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Hi Jan. One thing in my favor is that my SFN came on slowly, so the changes have occurred gradually. Maybe John can find my Tegretol story for you.
I am a positive person by nature. How could I survive otherwise? Facts: I divorced after 30 years, but my ex-husband still will help me, and I help him. My long-time girlfriends (from church!) are slowly drifting away as I become less able to do the things I they enjoy, such as shopping, gossiping, meeting for long brisk walks. But through careful choice, I am surrounding myself with other friends, the ones who understand, and are kind, and will spend the day driving me to UAB for medical appointments.
I do volunteer work. Having to quit my beloved profession was and still is painful. But I’ve always been a caregiver, so I do the things I can do. Fostering kittens is hard work but lots of endorphins! I’ve learned to limit the way I do that.
I am a gardener. I’ve modified my expectations. I work in small bursts of time, and have purchased tools that make it easier and less painful.
I am a nurse, so I’m exceptionally good at evaluating my progress and medications. Antidepressants help, not only with depression, but also nerve pain. Find a great medical team and work with them, even if it’s in another city. Be ready to try and discard lots of medications, therapies and theories until you hit the right combination. I had genetic screening done, because my sister has the same symptoms. It did not show anything yet, but new research is happening all the time.
Lastly, but most importantly, I am a lifelong Christian, and have always been a “church lady”. I am in my pew worshipping every Sunday, sometimes late, sometimes wearing sunglasses when I’m dizzy, and sometimes shedding a few tears. I’ve chosen to sit with people who genuinely care about me. Outside of church, I pray - some days more than others, when my suffering or sadness are particularly bad.
Replies to "Hi Jan. One thing in my favor is that my SFN came on slowly, so the..."
@julbpat You should write a motivational book! As I was following this thread, you hit me with the part of “friends slowly drifting away”. For me, I thought the major drift was because so many of my high school friends fled our very small home town (and state) and got busy with spouses, children, work, and life in general that it was hard to travel and meet at very specific times other than class reunions spaced 5 years apart; and even that was like herding cats.
Until…….. This is the year I turned 60. I had planned to treat my birthday just like any other year. But, you have to love Facebook! My old clique, my 8 best girlfriends throughout high school, had their big 60th year birthday bash by all flying into a specific city and making a week of renting a house, wining, dining, touring mansions & taking ghost walks, walking beaches & sunbathing, more late night partying & dancing, gossip and nightcaps…. I didn’t get an invite. It kind of hurt seeing the pictures. But you know what? I have no doubt they know I was missing from the pictures. I have no doubt that I was part of the “gossip” (I prefer to call it reminiscing, and they probably pity me a little). I have no doubt that while they all had a wonderful time, that they struggled with the decision to not include me in all celebrating our 60th year together. A person who can’t walk without assistance (and in this case also no longer drinks) is a big party pooper and drag for folks wanting active fun! I do wish they’d told me they were doing it though, as awkward as it might have been. But it’s all part of this understanding and acceptance we have to learn to face, isn’t it? I looked at all the fun pictures, liked a lot of them, commented on some of them because I was glad they were all having a fun time with 60, and then a couple of pictures made me thankful I didn’t drink any more 🙃 because they were partying like they just turned 21!
I’m glad how faith helps you through the new phases we just have to embrace. It is indeed a mental exercise to stay positive, and those of us fortunate to have great partners are very lucky. I think having to move states like we have has helped me in that by starting over, you’re finding friendships all over again with your new set of abilities. I’m not part of the “tennis” or “pickleball” circles, but we do have active people who also like the pool, sit-down activities and social events. I’ve learned to enjoy watching people too, but there’s nothing like a good James Patterson book when I have quiet time. I keep thinking about what young @njed keeps reminding, “Focus on what you CAN do!”. Thanks for your positive read today!
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Thank you for your reply. I have been my own advocate without the benefit of a medical background, pushing for answers. With the rapid onset, and developing new symptoms and other diagnoses, I am quite overwhelmed. I will keep trying to find neurologist/doctors who can help me put all the pieces together, or at least make an effort to do so. I have a husband who is willing to drive me to appointments. At least with the SFN biopsy report, I feel like I have some proof for my symptoms. The neurologist I saw (twice) did not think there was anything physically wrong with me. That was very demoralizing. I have started therapy with a counselor experienced with chronic illness so that I don't burden my friends too much. Doing the best that I can and grieving for all that I lost (yoga and hiking on trails alone). Now, I'm trying to find something new to find purpose and joy. I'm glad you have your faith.