How do you start accepting your disability?
 

I'm really in need of some advice because the only time I feel uplifted is when I do something that is connected to my old way of life. For example going to the diner on a Sunday with a friend. However the other day I did something very foolish and it cost me in pain & grief. In the past 5 mos. I developed a bad case of SFN that is very painful in most body parts. My hands & legs down to my feet are always hurting. Being fully aware of this I went to Home Depot and bought a replacement faucet for the kitchen sink. It was a job I had done with no problem several years ago. This time I tried to replace the faucet with this diseased body. Wow, not only was I was not able to complete the job but now I have extremely bruised contusions all over my back and neck. My hands hurt so much at one point that that all my fingers trembled for a while. I had to ice my hands and forearms to calm everything down. The whole experience brought me to tears of grief and anger. I kept yelling "why has this happened to me".

I would like to ask how did you start accepting your disability? I am having a lot of denial issues and could really use some help.

Thanks,
Cliffman :)

PS-I'm now waiting for the plumber to come and fix the mess I have made plus I presently have no running water in the house because I had to shut off the main.

It was a cold and rainy afternoon
 

I would like to ask how did you start accepting your disability? I am having

Sorry, I always wanted to start a post thataway. I needed to get into the backyard and unstop a drain. If I didn't my house could get water in through the patio doors. I did OK until I stepped into a hole or depression and went down. I tried getting up,no dice. Called my wife and she tried, no dice. Was brought a chair, no dice. Called 911 and hoped the lightening wouldn't get me before they arrived. Fast forward about two years and now I know what the forcast is and if drain maintenance is needed it is done while the sun shines. This is just one example of a person pushing the limits. Your faucet thing was pushing your limits. Just like animals that sniff an electric fence, it just takes a couple of times to learn not to do certain things. To this day, I will not go into a swimming pool without some spare horsepower in the form of another man or a teenager, etc. Yes it is degrading and just as soon as you think you have no dignity to lose, BAM, another chunk bitten off and swallowed by life living with this condition. I don't think full acceptance is ever achieved. Perhaps some achieve a state of homeostasis where they aren't always barking,kicking,snarling and biting the electric wire. You obviously are not there yet. I have regained the ability to walk, if you don't push once in a while there is no other way to guage capabilities. A little post-failure remorse is natural. Oh, I have also regained the ability to change the oil in my vehicles. I grab the bumper and haul away until I'm standing. I had to hire plumbers for the first time in my life so I feel your pain, in wallet as well as dignity. Keep fighting, well, wait until you heal up. Good Luck, Ken in Texas.

i dont see anything wrong with what you tried to do with changing your faucet. i personally dont think its a good idea just to accept that you cant do something. you have to test your limits sometimes to see what they are. as long as its not something dangerous which could get you seriously injured i dont see the harm in trying. in this case you would have had to get a plumber to your house if you didnt try anyway. i think one of the main things we have to do for ourselves is not to be too hard on ourselves and the mistakes we make living with this illness. im still working on that right now for something im angry with myself for letting happen that did cause a serious physical injury. sometimes we are our own harshest critics.

Hi Cliffman

I agree with the above - part of accepting this condition is recognizing your limits and working to them. I sometimes have days with complete brain fog (or severe headaches) - those are what I tell myself are "No Power Tool Days". It doesn't mean I stop trying to do things I used to - I just put them off for a day when I feel more capable (also a safety thing) and instead take care of easier tasks.

More frustrating are the "Lost Days" when almost nothing gets done due to pain, fatigue or any number of issues. It's taken me a while to accept this but it's part of the 'not being hard on yourself'. Realizing that sometimes your body just needs time to vege out and re-energize.

Take the good days and run with them (ie: get things done) and just endure the bad days.

All the best for future DIY projects.

John Wooden
 

Cliff, I have this quote printed on reminder cards in a few places around my home...
If I'm especially hurting physically and feeling down, usually just reading this and meditating for a few minutes, will get me get through the day.

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I'm 85 and was diagnosed about 25 years ago. Absolutely refused to accept it because I knew I could think of something to make it go away.

First, I lost feeling and strength in left arm & hand. Dropped everything. Neuro said nothing could be done. I bought a grip ball from a golf shop. It basically never was out my hand for about a year. My grip came back and
still works.

A few years forward and I suddenly lost control of my right foot. Could move it tripped over with each step. Neuro said nothing could be done. I found ways to make it work again. After over a year it worked fine and I've never had another case of 'drop foot'. I'll be glad to be more specific about things to do if anyone wants help.

PN is one of several battles I deal with 24/7. I get vexed still because my body refuses to do most everything. Fortunately, my mind is still clear so I
keep busy coping.

Cliffman, all of us with PN feel as you do. Venting here will help some for that reason. We hear you. Every reply was someone who vents our frustrations, too.

Gotta find the "new you"
 

Cliffman:

I'm fortunate that my symptoms aren't as bad as what you are describing. But, there's still a lot of projects (car maintenance, home repairs, etc.) that I can now do only with great difficulty if at all. You can't stop being "you", you just have to morph into a "new you". I'm in my mid-50's and was already reaching a point where certain things I loved, like playing sports were getting difficult. So, I was already thinking about what I was going to do as I aged and had to find new activities to participate in.

When the PN hit, the shift just had to start taking place much quicker than I planned. I go out to dinner with friends instead of playing basketball with them. Instead of hiking in the woods and geocaching, I go wine tasting. I read more books. I go to more movies. And, I spend time on this forum......

One of the things I've been reading about lately is vinyards and wine making. I love to have a glass of wine with my wife and friends, and wine tasting has been a hobby for a while. Now, I'm seriously considering small batch home wine making as an extension of that hobby. (I know alcohol is not good for us with PN, but I exercise moderation - and the enjoyment for me is more from the companionship of friends and family rather than the alcohol consumption.)

So, the bottom line is try not to dwell on the things you can't do. Think about what you still can do - and how you can expand those things into new directions that you may not have thought of before.

Im 65 and recently diagnosed , I feel so bad mentally all the time. Its the why me, I have constant burning feet and legs. I cant stop thinking about my illness. In fact thats all I think about ... I see you made it for 20 years I dont think I can , because why do I have to have this.? Thank you for your post you gave me hope.

Thank you to everyone that replied...it helped to know that I was not a complete fool to try.

Acceptance is tough given this is so new to me and perhaps it will never happen. However, I learned from reading your posts that one must try or suffering becomes magnified. What makes it difficult is all the memories of doing almost anything with ease and the reality of how hard it is to do most things now.

BTW, the plumber came and fixed what I could not complete so once again there's running water. I will certainly pick my battles more carefully going forward...well at least I hope I do since I can be pretty stubborn. :D

Cliffman :)

Accepting a new way of living
 

I am still trying to accept this new life. I am looking to discuss how to's!