Spin off from "but you don't look sick"

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ekkorose
Regular Member


Date Joined Jul 2008
Total Posts : 329
   Posted 4/1/2009 7:35 PM (GMT -7)   
Ï was thinking about this and a thought came to mind.
 
Does it harm us by spending so much energy hiding our pain from everyone? It is as if the more it hurts the harder I try to hide it. I remember a time before my hyster that an 8 was a good day and I was at work happy that I could "handle" it that day.
 
I can be at a 8 1/2 with my neck and while people notice something is wrong but they think it is a minor problem. Now when i am at my day to day 7 no one really says anything or can even tell something is wrong.
 
I think it causes some great confussion with the people in our lives, co-workers and loved ones alike because what they see as minor is actually horrible pain to us.
 
What does everyone else think?
 
 
 
Sarrah

Hysterectomy at 25

4 laproscopic surgeries since 24

Cervical stenosis in C3 & C4

_____________________________________________

 

Meds - percocet  3x day : nexium : xanax :

Supplements : calcium : magenesium :potassium : milk thistle : fish oil : B complex : vit E

____________________________________________

In the United States today, there is a pervasive tendency to treat children as adults, and adults as children. The options of children are thus steadily expanded, while those of adults are progressively constricted. The result is unruly children and childish adults. ~Thomas Szasz 


Tony McGuire
Regular Member


Date Joined Feb 2009
Total Posts : 483
   Posted 4/1/2009 8:45 PM (GMT -7)   
A lot of people talking about the evil eye some get for parking in Handicap Parking, even though perfectly well entitled.

Well, I for one am appreciative of those who attempt to take a bit of policing onto their shoulders, and attempt to help keep those spaces open for those of us who ARE entitled.

How do you feel about the police officers who write tickets to people parked in Handicap Parking without a decal displayed?

Again, I am appreciative of their efforts - while sometimes they seem to come up short they are nowhere near as bad as in California.
Wife: Liz, the choice of a lifetime
Dogs: Koshka & Chomp


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 4/1/2009 9:16 PM (GMT -7)   
Hi Sarrah!

That's a great question...WOW! If we were to be honest with those around us they would get very tired of hearing how awful we feel and how bad the pain really is. If we hold it in then they think we must be fine. Sort of a lose/lose situation there, IMHO.

I did ask hubby point-blank whether he would rather me not tell him how I'm doing at the risk of always sounding like I"m complaining or if he would prefer that I be honest each day and let him know. I was a bit surpised by his answer...happily so. He said he'd rather know the truth. That doesn't mean to go off dwelling on it but I do let him know how I feel. But with the rest of the family I pretty much keep it to myself unless they ask or I can't participate in something due to pain.

So, does it harm us by keeping it to ourselves??? I think so. We are keeping fibro in the closet that way and continuing the validity of the disorder. No need to keep on about it all day long, but tell the truth, then move on.

Just my opinion...
Chutz
Co-Moderator Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis and a few other side dishes.
***************
Happiness is something to do, someone to love, and something to hope for."
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skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 4/1/2009 10:14 PM (GMT -7)   
You bring up an excellent point, Sarrah. Being in pain all day, every day is exhausting. Both mentally & physically exhausting. Add on top of that the exhaustion from the chronic sleep deprivation which most of us suffer from as well, plus the physical disabilities that we compensate for. These things HAVE to be taking a tole on our bodies. They are certainly not helping us at all pain wise, and quite probably making things worse. It is a vicious cycle that we are trapped in.

Making an effort to hide our pain puts stress on us as well. No one wants to see someone else's problems, so we grin & bare it, pretending everything is okay when it's not. In fact something is quite horribly wrong. We are screaming inside. It's all that we can do to get through each hour, let alone each day or each week. Like Sarrah, normally, I constantly hover between a 7 & 8 1/2 during the day. Most days I put on a good enough face that people can hardly tell that something is wrong, at least those people who don't know me well. I pretend that everything is okay, I smile, but in reality I want to rip my eye out. I can barely think straight because of the pain.
This morning, one of my coworkers at my internship made a comment that I looked like a ghost. I have barely slept the last several nights because of severe pain, and I'm not helped at all by the fact that my meds, which had FINALLY been seeming to help minimally at best, are no longer helping at all. This morning I was around a 9, which is the upper limit of what I can handle without being sprawled out somewhere screaming, crying in pain, unable to move, or even think. Sometimes I can't even handle a 9. I've only been at a 10 three times before. I won't describe the horror of those situations, as everyone knows all too well, but I can say with confidence that I barely function, at best, with a 9.
I almost didn't get out of bed this morning, probably wouldn't have if it wasn't for a big meeting that I had. I was holding back tears from the pain. I couldn't think straight, see straight, and I was concerned about driving. But all she noticed was the pale, ghostly color of my face. Sometimes I think I hide my pain too well. I end up agreeing to do things that I shouldn't because I try to deny my disabilities, and then I pay for it, badly. It is easier to deny the truth when every day, you go about pretending that you are okay.

Keeping all of this bottled up inside of us is surely detrimental to our health, but no one cares to listen. People don't want to hear about our problems as much as they don't want to see them. There are only very few people (at most 3, but generally only one or two) who I will confide in about my pain. Not always. Only on those really bad days, when I just can't hold it inside anymore. But that doesn't bring much release, as I often feel like I am burdening the person, like they don't want to listen. Then I get upset & feel worse, because all I want is some support, someone to tell me that it okay & that I will get through it, and to maybe throw in a nice big hug, but often times, instead they get annoyed because they can't do anything about my pain or my situation & they are sick of hearing about it. Sometimes what is even worse is the silence. Dead silence. They don't even know how to respond. So I mostly just keep my mouth shut and internalize everything.

Skeye

Post Edited (skeye) : 4/1/2009 11:23:25 PM (GMT-6)


auntkay
Veteran Member


Date Joined Apr 2004
Total Posts : 1199
   Posted 4/2/2009 3:31 AM (GMT -7)   
Wow Skeye, you said it all as if you were in my mind and body!!!!!

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 4/2/2009 11:26 AM (GMT -7)   
auntkay, I agree, Skeye did say it very well as did Chutz.
ekkorose came up with a good topic.
Our son lives out of state. He has heard that I have CP. He's not stupid.
However, in our phone calls he neglects to ask how I'm doing. This has
caused a coldness and stillness in me. I don't like to talk to him anymore.
It's that bad. Dad talks. I listen.

One thing: People we love or have loved may be in denial about CP. It's
been seven years for me, but I don't see our son very often.

Pamela

Tony, I think people who park in handicapped spaces without a placard
should be given the evil eye and a ticket for a thousand dollars. I don't
think citizens should try to do the policeing. They might get shot!

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 4/2/2009 12:13 PM (GMT -7)   
Skeye said it all very well indeed! When people ask you how you are, they really don't want to know, at least most of them don't! If you start to tell them the truth on how you really feel, you can see the the mortified look on their face, and you know they are not comfortable and regret asking! So why bother telling them?

I find that the nights, well I suppose the days to are bad too!, But pain for me always seems worse at night the last few nights have been really bad, and lonely, when I really hurt I tend to pace the floor or rock in the rocking chair,. in the dark and lone. There is no one, to share with, what I feel, even before, this divorce thing my wife had little or no interest, other than maybe blaming me for the pain if I had over done it the day before. But now it is really lonely, me, my thoughts, and my pain! I don't want to burden my daughters with my problems, they have their own families and enough problems of their own. My youngest daughter, she's the nurse will often ask me how I am, when she calls, but I usually don't tell her the truth, as I said, she has her own family and she doen't need to worry about me too!

Pamela I can some what identify with you, my oldest daughter sounds much like your son! We haven't talked, in a very long time.

I am trying to get out more, I go to the Divorce support group, and at the urging of my counselor, I am trying to find volunteer groups that I can participate in. Even if I don't feel like it! But I do not tell any other people about my pain, I feel fortunate to be able to speak so freely about it here, on this forum!. I think all of you understand, I feel that you, I hope so anyway!

White Beard
 

I'm Retired USAF, went back to school and became an RN, and now am on ful 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


Tony McGuire
Regular Member


Date Joined Feb 2009
Total Posts : 483
   Posted 4/2/2009 12:21 PM (GMT -7)   
The beauty of a wife who is still hanging in there, and two dogs who listen regardless of what I say.

Moreover, I've only been in the pain business for a year, so have only had my family take off, friends, true friends, are still hanging in there. And one thing absolute, this has pealed away the layers of who is a friend and who was an associate.
Wife: Liz, the choice of a lifetime
Dogs: Koshka & Chomp


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 4/2/2009 3:59 PM (GMT -7)   
Kids, no matter how old, don't like to know how we are doing unless we are well. They can't help us or fix us. It can be scary hearing negative things about a parent's health. It reminds them of our mortality and that hurts. I became ill when my oldest was about 3 and she ended up needing counseling before 3rd grade. She's 22 now but I'm still her mom and she rarely asks how I'm doing. She knows I'll probably lie so it works better this way.

Several people in my family have chronic illnesses and we rarely talk about it. If the person brings it up, we talk, otherwise, we don't mention it. We make a point of asking about any acute illnesses that someone is currently dealing with though. I like it this way, my life and phone conversations with far away relatives revolve around my life, not my pain. When a friend or family member mentions a treatment they've recently read about, I thank them for thinking about me.

Tony McGuire
Regular Member


Date Joined Feb 2009
Total Posts : 483
   Posted 4/2/2009 4:49 PM (GMT -7)   
Dagger: "When a friend or family member mentions a treatment they've recently read about, I thank them for thinking about me."

Thank you, Dagger. I am better for reading this post, just for this tidbit.
Wife: Liz, the choice of a lifetime
Dogs: Koshka & Chomp


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 4/2/2009 6:13 PM (GMT -7)   
I'm new to this living with constant pain scenario ( i have either sero negative arthritis or psoriatic arthritis) but I was struct how true all your responses are, I never know if someone asks how I'm going whether to be honest or not. I too have seen a horrified reaction in someone that obviously doesn't really want to know. Yet if I brush over the pain, I then feel guilty asking for help! I try and push myself at work and block out what I can of the pain and then collapse exhausted at home or worry about driving home. My kids are also upset not used to me being so down. It is really stressful trying to juggle work, motherhood including all there sporting committments and housework. I don't like to be thought of as constantly "sick". Its a really tough assignment! Good to read all your postings though. Regards Jacqui

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 4/2/2009 9:14 PM (GMT -7)   
Chronic Pain isn't fair. I certainly don't want my son to get really into the
issue of pain with me. He doesn't want it. However, "How you doin' Mom?"
would be sweet to hear.

I'm frantic. My daughter is expecting a baby in a couple of months. I've
lived a distance from her. She knows I have pain, but seems to be in
denial. That's ok. She always asks, "How are you today?" I usually say
"Fine."

The problems come up when there's a family dinner. What do I say?
But worse than that, what happens when we move practically next door
and I'm not able to help her very much with the baby or with her other
two little girls under the age of five. We're moving June 1. Baby is due
June 3. Ho my! What to do? What to do?

It makes me so very sad. I don't know how to handle it.

I answer me. There is no answer to this. Life will go on and we will follow our
own paths.

Pamela

I hope everyone has a lpd as Kara would say.

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 4/2/2009 9:27 PM (GMT -7)   
Pamela

But you will handle it, in your own fashion just as we all do! I will agree with you though,..... it is sad!

White Beard
 

I'm Retired USAF, went back to school and became an RN, and now am on ful 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


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 4/3/2009 12:42 AM (GMT -7)   

I agree with everyone when someone asks you "How are you?" they really don't want the truth.

I'm very lucky with my children.  My 15 yr old son would rather never talk about whats wrong with mom.  My 16 yr old daughter asks me all the time how I feel and she stands there waiting for my response if she thinks I'm not telling the truth she says shes going to go get her dad.... turn   My 20 yr old as confused and out of control as he is he's still concerned with my pain and health.  I do try and keep alot to myself, I know they know I feel bad at times.  If I miss a game or can't drive them to an event 50 miles away they are very understanding then dad steps up to the plate and takes them.  My pain has to be off the charts for me to miss any of their activities.

In public I ALWAYS hide my pain.  This means at work also.  I have stated before I am not ready to open my personal life to co-workers. 

The comments on hiding the pain can also hinder how you feel.  Yes I believe this.  After a 12 hour day in a warehouse I drive home.  Only takes me 5 minutes.  By the time I get out of the truck and walk into the house IT HURTS so bad.  I feel its overwhelming at times I get so tired of the pain mentally and physically.

Lastnight my daughter was telling me about a report she has to do for school.  Sports in the future.  I thought, In the future will there be anything for CP.  Can you imagine having an eye scan that can trigger pain relief....lol  ya right we can only dream

 


Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension

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