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@ jesfactsmon I do relate to Linda's outing filled with joyful emotion, adaptation and maybe some anxiety? I am incredibly happy she made it out of the house, in the car and to a market. This was a big day for her (and you)! It is burdensome that we pay the price for simple pleasures when we live with neuropathy, fibromyalgia, chronic pain disorders, etc...
I gave up driving last December at the height of my debilitating pains. Pain made me reclusive and I did not like it but I grew comfortable. I became afraid of igniting more pain by leaving my house. I became at odds with riding in a car with various discomforts and pains, from movement and jarring, to sound and lights. I developed anxiety from all of it. I knew I had to force myself out of my safe zone to find whatever normalcy was going to mean for me. Every time I pushed to go out, I paid a price but knew it was mentally healthy to tackle and accomplish, even if it meant I was bed ridden after and down for the day or night. Never did I like any of it and still don't. I'd get quite resentful that the bad presented, which means I lost focus of the good that presented. Mindfulness...always a student.
After a long winter of this, I started to believe my body was shutting down from lack of use. It's stated that excercise, movement, stretching is relevant to neuropathy. Practicing yoga or tai chi is beneficial and must be done as tolerated but, still done. Well, I did minimal stretching and that's about it. By April I mysteriously started to feel let up in certain places (maybe from myofacial release, maybe spring was in the air, maybe supplements kicked in, maybe the stars alligned). My point is I pushed little by little, in and out of pain and realized with every movement, like planting a flower pot, I was completely over stimulating my muscles. Bending to pull a weed set my legs on fire. I'm now able to do a smidge better with a bit less pain and I'm happy for that. I made my first drive in the spring as well. It was nerve wracking. I felt out of sorts and my body wondered what the hell I was doing! I had tried before but my body went nuts. So, there is my small progress...I drive maybe once or twice a week, 5 - 10 minutes max to one small destination like CVS. Sometimes I still put the car in park at a light to save my leg. It feels wonderful to have that independence back and I listen to my body when I cant do it. Many days the legs put me down without choice.
I've babbled too long. I just hope Linda knows I feel her frustration, sympathize with her pain and rejoice in her happy moments of which I hope will become more often. I hope she is motivated still, somewhere inside, to keep her fight and not let her feet win completely. I'm impressed with her day and hope more can be had. How about a portable wheel chair for the next grocery trip? Be well Hank and Linda. All the best to you both.
Rachel
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Hi Rachel, please forgive the length of what follows. I don't know why I didn't just do one encompassing response to you and Lori together, should have. But anyway, yeah, the driving thing. I admire that you are not giving up, that is really good. Keep doing it as you are. I think Linda is at the point where she just can't do it. Her reaction time seems to be not great now. And that makes her hyper nervous to be a driver. She last drove the car on a short local drive last year, possibly August or Sept. Since she rarely leaves our condo now and since I am always around anyway there is no need for her to drive really. But this deterioration of her overall condition this past year has our attention. I also hear you about exercising. Whatever you can do to get yourself to do. It ain't easy that is for sure. I do wish she would push a little more to do some. Easy for me to say, most days she just doesn't have the extra energy for doing any. I got her this vibration machine about a year ago that she stands (or sits) on and it moves around forcing her muscles to compensate for the different positions it puts you in. Even that is hard sometimes. She also tries to do these videos by Marie Esmonde-White. She does these half hour shows of basically body movements and stretches, lots of stretching. Very good actually. I can't do them myself because Marie tends to talk a lot (mostly about nothing) and I get annoyed after a while. Even with the sound off I see her mouth moving constantly and it is distracting. Rachel, you amaze me with what you deal with, shoulders head and neck issues; and then the legs! The legs seem like the worst. We have a wheelchair from Linda's Aunt who passed in 2010 but I hope we can do without that for a long time. So far Linda can walk thank god.
Oh, one thing Lori @lorirenee1 asked is when Linda last saw a neurologist. That would be never. She got the neuropathy 2 days after her last chemo infusion in 2014 and because it wasn't horrible at first we just kind of relied on learning about it online. Anyway at that time we had bigger fish to fry, i.e. we were trying to figure out a way for her to lick cancer without chemo or radiation. We figured that one out in August of 2015 (after her last cancer outbreak that year) with the discovery of something called Haelan 951 (Google it if interested) and cancer is no longer an issue. And we haven't thought about a neurologist because Linda thought "What is a neurologist going to fo? It's obvious I have neuropathy" so she's been coping with it best she can and I retired in 2016 to be her caregiver to whatever extent she needs.. So there you go. Neither of us put a lot of trust in doctors. And Linda does not do well with drugs anyway and we both believe in just living a healthy lifestyle as much as possible. And of course there is Faith. That underpins everything. Ugh! I know what you mean about going on too long. Sorry. Thanks for your post Rachel, you're the best. Hank