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Old 08-22-2011, 10:11 AM   #31
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Re: Helping others understand about chronic pain

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Originally Posted by Pain in NH View Post
Support is so incredibly important. Having Neuropathy is lonely and devastating. Before my eyes are even open in the am my 1st thought is about the pain.

Thank you Aussie,
I wanted to bump this back up to the top
I totally agree w/you.

Let you I'm in pain from the time I wake up until the time I fall sleep. It is never ending.

I'm VERY thankful that I have Kath in my life. She is my ROCK! and helps me daily w/my PN. I also have my family, a LOT of friends and this board to help me make it through my day and I appreciate all of the help.

This is a great thread.

Hope everyone has a great Monday.
J

 
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Old 08-22-2011, 05:18 PM   #32
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Re: Helping others understand about chronic pain

Aussie, you are not alone in wanting others to hear your words.
I send support to you and thank you again for all that you have shared here! Thanks, hug and empathy.
Peace

 
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Old 08-23-2011, 08:34 AM   #33
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Re: Helping others understand about chronic pain

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Originally Posted by Aussie100 View Post
Hi daisy, although I am recovered from my nerve damage these days I can very well remember the isolation and lack of compassion off others that just didn't get it, trouble with neuropathy it doesn't show pain, like if someone poured boiling hot oil over someones skin, but as the good people know here it feels the same just doesn't show it, I found these words in this letter helpfull to those who persisted in saying hurtfull remarks to me.

take care
Aussie
I used to tell others it feels like toes and feet are boiling in hot oil! : ]
then there was needles and stabbing involved. Plus addition of twitching.
Now numb bummer!
Peace

 
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Old 08-23-2011, 08:37 AM   #34
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Re: Helping others understand about chronic pain

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Originally Posted by Capewind View Post
I used to tell others it feels like toes and feet are boiling in hot oil! : ]
then there was needles and stabbing involved. Plus addition of twitching.
Now numb bummer!
Peace
that is a good way to put it....I'd add shooting pain like lightening bolts at times.

W/O the support I have, I'm not sure how I would get through this on a daily basis.
J

 
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Old 08-23-2011, 08:42 AM   #35
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Re: Helping others understand about chronic pain

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Originally Posted by RisingParrot View Post
that is a good way to put it....I'd add shooting pain like lightening bolts at times.

W/O the support I have, I'm not sure how I would get through this on a daily basis.
J
I'm with ya, less the support!
Agree to keeping this thread up!
@Aussie, your the man! LOL

 
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Old 08-23-2011, 08:47 AM   #36
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Re: Helping others understand about chronic pain

Quote:
Originally Posted by Aussie100 View Post
Whilst some family members & friends can be supportive having PN but far to often others clearly don't understand nerve pain at all, maybe if they read this it may help them understand.

A Letter to Normals From One in Chronic Pain:


Having chronic pain means many things change, and a lot of them are invisible.
Unlike having cancer or being hurt in an accident, most people do not understand even
a little about chronic pain and its effects, and of those that think they know, many are actually
misinformed.


Aussie, just copied this and e-mailed to daughter.
Courageous act on my part.
I will keep the thread posted on her reaction if any.
Peace


In the spirit of informing those who wish to understand:

These are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn't mean I'm not still a human being. I have to spend
most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably
don't seem like much fun to be with, but I'm still me, stuck inside this body.
I still worry about school, my family, my friends, and most of the time, I'd still like to hear you
talk about yours, too.

Please understand the difference between "happy" and "healthy".
When you've got the flu, you probably feel miserable with it, but I've been sick for years.
I can't be miserable all the time. In fact, I work hard at not being miserable.
So, if you're talking to me and I sound happy, it means I'm happy. that's all.
It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better,
or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!"
I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that,
you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that
I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes
yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed,
or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo.
I never know from day to day, how I am going to feel when I wake up. In most cases,
I never know from minute to minute. That is one of the hardest and most frustrating components of
chronic pain.

Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating",
"being sociable" and so on, it applies to everything. That's what chronic pain does to you.



Please understand that chronic pain is variable. It's quite possible (for many, it's common) that
one day I am able to walk to the park and back, while the next day I'll have trouble getting to the
next room. Please don't attack me when I'm ill by saying, "But you did it before!" or
"Oh, come on, I know you can do this!" If you want me to do something, then ask if I can.
In a similar vein, I may need to cancel a previous commitment at the last minute.
If this happens, please do not take it personally. If you are able, please try to always remember
how very lucky you are, to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better,
and can often make me seriously worse. You don't know what I go through or how I suffer
in my own private time. Telling me that I need to exercise, or do some things to "get my mind off of it",
may frustrate me to tears, and is not correct.
If I was capable of doing some things any or all of the time, don't you know that I would?
I am working with my doctors and I am doing what I am supposed to do.
Another statement that hurts is, "You just need to push yourself more, try harder".
Obviously, chronic pain can deal with the whole body, or be localized to specific areas.
Sometimes participating in a single activity for a short or a long period of time can cause more damage
and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense.
You can't always read it on my face or in my body language. Also, chronic pain may cause
secondary depression (wouldn't you get depressed and down if you were hurting constantly for
months or years?), but it is not created by depression.

Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now,
that probably means that I do have to do it right now, it can't be put off or forgotten just because
I'm somewhere, or I'm right in the middle of doing something. Chronic pain does not forgive,
nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought,
and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood,
if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better.
This can involve side effects or allergic reactions, as is the case with herbal remedies.
It also includes failure, which in and of itself can make me feel even lower.
If there were something that cured, or even helped people with my form of chronic pain,
then we'd know about it.
There is worldwide networking (both on and off the Internet) between people with chronic pain.
If something worked, we would KNOW.
It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure,
then so be it. I may take what you said and discuss it with my doctor.



If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact,
I try very hard to be normal. I hope you will try to understand. I have been, and am still,
going through a lot. Chronic pain is hard for you to understand unless you have had it.
It wreaks havoc on the body and the mind. It is exhausting and exasperating.
Almost all the time, I know that I am doing my best to cope with this, and live my life to
the best of my ability. I ask you to bear with me, and accept me as I am.
I know that you cannot literally understand my situation unless you have been in my shoes,
but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you, people who are not sick.
I need you to visit me when I am too sick to go out.
Sometimes I need you help me with the shopping, the cooking or the cleaning. I may
need you to take me to the doctor, or to the store. You are my link to the "normalcy" of life.
You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again,
just as soon as I am able.

I know that I asked a lot from you, and I do thank you for listening.
It really does mean a lot.

Aussie

 
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Old 08-23-2011, 08:48 AM   #37
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Re: Helping others understand about chronic pain

Quote:
Originally Posted by Capewind View Post
I'm with ya, less the support!
Agree to keeping this thread up!
@Aussie, your the man! LOL
Support is very important!! Kath is my ROCK!!! and between my friends I have coast to coast, my family and here I'm covered

Well know you have a LOT of it here...there are a bunch of others dealing w/what we do so reach out.

I agree....Aussie Rocks!!!!
J

 
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Old 08-23-2011, 04:13 PM   #38
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Unhappy Re: Helping others understand about chronic pain

I just want to say thanks 2 all of u I never realised how many people where going through chronic pain!I struggle so much with 4 young kids who have 2 help me & be a parent to me except for the 2 babies!Alot of problems were discovered in my last pregnancy I feel like im a 39yr old woman trapped in a 90yr old body!I look very young for my age & always look well so people have no idea how bad I am until they see me on my stick shuffling along with tears rolling down my made up cheeks & im so slow everything that took me 5mins now takes me nearly an hour even in sleep i am not safe because the pain wakes me very few hours!Why cant the doctors help me instead of sticking me on high morphine patchs tons of valium sleepers pills pills pills!How do u all cope?How do u get a second opinion in london area?Anyone know?I feel hopeless helpless a rubbish mum even tho my kids love me 2 bits I am desperate for anyone out there to give me some advise I have multiple health probs!My spine has 3 diff spinal injuries huge benign tumours on gallbladder/ spleen/ IBS terrible pelvic abdominal & back pain!Knees already had major surgery but the pain in both knees came back with a vengance & dislocating themselves whenever they feel like it.I also have a few other personal health probs going on its a nitemare!!!!Corinne

 
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Old 08-24-2011, 08:39 AM   #39
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Re: Helping others understand about chronic pain

Corinne, know that you are not alone...there are many out here w/maybe not the same issues but issues that make us all feel the same feelings.

I'm sorry you are in a bad place right now...I'm HOPING you have a great support group and will say that if not we here on HB are here for you so please reach out.

I know the feeling of the pain/and frustration of what it does to us...I've had PN for years and use a walking stick to get around..that said I also am happy I am able to get around unlike a lot.

Try and stay positive and hope you find the answers to make feel better.
J

 
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Old 08-27-2011, 05:42 AM   #40
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Re: Helping others understand about chronic pain

Quote:
Originally Posted by RisingParrot View Post
Support is very important!! Kath is my ROCK!!! and between my friends I have coast to coast, my family and here I'm covered

Well know you have a LOT of it here...there are a bunch of others dealing w/what we do so reach out.

I agree....Aussie Rocks!!!!
J
Just want to make sure visitors and all get this.
Back up, thanks to Aussie.

 
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Old 04-10-2012, 04:46 PM   #41
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Re: Helping others understand about chronic pain

Hi Aussie100, this letter made me cry. You could not say it any better. Take care and thanks for writing this. June

 
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Old 04-14-2012, 12:50 AM   #42
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Re: Helping others understand about chronic pain

Ok,whoever wrote this has been in my mind.lol I feel like this everyday for 12 years,it was a perfect way to put it.

 
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Old 04-30-2012, 05:43 PM   #43
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Re: Helping others understand about chronic pain

Dear Aussie, You say you are recovered as much with the nerve damage. Please, please tell me HOW?? What did you do? How did you do this? My damage is in my legs. I stumble, I hang on to things. I walk with my cane, my walker. At the grocery I hang onto the cart. Getting in and out of the car is a hard, and long process. I have not driven a car in 5 years, because of all the hardware in my neck, front and back, I can not turn my nect good enough to see on coming traffic. Thank the Good Lord for my husband. But, I will not give up. I will try to drive again, some how. I am a 58yr. old woman, whos body feels like 80. Any advice from you would be a help. I do take Percocet and Opana EX. It helps, but each day is a struggle. God Bless. Janatee

 
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