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

I was at Physical Therapy,and i thought about you. First 5 different
Drs.crowded in a small room,trying to out talk each other,and i thought
about how many times i felt lonely,my tape reorder was on,so i thought
when there done they will stare at me.3days in a row to one Dr. than
another in 100 degree heat,and i kept thinking about your words. I
this time when there done, and give me that stare. Well i'll just tell them
what you said even though i knew what they would say. They will
Sue we have some new pills for depression..

I opened my mouth,and the brace Dr.he was new,said do you mind if
I lift your ankles,i promise to be gentle , old i'm sorry that right one would
hurt to much so just let's just try the left. Just do what you want to i don't
care, i said in a snottie voice. He stopped sat down on the floor,and
took your words and mine and others right out,i didn't get a chance. You
have been at this a long time,you must get lonesome. Why would you
say that,what a thing to say i'm not lonely,i hurt,i'm sick of this but lonely,
then i noticed his hand felt different.,i looked at one of those Bionic
hands. I've seen them in hand therpy. But his was not the same,your
hand is different,i just mean your's looks,i don't know. I had a lot of
time to think,i got sick of friends feeling sorry for me and the one's
one's who said well what's wrong with you. You know i would get quiet
and think talk to me the way you use to,i'm human i'm lonely. I believed
he knew what we have felt. Imagine, i asked him how he dealed with it,
well first came anger, depression,pain oh boy pain,and a lot more anger.
But you got all this people around,your back to doing what you wanted
to do,why do you still feel lonely.i did what so many people do to me i
assumeed he ws just fine. He told me they had to move on,and we would
talk later. The other Drs. look relieved.So i guess we will vent, NT,people
and continue to help each other. This has been a good forum,it' been
good to say i feel lonesome and i 'm with people who knows what that feels
like. And i've been feeling that way for a while now. Sue
I get tired so easy to.

David, I couldn't agree more about cats. I have a very loyal Tom cat who is by my side whenver I have to lie down from pain. He will be with me all day if needed. It is amazing how much company and comfort they can be. I know people feel the same about their dogs.

I am another that agree about cats, i love dogs too but cats seems to sense when their owner is not well and i have noticed they do sit near you as David mentioned, i think they try to comfort you, mine is 18 years old with an appetite like a lion , they are a good pet.

I've had dogs all thru my 'growing up years' and it seems that all
of my girlfriends and 2 wives were cat people. so I've had both,
most of my adult life. Currently, I live with a 2 1/2 y.o. rescued
from a laboratory cage Beagle, and a rescued (abandoned when he was 6 mos old) 17 y.o. 'kitten'.(At least he still thinks he is).
I'm 'with you' as far as cats go. Sometimes they want nothing else
other than to just be close and touching. The Beagle has the same idea, and it's funny to watch the jealousy between the two- as to who gets the same spot next to me -first..... when I sit down on the sofa.
Cats can be very comforting (the purring gets to me), and
so can stroking a Beagle or a Bassett's ear and head
(so very, very soft and comforting)

Dear friends,

Thanks to all of you for the ideas, advices and warm words.
I feel better today... and I understand that I have a long way to walk.
Stay there for me.

Good weekend

((((((((rina))))))))

Hi rina,

It's really hard when you don't want to bother people, but still have a tremendous need to explain how you feel and what is going on with you.

What I found, though, was that talking didn't help as much as B12. (I had a really excellent therapist through the Division of Vocational Rehabilitation) I don't know if you are taking the Methylcobalamin (that's the best form of B12 to take) or not, but if you're not, it's something you should look into.

On my site I have a lot of the symptoms of low B12. If you read those symptoms and you have other symptoms besides depression, then you should try B12 replacement.

Just to be clear, depression can be a symptom of low B12. There's a lot of research that shows this to be true. I have a lot of excerpts relating to depression and low B12 on my web site.

Another thing, is that the longer you are depressed, the more stressful it is, and that depletes B12, too.

I don't know how bad your pain is, but mine was quite bad... then after just a huge amount of B12 replacement, it went nearly away... I say "nearly" because at times when there is a lot of stress I get twinges of pain that make me run and have another B12 shot... because I sure don't want it to get the way it was before.

If you decide to try B12 replacement, be sure to get the lozenges of Methylcobalamin that you dissolve under your tongue.

I've written to Wal*Mart many many times to carry B12 in the sublingual form, and they do now, but I didn't ask them to carry Methylcobalamin, so they carry the cyanocobalamin form, which is not as quick or effective.

You'll probably need to go to a health food store to get it.

((((((((rina))))))))

(you're going to be so happy, I think, if you try the methylcobalamin)

((((((((shiney sue))))))))

Gosh, you account of the doctor's visit struck me. I'm so sorry you are in so much pain.

(((((((((shiney sue))))))))))

You write so many nice messages on this board that I'm sorry you still feel lonely... though it's hard to mainly get contact through boards, as opposed to being out and about seeing people smile back at you.

((((((((((shiney sue)))))))))))

just to let you know that I'm thinking about you.

I can so relate and sorry for everyone else feeling this way too. I think for me before this issue I had this and svere depression/anxiety so this pn doesn't help. I think a person can feel lonely even with many supports because sometimes the sadness/confusion is within. I have been working on my self coping mechanisms. I find making myself do as much as possible whether it go to a book store,sit outside so on. That if I get asked to lunch for ex and feel like crap try to push myself and just explain how I feel. Its hard as hell but can help the mood and sometimes even the pain. I do feel like reaching out and even if they don't understand still using your voice. I encourage support groups which for me I'm still working on finding for pain but have been in the past for depression/anxiety. I also encourage the therapy. I'm also going to look into biofeedback which I think is so helpful and really recommend. I also am working on trying to be positive which is not my strong point. I tend to focus on what I can't do rather then what I have accomplished and goals for the future if that make sense. Also I try not to compare which has been hard. I see my friends always partying and carefree and I often feel jealous. I'm glad there happy but look for that inner peace. I have to find my own peace. Sending thoughts and I wish we all lived near. You all have been amazing support and show so much strength. Your amazing role models.

Hi daniella,

One thing you wrote was so like what I find for myself, so often.

Once when I was living in London in the derelict building I was watching a music show that had these little Felix the Cat cartoon features that were like stars in the sky... I can't explain it.

Anyway, one night the cartoon asked, "Have you always been a failure?"

And I thought, "I should just admit it."

And then the cartoon changed and it said, "So why worry now?"


It was such an eye opener for me, because the fact is that I've mostly been successful. Like in University I was selected to be on the University Center Board without me trying to get the job... I was Cultural Committee Chairman and I had a great budget so heads of departments would come to me to bring in speakers and performers they wanted to have at our school, even one Dean came to me. And I was voted Chairman of the year because so many of the students attended my meetings. (Mainly because I'd decided that I needed a lot of the senior and junior guys with skills on my committee, and I didn't see them coming to talk to each other, so I also invited a lot of the Freshmen girls to join...

Etc.

And even in the derelict building, when I had a 7 come 11 party, in the hopes I wouldn't be deported in between those dates, the managing editor of the Sunday Times and his writer wife came... and others... Oh, I think the man I typed the investigative journalism book for, Charles Raw, came... It was great... there were even more fun people there... gosh... one of my friends was so handsome, I mean just extraordinarily so. And his father had been THE puppet guy on telly in England when we had Charlie McCarthy and Mortimer Snerd...

When he was a tiny child, just a baby really, his father had dressed him up as Punch, like in Punch and Judy, so that when he jumped up and down in his crib he amused his father...

But I don't ever remember seeing Jonathan when he wasn't in a pose...



Sorry.... I got carried away. Who would think living in a derelict building would turn out to have such good memories?


Okay, so now I am beginning to think that the reason we don't remember our accomplishments and get depressed is low B12...

It's been clearly shown by research that low B12 affects memory and causes depression...

Right this minute my vision is very blurry -- there's so much stress for me again -- yet I know that if I go give myself a B12 shot, then in a couple hours things will literally look more clear.


((((((((daniella)))))))))


Also, I'm sure my B12 level in terms of what is in my blood, is many thousands of times higher than most people's.

But I also know that I had decades of depletion to deal with... and in ten years my fingernails have become quite smooth, showing that there has been a lot of replacement and repair deep within my body....

But stress just continues to eat it up. (Darn it!)



((((((((((daniella))))))))))))