Pretending I'm OK

[coco31]

Hi all,

Its been a while since I updated. I seem to have gone on a fiction reading marathon and it has limited my surfing time. anyway........ I had a review with my neuro yesterday. A six month follow up.

I walked in to the office, sat there and told the neuro about how good I was. How great I feel. How comfortable I am. Everything is fine.

But I knew deep down that I slurred while waffling about how great life was. I knew that my left arm was tight, my left leg felt dead and I was friggin exhausted, I just knew that there had been some big changes in the last six months - and I am still to some extent in denial about that. But I smiled and tried to get through it just wanting to be GOOD, for it all to be just once NORMAL and I honestly believed that if I sat there and convinced my neurologist that life with MS was perfect and not having any effect on me that it might actually be true.

And so came the physical examination and I knew I was going to be caught out. I was. After it came the question "how do you think that went"? and I knew exactly how it went but I simply said "great - I think" I was still hopeful. How silly am I?

It was right about then that I was told I needed an urgent repeat MRI and reveiw in 12 weeks.

IMAGINE:
I had actually went for a reveiw thinking that if I told the neuro and myself how good I was then I would be.... I could be!

And ironically I was totally prepared to ask if there was a possibility of a misdiagnosis. I had even at one point convinced myself that maybe I just had a migraine on the day of my first MRI which showed up all these lesions and they are probably gone now. Again how silly am I?

I wanted to believe that I was so uneffected by MS that perhaps - maybe just maybe - I dont actually have MS - and I convinced myself that this was possible.

I was wrong.

MRI here I come.

[Saadbell]

I am an expert in the denial field, didn’t dx almost 12 years ago started on betaseron and did that for about 2 years and than on my own I stopped and decided that I did not have MS, and it wasn’t until I had a partial focal seizure and lost all awareness of the seizure.  My mom saw it and she became concerned. I than had to finally admit I have been having seizures for about 5 years, once again just pretending.  So yea, I am right there with you pretending everything is greatttttttttttttttt.  Hang in there you are not alone in this fight.  I just went back and was started right back on betaseron and a ton of other lovely meds.  These symptoms makes it hard to pretend, bummer.

[Sumanadevii]

Someone brought it to my attention and so then I did reread your post ...that you have already been dx'd.  So to be honest with you, my visits to my neuro go about the same way.  If nothing new is shaking, I am fine.  She has all my notes and continues to prescribe the same medications.  It is exactly as you said a "review" of my symptoms.  I wouldn't need to repeat what has been said previously unless they had become worse.

So I do agree with you.  In fact, why would I waste her valuable time listening to the same thing over and over like a broken record.  She and I both do know the pain I am in and the work ahead of us.

Sorry I jumped the gun on this one...

Sumana

[addicted2harleys]

Thank you.  I am going to print that out.  I am having trouble right now with my brain.  I am noticing that I am not retaining info, if that makes sense.  My mom talks to me and i am not really registering what she said, if that makes sense.  I feel like I have forgotten things that I should know.  Weird.  

You put that exactly how I needed to hear it and exactly how I want to live it.  I think I need to read that everyday to remind me.  

Thanks again,
Tonya

[COBOB]

Tonya,

I am not disabled.  I am a person with disabilities.  It is kind of the difference between a car that won't run and a car that runs a bit rough.  At least that distinction helps me a bit.  I'm still alive and kicking ... not broken down and abandoned.  I really take the effort to remind myself that "MS doesn't define me.  I get to show others what I can do with MS."
That includes snowboarding (or what others call "Big guy rolling down the hill!)  May only be one very ungraceful run, but I try.

I have coworkers that are Handi-capable vs. Handicapped.  I guess it depends on how we choose to "own" our condition. I am a Person with MS and a Person with Disabilities, but I choose not to except the labels "Handicapped" or "Disabled."  

Bob

[addicted2harleys]

This topic, I believe, goes right along with Bob's fear thread.  I think it is perfectly natural to have these feelings.  

It is kind of ironic for me.  I am undx'ed at this time.  I keep plugging away through the tests and doctors to get answers and push for a dx of something to explain the reason why I am having these symptoms, yet sometimes when my pcp asks how I am feeling...my response is a smile and one word...fine.  Usually he just smiles back and tells me he knows that it isn't true.  

I do this with friends and family, too.  Sometimes if my mom hears me, she throws me under the bus.  Lol.  

When I first started having neuro probs and MS was thrown out there to me, I went WHAT???  I didn't know what it was.  I didn't even know what the M and S stood for.  Then after I learned up about it and found out how the dmd's were administered, I kept saying, "someone forgot to tell my body that I am allergic to needles.  I am not a good candidate for ms!!".  

Though i still remain undx'ed, I am still legally disabled.  And I can't stand to be called disabled.  I think it comes from fear.  I have been known to say that, no, I am not disabled.  I just have different abilities.  :)

Well, shoot.  I got a bit sidetracked here.  And I forgot what I was gonna say.  I know it had something to do with feeling the same way, even without a dx.  

Hugs to you, Sharon,
Tonya

[Sumanadevii]

Keep right on pretending and lying.  Just don't whine when you don't get a dx.

[jujuminx]

Oh.....me too Sharon.  For what it's worth, I thinks it's a normal response to an abnormal change in your life. It's hard to wrap your brain around what it all means and you so desperately want to get back to the old "normal".

Funny, for so many years I had MS and didn't know it and when I finally self dx myself, I had to literally force myself to call for the follow up to the neurologist.  Deep down I knew what the dx would be and I just didnt' want to hear it. It would really be real then, and not just my "knowing" I had it.  Even when the neuo said the words that I had it, it was surreal and I kept thinking, "he is not really saying what he is saying".  

To be sure we all have our moments, and sometimes longer periods of times, when we think that the dx must be wrong, oh please, let it be wrong.  To go from never having to take any meds for anything and now taking a daily injection is just too much to take sometimes. How can this be true?  Someone must have made a mistake.

I spoke with a woman in California who is in her 60's with no obvious impairment from her MS. Her best advice was to believe in the positive of everything. Find the joy in the moments of peace. And she had no problem with denial like we are talking about.  Just don't let it effect the way in which you care for yourself or following up on your medical care.

Hang in there girl, we understand.

Julie

[HVAC]

I have been waiting for them to say just kidding we were wrong. I guess the truth for me is I am the same person with the same symptoms, well a little more before and after diagnosis so what does this label really mean? It is still hard to get my head around. Cancer is a diagnosis I thought about in my lifetime. I never thought about MS, heck I did not know what MS really was. For that matter I did not understand what a Neurologist was. ME MS I did not even know to many people with MS. I was young and strong and healthy.

Alex

[sllowe]

For what it's worth, I'm still pretending. I guess to get through each day w/issues you have to do a fair share of pretending to pull it off - it's only natch to do the same at the docs office ....ah, sigh but the good ones know.

Good old fashion stubborness, or denial, who knows.... can't blame us for wanting desperately some normal!

Let us know what the images tell!
-shell