my head and spare time. I tripped leaving for work that day, tore my panty hose and bloodied both knees. I dusted myself off, and found I struggled to right myself. I put that off to general rushing about, looked around to see if anyone in the neighborhood had video taped that blooper, changed my clothes and arrived late to a meeting.

The next night the pain/numbness/tingling sensation came and never left. It got progressively worse. Now it is 2021! I am unable to walk for more than 10-20 minuets at a time. I still have my lovely bike as I cannot come to donating it. I hope I will be the miracle patient that has had my balance, pain, and numbness cured somehow. So that I could ride again. I am not being sarcastic so please don't take offense. I truly hope for that miracle.

I have had two pain pump implant surgeries. My lovely son paid for me to receive acupuncture treatments. I did them for 2 years. I now sleep with a C-Pap full face mask because I stop breathing for way too long, at night. I still fall on occasion, so I use a cane when going on my short walks, but due to dry mouth,( side effect from medication) I must bring a drink on those little walks. I still struggle with balance issues. I am sure the neighbors think I drink, something stronger than soda!.

I had to have emergency eye surgery to fix a dislocation that a seizure fall caused. I had two large seizures when I was in the 8th grade. I was treated for epilepsy for 4 years and only had some insignificant, very small seizures until I started the neuropathy roller coaster, like a bad version of batman, WHAM seizures started up only much worse this time around. I now have only a I.D.-no driving for me, understandably. My husband is the one who suffers the most, I think. He has taken over most of the chores, as I am just too weak or tired. He does so without any complaint, but the look of deep sadness is on his face as soon as he sees me when he arrives home, it is brutal.

My dream job went to part-time, then 15 hours a week, then gone. Instead of interesting, challenging conversations with colleagues; I have in depth discussions with my dog about which type of treat he would like at the time. I am on a medication regime that I manage with my wonderful husbands help. Did I mention, I no longer drive.

When my brother was in a coma after being hit by a drunk driver, one of the nurses said," it has to be looked at as before the accident and after the accident. All progress must be put into that perspective". So, I try to look that way at my life, before and after. I try to contribute in our life with good conversations, occasional cooking/cleaning up. My brother made mostly a full recovery. Emotionally, his fiancé was killed, so his life was very difficult for a long time. After many years, he met his new wife and started life anew.

My son comes by when he can. I think it is mostly to help my husband cope. They go fishing so they can get away from me and my diseases. I do not take that personally. I wish I could climb right out of this body and get the h/@** away from it too. My husband tends to fuss around me like a Grandmother might do. So, the face mask, the lovely dry, splitting skin that I must bandage each night all tend to put the brakes on my "come hither look". That part of our life must take more creativity than previously. I will leave that there.

Oh, some friends slowly stopped coming by. However, I remain connected with a couple of great women and they are a respite for me. Though at times, they talk about the life I lost and their stories of how things are for them. They do not know how my heart feels thin, like fragile pieces of glass that stab me as I smile listening to them plan for their retirement parties.

Thanks for giving me the chance to write honestly about this awful disease.

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