Life changes with SFPN... Have others been forced to change?
 

Hi all!

I have come to a point in my life recently that has me pondering changes due to the increase in pain and discomfort of my neuropathy. I was curious if others have had to make changes in their lives to help them deal with the neuropathy and help their lives be somewhat better?

Currently, I drive to and from work everyday, total time in the car is 3 hours a day and 15 hours a week. Starting to take it's toll on me physically.

My current home had stairs, 1 bathroom and it's up the stairs. Not ideal!

The reason I think about this more is, I'm attempting to lesson the stress I put my body through. I started yoga, continuing my mindful meditation and looking for simpler things in life to enjoy, does anyone else think this way?

Thanks

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Dear hbielski,

When we moved 6 years ago, we chose a house with the master bedroom and bath on the first floor due to my profound PN in my feet and legs.

I wear braces on both legs, and loosen the one on the right so I can drive.

My SFN is 'controlled' with 3600 mg Gabapentin, which makes me sleepy at points during the day.

I do not work, as I retired several years before these Neuropathies enter my life.

I understand that it is difficult to get qualification for disability with SFPN, but I'm sure it is possible in some cases.

I use meditation and mindfulness, as well.

The book, How to Be Sick,by Toni Bernhard is very good.

As are the books by Pema Chodron, an American Buddhist monk who makes lessons in learning Patience Persistence and Acceptance very accessible.

The first lesson is self love and self acceptance. Hard for me, for some reason.

I wish you well, and hope you continue to post about your 'path'.

Hugs, ElaineD

I'm dreading a six hour flight next week because I know my feet will be in constant tingly pain.

I can't imagine three hours a day of commuting! You should be proud of your ability to deal with that to support your family. Personally I would do whatever I could to lessen that commute. For me, stairs in the house would be a tiny issue compared to 3 hours a day of sitting in a car, but everyone is different.

Changes...
 

Not driving due to not always knowing where my feet are.

Resting several times a day. Time my activity around my family's schedule.

Don't go shopping without a walker or motorized cart option.

No hugging or kissing due to allodynia.

Try to focus on still being mobile and being grateful for help when it is offered.

Will only be able to live on one level house in the future-thankfully have master bedroom on first level.

Seem lazy to others and socially awkward, those adjectives would have never described me before.

Thought I had empathy before, but now have much more. Working more on seeming as normal as possible and finding joy in small things.

So thankful for this board and all the help that others here have provided.

NT Rocks!

:grouphug:

Thank you all for sharing. It means a lot. I'm so thankful I found this forum. It has really changed my perspective on things and helped me understand I'm not alone!!!

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Bought a house with everything on the first floor, so I don't have to do steps. I'm working, but I have a lot of help/support at work from my coworkers, thank God, or else I wouldn't be working. I rest a lot on the weekends, but do as much as I possibly can with my family. My feet seem to be getting worse and I wonder what my pain will be like in 10 years. It's really hard, but I try to stay positive. I also have a lot of support from my family which helps.

I had a big corporate job that was about 45 hours a week of work plus commute. After 11 years in the same role plus trying to raise a child and keep house I had to finally accept that i wasn't able to do all this anymore. I now work 3 days a week and have a cleaner for a few hours a week. I have more time with my family and I have become much better at making my money work harder and last longer.

Fortunately, my SFN is pretty mild and not progressing very rapidly. While I haven't been "forced" to make many changes, I have found it helpful to let go of the little things that used to get me angry or stressed out. As a result, I'm finding more pleasure in the simple things. I don't need a Caribbean cruise to make me happy - a quiet night with family or friends is now just as satisfying.

So I guess in some strange way, at least a little good has come from this curse. :)

Thank you all! My SFPN is progressing but the new meds seem to be helping. I have slowed down a lot. I used to work 40+ a week, commute 15 hours a week and work at conventions on the weekend. Now I meditate and I'm attempting Yoga. We are looking to move in the next year closers to my job. If it wasn't for the people I work with I might have had to consider moving closers to my parents but things have gotten better slowly.

Thank you all for sharing.

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