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Are we defining ourselves by our pain?

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Posted 8/30/2013 1:31 AM (GMT -5)
It occurs to me as I'm now on the search for a new PCP (et al) and I realize the importance of presenting myself to my new doctor/s as just me, and not as a list of diseases and problems.  I told my current PCP when I saw her that as I transitioned, I didn't want to overwhelm my new doctors and she said, "Good luck with that!"  She said it in good humor, and she's been exceptional at working with me.

Her advice?  To make sure when I see my new doctors to present as myself, and not as a list of problems and diseases and problems.  She said to pick two things to bring into the meeting with me and make several visits to get everything in....that's the best chance I have to ease the new doctor/s in when it comes to working with me.

I know we're on a CP forum so that's our focus here.  But how do we seek care for CP in a gentle way when so much of our life actually does revolve around a long list of issues?

Sookie

Posted 8/30/2013 3:18 AM (GMT -5)
Sookie you can't let your pain define you. The first thing we learn as rack up the miles on this journey. I believe us older folks control that better then young CPers. It's been studied and researched by many.

In 2005 WebMD published their findings on why chronic pain engulfs the young more then the over 50's. Im on my phone so can't make a hot link but should be easily found at WebMD.

There are visits to my Dr some months that when we get passed "anything new " meds doing OK " my CPs never mentioned. The weather, the kids, the new beachside store, anything I want to talk about but my pain. He realizes I suffer from CP but I'm much more then that. He also suffers CP so sometimes we talk about him.

I could lay around and just complain about my life and how unfair it is. I could talk everyone's ear off I meet about this pain and every way its effected my life, I've had a decade of pain to talk about! Won't change anything, not one person I tell it to can change anything, I can change my thinking and make a difference.

I learned a long time ago that the more I say about it the less anyone hears. I wake up every morning determined that I am not going to let this monster ruin another day for me and out of sheer determination I don't.

I do no different with a new Dr then anyone else. Im assuming he has your records? Then he already knows all your problems right? If you have some particular issue currently giving you problems then that's what you discuss. Drs are just like anyone else. You go in start pouring out information like a water faucet, complaining, what and so forth he's going to shut you down like everyone else.

Just stick to problems that can't wait, leave the Bio for another day. He will do the asking if he needs to. He will treat you better for it.
Posted 8/30/2013 10:07 AM (GMT -5)
Sookie I am in the same boat as far as getting a new PCP. My cardio has given me the name of one to see. However, he said you are a complex case for any dr, do not expect a lot at first, this dr will need to get to know you and all your health issues over time. I have no intention of discussing CP with her because she is not the treating dr for that. If she asks I will answer her questions. But, if I go in there and start in on all my health issues she will get so overwhelmed she may rethink taking me on as a patient. Then, I may lose a very good PCP. So, just go slow & steady with any new dr..

When people start letting CP define them they are losing the battle. I turned 60 this summer, I am one of those older ones with many, many years of CP under their belt. I will fight tooth & nail to keep winning this battle called chronic pain.

I gotta agree with what Vickie has written above.......Susie
Posted 8/30/2013 10:23 AM (GMT -5)
I think that because I haven't worked the past few years and my life actually "did" revolve around the intractable pain I was in, the way I became a shut-in because I dreaded the uncontrolled pain of going out to do things,...that "was" my life as I knew it.

My marriage was threatened, directly, if I did not go through with the (first) hip replacement. The way I bounced back, mentally, saved our marriage because it "returned me to the family." It started the journey of "me" not "me = pain."

Then 9 months later my spine kicked in, again, affecting everything. So that surgery came. Long recovery on that one, but it was the most painful thing I've ever been through.

Then 6 months after my back, the other hip needed replacement. This was 2 months ago. Then I had multiple complications and return admissions to the hospital for treatment.

So along this journey, because it actually "has" affected my QOL and my ability to do basic things, I have to be honest with myself in that my day to day activities did in fact revolve around how I felt physically.

Hopefully I am done with surgeries for a while. I have one more coming up, but it's soft tissue and shouldn't keep me out of the game for more than 2 weeks. Done it before, I'll do it again.

Now that I've filed for Disability, and I'm still not able to work (which was a big part of how I felt connected, and a big part of my self-identity),....HOW do I go about trying to re-define me, my perception of my-self,...while excluding the one thing that's been constant (CP)?

I have no intentions of giving up or giving in, but I do need some education and advice so I don't focus on that constant as a means of identity.

Thanks everyone for letting me get all that stuff out there.


Sookie
Posted 8/30/2013 12:06 PM (GMT -5)
Sookie it is real easy to become a shut in when dealing with CP. Set some small goals for yourself. Make them ones that are reasonable with your ability to do them. Get out of the house even if its going to WalMart, Home Depot or one of those places. If there is a hobby store to go to then go window shopping. Just because you go out to one of these places does not mean you have to spend money either. I do this a lot to get out. I also do some gardening even though I have scaled it back.

Remember to be thankful for the things you can still do. Forget about what you can no longer do. Those are no longer important. I do many things around my home, some are improvised but thats ok too, lol. Its good to be creative...Susie
Posted 8/30/2013 3:54 PM (GMT -5)
Sookie this discussion comes up every now and then, when I first came here we talked at length about CP and how it can shape our lives, and the affects of it, and letting it define us. One thing is kind of universal is withdrawal, and isolating ones self. I did that for many years, I let friends go by the way side, and because I did not have any family close by, I kind of adopted my then spouses family and friends as my own. It was a big mistake! When our marriage fell apart, I was left really alone, with no support system. Going through a divorce is not the time to find this out, and then try to make new friends and develop a new support system! I guess I was lucky, during this time, I was introduced to Healing Well, and this Chronic Pain forum was my salvation! I totally agree with Susie, force yourself to do stuff, and get out among people. Keep your friends close, don't shut them out or isolate yourself. The price for doing that can be very very high!

White Beard
Posted 8/30/2013 4:42 PM (GMT -5)
Sookie:

I know how hard it is to try not to make our CP or illness our life and what we are. I've had lupus since 1987 it wasn't formally DX'd until 2001. It wasn't until then that they started treatment for me. During the years prior to 2001 I had my ups and downs with my illness.

However, by 2001 I'd started my decline down hill and had to stop working. I've not worked since then, I totally disengaged from life and family and just focused o being sick. Shoot ahead to now, I've had several additional illnesses added and my CP had become a HUGE problem for me. I refuse to let it take me down though.

Even though most days I feel like I just can't do anything, I force myself up out of bed and I feed the cat and get myself cleaned up, even tho I may stay in my pj's all day along. If I have Dr appointments I try to take myself and not ask someone to take me. All of this stuff is very tiring for me but I do it anyway.

I try to remind myself that even just folding a basket of laundry to help out my spouse is a big help to him. Do I hate it that I can't do all the steps in doing laundry, or cooking meals, or cleaning the house. You bet I do, but I try to everyday do something that might assist him so that he's not so worn out too.

I miss working and the interaction with people. However, I understand that I can no longer be around large groups of people or people that are sick. I enjoy the spring and summer time as it allows me more freedom to get out and window shop and just watch folks. Now that fall and winter are coming it will be again a difficult time for me as my confinement will get tighter and tighter.

Everyone has given you such good advice on how to have an identity beyond CP and being sick. I try not to discuss my health with anyone, even my family. They already know I don't feel well, they can tell how I'm doing by the amount of time I'm sleeping or how much I eat in a day. I'm sure they get sick of hearing me complain all the time about not feeling well, so I really try hard not to talk about it in depth.

I have friends that I talk with on the phone and I try to help them with their situations, and I have the folks here at HW. I can't volunteer much as I'm not allowed to be around groups of people. I'm not a crafty person but I do like to read and I do just that. I've come to realize that even though I can work anymore, I'm still valuable to my family and friends. They're always asking questions for help with their finances and such.

Try to find things that you enjoy to do and focus on them. Maybe once you're settled into your new home you could find a place to volunteer a couple days a week. Like a senior center, or some such place. You'll have a new home to decorate I could think of all sorts of things to do with our home and then trying to get it done the cheapest way possible would take my time. Just things like that may help you and you'll get there.

I hope that you start to feel better really soon and I truly hope that your new PCP will be a good fit for you. I wish you the best and hang in there.

Hugs,
Barbara
Posted 8/30/2013 7:12 PM (GMT -5)
While I feel it doesn't "define" my life..it is a large part of it. I think of it as just a challenge that has been placed upon me, and everyone out there has their own challenges/issues.

I feel there are several other things that define me...though I do have days when I feel the weight can be a bit too much :(
Posted 8/30/2013 10:01 PM (GMT -5)
I'm trying harder and harder, -- in part because I'm realizing more and more, -- how my behaviors in the past made me come across as if I identified myself by the list of diseases and disorders I had, the list of surgeries,....the defects that keep me from being whole. I am better now than I was, but still have my moments where I can't see around those lists. As if they are emblazoned on me somehow, like a neon sign floats above my head and I can't hide.

I'm afraid if "I" diminish these lists, which ARE important, then so will others, like my new practitioners for one, but also, I get exhausted explaining over and over, for years, why I cannot go shopping with my SIL. (Because it's so painful for me to stand or walk for more than 10 minutes supporting myself entirely, but I can do 20 minutes walking on a treadmill because I'm holding on and have support). My SIL repeatedly reminds me that at the Pain Clinic she works at, they "have a saying" that when a patient says they "can't" do something, it means they "won't" do it.

Now if this is being told to me in a quasi-confidential way, I will admit that it does make me wonder just what our professionals say behind our backs and how they determine our "worthiness" in treatment, and how rather easily patients get labeled, at least at her clinic. And I'm sure her clinic isn't the only one doing this to CP patients.

And yes I do let it get to me not only because she's my Sis (in law) but her specific profession, and how it pertains to me, and other CP patients. It makes me wary presenting myself, or how I have presented.

Adding to that is the turmoil which I've yet to find peace with is that my spouse is sooooooo self-sufficient. Literally, there is nothing he can't do. He's so independent. So brilliant. So popular. So low maintenance. So healthy. In high demand. Physically, intellectually, every which way, he is capable of doing everything. I am in his life, in his orbit because he wants me there, not because he needs me. He has SUCH a full life, with work and the military, he's a pilot, he takes and teaches hand to hand combat, he's even moved ALL of our furniture from our previous house to this new one, by himself. Literally, he doesn't ask for help and he doesn't need it.

This makes me feel useless at times wondering what I provide to such a wonderful man who is so self capable.

If I were to ask him, it irritates him, because he feels and expresses he's with me because he wants to be. But what on this Earth do I provide that helps balance the scales?



Sookie
Posted 8/30/2013 10:42 PM (GMT -5)
Sookie,

You are in his world because he loves you. Love is irrational, blind, silly, gooey, messy, beautiful, sweet, angry, happy, sad, and so many other words and yet it is beyond definition. He wants you there for you, the chunky, bumpy, painful, scarred up, stiff self (how I view myself but I asked myself same question) he loves you and cares about you. You are apart of his world. You were there through thick and thin for him, the emotionally rough times, (deployment x3 for me) so why would you doubt he would return the favor? He knows the woman he married is still in there just had to modify how you guys interact physically. Can't go out as much with out serious pre-planning ect. But you are his just add much as he is yours. You are beautiful in his eyes and he wants you there. Why ask why the sun shines instead bask in its glow and let it nourish you.

Pain is a factor of our life yet it is not who we are. We push ourselves way past what we should do just because we want to feel useful and as able bodied as our partners in crime. I have to keep reminding myself of everything I wrote here to. You are not alone in this thought process.
Morgan
Posted 8/30/2013 11:51 PM (GMT -5)
Sookie:

You wrote

"because he feels and expresses he's with me because he wants to"

That's all you need to know, and I am glad its that way with you and your husband. I have often asked
my wife of 39 plus years the same thing, and pretty well get the same answer.

Just makes me thankful for what I have. Wouldn't want to be with anyone else. Though we are married,
we have always been best friends first, and I couldn't ask for a better and more loyal friend.

I am glad you have someone of those qualities you describe in your life, makes the rough parts easier.

david
Posted 8/31/2013 6:32 AM (GMT -5)
Sookie your SIL has the saying right but it's missing part. That saying has been around for a very long time and pretty widespread thinking.

It says when a patient says they can't, it means they wont try. Its generally true. Think about here for example, how many threads do you read that ask for advice, suggestions, we give it and every single suggestion we make gets met with " tried that it wont help " or a Med that we know is absolutely the best Med for that pain and they say " I took it for 2 days, didnt help or made me nauseous " when we're telling you some of that will go away and it takes a month for it to work.

That's wont try.

As for mobility Sookie? I suggest talking with your Dr and inquiring about a scooter or power chair, I go to Disney every year, no way I could do that without using mine. Collects dust most of the time but if I really want to do something I know is not going to be good for me I dont have a problem dusting the thing off and going for a ride.

When I got it I had to agree I would not let it become habit. That's not been hard to do because I know it wouldn't be good for me to become dependant on it and losing the exercise I get from walking would be devestating to my health.

There's always a way Sookie to get to point B from A, its just that sometimes we have to take the road less traveled to find it.

I've been here at HW for about 6 years and never told my story, maybe I will now since the general population in CP these days is young and new to the game. Maybe Susie, WB, and Char will also. I think the encouragement you guys will get from hearing them may be enough.

Will see.
Posted 8/31/2013 11:14 AM (GMT -5)
Sookie I am learning becasue at first when my Heaadaches started (they are SEVERE) I gained over 100 lbs and I did exactly what is beign mentioned here. I ISOLATED myself....I didnt think anyone got it....

My Daughter was helping me at the time. I am now and I think you have seen my other posts goign through a medication adgustment to put it mildly and I have No clue how to function.

I posted the other night out of sheer frustraation with my current medical treatment and my partner not GETTING IT.

I agree we cant makes ourselves vicitms of the pain and need to push and I am. I am however scared to death as I have been reallying on public transit....to get stuck outzide and get a severe headhace (i vomit) and stuck........SO im battling within my own head to not overeat, to not get trapped and to not LOOSE what I have had...

I am with you sweetheart, 100%.
Posted 8/31/2013 11:39 AM (GMT -5)
I've spent my entire life dealing with pain and *disability* and I've spent my whole life trying not to let it define me. My mom says my first words were literally "me do" and that I would get downright MAD if anyone tried to help me do anything...even if I was down on my butt in the mud or stuck trying to climb in a vehicle with leg braces.

Almost from the very start I developed this *relationship* with the pain and my body almost like it was a second me. "Okay body, you won this round but tomorrow? Tomorrow I'M getting up and cleaning the kitchen whether you like it or not".

I think keeping it an internalized fight for the most part has helped me separate from it. I see CP (in my case Cerebral Palsy and Chronic Pain) as a really private thing that I don't want people to see.

I have friends who never hear about it, who actually forget about it until they see me walking and remember. And then I have friends I talk to. I have days I refuse to talk about it at all, even with myself.

It's a mind game really when you think about it. It's literally like a black cloud or an infection that will spread and spread if you don't make a conscious effort within yourself to stop it.
Posted 8/31/2013 11:59 AM (GMT -5)
Pain defines your life when it interferes with your ability to do basic things like shower, wash your hair, stand long enough to fix a quick meal, etc. When you aren't able to properly dress yourself the pain interferes with your life and your ability to live it.
Posted 8/31/2013 12:32 PM (GMT -5)
Lexi and DEAD ON. I love it and I want to steal it.

"It's a mind game really when you think about it. It's literally like a black cloud or an infection that will spread and spread if you don't make a conscious effort within yourself to stop it."

Mercy Dead on as well, but we need to try and stay postiive. WE HAVE TO. I am so glad i have three days that I cannot deal with Dr's or BS. I did call the pharmacy casue they started me at my Pyschiatrits on an anti seizure med that helps never pain and I am literally in a FOG. I HATE IT. I also added I HATE being a guinee pig. (i moved new dr's etc.)

ANyhow I am thankful that I do not have cancer. I am thankful I have a computer. I am thanful my chidren are ALIVE. I am altering my head to deal with this........And i advise EVERYONE to FIGHT.

I put on my FB wall "throw me to the wolves and I WILL COME BACK LEADING THE PACK" :)
Posted 8/31/2013 2:25 PM (GMT -5)
Aphena,

I understand what you're saying and I agree. But there is a difference in being Thankful for what you have as well as what you don't have and chronic severe pain that prevents you from doing the most basic things everyday. You can push through the pain to a point. But when the pain is so severe that you fall frequently, it becomes a different matter.
Posted 8/31/2013 2:51 PM (GMT -5)
I don't think so M&G. I think it's at that point that the fighting is even more important. That's the point where you need to make sure it doesn't define you the most. Because if it does...then that's when the depression sets in and life loses its meaning beyond living through the next hour.

I know how hard it is to live like that. When every move you make hurts, when the simple things are almost impossible even before you start because in your mind you know exactly how bad it's going to hurt and you'd just rather not.

And the only way I've found to get beyond that is with my mind. By compartmentalizing the pain and just *doing* even if the doing has me crawling on the floor or crying as I shower or whatever.
Posted 8/31/2013 3:01 PM (GMT -5)
Crying in the shower is one thing and so is crawling on the floor. I'm talking about falling in the shower and struggling to try and get out for 1-2 hrs, just hoping and praying you can crawl out. Having to lay on the floor for several hrs until you can move and crawl.
Posted 8/31/2013 3:16 PM (GMT -5)
If someone is falling in the shower and struggling to get up, then it's time to make some changes, a shower chair, or balance bars etc. The same with being unable to move from the floor. A cane or walker or a wheelchair. But even if those things do become necessary to function, your pain only truly defines you if you let it, IMO.
Posted 8/31/2013 4:50 PM (GMT -5)
YOU are what's in it for them. Look at it this way...if your husband were in your shoes...and you in his...would you still love HIM?

They know it's not your *fault* and that if you *could* do more...you would. I think too often we mistake our "usefulness" for how much STUFF we can get done in a day. I think you'd be surprised how valuable you are just by being you and being there.

Every little bit helps. And you'll continue to improve day to day and be able to do more and more. The best thing you can do for your family right now is stay positive and keep getting better. The rest can wait until it's possible again.

If you stop working on yourself? Then feel guilty! :p
Posted 8/31/2013 8:14 PM (GMT -5)
Merrida/Sookie... You got a new screen name? Everything okay? Its weird seeing "New Member" under your screen name. LoL
Posted 8/31/2013 8:30 PM (GMT -5)
I saw it after I posted the question! LoL

I'm slow :-)
Posted 9/1/2013 5:09 PM (GMT -5)
If no one objects,....I wanted to return to the thread, my previous reaction, and ask others.... The feeling of, even though we're married, and even though I've never been told or given any reason to think this,....I have this omnipresent feeling eating away at my self-esteem, wanting to NOT feel/behave like a mooch living totally off my spouse's income.

I know much of this is the place where therapy comes in, but for those other CP'ers in similar situations, any advice you can share? I don't want my fear of being a mooching spouse end up morphing into something ugly that hurts us, all from my own thinking.


Merrida
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