Another Example of How Family- Just Doesn't 'Get It"
 

OK, my wife is an administrative RN/BS w/an equivalence of a Master's Degree. A dept 'head'
She's treated patients with HIV/AIDS who've developed PN.

Last night I was chopping and sauteeing for a Chicken Caesar Salad.I dropped the knife on my foot, scraped my shin - no biggy- not even a band-aid.
Then I dropped the bell pepper. then I dropped the onions I was chopping.
Then I dropped pieces of cucumber on the floor- then I cursed an expletive fairly loudly and slammed the knife on the cutting board.
I was frustrated at dropping things all the time.
I drop pills, or tops to pill bottles.....on the floor... alla time
(I take pills alla time!). I drop small parts on the floor, when I'm doing repairs....alla time.
I drop hammers out of my hand (sometimes on my foot).
I drop things .......PN !
My 'better half' starts complaining about my 'attitude' saying I don't have to be mad, or so angry at things happening (I'm angry at myself) alla time.
She starts an argument about my having to 'get through it' and not get upset, because it upsets her to alla sudden hear me slam things down & curse (either loudly or mumbly- doesn't matter).
I complain that its really frustrating to have the PN affect me, so that I'm always dropping stuff.
She counters with me being bull headed and always mad,
and on......and on.....and.....

Well, they just 'don't get it'!........because
they don't...... have it!

It doesn't matter. Even to a medical professional who's a wife, its a no-see-um disease and they forget and think we're acting normal and fool themselves into maybe we're 'getting better' (?!?).......and when I
flare up, (or my PN does)....I'm not able to 'get thru it' and
move onto another plane of existence where I learn to
not let things like that bother me anymore.
I'm supposed to be better than that.

They just...... "Don't..... Get... It !"

:hug:

nope they don't bob. mine doesn't get my back condition either. :(

my wife is a nurse too and her reaction is very like yours. when she sees me on these boards she tells me im dwelling on it too much or obsessed. nurses are tough, i have noticed that many medical professionals will never admit that you will never get better, they usually avoid it, its why many people have problems when disability claims contact doctors especially surgeons, its not in their mindset that you will never be ok again.

Dropsy
 

I also drop just about everything anymore. There was one day a week ago where everything I touched ended up on the floor and this was in the morning! I told my husband if I dropped one more thing that day, I was going back to bed and staying there until the next day. Of course, it did not end, but there was no way I could go back to bed.

The frustration of this is horrible and I only really feel all this PN stuff in my feet. :mad: No pains in my hands/wrists/arms. Just somthing that I really can't explain - like I don't have a good hold on an item when I know I do. I am real careful anymore when taking things out of the microwave as it is above the stove so I have to reach up to get things. I use both hands now where before I used to only need one.

Bob, I am with you. My husband thinks he understands and is usually pretty good about my PN, but I know there are times when he wants to go somewhere in the evening and I am at the point where I can't walk anymore. I usually try and do my Anodyne therapy 3-4 times a week, especially in the summer as I am on my feet so much. It does help me a lot.

Bob:

I can sympathise with you. But I'm on the other end. Alan has had his PN for over 15 years and of course I never felt his pain. I would see it but I never felt it UNTIL I got diabetic neuropathy and the podiatrist used a vibrating tool on my toes and that night I went out of my mind with the buzzing, the zapping and the burning. All Alan quietly said "welcome to my world". I looked at him and said "oh my god".

So a person really has to walk in another person's shoes to fully understand this.

But I do have a suggestion for you because you drop things on your feet. Do you have a shoe with a steel toe? Like a workman's shoe thing. Timberland makes them. Perhaps you can wear them around the house. Or even a pair of those ugly croc shoes (with the big toe box). If you drop a knife or something, at least your feet won't get cut.

Now don't start dropping bowling balls....lol.

I met a woman at the neuropathy association support meeting and she wears these diabetic shoes with steel reinforced toes.

Hey, it's a suggestion.

Melody

You are in good company
 

Bob...Rant, rave all you want to!! We all understand. The tireder I get, the more fumbly I am. So you just rant away. Does anyone understand???!! ... Probably only the group of people who read this and shake their heads that yes, ....they understand.

I truely honestly believe that people CAN'T understand unless they suffer it themselves. I just went thru an event with my husband. We discovered that he has an exceptionally low pain level. After back surgery he really didn't require pain medication. That is amazing! It is no wonder that he truly doesn't understand my pain. And it may be so with your wife.

I'm just so sorry you are having to go thru this.

Billye

Nide, boy do I identify with some of what you wrote... I was putting together some cheap book shelves just before I got tetanus, and I hit my thumb with the hammer...

But... ha ha! it barely hurt even though it got very black and blue. :rolleyes:

So, I was like, well, there's a little benefit...

but then of course I didn't feel the bit of darning needle in my toe, either, and that's how I got tetanus.


My family just does not get it. at all. My cousin, though not a nurse, acts like the nurses written about here...

She often writes along the lines that it's my attitude... not my physical condition...

have to laugh... :D

(can't afford the tissue to cry all the time)

:)

Wow, I'm soooo impressed. I was a silversmith in London. :)

I put my workbench in the room with my solar electric cabinet and batteries, I thought that maybe if I were to pound on silver a bit, that it would help me get rid of some of the stress... but, so far ...

well... so far I've failed to get the silver...

:)

Bob just go ahead
 

I was a nurse for 25 yrs and when i drop,burn cut,break body
parts,and i yell,usually because i'm going to have to figure out
how to pick them up,if i feel it how to open bottles and bandaids
stop the bleeding and then clean up the blasted mess. It' hard
because if i don't rant and rave,i know i will be doing it in a few mins.
when i drop everything ,trying to pick up all the crap i dropped trying
to heal thy self.

When you start loosing the use of you hands OH geeez,i was the caretaker
for so many years,i cry when one of my children will blurt out wow Mama
you have gotten so messey,or here let me help you, burns me up.
And i find i'm pushing them further away,when with good intentions,they
say maybe you should come live closer to one of us. Oh boy,it's not
going to stop the ranting. Oh i just hate it,i'm 60 going on 160. Blaaa
to people who just don't get it :confused: :confused: :confused:
even for a min. Go ahead Bob vent and rant,and cry if need be...Sue

Bob, I take it you have already...
 

exhausted the vocabulary of both acceptable and not acceptable Four and Five letter words?
I am going to assume that some upcoming events are stressing you? Like BIG-TIME? Then further, I am assuming that all is NOT going as it Should! On multiple fronts.

I too, used to do the 'fine work' of Jewellery, Cloisonne [melted glass] and Fabrications...I know now that I do NOT touch anything hotter than an almost cooled boiled egg or else - BIG BLISTERS? I Know I can't dare get near HOT, as much as I'd like to...makes many cooking 'experiences' a 'bit' different?
As for gripping things. Durn! Opening a milk=-jug or a mustard bottle...becomes an 'adventure"? One thing I use is the following... Don't open ANYTHING w/o IT!
http://jefferson.noc11.net/~kitcheng/catalog/
I use the mitts and the hot pads...and have since my onset...they are still gripping. opening, and are THIN? not like the Kitchenaid stuff. My pads in their four years of WORK are almost new except that the 'logo's' are wearing off?
These are keepers! AND HELPERS! Goodness knows we all gotta adapt however we can?
RANT AWAY! Ever always! You have real reason. Go thro a lotta cheap pens on the floor and watch 'em break - It can be very satisfying...least for me at times. Downside is you gotta clean 'em up?
VENT....Here and yeah...most folks don't have a CLUE! Never will - and honestly while I have THOUGHT about wishing this on others, I have changed my mind...frankly That kind of person [that I'd wish this on?] would probably be a pest. I want to be in GOOD COMPANY, such as yours. GOT THAT? - Sloppy HUGS! - j
Like the kind you'd give a fav neice/nephew or dog...

Wow, you guys did far more advanced things than I did. I'm so very impressed.

I mainly made bangles.

I used to be able to pick up things I'd just soldered (in England they pronounce the d) right away. I never could figure out how I did that. I figured it was like people who can walk on red hot coals.


I know I'm boring, but I want you to know that while and after I'd lived in the hydrogen sulfide I dropped things a lot more than now, and I used to bump into things more, too.

I don't know if you bump into things.


So... since I do those things less, I have got to credit the huge amounts of b12 I had with the improvement... because that's really the only thing I did have.

Now I can walk down my hallway and not bump into either wall. When I first moved here from my condo that wasn't possible.

If I had a shower (hot water and full tiles and stuff) I'm wondering if I could turn around with my eyes closed when I'm washing my hair... I almost think I might be able to. :)


the neat thing about being a silversmith in London, though, was that I had my own hallmark. :)

:)

Hey everybody who has to pick up hot stuff. Don't use potholders.

Buy those silicon mitt things. Best thing I ever did.

Nothing can be too hot for these things.

I put one mitt on, reach into the oven, and pull out my muffin pan (out of a 400 degree oven). The mitt is perfection.

I don't trust potholders. You might think the heat won't get through but it often does.

just wanted to share this little treasure of a thing I have in my kitchen.

Along with my vidalia smart chopper that is. lol

Melody

Off Subject - I guess..
 

I LOOVED to thwack the metal into shape...Since I had a horse, who needed specialty horseshoes...whatching a Farrier THWACK that metal to fit the foot was always an amazing thing to watch...and here I was merely melting glass on metal? The farrier especially on the days over 90 with his portable kiln/oven going up to 2000 degrees was worthy of respect and presents of Gatorade and other wet presents.
Thwacking the metal, making beautiful things, in what ever shapes or forms is something I truly love and respect.

OOOH turn around in a shower w/eyes closed and NOT hold onto walls? Fer me one very dangerous concept to consider...NOT. I do very well, falling down and breaking something w/o that...thank you.
- j

Oh gosh, It makes me so sad. I'm actually crying. It was so fun to read how you like thwacking metal. It's so amazing to see a piece of metal turn into a spoon. I used to like to make spoons. If fact my friend when I first came back from England wanted me to make her a whole set of silverware... only then I was thinking it wasn't a good idea to live in Santa Fe and take any business away from the Native Americans...

I make some strange decisions.

Well, my eyes are still full of tears, but I'm not crying.

It was that we can have these wonderful experiences and enjoy things so much... and then not be able to turn around in the shower with our eyes closed... (though I think maybe I could now... I'm thinking that if some miracle comes up and I can make it to Feb... and have some heat... that I'd like to see about on demand hot water using ... kerosene... ) :)

Hi Bob

This thread that you started with a justified vent must now be making you want to smash the computer to bits. I can only guess how you are feeling but if it is any consolation I for one am totally with you. The frustration you expounded in your posting came through like fire and reminds me of the bad days I have – and they are increasing.

Vent more my friend especially when your emotions are hijacked by those who, if they don’t understand you, should keep their chit chat to an appropriate thread.

There now I have had a vent for which I am unapologetic.

Tony

Hi Tony,

I'm sorry to see that you are feeling angry. ((((((Tony)))))))

I so agreed with the rant... and I also agree that there were beautiful things from before ... before the pain and nerve problems.

Are you saying that a rant thread can only contain rants?????

lol re the blonde Duh, Tony.

I don't see it that way, I think there are whole spectrums of things that can be part of a thread.

Even a rant thread has the yin yang composition.

:)

Bob:
I can understand how you feel. Once I was told just to "Suck it up!". Now that is just enough to reallly make you want to blow!:mad:

This thread makes me feel less sad about being single. I do remember feeling lonelier when I was married and not understood than when I was divorced and alone. I think it's worse to have someone you love and want to feel truly intimate with not empathize, than doing it on one's own.

Actually, since developing the back issue, my disabilities have become more visible, so I often get more empathy, which takes the form of: "How awful for you to go through this alone." But then, really, I was more alone when married.

At least there's no illusion.

((((((((Liza Jane)))))))))

Yes.. sadly.

Just fire away all you want to here, Bob. It is so frustrating to drop things over and over like that. And, I don't know about you, but for me, bending down to pick them up hurts... That sometimes results in a few choice words here...

This week, I dropped and broke a new $50.00 bottle of compounded medication for my little sick Yorkie. Refilled it, came home and dropped the old bottle and broke it too... (My angel was shocked at the outburst, no doubt.)

Cathie

That is the cutest little dog!

I used to work the front desk at a guest ranch here in Santa Fe, Tesuque, actually.

I got to check in Gregory Peck... and I begged the wait staff to let me take his dinner to him in his casita... and he and his wife had Yorkies.

:)

Every so often, each one of us--
 

--has a need to rail at the fates about this condition, I think.

My only advice is to try to do it at something inanimate--I tend to smack pillows. One should try to avoid misdirected enmity, if one can.

I do think that a major part of the problem here is that for many of us this is a "no-see um" condition. I've noticed, on my forays into Cornell Weill, that those with major motor components to their neuropathies, who may be using canes, walkers, wheelchairs, etc., seem to get much more immediate empathy from visitors (even sometimes from staff, who one would figure would know better). It's something other people can see, tangible evidence that something there's amiss. (Sort of correlatees wtih Liza Jane's observation that she's gotten more empathy for her spinal problems than peripheral neuropathic ones.) But for those of us whose symptoms are primarily sensory, there's no immediate visual cue for others to see, and their natural empathies don't engage (assuming they have natural empathies--for some observers, the sight of such equipment makes them run for the hills).

Too many of us have had those conversations that go:

"How are you?"

"Not so good, I'm in a lot of pain."

"Really, but you look so good."

Or some variation to that effect.

Some people will just never get it--at least until they experience some sort of neural pain. (The way diabetes/impaired glucose metabolism is going, and given the possibility of spinal problems for many, that may be an eventual probability for a lot of people, sadly.) I've sometimes said something to the effect of "imagine you've gotten sun poisoning all over your body and then someone rubbed it with steel wool", but apparently not enough people have that vivid an imagination--and the fact that I can say that makes people think that I am lucid enough that I can't be in that much pain.

In some situations, you can't win. That's why we have these boards.

I tried that little "Thanks" button fot the first time.... boy, is that a nonsense nuisance. I knew y'all had similar experiences. And 1/2 of mine.... IS bending over. to pick things up. I'm overweight and have a sciatic back. Need I say more? It just is helpful at times to say :.................................... @^*?>$@? .......AARRGHHHH !!

Good thread, Nide!!!!

I'm finding it a little easier to bend to pick things up, in terms of weight... I have been trying so hard not to get so stressed that I can't walk in a circle around my garden... just a couple minutes doing that has contributed to me losing 10 inches around my waist. :)

But the other problem with bending over, is the nerve pain that can strike... it's so sharp and ... boy it's hard to explain pain... but when it hits if I'm just bending, I feel as if it's going to knock me over... It's like a sciatic pain, which you mentioned. Only just a burst of it, maybe like being stabbed and shocked at the same time.

Well, thank you for starting this thread... (((((((Nide)))))))
(I think years ago you were the first person who told me about fish oil, and I've always remembered that with warmth for you when I see your avatar.)

:)

Bob, do you mean that going to ....
 

Pick up something and ya keep on going? Then you are stiff in the back of your legs from just trying to bend over? Ya gotta Stretch and flex in the Shower...Drop that soap [tho not on yer foot..mite break sumthing] and pick it up..under that moist soothing heat! Scrub the tub while in the shower tho...not using stuff that mite dissolve skin off your feet? Got those Tees!
I am thinking that you are probably doing about 20-30 times more bending and picking up while you move your shop...am I rite? For that, I can only recommend a moist-heat...heating pad. ON LOW and very damp..rotated every 15 minutes around all that is sore [probably your whole body?]
In the interim, creak and complain away!
I suspect my turn will come soon about such things...We do tend to feel far older than we are with this stuff! I for one do not like the reality...I prefer to pretend it's not happening...
Good thoughts and such to you good person! - j

I have to say I get totally miffed when my sister says to me "Gees why are you taking all those meds?? I wouldn't take all that crap!" Welllllll She doesn't have PN, IC, or IBS! and I do! I get so tired of hearing her say that to me. Now when we go to Nebraska to visit family I don't even set my pills out so she can see them and I won't answer any questions she has about them! I've figured out that if she's 'acting' like she's interested in my medication.....it's just so she can say something rude about later!
It's the old saying......"you can pick your friends.....but not your relatives!" LOL

Another thread I totally understand. The other day, I was getting a drink from a water bottle, I brought my hand around with the cap and it went flying across the room. My daughter just looked at me and then she broke out laughing. It did seem very funny, but honestly, I never felt that cap leave my hand and where did the force come from that made it fly like that? I too drop, then drop again, and again, then again, and some days, I slam my fist down on the counter, only to be sorry I did that too. The frustration can sometimes be more than we want to handle.

Turning in the shower with my eyes closed:eek: nope!!!!! Just the other day I did that and I guess I should be thankful my apartment only has a shower without a tub, when my head connected with the shower door, I didn't fall. Considering I am recovering from surgery, it's a good thing I didn't fall.

A few weeks ago, we had a nasty storm go through this area and our power went out. Our office has no back up lighting, bless my boss' heart, he doesn't think we need it! Well, my part of the office was totally black. The ins person and I were standing at my desk discussing a patient when the power went out--now I know what happens to me in total darkness. I was totally disoriented, totally off-balance, I could feel myself swaying--thank God my desk was right in front of me! The ins person grabbed my arm and led me out to the front doors and light, by this time, my claustrophobia had kicked in and I could hardly breathe. When they finally got me settled back down, the doc I work for asked exactly what I felt and then he says, "You tell your neuro exactly what happened, he needs to know this!"

I am never in total darkness. I do know I can't close my eyes and stand steady, yet this was a true test of what happens to me in the dark!!!! Not the way I would prefer to be tested, but I guess now I know!!!!!:wink:

I'm single and I give both the suffer and the spouse credit. Its a hard situation to be in. Sometimes I gets so anxious little things just bother me so much. I can't imagine living with someone. For the other its hard to know what to say and I often feel if people would just listen rather then speak it would be better. Sometimes there is no right words. I know for me and my mom we worked on ways she can help me.She is amazing though but we did family therapy and I know I suggest therapy a lot but encourage all too. I know in my ed recovery people always say the wrong thing so using my voice and reminding myself that people mean well and just don't understand. Its impossible but trying to say they care. Also for me not stepping into the fire I call it. I know not to get myself into certain situations or battles. Also for me to allow myself to feel. A lot of times my family would say you shouldn't feel that way but a feeling is a feeling and we all have the right to them. No rights or wrong there. Hugs to all.

Well, Bob. After my surgery, I will invite you to come down to Texas, if you would like. I will make you some brownies (no, not the funny ones), you can prepare a salad, hubby will grill and you and I can see who can out swear who while we are fixing dinner and dropping it all over the floor... :) :) :)

Cathie

My Aunt Angie called me today to ask about my husband. They all know he has neuropathy but they DO NOT UNDERSTAND FULLY WHAT THIS IS. I've tried many times, but forget it, they don't get it.

So now that I also have diabetic neuropathy, I also know what Alan has been through. So I'm explaining to my Aunt Angie about neuropathy.,

She goes, "exactly what is this neuropathy thing". So I gently explained in layman's terms (she's 83) about the myelin sheath on the nerves and the mixed signals between the nerves and the brain.

Believe me, I put it as simply as I can. Then I got to the part about the feet buzzing and pins and needles and burning. And she said and I quote: "Oh, neuropathy is not painful then??" I replied "where on earth did you get that idea??" She said 'but you just said it's buzzing, like the sound bees make".

So I said "yes, your feet buzz". And she replied 'but you are only hearing the buzzing, you are not feeling anything, you are hearing your feet buzz, right, that's what neuropathy is, right?? you hear your feet buzz"???

I just looked at the phone in my hand and said "Aunt Angie, you feel it, you don't hear the buzz, you feel the buzz", and she said 'what do you mean, your feet buzz???" and I just went BZZZZZZZZ into the phone and said 'Imagine your feet having a bunch of bees crawling all over it??" and she said "Oh my god, I had no idea". Then I said 'yeah, well, at the same time, imagine stabbing, and burning". And she said "oh my god".

She was going OH My God, until she hung up. Finally, somebody learned about neuropathy.

One at a time people!!!!!

I wouldn't 'bet the farm' on it!
Here today.....gone tomorrow,
83..... or 23 !!
Believe me, they ....... Just Don't Get It !

Pn
 

Bob, I was in the hospital couple weeks back for a procedure, and the NURSE was giving me a bad time - "how can you have numb feet" and at the same time say they hurt and buzz - (I wanted to say, go read your nursing manual-grrr) but yea, sometimes they never get it - unless it happens to them!:(

Cathie,
My father-in-law lives in "Big Sandy, Tx" .
I've never been to his place (my wife goes, with her son, sometimes),
but I have been told its "kinda warm" (over 100 degrees) in the summer.
I'll come on down to your place and see if the 5 second rule applies...
(on the floor for less than 5 secs- its still OK to eat) as long as we
can bend over to pick it up..(ohh, my back !).. without it falling
out of our fingers 3 x, before finally getting hold of ....whatever it is.
:D:cool::winky:

Cathie,
My father-in-law lives in "Big Sandy, Tx" .
I've never been to his place (my wife goes, with her son, sometimes),
but I have been told its "kinda warm" (over 100 degrees) in the summer.
I'll come on down to your place and see if the 5 second rule applies...
(on the floor for less than 5 secs- its still OK to eat) as long as we
can bend over to pick it up..(ohh, my back !).. without it falling
out of our fingers 3 x, before finally getting hold of ....whatever it is.

Aaahaa... You and my husband will get along just fine... He also instructed me in the 5 second rule, though I have had a little difficulty adjusting to this. Unfortunately, it is kind of hard to wash off brownies, but you can swear away if you drop half the kitchen, and no one will complain.

Keep hanging in there, Bob.

Cathie

You can say that again. My gramps is 84 and my friends are in the 20's both have no clue. I wish if people had no idea they would just listen then give advice or stupid remarks. I'm a big card person I send them to everyone. I love too and when I get one just even saying hang in there it makes me feel so warm. I wish people who are "normal" you know what I mean would just stick to that rather then add sadness or aggrevation to the pain. Like almost I can just will myself to make the pain go away or get better. Sure I love living like I got shot in the legs. I guess for me I try to focus on the people who do support me like my mom and you guys but the bad seeds do stick out. Hugs to all.