How do you explain to people why you cannot do certain things?

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Lonelyheart25
Regular Member


Date Joined Dec 2006
Total Posts : 22
   Posted 7/28/2008 4:50 PM (GMT -7)   

How do you explain to people why you cannot do certain things?

 

I’m young and I look “normal” so people always assume I can do all the things that guys my age do.  Trying to explain chronic pain to a young adult is futile because most young adults are very healthy and cannot empathize.  In addition, I don’t like to sound weak or pathetic so I try my hardest not to show any signs of impairment or pain while in public. 

 

Instead of explaining chronic pain, I typically do everything in my power to avoid people so I don’t have to.  The only people who know the true extent of my pain disorder are my parents.  I avoid forming relationships with most people because I don’t want them to know I’m not as tough, healthy, confident and athletic as I seem to be.  I can pretend to be OK for short periods of time … But if anyone hangs-out with me long enough they are bound to find out just how much chronic pain affects my life.  Because of this, I avoid forming close relationships with people.

 

As long as I make short, medicated, planned public appearances… I can give people the perception that I’m relatively “normal”.  Since people think I’m “normal” they accept me and don’t view me as weak…. But if people found out how much chronic pain has impaired my life, they would inevitably reject me.  I work around and attend college with relatively young, healthy people who would not look favorably upon a man who cannot engage in the typical activities that young adults do.  And even elders would reject me because my disorder has no verifiable, definitive cause or striking symptoms. 

 

It is only considered acceptable for a young man to have limitations if his disorder/disease is both verifiable and visually profound.  For example, a man with severe Cancer, who does not work full-time, would NOT be considered weak or pathetic since his disease is both verifiable and visually profound…. But a young man, like me, with an ambiguous chronic pain disorder is considered weak and pathetic by society because his disorder is not verifiable or visually profound.  

 

In summary, I avoid people so I don’t have to explain my chronic pain…. And I don’t want to explain the full extent of my chronic pain because I don’t want people to form negative opinions about me and/or abandon me. 

 

I’m not sure if this is the best way to go about things … so I decided to post the question here to see what you-all do.

    


hurting
Regular Member


Date Joined Jun 2008
Total Posts : 59
   Posted 7/28/2008 5:03 PM (GMT -7)   

Lonelyheart---

I'm so sorry that you deal with this at such a young age.  I struggle with this as well.  I'm not as young as you (38), but I definitely don't have a foot in the grave either...Personally, I would let some of the closer friends that you have in on your "secret".  People that do not have chronic pain do not GET chronic pain.  I explain this to them by asking if they have ever had a migraine.  It's the same principle, basically.  If you've never had a migraine, one simply think it's a bad headache; which it TRULY is not.  I have found that when people ask me what's wrong (keeping in mind that these are people that do know me), I've found it best to just keep it simple.  I simply say, "It's not a good day" OR, "it IS a good day".  That way, I don't feel like I'm burdening or "whining"...it's short and sweet and to the point.  I get tired of telling the story over and over; I can only imagine that people get tired of hearing it.  I hope this helps.

wishing you a pain free second, minute, hour, day or whatever you can get---

k cool


Scarred_for_life
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Date Joined Jul 2008
Total Posts : 1559
   Posted 7/28/2008 5:19 PM (GMT -7)   
Lonleyheart;

I think just about everyone here suffers from this problem. I am not young by all means (44) but I too am not dead yet and feel that if people cannot handle being around me because of my disability then fine...their loss. Hurting is right its not a contracted disease nor is it something that you should be ashamed of. You did not ask for this to happen to you, but it has and all of our lives we are taught that if you show pain you show weakness. But that is not true. I have been suffering with CP, DDD, FBS for the last 8 years and if I am in pain then I speak up about it. Many of my friends are quite sympathetic to my disability and have offered lots of support as well, but ya some have left me for they feel that I am "Whining" or whatever.

To these I say "Goodbye" and I hope they are not ever in as much pain as I am. To the ones that have stuck by my side through the years of this condition I love them dearly. My best friend of 40 years (we grew up together) has offered me her support and help in whatever I need and I love her to pieces. But until people realize that CP and other problems are not something that we can just whisk away at a moments notice I too find it hard to get close to people.

Hoping you have a relatively painless day...

Scarred

P.S. Welcome to the HW forum Lonely I hope your time here is wonderful.
HEALTH ISSUES: Herniated discs at S-1-L5, L5-L4, L4-L3. Two level fusion (2000); one level fusion (2002); Revision at L4-L3 (2003). Diagnosed with Failed Back Syndrome, Permanent Nerve damage and Chronic Pain

Medications:

Kadian, Lexipro, Percocet, Temazapim, Lunista, and Robaxin.


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 7/28/2008 5:44 PM (GMT -7)   
Lonelyheart,
 
I can completely relate to your situation. I too am young, it sounds like of similar age to you, and I too have found it hard to communicate. My friends will be sympathetic at times, but they never truely understand the extent of my pain, which is especially frustrating. And frankly as much as they care, they don't care. People, especially young people, I've found, are often too involved in their own lives, and they get tired of hearing about other people's complaints. So, similarly, I've also become fairly reclusive.
 
Fortunately, I too have my parents to support me, but even at times I feel that they do not understand what I go through. One of the best support systems for me has been my animals, especially my dogs (hence the name), they don't judge and only offer unconditional love and support. Although unfortunatly, being away at school, I don't see them as often as I would like. Chronic pain is a lonely disease. I guess you just have to become your own best friend, and hope that you can find those lucky few who will accept you for who you are, pain and all. It goes both ways: you can only accept people for who they are, and make the best out of it. The ones that are truely your friends will stick by you no matter what.
 
Hang in there.
 
-caninesupport

PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 7/28/2008 6:20 PM (GMT -7)   
Hi, lonely,
And welcome - if I've not welcomed you before. I can't always count on my memory!

I think I'm the oldest to post here so far, but even at age 58 I could have written each one of the above posts as my own. It is easy to isolate. As a matter of fact, I think it takes a serious effort NOT to because not only do we have to deal with people who don't get it - and they come in every age, size, gender, etc. - but we also have to deal with the pain. For me, I guess that's why I come here so often. I have truly found a group of people who understand. Who "get it" without my having to repeat the details over and over. Maybe that will eventually give me just a tad more energy, and I'll feel ready to try to find ways to be around and meet new people.

If I were much younger, I would really challenge myself to find others who understand, because you don't want to live your whole life alone, right? I wish I was married, like many of the people here who have a supportive spouse. It would make so much difference, but I think many of them were married before their chronic pain developed - but then, I don't know.

Have you thought about working with a therapist who deals with chronic pain patients? He/she might be able to help you navigate some of these challenges. But I think even understanding health professionals don't always get it - and I can say that because i am one, and I now see it from the inside out and it's truly different (I'm not a doc). I read a book by a doctor who became chronically ill and he said he feels those in the "land of the well" really can't understand those of us with chronic pain/illness. But here, you won't have that problem!

PaLady

Scarred_for_life
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Date Joined Jul 2008
Total Posts : 1559
   Posted 7/28/2008 7:37 PM (GMT -7)   
Good post PA. I could not have said it better myself. I try hard to interact with people who in the broad spectrum of things "Don't get it" and though I have to repeat myself a million and one times it sucks to have to do it. But then again if I can reach one person who wishes to know more and feels that extra push to see things the way I do, then its been worth it just to spend that extra time explaining things.

Hubby has been my rock through all of this and I think that if I did not have him by my side I would be quite lonely. He takes me to my appts., talks to the doctors about how he can help me through this and is there when I am depressed or sad about my pain. Some may think that I am lucky to have him by my side, but I think I am blessed by having a husband that understands what it is like to go through so much pain and deal with it on a basic level.

Until next post.........god bless you all and I hope this night brings you all a little more rest.

Love

Scarred
HEALTH ISSUES: Herniated discs at S-1-L5, L5-L4, L4-L3. Two level fusion (2000); one level fusion (2002); Revision at L4-L3 (2003). Diagnosed with Failed Back Syndrome, Permanent Nerve damage and Chronic Pain

Medications:

Kadian, Lexipro, Percocet, Temazapim, Lunista, and Robaxin.


tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/29/2008 1:37 PM (GMT -7)   
All alone: I f elt this and that way for a long time till I got tired of feeling sorry for my self. I do not know where You live so if You reside in a rural area this advise i am giving maybe hard to follow but seek out others with simiiiar problems just like You found us and welcome. You have friends here that understand what You are going thru. Please find support groups in your area if the first one doesn't work don't give up try and try again you will find people that share almost the same difficulties as You. funny thing is will You accept them ?? I had a hard time in the very begining but now I really look forward to our meeting. Most people think that Support Groups sit around and talk nothing but about nothing but being sick, with our groups we are sick but not "ill" type of sick we are sick with our funny humor. You will find humor is the best pain medicine and antidepressant available.
Try and get out as much as possible, Please share with us your pain. Again welcome, tom
Tom Lasko


PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 7/29/2008 1:47 PM (GMT -7)   
Tom,
As usual, you bring up new and interesting points. Will we accept others with disabilities? Very insightful. We all grow up in a culture where there is huge stigma against chronic illnesses - physical or mental. And if we're honest, we have to admit we have learned some of it. So in asking others to accept us, we have to challenge our own inner biases, right? May seem like a no-brainer, but how did you and the group work through this, Tom? Did you discuss it openly, or was it something you worked thorugh in private?

PaLady

tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/29/2008 2:28 PM (GMT -7)   
Hi Lady: Great question. You made me ponder ? ? I believe there is help in numbers, I myself took months/years before I lighted up and let my true self come thru. Now i am the 1st one to tear up. New members are asked to share their problems then we try and move on right away so we do nor dwell or depress our new friend. We move thru our group sharing with our new friend our difficulties person by person then move on to try and do something fun. New members questions, problems are dealt with one on one with all of us as we socialize. Should I miss out on speaking to a new member, I will email or call just to "break the ice" with a new person.
Did i answer Your question ?? I've read Your question over and over. After my accident I was a mental mess ! I am still filled with rage but find my rage can be controlled
not by Zombie medications but by talking and ( doing what we do ) somehow calms me. Being with others watching body language ( eyes filled with pain ) members over medicating ( drunk with meds ) seeing others with bruises from falls, listening to complaints , simply knowing God just did not pick me out to suffer helps me. Guess i am rambling did I ever answer Your question ?? Your Pain friend for Life, Tom
Tom Lasko


tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/29/2008 2:34 PM (GMT -7)   
Hi again my Pa Lady: You really made me think ? Yes I did not want to accept not only my problems but others with disabilities also at first. Then i met really nice people and was able to see that there is "life" in pain.
Still pondering ? ? ? ? Your friend in pain and life. tom
Tom Lasko


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/29/2008 2:37 PM (GMT -7)   
I don't know if we're hijacking lonely's thread - Lonely -do you mind this tangent on this thread or should we start a new one? It does seem relevant.

I just wondered - did you have trouble accepting others' disabilities, differences at first? Did others in the group? Maybe it's tied to self-acceptance (could very well be true) and seeing ourselves as part of the human condition, which means part of all that can happen to human beings. I think most of us (myself included) have the "it's not going to happen to me" belief....until something does.

Now I'm rambling!

PaLady
p.s. I just read your second post. We were writing at the same time! Keep pondering. Got me pondering too.

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 7/29/2008 2:58 PM (GMT -7)   
You know that brings up another point. I have always tried very hard in the past to keep an open mind and care for people that had disabilities, never thought that I'd go through one myself. IMHO people are human by nature and the extreme pain that one feels is directly related to all those around you. I have to believe that their are some out there alike to me and that I will find someone that can understand my point of view, but then on the other hand I think of the times that I have spent alone and how lonely it felt to be alone without anyone to talk to about this. Now I realize that whether we are or are not in pain, it is easy to blame ourselves for our problems. I went through I think the five stages of grief when I first found out that I would never be the same again. First I was angry...trying to blame everyone else for my problem....then I was sad cause I thought that this was my fault and that if I had only not taken the job that maybe I would have been ok. Then I went through a period where I denial where I thought that things had to be fixed. I went through bargaining, where I bargained with the good lord upstairs for more time with a healthy back. Now I am at that acceptance stage where I have accepted that I will never be the same again and that gee if I can't fix the problem I will learn to live with it as I am.

It is easy to feel alone when you are plagued with pain, but accepting your limitations and dealing with the issues is quite hard to do. I still have points where I blame myself for my troubles, but then I realize what I am doing and quickly change my thoughts. The hardest part of this whole thing I think is that I have to live with this pain and that if I do not take the initiative to be more aware of what the docs are telling me and work with my pain management then what have I accomplished?

On a more hurtful note I just got word from my SS disability that the judge that heard my case still thinks that I am not disabled. So we are on to the next stage.
HEALTH ISSUES: Herniated discs at S-1-L5, L5-L4, L4-L3. Two level fusion (2000); one level fusion (2002); Revision at L4-L3 (2003). Diagnosed with Failed Back Syndrome, Permanent Nerve damage and Chronic Pain

Medications:

Kadian, Lexipro, Percocet, Temazapim, Lunista, and Robaxin.


Lonelyheart25
Regular Member


Date Joined Dec 2006
Total Posts : 22
   Posted 7/29/2008 7:42 PM (GMT -7)   
:-)  Thanks for your comments and support!

CPnewbie
Regular Member


Date Joined Jul 2008
Total Posts : 38
   Posted 7/30/2008 5:35 PM (GMT -7)   
Hey Lonelyheart ~ I am new to this site a newbie to CP but I have been so grateful to all these folks for their time and advise and they are right, it's great to come to a site where others understand and you don't really have to say much, just by being on the site they know you are looking for someone to share this crazy feeling with! I do know that people are sympathetic only for a brief time and they are not sure what to say after that. I don't tell very many people anymore that I am in pain. As they said above I just say it's a rough day or that I didnt' sleep well. I have found though that those I choose to share with are trying very hard to get it. Right now even my own husband doesn't yet understand the "new me" can't do the same things I used to (of course, I truly don't either to be fair !) but he is trying and I know someone will understand you if you meet people you feel you don't have to impress. Does this group know of a place where you can meet/hang out with others in CP? Are you allowed to do that on this site ??
Maybe theres someone in the same place as you in your area ? Anyway, I am just glad to have you all to talk with !
Writing seems to make the pain less because I am distracted !!!
Here's to distraction from pain !!

ladyred
Regular Member


Date Joined Jul 2008
Total Posts : 191
   Posted 7/30/2008 8:23 PM (GMT -7)   
Hello Loneyheart,
 
Im pretty new to this site as well and i can say that all here have been a life saver for me.
 
One thing i would like to bring up to everyone here is that when we were are faced with a life altering change in our lives it really brings to home just how mortal we all are. Now saying that here is the flip side.
 
Just think back when you frist started goin through what you are now dealing with and how hard it was to come to terms with and how much of your life it has changed and how little control you really have over things and with a blink of an eye it all changes.
 
When talking with other about what I am goin through i realized the other day that it is hard for them to ADMIT that there is really anything the matter with you because they dont know how to deal with it and it also brings to light that at any given moment there own lives can be changed and there allusion of control is shattered.
 
Some the strong ones stay by your side and become wonderful people in your life but others when faced with the possiblity that this may happen to them are unable to cope.
 
At first i thought when thinking on this how week these people truely are and then i had to dig a bit deeper and realize that we are all so different and cant fault those that cant get past the fact that life is a gift given to each one of us. That we are not guaranteed anything but the second we are in and it is up to us on what we will do with each second affored us. They would rather go through life thinking that it will never happen to them because it is the only way they can surrive in this world...
 
Altho you are bodly week Loney it takes much more in this life to be spirtuly strong and emotional strong and we are the ones that show the rest of the world what STRONG is really about and that pushes them to really look deeply inside themselfs and see what there really made of and most dont want to.
 
Life is and will always be a battlefield of the mind 9 tenth of what we go through in life is in our minds and we win or loose depending on our mindset...with that said Lonely I have only one other thing to say
 
Sometimes in life we are so consumed with being hurt that we pass on chances put in our paths because of that fear..but I am of the mindset that if you dont put yourself out there then you may be passing up on one of the best blessing you ever had. weather that may be a future mate or the best friend you ever had or a support group that will be your life line to becoming all you are ment to be or the fact that you and only you will have the ablity to touch someones heart through your stroy.
 
We all have something to offer this world and the people around us but it is up to us to present that to those that are willing to take what we offer....all we can do is offer it up to them..its up to then  to take it.  It does not make us less because the body isnt hole it makes us more because what we have to give is so much more than those it cost nothing to give.
 
If it cost you nothing and requires nothing of you in return then what does it really mean...just that not much...but when it cost much then the meaning and the depth is so much more.
 
I hope i dint bore you with all this but one thing being alone has offered to be and that is the ablity to dweal and think and to try and find a way to make a mark with my life that is for the better...
 
I know that it is hard the thought of putting yourslef out there exp with ( no actual reason to explain your CP) I am in the same boat I even have to take the looks from my own family of ya right well the mri didnt show anything the doc cant explain it but yet here i am on all kids of pain med not being able to work and worrying bout how i will provide for my family.
 
But i realized something the other day and that is that I have nothing to prove to them and at the end of the day it really doesnt matter what they think because i still have to go on and deal with my pain so i  choose to look at them as i have stated above those they just cant deal because it pushes them to look at there own mortality and vulerablity.
 
sorry for being so long winded All i quess in many ways I am dealing with the same thing...
I hope that this helped a bit Lonley and to all that struggle with this same issue...
 
Lonely you are not alone and are always welcome
 

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2283
   Posted 7/31/2008 12:08 AM (GMT -7)   
Dear Lonely,

I kinda get what you are saying. I was diagnosed with Chiari at age 21 after falling down a flight of stairs (which initiated on-set of symptoms). At first, I was terrible at trying to explain what was going on. Then, I just gave up trying because it seemed to me like it just made people say a lot of stupid things. The next year, a friend of mine from childhood was diagnosed with a rare cancer that had tumors that moved throughout her body. She had frequent surgeries as the doctors tried to "catch" the moving tumors. People said a lot of dumb, hurtful things to her too, though. They thought that since she kept a positive outlook that she must not really be sick -- how's that for irony? They complained to her about their everyday problems with everything from hangnails to break-ups as if they were on par with dying from cancer.
But my friend remained strong & over the next 5 years before her death she taught me a whole lot about living. She met and married a wonderful guy and had friend after friend lining up to speak of what a wonderful gift it was to have known her. As a tribute to her, I try to share what she did with as many people as possible. I'm not nearly as good at it as she was, but still, it really changed my relationships & my outlook on life and I hope it can do the same for you.
1. Have a 30 sec, 1 min & 5 min blurb about what's going on to share with people. After that, just say you don't like to spend too much time talking about it & is it ok to talk about something cheerier?
People generally can't seem to handle more than that. I'll tell them the 1 or 5 min version the first time I say explain
it, and then use the short version as a quick reminder if they ask me what's wrong. Yes, if I have a huge set-back or
major surgery I spend a longer period of time talking with 5-6 of my closest friends. In general, though, I tell people that
I have a rare neurological condition/a rare birth defect that I needed surgery for. The surgery didn't go so well & so I
need to keep going back in for minor surgeries & treatments on a regular (like monthly or sooner) basis & I take a lot of
medicine because all of that is really painful. That seems to get across the basic idea that I can't do as much as they might
be able to do as well as more detailed accounts but without overwhelming anyone. If they say something like "that
stinks", I agree with them; then, I bring up about moving on to happier thoughts.
I also bring up the "cheerier" line when they say something dumb like "everything happens for a reason", "you need to
search your heart, ask God to reveal your hidden sins & repent" or "how can you believe in a God who puts you in so much
pain?". I used to argue with people and explain why those were ignorant & hurtful things to say, but we both seem much
happier now when I just say "oh. huh. ok. well, anyways, I don't really like to talk about it much. New topic. How
about Let's pick something cheerier this time." If they don't have any ideas, I often ask them what's the craziest
thing they've ever done. When I tell them my craziest thing, we're both laughing and they usually don't go back and
bring up the pain again, at least not in that conversation.
I personally really do need to spend most of my time talking about happier things. If you need more time to talk
about how bad things are, then maybe a support group or therapy would help. I guess it depends on what you need.
2. Tell people what you expect of them.
I tell them that I can't do everything the way I used to, but I try to change things around a bit so I can still do as much
as possible. I also tell them that I can't move so fast & that they may need to either walk slower or wait for me to
catch up with them sometimes. I also tell them if I need to just pretend everything is peachy & be the life of the party
for a while, or if I want to do a quiet activity without a crowd of people.
3. Tell them what to do in case of an emergency.
I found no one likes the gritty details & I don't like telling people what meds I'm on, so I just tell them that my
Dr's phone number is in my phone & my In Case of Emergency card is in my wallet. I've stopped telling people
that sometimes I blackout from the pain because it kinda freaks them out & most of the time it doesn't happen. The
card tells them all that & it lists my Mom's numbers, who knows all those details.
4. Believe in people.
Yeah, people do say dumb things sometimes. And there are some young people who not only haven't ever experienced
debilitating pain, but they can't even imagine what that might feel like. Some of them might never figure out
how to develop a relationship with someone who's life clearly is not all sunshine and puppy dogs. But you might be
surprised what you find if you go into the situation believing that people will rise to your expectations & expecting that there
are kind and supportive people all around you who can enrich your life & be enriched through knowing you. Before you
know it you will find some people who will be surprised as what a (funny, smart, patient, caring, friendly, sweet ... I don't
know you but I'm sure there must be something positive about you) in spite of your pain.
5. Know your limits.
If you can't do something, just say it. You don't need to give an explanation. Just say you really wish you could
join them/help them/do something yourself but you can't so could they do something else that you could participate in/
try calling so-and-so to help/accept a different kind of help/help you or offer any guidance about how you could
take care of something you can't do on your own.
6. Remember other people have their own problems.
Especially when you're in your early 20's. The whole world is before you & you think you can conquer all the
problems you face, but somehow it never seems to work out that way. Whether it's a bad grade, or a crazy date,
or car problems, or the flu, everyone is facing obstacles that keep them from achieving everything they want. Some
people are more successful than others, but then they get ulcers or heart attacks and such. Really, truly, the quicker
I started asking about & listening to what was going on in other people's lives, the quicker they were to be more
empathetic about my struggles. No, chronic pain is not like bad grades or the flu, but they really aren't likely to
understand that anyways. I've come to believe that no one can perfectly understand someone else's problems
anyways (except, in my opinion, God) -- even when they suffer from the same condition, they experience it differently --
so I had to choose between developing deep, lasting friendships or trying to get people to understand an experience I
wouldn't wish upon my worst enemy.

I've really been impressed how different the last 6 years have been compared to the first 4 (3 pre-surgery and 1 post-op -- If you haven't done the math already, that makes me 31 now). There will always be people will always say dumb things. They would have found dumb things to say to you even if you weren't in chronic pain. They would've said you haven't accomplished enough or didn't advance in your career and finances quickly enough or didn't volunteer enough or something. People always seem to think such individuals are nicer to people with cancer. I'm not sure why that example is always used for comparison for everything from chronic pain to depression to ADD, but it's just not true. Lots of people are mean to cancer patients when they're in between surgeries or radiation/chemo. When I had my crainiotomy, though, people came out for me the same as for the cancer patients. When I was in the hospital for over a week from last Christmas Eve through New Years, even the silly nay-sayers sent flowers and came to visit me in the hospital and held my hair back while I got sick and helped talk to the nurses when I would scream at the top of my lungs from the pain until I lost my voice entirely. Some of those people were my very best friends, others went back to not understanding why I couldn't keep up with the housework after being out of the hospital for a couple of weeks. But I want people in my life so I count that as their "disability" and try to figure out ways to change things around a bit so they can still do as much as possible with me -- I "walk" slower in how much I share and I "wait for them to catch up" to the level of understanding and empathy I hope to one day see in them; and I practice patience because I know more than anything that is what I need people to show me.

Anyways, though, that's what works for me. I'm kinda surprised that with most of my friends now we can talk about a lot
of things besides my pain, but at the same time I see them gently say "maybe not everyone could do that" when the group is brainstorming about things to do. It's really nice to see that & it never would have happened if I wouldn't have made the choice to have faith in them. btw -- the three people that just couldn't handle the idea that I can't do everything I used to be able to do have been more than replaced by the dozen or so new friends I have made who are happy to know me, strengths, limitations and all.

tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/31/2008 8:18 AM (GMT -7)   
Dear Francis: Read and reread Your post. Loved how You outlined how You deal with people. I for one enjoy being with others to share the problems with pain control and other discomforts. amazing thing about our support groups is that we rarely talk about pain, medicine etc and as you indicated should someone try and dwell on our problems we quickly move on to differnet subject.
Thank you for You insight and expressing Your thoughts so well. someday I hope to be able to do the same. While holding a conversation such as with our support groups i am the Moderator for all three I guess because I like to talk when it comes to writing I often find my anger/depression coming out thus I delete a whole lot of posts believing I should always try and put a positive spin on everything I write for it is easy to be negative.
Your health problems are new to me and sent me into doing research. You are a very valuable member and I look forward to reading more from You. Your friend in pain and life. tom
Tom Lasko


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/31/2008 9:08 AM (GMT -7)   
Frances,
I was also very impressed with your post - and the wisdom you display for such a young age. Of course, maybe having a chronic illness fast forwards the wisdom clock a bit.

I'm going to print it out and read it more closely. Lots of pearls in there.

And by the way, I can't remember if I ever welcomed you to the forum - but welcome, even if it's a bit belated!

PaLady

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2283
   Posted 7/31/2008 9:13 AM (GMT -7)   
tom inpain said...
Dear Francis: Read and reread Your post. Loved how You outlined how You deal with people. I for one enjoy being with others to share the problems with pain control and other discomforts. amazing thing about our support groups is that we rarely talk about pain, medicine etc and as you indicated should someone try and dwell on our problems we quickly move on to differnet subject.
Thank you for You insight and expressing Your thoughts so well. someday I hope to be able to do the same. While holding a conversation such as with our support groups i am the Moderator for all three I guess because I like to talk when it comes to writing I often find my anger/depression coming out thus I delete a whole lot of posts believing I should always try and put a positive spin on everything I write for it is easy to be negative.
Your health problems are new to me and sent me into doing research. You are a very valuable member and I look forward to reading more from You. Your friend in pain and life. tom


Tom-
I enjoy reading your posts as well. They're pretty funny, in a twisted kind of way (you know, as in "if I didn't laugh, I'd cry"). :) Donna said she has Chiari also (d_davis777). If you ever want to know more about it, I'm happy to share what I know -- I kinda got obsessed when I was first diagnosed & spend every waking hour, and a lot of the ones when I should have been sleeping, researching it.
As far as being angry, I've had my really bad days too. Tried do do some really crazy things, but in the end realized I needed to do something to make the next 40 years or so less miserable for myself. If expressing your anger/depression more to people helps you, then by all means go for it. For me, all it did was make me even more angry & depressed, drove me further away from what I loved (being around people & working with children) and led me to think horrible thoughts. Honesty is super important to me, though, and I had to work out how I could still be genuine and not just pretend everything's all "peachy-keen". Through it all I've learned to consider that my pain doesn't define me. It is one characteristic of my life. I does keep me from doing certain things, even big things -- I still desperately miss teaching and pray one day I'll be strong enough to return to the classroom -- but I've had to re-think my goals. I loved teaching because I loved being around people, sharing ideas, being creative & learning/growing with other people. I can still do those things, but in a different way now. I'm determined to fight this pain the way my friend fought cancer. In the end, she won! She didn't let it steal living her life away from her. She even threw pot-lucks & short "mini-parties" from her hospital bed because that was what she loved the most. It's definitely not easy -- but I guess the best things in life are usually the hardest won.
As far as this the posts in this group, I think they're really great. I'm kinda at a standstill right now with my doctor because we're out of ideas. I emailed him a list of questions that I basically demanded he answer at my next office visit (oops, probably not so good to piss the doctors off ;). I'm really glad to have some new ideas to throw around at my next appointment in the way of treatment options. Hoping one of them helps so I can get back to going to work every day. Thanks to all the folks who put such thought into posts & replies.

tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/31/2008 7:22 PM (GMT -7)   
Hi again Francis: I was reading another post and saw Your name and when You described your cervical problem --well-- while we both had different surgeries we both kinda have the same outcome. My entire neck was fused front and back but at the base of my skull and at shoulder level--- in lay mens terms is too weak to support the fusion and has caused my screws to come loose. I've been all over the USA to every so called expert and another surgery would make me a vegetable or kill me. To answer my question as to pain, weakness these experts have told me there is nothing "right now" they can do for me and tell me to stay off my feet ! ! then they refer me to pain management. I need to have my left knee replaced for the second time and a pain pump will be installed after the knee surgery.
Iam extremely happy to have You with us. Your pain friend Tom
Tom Lasko


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 7/31/2008 7:30 PM (GMT -7)   
Thank you Frances, your post and answer to this hard question was very very wonderful. I sure hope Chutz can put your reply up in the resourses part here so we can always look at it when we need to..Wow, Thank you!
Wow...
************************
* Asthma
* Allergies
* Osteoarthritis
* Spinal Stenosis
* Mild DDD
* Enlarged
Pituitary Gland
* Fibromyalgia
*************************

Patient: "I always see spots with my eyes"
Doctor: "Didn't the new glasses help?"
Patient "Yes, now I see the spots clearer"


Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 7/31/2008 7:35 PM (GMT -7)   
Francis: I am pleased to meet you! I am also saddened by the fact that you too have to join us on the HW forum. It's horrible when a Neuro tells you that there is nothing more that he can do to stop the cycle of pain that wracks each one of us. Your post reminds me that we all have our "Demons" to deal with as we try to cope with our pain and the unstopping extras that come with it.

Its good that you try to at least deal with people on a daily basis with your pain and how to explain to them what is going on with you. I have too an experience with that that I thought I would share with each of you that I think you will find pretty weird; My husband's old Part's Manager has always been the type of person that mocked my pain. He has "Been there done that." with two fusions and never had one problem with his back after the surgeries. But here about three years ago his mind was changed as far as what I go through on a daily basis when he was riding a horse and the critter dropped him from his back and rolled on him, causing many broken bones and broke his back as well. After many weeks in ICU and several surgeries to correct his back pain he is now in constant pain. I saw him a week ago and he told me that he now understands what I am going through daily with my pain. Too bad it had to take a serious accident to make him see clearly.
HEALTH ISSUES: Herniated discs at S-1-L5, L5-L4, L4-L3. Two level fusion (2000); one level fusion (2002); Revision at L4-L3 (2003). Diagnosed with Failed Back Syndrome, Permanent Nerve damage and Chronic Pain

Medications:

Kadian, Lexipro, Percocet, Temazapim, Lunista, and Robaxin.

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