Gray or Grey
 

There is really no giving in to this disease and hoping you feel better....

Nope, rocking in the rocking chair watching HGTV makes no difference to working like a dog in 90 degree heat cleaning out a chicken coop. Actually the latter makes one feel temporarily better when one re-enters the air conditioned comfort of the home and plops in the rocking chair to watch HGTV....until the realization hits that one is in pain from all the work.

You are d@mned if you do and d@amned if you don't.

Sit, stand, lie down....nothing makes a difference. Pills make ya sick, as in dopey, mopey, dizzy, whizzy, pukey.


Pfffff.....this disease stinks and it gets little press.

I could think of a dozen other conditions I would rather have, some with their own special colors! If PN had a color it would be....gray....plain old cr@ppy gray. I could pin a gray or grey ribbon to my lapel and say this is what I feel like with this disease. (Not that gray can't be stylish....it just isn't inspiring)

I gotta go and find some trouble to get into to make me forget my color is gray.

I see under my screen name it says, 'senior member'....does that come with a discount or are you guys just reminding me of my 'gray'?

Means you can join AARP,,, but I know Cyclops how you feel,, do something,, be in pain,, do nothing,, be in pain,, look at the pill bottles and wonder which one just might take the edge off for at least 5 minutes,,, I;m tired of crying in the darkness,,, there has to be something in this huge world or ours that can make our lives more managable,,, I wish my family understood,, I am so tired of just sitting in a lounger,, getting up,, stumbling around like a drunk,, guts in overdrive,,, and just wondering at what point does it all just come to a head where you actually lose your mind,, I admire your acceptance of this thing called PN,,
I have watched my family come apart over this,, I have lost my wife,, she doesnt understand this horror show,,, my sons dont see it,, I go over to see my sister next door,, tel her how bad it is and she tells me her fooot hurts,,, want to trade,, take my body for a hour and i;ll take your foot pain,,,
Lifes hard right now

Gray would be good,,, I have a gray shirt on today,,, kinda matches the whole body PN we feel,,,

Gray or Grey
 

Think "grey" looks/sounds more Brit - like that better than "gray."

Either way, PN of any stripe is beyond bummer. It's as if one day somebody just used a dimmer switch on us, set it way down low and made it stick in that position.

I know that feeling sick all the time is much worse than not, having had one illness that almost killed me when I was 30 - hepatitis/jaundice from shellfish - but I did recover after a year, obviously.

But it's still a dirty trick to wake up feeling pretty doggone good only to have it fade away as the day goes on and realize the SFSN is still here.

Shucks.

Best wishes to all,

Sheltiemom

I know the feeling. Had family in town today & took it for all it was worth, which means I'm already pretty roughed up from it. Hate to think of what tomorrow will feel like, but hate even more the thought of missing time with family....

Yes I know how you feel do too much you are in pain, do nothing and you are in pain, makes no sense, grey sounds like a good word as if a grey cloud in hanging over you.

Grey is good. Grey is this lousy flare I am trying to shake right now. Take more of the medicine... The medicine makes me grey. And now I can't sleep at night because of the medicine (prednisone) and that's grey... Whack your body with more grey medicine. Why is this not working? :Sob:

Mere

Sounds unanimous....it is GRAY or GREY.

Kinda fits with 'gray matter'.....or 'Grey's Anatomy'....no?

I am trying to maintain my sense of humor. I have my 6 1/2 month old grandson, who makes me laugh no matter how sour my mood. I brought up the blue gymnastics mat from the basement and cleaned it off, and the rule is, he is to stay on that mat....(He crawls). Well, he thinks it is his destiny to go everywhere beyond that mat....that would be OK, but he STANDS! Yes, he stands and does not understand the consquences of letting go of his supports.
I have visions of subdural hematomas in my sleep. This kid finds every crevice, every difficult spot, every cord....every contraband! No, he does not like the pen....he sreams....maybe the jumper or walker for a while....but, his lair is the floor, on the loose...... My hair is already gray, so now what?? A whiter shade of pale?

I have canned 100 jars of red slop and vowed not to do it again next year...(I say this every year.) My last pot is burbling on the stove and it will yield 20 quarts and I am done!!! The last 200 tomatoes go to the first bidder....for free!

Now I am psyching for this surgery, that the doc already told me is very painful....ugh...8 weeks of arm immobility and then getting to do it again....You likely won't hear from me after the middle of Sept. until I regain the ability to type.....I am not patient enough to hunt and peck.

Sounds like a baby adventure at the cyclelops home. It is wonderful that you can spend this time and be there for all of the wonderment.

Lovely, lovely tomatoes. Lots of work. I know.

I am so sorry to hear that you are having surgery. It is difficult when the hands don't work... are you having carpal surgery?

My hair started turning grey when I was 30. I am a partial red-head - my Dad was a carrot-top. I have been coloring it so long - it may be white by now.. it appears to be when my roots grow-out. Maybe it would look better on me, perhaps add a flair of distinction?

Mere

I am still passing for a blonde....but not long at this rate.

I am having a tendon transfer...it involves using a 'useless' tendon from the arm as a piece of cartilage, for a bone they are removing from the base of the thumb...some chiseling here and there and a pin, maybe a carpal tunnel release, not sure yet.... 4 weeks of cast, 4 weeks of splint......tada...new hand....so they say. Oh, I hear it is quite painful for a week...ya think??:p

I am endeavoring to prep for this by eating all kinds of exotic ice cream....and sitting.

Ohhh, sounds like a lot going on with that surgery. Poor Cyclelops... Like you don't have enough pain already! Let people fawn over you, put a damp rag on your head... and yes, exotic ice cream and good movies to watch are a must!

Mere

Sorry everyone's feeling so grey...guess I am too. Thought the latest med I'm trying (amitriptyline) was actually helping because I had a few good days in a row, but the pain is back with a vengance today.

And FTB, I'm so sorry about the effect this has had on your family. But I know exactly what you mean about wishing that some people could feel what you feel, just for a little while.

Grey is the color of the season... I'm sorry you are feeling so poorly Joan. My view is that all the meds, careful living and doctors only keep the illness at bay, but it always returns, nonetheless... I guess it has to be enough just to have a few days of relief. Stinks, doesn't it...

Mere

Well Mere, I did realize a good thing: while assessing my recent pain level, I noticed that it hasn't gotten worse for quite a while...and considering how rapidly my PN started and escalated, maybe that's important. And my balance has acutally gotten better...I haven't veered off to the right and crashed into a wall in a very long time. So no more whining from me.

For today.

OK, for this afternoon.

Thank goodness for these small, though not insignificant improvements we see from time to time. Not veering off and crashing into the wall is a good thing! :winner_first_h4h:

Mere

Gray or Grey , drunk or veering?
 

When I get up at night and go to the bathroom, my room mate (also ex-husband) says it always sounds like I'm drunk! Banging into doors and walls. He works swing shift and comes home around 1:00am. That's about the time I make my first trip to the potty. He said he used to leave the hall light on because he thought I was having trouble seeing in the dark. Then he realized it wasn't that I could't see, it was just that I couldn't walk! :eek:

I'm a little better during the day, I try to stay closer to the walls and doors so I can keep my hand or elbow against them for balance.

It does seem like the right side is the one I always "tip" towards!

This is a very good color for PN.... Gray is the spelling I like best!

My trip to the bathroom sounds pretty much like yours....except now, I have to dismount my bed....so far, it is going OK.

I endeavor to try to keep the floor uncluttered, but, that seems like a lost cause lately.

I bounce of the walls in the middle-of-the-night trips to the W.C., too.
Seems to be worst upon immediate awakening and rising from the bed.
Mornings are about the same, takes a few minutes to 'get my bearings' & balance.

I wonder what the mechanism is behind that....it is so annoying. I know if I just waited to get stable, I would decrease my chances of falling, but I want to go pee and go back to sleep before I wake up too much and then not be able to sleep.:p

Im English so its deifinitly grey for me guys. Cyclops, good luck with the surgery. Hope its not too painful. These stories of trips to the toilet sound horrible and I fear im not far from them myself.
PN certainly seems to be a horrible condition and as so many of you have said it is not understood by friends and family. The best way I have heard someone try and explain it to a non sufferer was try imagining a toothache that would never go away.

I like what Hemse said about someone saying to a non-PN sufferer that it was like a toothache that never went away.

For we burning types who have the small fiber sensory, it's like a sunburn that never goes away. It just feels SO good to have to put on clothing every day that feels like sandpaper scraping along the skin.

But no matter what kind of PN one has, they're all nasty.

In the absence of taking meds to try and dull the allodynia, I find that distraction works fairly well. So far. That's why I have to keep on going as best I can for as long as possible.

Tonight's distraction will be the TV series Mad Men. Come next month, Mad Men AND Dexter on Sunday nights. And there's Netflix. Just LOVE movies - classics in particular. Can really get lost in them.

Best wishes,

Sheltiemom

Yep, distraction is about it....and I am running out of things to do.

I saw on a TV trailer, that they are re-releasing - for the big screen
'Avatar' in 3D & IMax 3D.
New scene(s) have been added that were cut from the first release.
If yer into movies - that's the one to see.

I saw it in the theater, but not in 3D....yeah, the movie scene....back to my genealogy stuff....preparing for holidays....getting thru this surgery....then deciding if I want the second one...raising this grandchild....waiting for my first EGG which should be in the next few weeks! I have 2 roosters, which so far get along, mostly because I have enough hens and a large containment for them....bigger than most people's yards....so, I hope I can keep both. It takes 10 hens to keep one rooster happy, and I have a total of 23 hens. I am very attached to my Plymouth Barred Rock, Lars, since he is so sweet. My Ameraucana, Anders, is a snit....he is totally neurotic and not very nice, but I like his colors. We shall see..... My business should be booming after the egg scare....but it won't....

Eh...you know, late summer doldrums. I got all my tomatoes canned and left a few to rot, just to add to the fruit fly population. My hands just gave out....totally gave out and have not been back to 'normal'.

As hard as I try, I do see progression in the disease, whatever this disease is....bums me sometimes. I will get over it.

We have a busy Fall and Holiday season planned, so I will get to see all of my kids, and grandkids....and who knows, maybe a new one will be on the way by then...."to everything there is a season". I hope I get enough seasons to see all the joys.

Maybe I need an elephant ride??:)

I'm a convert to the wonderful world of bedside commodes
 

I live alone and don't have to worry about a mate's comfort. For the past 3 years I have used a commode for the 2 am bladder call. Lets me sometimes get right back to sleep and eliminates the crashing & careening off walls on the way to the bathroom.

Well, maybe I should have taken to the bedside commode last night! I wasn't able to make it all the way! I had to grab the towel from the back of my door and use that as a temporary "diaper".

By the time I actually woke up enough to get my bearings to the bathroom, it was too late to make it all the way there! So I grabbed the towel from the back of the door and sat on the chair so as not to ruin the hardwood floor. Then I reached for the dresser and a clean pair of night clothes. Headed for the bathroom to take a quick "body shower" then to the washer in the garage, then back to bed. I was pretty wide awake after that! Oooohhhh this is just so frustrating!

I've been through this in the car coming home from a 2 hour trip, or with the granddaughter in the car... many many times! I'm only 50! I still work full time and I'm not ready to wear "Depends" yet!

Then, while driving to work I felt a zap in my urinary area, (you know, one of those nerves that are about to go out that sends a message saying... wake up!!!!) and at the same time, a zzzzap in my ankle and toe on the left foot! Whew! That scared me! Especially while driving!

Hey, the circus is coming to my town... maybe I'll see some of you riding the elephants!

I will be with you riding the Elephants Terri.

Don't worry about the "Depends" if you need them wear them. You reach menopause and say great no more pads and then you have to wear pads for a different more embarrassing reason. It is one more thing I have to add to my shopping list. The joys of neuropathy. Yes very grey indeed.

Oh, the Depends may be a good option for those times like sleep or car rides....you can temper it with some nicer undies for times when you feel more secure!

I wonder if Depends would keep me from having to stumble to the bathroom when staying in a hotel or a friend's house? Any shortcomings... leakage, etc?