On Becoming a Hermit

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Falling apart in TX
New Member


Date Joined Apr 2009
Total Posts : 15
   Posted 4/21/2009 10:11 PM (GMT -7)   
I am wondering if anyone else has come to a realization that their lives have been completely altered by their CP? Have you too become a hermit?
 
I can no longer leave my home to join family and friends on outings. I am always afraid of being put in an uncomfortable postion, of falling, of making a scene because I need so much assistance getting around. What if I can't walk as far as I need to? What if I can't find a suitable place to sit? What if I can't carry on a coherent conversation? What if my back goes into a hellacious spasm while riding in the car? What if...?
 
I have decided rather than make myself and everyone else uncomfortable, I will just stay home. Pity. I used to enjoy my life.

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 4/21/2009 10:50 PM (GMT -7)   
Falling apart in TX
Welcome to the Forum! I completely understand what you are saying! It was only a few weeks or maybe a month or so ago this exact thing was descussed at length! You might want to look back for topics about the affects of CP I think a couple of them were started by fatherjohn. They were very insightful threads and I think you might really appreciate the thoughts and feeling expressed by so many of the forum members here, including myself! Let me just say you are not alone, for good or for bad allot of us have become "hermits"!

I have done some looking back for you: (I don't know if I am suppose to be doing this or not if I am breaking a rule please let me know and delete this links they are just to some of the previous threads that I though Falling apart in Tx might find interesting that reading.) You can copy them and paste them in your address bar to get to the thread. These three threads deal with CP and the affects it has on you, it deals with some some very personal and intense feelings an emotions much as you have described. I hope you enjoy reading them and who knows maybe you will find some of the thing useful! 

http://www.healingwell.com/community/default.aspx?f=16&m=1418277
http://www.healingwell.com/community/default.aspx?f=16&m=1407255
http://www.healingwell.com/community/default.aspx?f=16&m=1410176

Falling apart in TX I really do think you will like the folks here at this forum and although I am sorry that you have reasons to be here I am glad you found us!
White Beard


  I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV

Post Edited (White Beard) : 4/22/2009 12:01:09 AM (GMT-6)


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 4/21/2009 11:00 PM (GMT -7)   
Hi Falling,

If I pronounce your name just right, it has an oriental ring ... Fa Ling. Do you
hear it? : )

Oh, I do know what you mean about being a hermit. Indeed. Tomorrow
night I'm missing a special family dinner. We will be having a family meeting
starting at 3 PM and following that a birthday dinner for my husband.
I just can't make it. It breaks my heart.

Last family dinner I made it 3/4 of the way through. I've more or less accepted
it. It doesn't get me votes for the Most Popular, but I do show my existence
at times.

I don't like living with chronic pain, BUT I do like living. (Most of the time)

One day at a time. One hour at a time. One breath at a time. Our way
isn't the way of others. But on we go ...

Pamela :-)

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/22/2009 12:28 AM (GMT -7)   
FallingApart,
Oh, I can very much relate. Way too much solitude anymore for me, but I have many of the same concerns you and most of us do. I think I'm trying (I'm new at this part of it all!) to find some balance because the thought of continuing life like this...well, there's not much life. So by balance I meant finding how much pain I can tolerate, activities that I'm wiling to give a shot despite the pain, things and events that aren't worth it and people who are insensitive and wouldn't understand my needs.

So we're in the struggle together. As White Beard said, you've come to the right place.

And no, W.B. as far as i know you're not breaking any rules. I would think quite the opposite in helping a new member out.

PaLady

mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 4/22/2009 2:20 AM (GMT -7)   
Fallingapart you are in the same boat as the rest of us we all have to weigh the benefits of a outing for the pain we know we are going to receive in the end.For me when it is family most of the time I am willing to put up with the pain I receive in the end.Every thing else can go to heck.
Lost half of my small intestineJan.2008.Ilieostomy for 5 months then reverst in June 2008,Nerve damage to right leg,part of my right hip bone removed Jan. 2008,Cronic pain,hernia,infection in my back called discites,and depression.Gallbladder removed Nov,2008.Surgery to fuse L3 and L4 vertabra Dec. 31,2008.Mother to 9 kids 7 boys 2 girls and 1 stepson.4 grandsons,9 grandaughters.4 of my grandkids I inherited from my twin sister who passed away 6 1/2 years ago from a blood clot after surgery.God has given me my life back after I almost lost it.Even though its a painful and sometimes hard road to walk I take it one step at a time and give thanks to god for every step I take.


Falling apart in TX
New Member


Date Joined Apr 2009
Total Posts : 15
   Posted 4/22/2009 6:25 AM (GMT -7)   
White Beard,
Thank you so much for taking the time to post the links! They will be most helpful. I will read the threads at length today.
Mom, Paladay and Pamela, thank you for your responses as well.

I am not use to sharing my feelings about my pain with others. I find in real life people get sick of hearing it, I get sick of hearing myself, or they just don't care. I appreciate y'alls understanding and compassion.

TX girl

Tony McGuire
Regular Member


Date Joined Feb 2009
Total Posts : 483
   Posted 4/22/2009 6:44 AM (GMT -7)   
Your sentiments are why having so many understanding people here is so important. As several have said, the people on the forum DO understand our special needs, and are all willing to accommodate those special needs.

And I would imagine that many/most will understand those earlier reasons the same as the new one.
Wife: Liz, the choice of a lifetime
Dogs: Koshka Prayer & Chomp Prayer


TroubleMaker
Regular Member


Date Joined Mar 2007
Total Posts : 119
   Posted 4/22/2009 7:39 AM (GMT -7)   
I know how you feel.  I can not do anything with out thinking it out.  Will there be somewhere to sit or lean on a wall.  Will my legs start cramping and keep me from keepin up with everyone.  I want to go to Atlanta to the Coca-Cola place, the aquarime (sp) and I'm scared I'll waste money we really dont have.  Good luck and soft hugs
 
Trouble
Pain pain go away and never darken my door step again :)
 
 


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 4/22/2009 9:09 AM (GMT -7)   
Falling: I don't think any of us like this solitude that was forced upon us...I guess that it why we are here...Here we do what humans can and must do...I understand the grieving over the loss of the social self...heck, look at my screen name, I noticed yours has the same theme as well...

I sometimes feel like such a flake to my friends and family. I try and plan things...I think I'm having a better day...but then my stomach rumbles...and BAM! I'm curled up in the fetal position on whatever flat surface is available, out of commission for the next 4 hours (at least). And no matter what the cause...we always look ahead and try (must) think of the logistics of any event (for me, is there a bathroom nearby?...can I get there and use it enough without being noticed/heard?...How fast can I get home?...Does my husband know the cues to leave when I REALLY have to leave and make a suitable excuse?...)
"The earth laughs in flowers"


angel8
Regular Member


Date Joined Apr 2009
Total Posts : 109
   Posted 4/22/2009 9:12 AM (GMT -7)   

Welcome falling apart and it can be frustrating at times for most of us. I know when I got hurt and joined this clan of CPers I was only 41 years old and after all the stages of denial I went thru I finally just got plain mad one and day and made up my mind that nothing short of death was going to stop me from living the rest of my life! I knew I would have to change somethings and the way I did others but the biggest hurdle for me was simply acceptance and when I could admit to myself this was my life and the cards I was dealt and if I didnt speak up for myself no one else was either.

From that point one it got alot easier. I had been thru a long list of Docs and clinics there were NOT treating my pain adequately since I was so young,their words not mine here, I finally got mad and spoke the all out thruth to one of them one day that I was not going to live like this another day I did not deserve to be in pain no matter how old or young I was and if they didnt help me then living this way was NOT an option I was going to be choosing, Harsh words no doubt but I was literally at the end of my rope! I had 4 kids to raise by myself and if nothing else was right they didnt deserve this. He immediately put me on methadone and once we got it right my life was a total turn around. What I am getting at here isnt so much the fact that methadone is the greatest thing going but ADEQUATE PAIN TREATMENT IS! Most everyone I know who has proper pain treatment and is adjusted right on meds gets out there and does all of those things your not! I dont know how well your treated by your Docs but this can be the answer for you.

I know it isnt easy finding at Doc that cares or isnt scared to death to treat you even if it takes higher then normal dosing but keep looking. It is your life!

Then everything else came easy. I started asking when invited somewhere those very questions you are concerned about. Do you have somewhere I can lie down if I need to? Is there alot of steps or inclines I have to climb? Will there be someone that can drive me home if I get into a dire place? Is the bathroom on the 1st level an accessable? If you dont ask you dont know and you would be so surprised at those who are more then willing to accomadate you. The one thing I heard the most from the inviters was " Oh honey I am so sorry I had no idea you required those kinds of things and I will be more then glad to help" I am so glad you told me!

As for parks and public place the same goes,ask. I have found that I have to miss very little and the anxiety levels drop to almost nothing when I go out there as I know ahead of time what I am facing.

This thing called pain took enough away from me without me allowing it take my life!

Glad you found your way here and it helps to say it to those who understand since we have said it to ourselves way more then we care to hear it. LOl

 


Falling apart in TX
New Member


Date Joined Apr 2009
Total Posts : 15
   Posted 4/22/2009 10:28 AM (GMT -7)   
Wow! I just finished reading through the recommended threads, White Beard, thank you.

You were right, it is a topic that has been well covered by this group of deep, insightful people. You all rock!

I thank everyone who has added to this discussion. It means a lot to me to hear your personal experinces. Now I am going to start a new thread...one on facing death.

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 4/22/2009 11:31 AM (GMT -7)   
It's fairly easy to speak of Back Spasms, Stomach Aches, Head Aches, Neck
Pains, Broken Limbs, Fallen Arches, Plantar Warts,, Allergies, Asthma,
Cramps, Pregnancy, Stasbismus, Halitosis, Lymes Disease, Morning Sickness,
Agoraphobia, Anxiety Disorder, Arthritis, Rheumatism, Splinters, Dental Caries -
You know what I mean. Serious, but not deadly.

It is not easy to find out the prescise location of the bathroom where you are
going. One just does NOT want to answer too many questions. Just as one does
not want to give too much information.

I had a difficult time composing this post, even.

Becoming ... Thank You. scool

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 4/22/2009 5:48 PM (GMT -7)   
Oh, completely. Here I am, a college student, living on campus & I have NO social life - due mostly in part to my CP on top of the school work. I try, but my efforts don't mean anything to most people. I'm just so exhausted & hurt so much, that I really just want to be alone or try & sleep whenever I have a free moment. I live with 3 other girls, but I hardly ever seen them. I've realized recently that I am losing or have lost most of the friends that I had here, all within this past year - which was when the effects of the CP really worsened (although I am antisocial by nature). It is horrible to feel so alone. I know that is is my own doing, but to some extent, I feel like it is out of my control. I do what I have to to function, and I barely function as it is. I don't even talk about my CP to anyone anymore, except sometimes my family, because no one wants to here it. They don't really care & don't understand, and usually just make me feel worse. So, yes, I too am a hermit. I wish I wasn't. I pray ever day that I could be a normal college student again. Before I know it, I will have graduated, without forming any real lasting friendships...

Skeye

Post Edited (skeye) : 4/22/2009 6:51:08 PM (GMT-6)


Falling apart in TX
New Member


Date Joined Apr 2009
Total Posts : 15
   Posted 4/22/2009 6:20 PM (GMT -7)   
Oh, Skeye,
I have two sons still in College, they graduate this year. I know how hectic their schedules are, and how much peer pressure plays into using time wisely. We live in a society of disposable everything, including friendships, it seems. I sometimes think we CP folk are disposable people in the eyes of society. True friends stick with you no matter what.

Stay focused on school. Graduate. Build your adult life, career and friendships will come. Stay strong! :)

Fal-ling (Pamela neckpain gave me this name)

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 4/22/2009 6:41 PM (GMT -7)   

I've been crying reading these posts, I really feel for all of you out there with that much pain, I have odd days sometimes odd weeks where I can't get out but I am a long way from your level of pain. I just wanted to say you are a very beautiful, warm, caring, understanding group of people who are making a huge difference to my life at the moment. Thank you all for sharing your lives.

Plus Skeye, I teach at Uni, I have two students who are CPers and the three of us often have coffee and exchange info, but we look out for each other.  Maybe by speaking out you might meet others who are suffering like yourself, my students have become lovely friends, I sincerly hope you can meet up with another co- sufferer. I agree with Fal-ling, I often get the feeling from Dr's or professionals that they are doing all they can for you so just carry on. It's an awful feeling, you don't fit into the box so go away, very disposable!


angel8
Regular Member


Date Joined Apr 2009
Total Posts : 109
   Posted 4/23/2009 2:22 AM (GMT -7)   
Those of us on tis road have already become some of the strongest that are so asking some questions and searching for answers,advocating our abilities versus our disabilities is a walk in the park (no pun intended) ? Look at some of these folks diagnosis,meds,past surgeries, they are profound to say the least and yet here they are,seeking answers,help,support, and yes even giving of themselves when I have to wonder some days where they have anything left over to give. Strength,fight,the will to make it against the odds and even on those days when giving up is easier they keep at it.
 
It is difficult to admit to all that we endure and more difficult to have others no of our weaknesses for those are the things folks remember about us. When I got past the complex feelings of inadequacey and trained myself to advocate for those things that was possible for me I stopped dwelling on all the things that I couldnt do anymore. It was excess bagage I couldnt afford to haul around.
 
I have had to change many things in my life and most all the ways in which I did them but new isnt always bad. For lots of years I gave up my number one favorite past time of camping,couldnt see getting onto the ground much less getting off of it,darn sure knew I couldnt put wrestle a tent to standing position and make it stay! And Heaven forbid I didnt even want to venture thinking about the late night coolness nor the early morning frost!
 
After feeling like I was useless to life if I couldnt even have that simple pleasure someone on another forum many many years back says to me,"why dont you just redo the way you camp?" NOw I had to give this one alot of thought as I couldnt see how to redo it,camping is camping right? Wrong, I now spend 90% of the summer and spring and fall months doing just that! I can even choose the way I am going to camp.
 
I either check into the KOA with my gold card and rent a cabin with heat,real beds,air and electtric for any equipment I might need,plenty of room for my baggage and a porch swing that with a few pillows added on is a trip to Heaven with a good book. Or I simply invested in a 60 second put up tent and yes it really is, a bed size air mattress with a memory foam topper,a tent heater for those cold mornings or frosty nights,a few other camping add ons, a piece of carpet on the cold floor, a kind of expensive chaise lounge that is ortho positioning and really comfy,have even used it in my house a few times I couldnt make the bed work for me! Not wanting to go on and on here just wanted to show how once I changed my way of thinking about my cans and cant's I could just about find a way to do most anything I did before I got hurt.
 
Last year we rented a pontoon boat,plenty of room and I took along my ortho chaise lounge and when I got tired of fishing slept for hours! 1st time I had been boating since I got hurt! Hiking except in small doses is about the only thing I can think of that I dont do as much as I did pre-cp.
 
I guess all I am really trying to say here is dont give up on life before life gives up on you. Again I cant say this enough it all comes down to proper pain management for me becuase until I got the pain in some kind of livable and workable place nothing else can be done. Please any of you that feel as though life is passing by outside your window as you watch keep searching for better treatment for your pain. Once you have that everything changes.
 
Peace and pain free days ahead for all of you is wished for.
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