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147426 tn?1317265632

I can't do this right now

As many of you know I cycle up and down with depression and fatigue.  I just got back from my new PCP (old one retired).  New one doesn't "buy" that I feel I am unable to work.  At each visit he urges me to find something I can do, to make use of my knowledge, to continue to be productive.  As I try to explain my fatigue, he suggests things like, arranging to take a nap in the day, or some other inane suggestion.  I struggle to answer a few questions here before I need to lie back and close my eyes until the world stops whirling.  I have about 3 hours of useful energy a day broken into five or six hitches.  

I tried to tell him I found something that I could do online, and that I got a lot out of it - feeling appreciated, useful.  Instead of being pleased that I'm trying to do something he advised me "not to get a swelled head over it."  I'm frustrated, humiliated, wondering if I am, indeed, as lazy as he suggests or just a wimp because I gave up.  

I have great admiration for people with this disease who vow to fight and not let it define them.  I can only ask, "Fight with what?"  I am exhausted by emptying our four litter boxes or going to the basement to run a load of laundry.  The trip to the doctor put me down for three hours.  Today I am overwhelmed by the pain and frustration on the board.  I can't formulate my thoughts, I can't put simples things together.

The two doctors that treated me with understanding and compassion have both retired.  All the new doctors I meet make some snap judgment about who I am now.  I am so tired of being treated like a depressed middle aged women who claims to be disabled because she is a little dizzy, a little weak and a little tired.

That's all, the tones you hear in my notes are just that, the same frustration, pain, fear that you all feel sometimes.  I miss the person I was!  I was good at it!  I don;t want to be this way!  q

41 Responses
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147426 tn?1317265632
Oh, wow, guys, Thank You!  

You'll be happy to know I have recovered from that incident and "turned" that PCP into a great ally.  He still has a personlaity like a saucer of cold pee, but we work okay together,

Quix
Helpful - 0
Avatar universal
Quix,

I'm so sorry that your dr made you feel bad.  He had no right.  I thought doctors wanted to be doctors because they wanted to help people and make a difference?  You have definitely made a difference to me!  You don't know how many times I have read and reread your health notes.  You are always here for everyone and I look forward to reading your posts.  You are a true blessing!  God bless you and I pray that tomorrow is a better day for you.
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Avatar universal
Quix,
By reading the number of responses to your post, I think it wise to see just how loved and respected you are.

When I went to my last Neuro visit in St. Louis, I was so discouraged.  That Dr. was so belittling and judgemental that I was severely depressed for several days.  She made me feel like I was of no value.  I just kept praying that God would help me remember that I am who He has made me and that my value is not based on some falsehood that others believe.  I know that my health issues are real and I know my limitations are real despite of what she or others may believe.

You know your body.  You know what you are capable of.  You know what you once did and the energy that it took to do what you did.  If you are unable to maintain that level of energy then you aren't being lazy and you haven't given up.  Your body just isn't allowing you to do what you want and what it once could.  

I do feel that God is using you in a different way than He once used you.  I hope you will not let that PCP define your life by his/her false knowledge of yourself.

You are wonderful!
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620048 tn?1358018235
i couldnt figure out why the post was so old, because it is old !

meg
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736590 tn?1280291565
Quix -

You have blessed us.  

What has he done?

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398059 tn?1447945633
I appreciate you Quix.  You have helped me an aweful lot.  Go take a nap.  I will be.
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572651 tn?1530999357
hi folks,
i just want to point out that this is a really old post from 2007 - you're still welcome to post your comments.

Lulu
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462771 tn?1358355843
My sentiment echoes everyone else's here, Quix. When I came to this forum I was scared, worried and confused. You were one of the first people to greet me and help me understand this disease and helped me regain my focus. You helped give me hope for my future. You put so much into helping everyone here and I hope you realize how big of an impact you have. My heart goes out to you and if there were any way I could help carry your burden, I wouldn't hesitate. Please take care of yourself; you're the only Quix we have!
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667078 tn?1316000935
To quix,
    I know that Drs. have to stay detached or the emotions would get in the way of them preforming there job, but it kills me when they make comments about something they have never experienced. For someone who has never felt true fatigue you have no idea what it is like. Even well meaning Drs say stupid stuff.  You are great.
                                       Alex
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764912 tn?1322711843
So sorry for "stupid" Dr's --that is my word of the day--stupid.  "Stupid is as stupid does" LOL and the did stupid.  
You are like the elastic for us, even the short time I have read and posted here, not dx myself, you hold it together, so many people appreciate and need you.  
Here is to hoping tomorrow is better for you.  Wish I could make it so.  Hope maybe I made you laugh.  

hugs,
Tracy
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Avatar universal
Sorry about the empty space above.  Pressed the wrong key as typing in the dark.

Quix, perhaps you can borrow my doctor, one of whih is not an ms specialist and she is very young which would imply she she does not have extensive knowledge about ms.  Well, she does not.  But, boy she is very compassionate and supportive.  Even though she can not do much for me other than prescribe the medicine my consultant asks her, she has asked me to see her as much and as often as I like, if it helps me.  Yes, I was only dignosed last week only and talking does help enormously.  

Every day is not a good day for everyone,perhaps tomorrow will be a better day.  I get the feeling all those people that replied to your message really need you (incl me).  Your knowledge and encouragement gives people strengh and motivation.  

Janey1
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251222 tn?1270936117
Yay Quix, I am so glad you are back! Big group cheer and hug!
Omg that is major ironic with the doctor's nephew. I watched that movie and loved it. I swear if I was a doctor I would lay awake at night thinking about my patients and wondering if I was missing something, some way to help them or what was wrong with them.

Quix am so thankful for your insight to my situation and your help. I think we all feel like we are flailing about treading water and need rescue. Your words were an huge help to me. Thank you so much.

I am amazed how I find my thoughts being spoken out by others here on the forum. (big smile).

"I used to be a very laid back, easy going person and have found myself becoming more and more defensive the past few years for fear of being deemed "easily disposable" to these particular physicians"
Jules that is me to a T. I dont' like how this whole thing is changing me. I want to be the person I was.. not this unwelcome, altered version of myself.
My mind is styrofoam today, I hope I am making sense. I can't even think how to spell and have to keep looking things up. :(   Lord I can't think straight. There was a ton more I wanted to say, but it has left the white matter diseased building. Lmao  (have to laugh or cry)

Jazzy



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Avatar universal
I've only posted on this site for two days, but I can tell your response to me helped tremendously.  As I read through the boards, you have found a calling for all of us, no matter where we are in the process, the disease, the complete unknown for many.  It is nice to have someone who does have some medical knowledge that can make us feel human and not just a patient coming through the door.

I have been very lucky, that I'm moving through Dr's fairly quickly.  Though at this time I'm not sure if this a good thing or bad.  Good in that I won't sit in limbo-land for many years, but bad in that it is apparent there is concern about my problems.  I can't imagine the pain that you and many go through wiht Dr's who just dismiss the issues.  

I guess I used to dismiss my own issues thinking they weren't important, a Dr. wouldn't take me seriously.  Fatigue=hormone out of whack even though it came back normal.  Now, I'm taking note thanks to you and this board.

Try and keep up the fight, and know there are people on this board that completely understand.  It is truly one of those times when one has to walk in your shoes or follow your path to understand.  Like I said in my post, while we don't know what my problem is, it is a serious issue and I can't take another well meaning friend telling me not to worry, they are sure everything will be fine.

Big hugs!
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Avatar universal
Yea!!!!!!!!!!!!!!!!!!! You're back!!!!!!!!!!!!!!!!!!! You sound sooo much better!!!!

Here's hugs to you))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))!

Much love and support,
Doni
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Avatar universal
Oh sweetheart, I started tearing up when I just read your posting.  I have been out of town for a while and just got in today, so I haven't been on the board at all.  I want you to know that I am giving you a big hug right now!  There is no advice I can give you that hasn't already been lovingly given.  I just want you to know I am here for you and completely understand what you are feeling.  Stay strong and know that you are loved!

Jenn
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219373 tn?1274921434
sorry to hear about your troubles...please know that it is only people like you who can actually understand what some of us are going through.  Some of your posts sound so much like me it is scary.  I do not know what is wrong with me but whatever it is...i  know exactly how you feel...except I am not middle aged (not yet at least)...but sometimes I feel like an old lady (not that there is anything wrong with being opld)

It sometimes makes me feel very hopeless when i have to be helped to the couch by my husband after vacuuming 2 rooms in my own home and not being able to sit through a church service without feeling like my head is going to roll off of my shoulders...I guess st least you can be glad you have a reason.  At this point people continually ask me..so what is wrong with you...and then of course everyone has there own theory of what is wrong with me or what medicine i should be on or what foods i should eat or herb i should take, now it is just becoming anoying=(

how can a 32 ...wait I think I am 32...I can not even remember my age anymore...the other day I even talked to my husband about going to see the fourth of July fireworks...he looked at me like I was insane...I did not even understand it was because it is almost September...HELLO...anyone home.  Anyway, I understand, we understand and I am glad that you understand me!  i am glad to know there is someone else out there who needs a nap after doing a load of laundary!!

take care=)
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Avatar universal
Some dr's can be such jackasses!!!!!!! for lack of a better word;)  I'm so sorry that you've been put through so much and and feel that no ONE should have to FIGHT to feel better! It's ridiculous that certain individuals in the medical profession have found it worthwhile to belittle so many that are merely trying to understand what's happening to them!!  I used to be a very laid back, easy going person and have found myself becoming more and more defensive the past few years for fear of being deemed "easily disposable" to these particular physicians.  It is a sad state of being when you have to battle with medical professionals for your health!!  

Hang in there Quix!  I don't know you personally, but I've read your posts and clearly see just HOW important you are to the many people that have grown to care for you as a person and respect your advice/education!!  There need to be more people in the world like you! :)  

I'm sad to hear about the overwhelming fatigue!  I don't really think that people understand this is not your "ordinary" exhaustion?  I hate it myself that at just 35 yrs old...it takes everything out of me just to keep up with the laundry on any given day!! I can remember just a few years back being able to clean the entire house, do laundry AND run after the kids all day!  

Hang in there:)
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147426 tn?1317265632
Oh, my...I have no words for what I am feeling reading your words.  Thank you so much!  You have touched me a most profound way.  I printed all this out and it will, indeed, sustain me when I swing low as I did a couple days ago.  That lability is more the disease, I think, than the doctor.  My family felt that he was just being droll with his fat head comment and I am just too tender to perceived criticism.  Thank you, thank you.  What a wonderful bunch of friends.

I have to share something ironic and soemthing else funny.

IUMOM mentioned a movie caled, "The Doctor." with William Hurt.  It's about an arrogant surgeon who gains humility and compassion when he is forced into the patient's role.  He then takes what he learned to the medical school to impress upon medical students the need for empathy, kindness and patience.  That movie is based on a true story.  The doctor was in practice in my city and is now retired.  His sons and a nephew are currently in medical practice.  IRONY ALERT!  His nephew is  my old, "evil" neurologist, and has the poster for the movie right in his waiting room.  When I wrote him my nastygram, I told him that poster was false advertising.

FUNNY ALERT - My new kitten is a 3mo rescue.  Her name is Clyde.  She still wnts to nuzzle and nurse when she's sleepy.  This morning she was nursing my mom's neck - and gave her a hickey!  If that doesn't put you in a good mood, what will.  So my mom and dad have to return to their retirement complex and explain mother's new.....uh....lesion.  What fun!

Again, you are all so special to me.  I'm back, let's Rock!  Quix
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Avatar universal
Pay no attention to that man behind the white coat.  Sounds like HE's the one with the swelled head and that his practice is all done with "smoke and mirrors."  I won't even dignify the way he treated you with a rebuttal.

Now, enough about him.  Let's talk about you.  I echo all the sentiments here of your value to the people here, your dedication to using your knowledge, education, and experience, and not just sitting back and resting on the laurels of what I have no doubt was a successful practice.  

I have the utmost respect for (good) Pediatricians (and I have no children, so it doesn't come from personal experience).  It comes from realizing that you must have much better diagnostic skills, and be more observant than a PCP.  Many of your patients (especially the very young ones), can't tell you how they feel, they can't give you a history, in reality, they can't do much to help you help them.  

The skill you developed as a Pediatrician - to see and hear beyond the ability of the patient to present symptoms, or give a good history, is what makes you so very good at what you do on this board.  You use your diagnostic instincts and the drive to research and find answers to a degree most physicians don't take the time to do - why?  It's NOT to feed your ego, and certainly not your bank account, but because you define what a physician should be.  And are continuing to be exactly that to the people here.

A physician should be someone skilled at finding answers that help people understand and deal with the disease, or symptoms of a disease, that plague their lives.  We come to you with words typed out on a keyboard.  You can't see us, or hear our voice or examine our bodies - yet your insight is AMAZING!  The questions you ask, the observations you make, are all those of a physician who has extremely keen diagnostic skills, and continues to use them and to develop them.    

I understand that the insensitivity of people, especially those to whom you are vulnerable, can make you feel frustrated, humiliated, and like you gave up.  But the truth is you have done anything BUT give up.  You are fighting a good fight.

I love your screen name, and I understand how you must feel like you are flailing at the wind, trying to make sense of your day, trying to weave your way through the disease, trying to keep your life vital.

Please know that each of us here consider you to be a success, right NOW, not just in your previous practice.  You are succeeding in helping people in a way that is much harder to do than when a doctor sees a patient in the office.  You are working hard girl, each time you get on this board.  You work hard to work through the symptoms of the disease that make it difficult to read, to write, to think clearly, to stay up long enough to complete a post.  YOU ROCK! ! !  I can't say it enough.

As a matter of fact, I have told many of my friends about you - about how you give of yourself here, and how very valuable you are to the many people with questions and fears who are looking for answers.  

Please know that each of us here want the very best for you - however that plays out.  If that means you need to take a break from the board, then take a break.  Take a vacation, if you will, and feed your soul.  I know helping people feeds your soul, but I'm sure it takes a lot out of you as well.  

Know that we support you, and love you, even though we've never met face-to-face, I think we've met heart-to-heart.  And our hearts thank you.  You don't have to feel "up" to be here.  You don't always have to be the strong one.  You can bring us your pain.  Sometimes we need to be able to give something back to you.

We will hold you up in prayer.  We will speak to each other of the wonderful things you have done for all of us.  We will love to hear from you when you are able.  And we will respect you for taking care of yourself, as well as for everything you give to those on this board.  

Thank you for being so transparent, and for allowing us the privilege of telling you how much you mean to each of us.  

Much love to you.

~Elaine
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Avatar universal
hi quix

i posted a msg very soon after you posted yours, somehow it didnt show up, just to say that i really hope your feeling better at the time of reding this and no matter who tries to pt you own, do you best to bouce back because your the so much better person. have faith , we all have bad times all we can do is carry on, please do, have faith in yourself your a brilliant and thoughtful person

harrie
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Avatar universal
Just wanted to keep this near the top so when you are able to catch up you would not have to search too far.

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Avatar universal
I'm sorry for what you are dealing with. You mean a lot to us here (isn't that obvious?:))

What you are doing here is important!! It doesn't matter what anyone else thinks. I think all doctors should experience a chronic illness if only for a short period of time. Did you ever see the movie The Doctor? William Hurt plays a no it all doctor who becomes ill. In time, he changes in realizes how wrong he's been about treating his patients.

I can relate to your PCP not getting things. The last few times I've seen him have been in the late afternoon when I am totally exhausted. It seemed as though he thought I was depressed. I'm not just have periods of extreme fatigue.

Take care of you for now. If that means you need time away from all of us, well, we understand.

IUMOM
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Avatar universal
You are loved...you are defined here!!!!!
JonM
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Avatar universal
Quix, as being a new person on this forum, I want to thank you for your insight and compassion in answering my questions.  In the past year, I have met more than my share of uncaring, arrogant physicians, even ones who have told my wife she would be better off without me holding her back in life.  You have inspired me this week and helped me to think that maybe there are still nice people in the medical profession.   Thank you.  Your knowledge and empathy are priceless to this forum and all the hurting people with this horrible disease.
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