My Best Is Not Good Enough

Yesterday, on my way home from seeing Dr. Painless I snapped this photo with my phone:

It's such a pretty drive to, and from, his office.

I really should have stopped at the beach for a few minutes, but I had too many things to do.

I'm starting some new pain medications (Lyrica and Dilaudid) as soon as I hit "publish" on this post.  I was afraid to take them and then try to write, because I don't know how they'll affect me.

I might fall asleep.

I might start giggling.

I might not make any sense.

In any case, I didn't want to experiment on you.

I have a confession to make.

I started crying when I went to see Dr. Painless.

It's not like me at all.

I've never cried in front of a doctor before.

I did cry on The Torturer, but he was inflicting inhumane amounts of pain on me, so it was different.  (Also, he was my physical therapist - not my doctor.)

I was just talking to Dr. Painless and I started crying and couldn't stop.  I'm just so tired of living in pain.  I'm so tired of the ups and downs and nonstop roller coaster ride which make up a life of chronic pain.  I've had two bad flare ups in the last month ...

And yesterday, when I was with Dr. Painless, I just fell apart.

I felt so bad.

Embarrassed.

Ashamed.

Sorry to put him through my falling-apart-episode.

I wasn't going to write about it, but two things struck me.

The first thing was, I know a lot of my readers suffer with chronic pain too.  It helps me to write about the things I go through, but I've also learned it helps other people too.  It's nice sometimes to know you aren't the only person in the world who feels this way.  I'm probably not the only person ever to fall apart in front of their doctor.

(Somebody?  Anybody?)

The second thing that struck me was a comment I got yesterday.  One of YOU mentioned the fact I have to think about my "every move" and how it will impact me/my pain level.  

Yes, I do.  

That is exactly what my life is like.  I have to think about every single thing I do with my arm/upper right quadrant of my body and decide whether or not I think I have the strength, the capability, the function to do something.  

Sometimes I'm wrong.  Sometimes I drop things when I try to carry them because my arm simply gives out - even with the lightest of items in my hands.  One second I'm holding something (a letter?  an empty glass?), and the next it's suddenly on the floor.

It never seems to happen at a convenient time either.

Go figure.

I also have to think about whether each minor movement will be "the thing" to set off my damaged nerves and send me into a flare up.  Of course, there's usually no way to predict that.  I might do something one day and be okay.  Doing the exact same thing on a different day might send me into a five day flare-up.

You know what doesn't help?

It doesn't help when people get angry at me for dropping things.

And people do.

It doesn't help when people blame me for not doing better or being stronger.

And yes, people blame me with both their attitude and their words.

It doesn't help to have people impatient with me, or getting upset with me, when I have to ask for help.

Both of these things happen a lot.

I hate having to ask for help.

Hate it.

(Maybe because I'm made to feel really terrible about asking.)

I also sometimes wonder why it never occurs to those same people to offer help with tasks involving my arm without waiting to be asked.

I mean, the people who know me best know I'm living with a disability.

They know, if I'm using my arm - it hurts.

They know, the more I have to use my arm - the more pain I will be in.

They know this, and yet ....

Are they in denial?

Are they resentful of the inconvenience my injuries have caused them?

Are they self absorbed?

Are they thoughtless?

Are they just waiting around to see how much I can endure?

Maybe they are.

All I know is, I'm doing the best I can.

Every day with pain is a challenge.  

Every day with pain is a struggle.

Every day I make an effort to do as much as I can, the best I can.

I need support emotionally and physically.

Too often, for one reason or another, support is not there.

The pain and the disability are bad enough.

I shouldn't have to also deal with people making me feel like crap for a situation I never chose and have no control over.

No one should have to live their life this way.

But I do ....

© Twenty Four At Heart

Comments

[Joanne]

NO one can ever understand what you feel. That is true on many levels, but pain and disability they do not understand, because they are not YOU.I am urging you to be as tolerant of their incompasity to know your pain as you would like them to be toward your disability. Stop abusing yourself, put on that sweet TFAH smile and ASK THEM FOR HELP!! I was an impatient "do-it-myself" control freak until I was put out of commission. I had no choice but to rely on others, and I am a better person for it.You have to start drawing the line on things you CAN do, things you CANT, and things you need HELP with and stick to them.hopefully that way you can ease your way back to enough strength to do the things you have such passion for without suffering. (lecture over, I love you!)

[Jenny in MN now AZ]

Anger, sadness, disappointment, frustration, wanting to scream until the others in front of you 'get it'....broken heart at what life with chronic pain and being restricted from what used to be your life. Yet, not willing to let what life we have left to live - pass us by. The chronic pain, the lack of what you can do...when you really just want to be ABLE...So amazing the emotions and wide range of things that you experience when your brain and heart wants to do and your body fails you. Lower your expectations and accept oh and ask for help -ha, so easy to say...SO hard to do!

Those around you are hurt and frustrated for your situation too - most likely. (?) It is hard to see someone suffer, but being the one suffering the actual pain and limitations...it is so hard to put yourself into the mode of thinking how others are dealing with it. I've always taken everyone else's reactions or inactions and felt like they were disappointed and upset with me. I'm constantly misreading someone's reactions to me. But asking for help - actually hurts on many levels...so I keep trying to do for myself. They all KNOW, just do then and stop waiting for me to ASK! But they forget. And so the cycle begins again... Your best and probably your worst is WAY good enough. Relearn how to 'be' and if those around you don't like it, they need some serious help! I hope your new medication helps you and you can find some type of relief. Big hug!

[Ginger]

No words of advice here. I can't imagine what you've gone through and continue to struggle with. Just an acknowledgement of yes, people often break down in front of their doctors. It happens all the time, and I'm sure he is used to it. Hang in there, sweetie. You are AMAZING. (((HUGS)))

[unmitigated me]

I have, on more than one occasion, been reduced to a puddle of tears and snot in the doctor's office. Once, with the asshole I no longer see, who's response was, "Well, I guess you've got a lot on your plate."

The most recent was actually in an emotional release, because it had been so long since I thought anyone could actually help me. I have two pieces of advice: Keep working with Dr. P. because he CAN help. And keep trying different meds combinations until it helps, because it WILL. The fuzzy, sleepy, drunken feelings usually stop once your body is accustomed to the pain meds, but you have to be willing to take them before the pain gets crazy out of control, and this comment is turning into a sermon. Sorry, 24. Sending all my love, and hugs, and a butler to help with the stuff you need.

[WebSavvyMom]

-->Bless your heart. Maybe you're like a lightning bug after all, always trying to keep "the light" on.
(Saw them again over the weekend and thought of you.)
~deb

[Deidre]

I've cried in the Doctor's office (and I don't even suffer from chronic pain!). I went on the pill last year and for nine months I cried every day for hours (I'm allergic to the pill apparently). So I cried in front of my doctor a lot. I cried in front of everyone a lot - and that isn't like me AT ALL.

I hope these pain meds work a little bit of magic.

Sometimes I don't offer to help people because I am afraid they'll think I think they can't do it themselves. I never really considered the fact that maybe they actually can't. (this might stem from my grandmother who CAN'T do it herself and will yell at me for a long time if I try to help.)

[Jo Anne]

Photo is beyond beautiful -- so makes me wish I could sit in that chair and just "be". But, no am land locked in Tennessee with heat and humidity. If love healed you would be 150% -- there is so much love and support for you here in this cyber world. I, too, hope the new meds work. I would be so excited for you to have a mostly pain-free life. Crying in front of the Dr. -- I am embarrassed to admit how many times I have done that. I assure you that you are NOT the first to cry in front of Dr. Painless. Hugs, love and prayers to you.

[Jan]

I bawl at the drop of the hat, and my chronic pain (which was NEVER as bad as yours) has almost completely disappeared.

You might want to consider the fact that someone who gets impatient and upset with you because you can no longer physically do things you used to do is abusive.

[Di]

I've cried in front of a doctor before... during heart palpitations. Physical problems can be very scary and wear us down, stomp on our stiff upper lip, which no doubt you are dealing with constantly. Cry when you need to my friend, it's nothing to be ashamed of.

Nothing to be ashamed of at all.

Di
Sending a hug your way today.

[Kelly]

Oh girl, you have more than EARNED the right to cry. You have been through so much. I've cried at the doctor and I've not gone through a fraction of what you have. People are self absorbed and thoughtless, that's a fact. It sounds like theres also resentment and anger from those around you. People don't always understand why they behave badly. Maybe they're angry you can't do what you used to be able to do. I'm with Jan though, it sounds like emotional abuse. If you can't get THEM into a shrink you should go alone. It will help you be strong in dealing with them. Love you.

[Erica]

I cried all over my doctor once. Those examining rooms aren't sound proof so I'm sure everyone heard me. Don't worry about it.

I think that the people around you don't offer to help because they're thoughtless, not resentful. It's difficult for you but you'll have to ask, just to remind them that they should be helping.

My heart goes out to you.

[Tami]

Not thinking to offer help is just thoughtlessness, carelessness, self absorption. Getting angry at you is inexcusable and an entirely different animal. Whoever is directing anger toward you needs some seious psychotherapy. You do not need to put up with it and you shouldn't put up with it. Life is short. Surround yourself with loving people because you are VERY lovable 24.

[Missy]

I'm with Tami!

[Bernadette Smith]

I hate asking for help. It seems like I am being weak/helpless when I do, so I do the most ridiculous things to avoid asking/needing help.

No one else has any idea what you have to deal with every single minute of every single day. I can't even imagine. You are tough and I think people may misinterpret that and assume that you have got it all covered.

As far as those people that get angry at you, perhaps they think that you are somehow exaggerating the pain? Attempting to get sympathy, etc? Because that is what they would do?

Not sure, but I would cut them loose. Life is too damn short.

[Jane]

When I was ill I said the same thing -- I didn't plan on this; I didn't have a choice -- and a loved one told me they didn't plan on it, either, and it wasn't their choice to be held somewhat hostage to my illness. I know, mean, right?

Except the more I thought about it, the more I realized that they had a point. My pain wasn't theirs but they were sharing the consequences of something they had no control over, either. They were powerless to cure my illness but were chained to it out of a sense of duty and family. And the more I complained, the worse and more powerless they felt...and the sicker I got, with no end date in sight, the more fearful they became that the situation would never, ever ease up--that they would spend their lives having to assist me in ways they never planned on. They felt guilty for having these feelings, which only added to the tension--and it often felt like anger when it was really frustration.

I can't speak to you or your situation, only my own, but when the communication opened up and became mutual, I realized that my illness had made me myopic. In pain, I didn't consider the affect that my limited abilities had on others. They were healthy, I was not, and since I felt like crap for asking for help, I thought that was penance and/or appreciation and/or fair enough.

What helped was an all-out share fest of listening and me becoming willing to hear suggestions. What I heard was "plan better", "give me some notice", "don't get mad at me when I'm in the middle of something" and more. When I changed some of my tactics and realized that they, too, were going through their own feelings, the situation changed for the better.

[Linda]

This post is a request for help and I hope "they" read it and understand how down you had to be to share this with "us". Now the question is will "they" sit down and talk to you about what everyone in your household is feeling? Or will this post make "them" resentful and angry? Perhaps some counseling would be in order? If resentment and anger are "thier" response to this then something is not right.

[Rachael]

Yeah well I can top that. My dental phobia is so bad... I cried in front of my medical doctor just talking to her about that! Ha!
actually, my 'real' comment is that ya, it makes sense, you're letting all your vulnerabilities show so of course you are much more open to cry. But ya... suddenly I was 6 years old again. :/

The other thing I want to say is, of course! You don't 'look' disabled. Maybe if you sewed a big red star on the right shoulder of all of your garments... nah. :/

One time, after my injury that I told you about, I was under strict orders not to bend -at all- or lift -anything- (our file binders are typically 10+ lbs). So, I went around my offices, including the file room where I might be tempted to lift something real quick like, and put post its all over everything, to remind myself. I think it reminded other folks too because pretty soon they were chiding me for lifting files. So that worked, for me.

[Kailee]

Left a comment and it didn't "stick." Trying again. I too have lived with years of severe pain and a family that doesn't "get it." I'm very aware they didn't sign up for this, but for them it's an inconvenience. For me its breathtaking pain and limited ability to function. If they'd like to trade places with me FINE. If not, they need to get over the minor inconveniences and man up. I had to leave my husband before he got it, and we are back together now. I hope your family wakes up befoe that happens. Pain destroys everything in its path. Also, in reading Janes comment. Don't know about her situation but my pain flare ups never gave me any warning so there was no "planning" around them.

[Kelsey]

24, I have never had any experience with chronic pain (either myself or a family member/friend) and I want you to know I really appreciate your blog for opening up that world to me! It is educational reading the comments too....it is always a helpful reminder to realize I may not know the whole situation for any person, and the true difficulty of living in pain. I am so sorry this is something you have to go through, but so thankful you have chosen to share your experiences!

[Macarri1]

Please keep writing about your experiences. It helps me so much. I am delurking to let you know that your grace and dignity help me rethink how I am approaching things.
I have fallen apart in front of my oncologist and my regular doc when I was having trouble dealing with my limited mobility and pain management. It's tough and the people around you have no choice but to deal with what's going on with you. It's been hard for my family and friends to adjust to my new 'normal' but they are slowly getting it. Good Luck to you. I hope you can find something that will help you manage.

[Alexis (Minnesota)]

S,

Bad days suck. Period. Sounds like you made it through another one so for THAT, I thank you! Now, I've read your writings start to finish (at least as much as they're available after "the thing") and one thing is clear: you're fiercely independent and forever testing the limits you have. I don't know if you were like that BEFORE the crash but it sure seems like you're like that now. That said, I think you've exceeded all expectations because you refused to settle for someone else's limits. Blazing new trails for yourself can come at a cost and you've written about those costs often. Push a limit today, pay the price for the next week. BUT, based on your writing, you usually are able to push the limit and stretch your abilities a tad more with each attempt it seems.

I think though (and I'm no shrink) that it's got to be tiring, it's got to be downright exhausting to constantly try to achieve things that you used to be able to do without thinking. When we're tired we tend to be more cranky and more emotional. Seems like it might be cyclical. And, for you, it's never ending. So make SURE you take breaks - like maybe planning extra time to STOP at the beach and breathe.....just sayin.

As for people offering to help - it's the current state of our society. Around here people hold doors for others. I don't see that happen in a lot of other places. Everyone is in too much of a hurry. And, sometimes people don't want to intrude. There's a fine balance to be struck between knowing when to help and feeling like you're interfering with someone's progress. THAT's when it falls on YOU to speak up. I wouldn't want to jump in and do something for you if you were trying to figure out if you could do it yourself and wanted to do it yourself. On the other hand, I'd be glad to do something for you if you asked because that's my nature. One thing I'd love to do for you is to track down the idiots who made you feel bad because you asked for help.....I'd jack-slap those a-holes from here to next Tuesday. But, again, that's just me.

Please be gentle with yourself. You have a whole lot more years of NOT dealing with this crap stacked up behind you than you do since the accident. In perspective, this is still relatively new and developing. As with most things in development, it takes a while to get the focus and get the balance right.....perhaps that's what they mean when they say life imitates art, eh?! Slow down, breathe and understand that when things are out of focus now.....they just need to develop a little longer....a little slower.

Thus endeth the epistle.....

Love ya girl!

[Karen]

I know your frustrations but I have a different disability. I am close to deaf, and my family gets really tired of having to face me when they talk to me. To speak clearly. To speak up if we're in a crowded restaurant. To see the closed caption on the screen. To know I don't hear well on cell phones. Text is better. They forget because I "look" normal.. my handicap is not visible as a reminder. The impatience and snapping at me when they ultimately have to repeat, the eye rolls, the heavy sighs.. it gets real old. I didn't ask for it, and yet I will pay forever, through my own handicap and the impatience.

I hear all the time (no pun intended) "YOU don't realize how FRUSTRATING it is if I have to repeat myself!!"
Can you imagine what I feel like having my whole world sound like garble underwater 24-7. Searching out faces and lips to get glimpses of a conversation. It's a lonely place to be.

I'm sorry you have this in your life, Suzanne, I wish I had answers.

[Manxmnews.blogspot.com]

24
I understand completely. I don't live with chronic pain, but I live with imbalance issues and inner ear problems which all began with terrible vertigo. I look normal, but life has taken it's toll. None of us like to feel we are losing our independence and asking for help is a kin to becoming dependent. Also, I can understand the family/friends who might misinterpret all the emotional aspects of what you are going through. It is frustration on their parts. But you are resilient and I know you will find the right combination of therapy and medications to help yourself.

purrs
>^,,^<
♥Abby♥

[Momo Fali]

I'm so sorry.

I also have the overwhelming urge to kick the ass of the person making you feel bad. You shouldn't feel bad for something you can't control. I love you, sweetie.

[missmolly]

I am so sorry S for the humilitation suffered at Dr. Painless' office. I understand not wanting to break down in front of anyone, let alone your Dr. But I am sure he has had more than one person dissolve into tears before and you will not be the last to do so either.
And while I can't truly understand the pain you are enduring, I pray you will find some relief. I hope the new meds will offer you just that...some relief.
Please know there are a lot of people out here who care for you. <3

[LPC]

Oh I so feel for you. I hope you move forward. No, I feel that you WILL move forward. Things will get better. xoxoxoxox.

[Cathy B]

You have some terrific comments above that I hope are helpful and just what I would say! So I'll send some hugs ((((((24)))))).

[Deb @ San Diego Momma]

I just broke down in front of my doctor last month. And the month before that. I'm dealing with a chronic condition I CANNOT SHAKE and it's so frustrating.
But nothing, nothing like what you must feel.
I'm so sorry. You are always upbeat as far as I'm concerned. You're allowed some down time.
I hope it gets better.

[Maura]

I've sobbed all over my doctor a few times. The first time it happened is when she put me on an anti-depressant! So, really, it was the best thing that could have happened.:-)

I'm sorry that you're struggling with pain so constantly, and I'm really hoping that maybe this new combo will offer some relief. (((hugs)))

[Karen in East Texas]

I perfectly understand where you are coming from. I live with chronic exhaustion and pain and I seem to be in a steady decline the last few years with other medical issues. I am naturally an optimistic, laughing, independent, self sufficient person. I raised a son by myself and he is now 20 and attending college. But, I hold all the negative stuff inside.

This doesn't bode well for my doctors, because when I start talking about what I feel like and what is actually going on, I fall apart. It's like a damn bursting that was holding back an emotional tidal wave. I'm so very lucky to have a wonderful group of doctors, who listen, comfort and work together to help me in any way they can.

I was an Aunt known for her BIG HUGS, now it hurts to give them. So I send a lot of virtual ones.

Big Hugs