hollow, and empty this kind of loneliness is. Pretty much at first, I was on my own, as my DHusband had to go back to work. I was on my OWN! to fend as best I could.
At first, it would take me ten to 20 minutes just to get up out of a chair and stand. I'd 'time' my intake of foods and liquids so I could make the short trip to the bathroom and kitchen and back -then have to sleep for two hours until a subsequent repeat of the above. This went on for months. As I got my strength back...most of my trips consisted of going to the doctors' appts I had for the various diagnosis processes. I then asked my Docs for Physical Therapy as I could SEE, really SEE that I was losing muscle, and thus that strength needed to do things that needed to be done! The pt was hard, but helped a great deal...It taught me that in my pain and trying to 'protect' myself from further hurt, I was doing things wrong. I made a resolution to get out of the HOUSE EVERY SINGLE DAY, even if it was for NO reason!
The more you do, carefully and measured, the more you can do. Plain and simple. YES! You have to mourn what life you had as you knew it, you have to learn to let others know that you simply can't do what seems easy to them, you have to try and teach them [little sound bites are probably all most folks can handle] what it is you have and that it's more common than most folks know. I'm hoping this helps....we are sort of a lonely bunch, in that we can't show our pain other than not being able to go for 'walks' or that we often have shadows under our eyes because of that constant HURT.
To talk to you doc about this all IS IMPORTANT, and not unusual. My doc always asks me 'How are YOU feeling?' I always reply...'Under the CIRCUMSTANCES, as good as can be expected?' To myself, I say in my brain"Well, I'm not planning on jumping off of any bridges or the like today...." You know what I mean...
I would Love to find and PROVE that there are lots of ways of beating this nasty condition! I want to learn why's and how's everything can go soo wrong and then SHOW docs what all they MISSED in my initial diagnosis, treatments and all. I do not want to isolate myself and complain [tho complaining at times is a good way to deal with it all, especially here] tho there are ways to 'constructively complain'. I do want to let the world know that PN and all neuropathies are part of a greater world that is the whole of this board-we are ALL in pain of some sort...and that we can be a powerful voice to the world of medicine research and those who fund issues on our concerns to find CURES...not ten years from now...but next week? Please?
Mutliple big soft 's to you...You are NOT alone, not by any means - j