13 years and really tired!

[pedinurse]

I am new to this board because I am a RN and I know all about illness or am friends with Drs that can answer all my questions right? Wrong!!!
I do not want to scare or discourage anyone newly diagnosed because I have had 13 wonderful, productive years. It has been in the past year I have gotten worse, but onset was illness not MS alone. I am now on disability after nursing for 35 years. I think that is what I am the angriest about.

I have a great husband who worries more than I do, great doctors, two great sons. So much to be grateful for, but so tired. I have an appointment with neuro in a week so maybe just next meds adjusted.
I really just needed to vent today and appreciate the place to do so.
Newbies, I know it is a shock, but hang in there. Fight the good fight and talk to those who know. If you haven't done this you don't know.
Hope all have a happy weekend!

[JerryD]

Since you worked in the medical field, I would hope your perspective and experience would be of some comfort to you. And I know that, as one would imagine, most would expect that this MonSter could be 'tamed'. But, as you know, this is one disease that defies the 'disease-treatment-cure' model.
It sucks. And that is the 'nice' thing I can say about MS. I have been privy to some amazing things done in medicine, so I have full confidence that ' a change is gonna come'. I just don't know if I will live long enough to see it. Good luck Keep posting

[Krysalus]

I can understand that anger!

What has always upset me the most is that the drs can't tell me what's going to happen next. Some of them don't believe MS causes things and others think MS is the reason for everything and tend to dismiss symptoms I have that really scare me at times as if it couldn't possibly be anything else. Makes me want to scream some days.

Luckily, I have a wonderful supportive bf who comes with me to my appts (cause I tend to forget parts) and my new dr is really terrific. He didn't even get mad when I almost fell on him trying to walk straight. NOT gonna happen. I know it. He knew it, but made me try anyway.

MS changed my life but it didn't end it. I still do the things I can. It was hard for me to accept that I can't do everything I want. Still makes me angry after all this time. I think it always will. In the meantime, I go day by day. Good ones are great, bad ones are not so great but every day is an adventure!

[22cyclist]

Pedinurse: Welcome to MSWorld. I was also a Pediatric Nurse in the ICU. I am also disabled. I miss nursing very much. It is hard to accept. I hope that soon you will be more comfortable with it. My husband is a surgeon at the hospital where I worked so I still get to keep up with the gossip through him. That I feel keeps me in the loop with my friends at work, otherwise they may have forgotten me.

Glad you wrote in. We need more nurses to ask and answer questions about MS. Check out our chat rooms too.

Take care
Lisa
Moderation Team

[MrsChip]

How utterly soul-destroying. Being a nurse i'm sure you knew the old MS prognosis theory that the first 5 years are indicative of future prognosis, 10 years more so. I'm guessing that to be whammed at 13 years after passing the 10 year mark must be devastating.
I was Dx in 1994 at 18 and read the same. Every time I meet the goalposts. they change. I got to 15 and then it was 20. I got to 20 and now it's 25, but even then, most RRMS people even after getting to 25 years post Dx get worse.
You sound like a very positive, intelligent and resourceful person so i am certain that you will find your way forward. Have you thought about writing as an outlet for your medical caring experience? I'm sure that others would learn a great deal from you
xxx

[pedinurse]

Thank you everybody for your feedback. Great to hear I am not floating out there alone "not coping". I think we all go through am I the only one angry, tired, just plan done? I asked my neuro, who is wonderful, but couldn't talk him into it. LOL
I decided along time ago the MS would be a part of my life, but not my life. It almost feels like a war and unfortunately today MS has won this battle. Not the war the battle. '
I woke up this morning unable to use my left leg and such severe pain in my spine I almost went to ER, which I detest. I pulled my walker out, another hate in my life. Hopefully can hold out until Monday unless pain progresses or I just can't walk then I guess I have no choice.
I really am not a whiner said the whiner, but right now I am just DONE!!!!
Thank each of you for your love and support. It is nice to know you do really understand.
I may write a book as suggested. My minor was English in college and love dabbling with writing. Maybe it is time.
God Bless each of you!