"I had to learn to reconstruct my life" - Jacqueline Du Pre

Lisa Emrich Living With It Musician, Patient Advocate, and Founder - Carnival of MS Bloggers Lisa Emrich is a professional musician. She happens to live with... Send Message Subscribe: Lisa Emrich

Monday, August 11, 2008
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On Saturday, I had a freelance gig. An easy job with a 3-hour rehearsal and an afternoon performance. Those are the types of playing jobs I really enjoy. Low pressure and good pay. On this particular job, I encountered another horn player whom I had not seen for quite awhil...

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Still the same me
Merely Me
Monday, August 11, 2008 at 03:18 PM

I am pretty much the same me. I wasn't running marathons before MS and hey...I am not running them now. I am homeschooling my son who has autism and I am still doing that. I still read and write, eat brownies, sing in the shower, and laugh at bad jokes. The small little joys are all still there. This isn't to say I haven't had to adapt to my illness. I am not able to bake in the broiling sun, I take more naps, I sit more frequently, I rest when I can. I have lost my speech and my ability to walk at some very inopportune times. Some of this has been very unpleasant and very frightening. But I am still me.

This was a really good question to think about.

re: Still the same me
Lisa Emrich
Monday, August 11, 2008 at 05:08 PM

I agree that deep down we are all the same as we were. Many of the things we did, we continue to do, ie. eat brownies (lots of brownies), sing in the shower, etc.

Sometimes when there are things we can't do, we adapt. We reinvent so to speak. We branch out in other areas (like writing). But deep down we remain the same.

Untitled Comment
Anonymous
Monday, August 11, 2008 at 08:11 PM

Lisa, I look forward to reading your blogs. Thank you for sharing Ms. DuPre's story. I've seen the movie about her life but was not aware of her activities following her diagnosis. I don't have MS, I have systemic lupus. I was diagnosed in 1995, but it was over time that I realized how I'd have to adapt. I used to be a "super mom" but those days are long over. I learned to accept less: clean house less often, rest when I'm tired, and pace myself. The gift that Lupus gave me was having to move from a Type A to Type B personality, reducing my self-imposed stress in my life. I greatly admire those of you who freely share your personal experiences to help others working to make their lives work with a chronic disease. Thanks! An avid reader.

re: Untitled Comment
Lisa Emrich
Tuesday, August 12, 2008 at 11:04 AM

Avid Reader, thanks for reading and commenting.

Lupus and MS have many things in common, besides both being autoimmune diseases. With each, the patient learns that he/she must make changes to how they handle things in life. Whether it's accepting that the house is 'clean enough' or giving ourselves enough time to rest and recuperate.

I know that I do much less than I used to. I used to be a perfectionist when it came to my apartment. Now, I'm lucky if I have a general idea what's hiding underneath the piles.

Life is often about change and adaptation. Those with chronic illness probably just learn that lesson earlier than most.

Thanks for stopping by. Hope to hear from you again.

Lisa

re: What I used to be compared to what I am now:
Jen
Tuesday, August 12, 2008 at 04:54 PM

Hi Lisa---

I used to be an on-the-go ultrasound technologist, on my feet for 8 hours, doing stat calls after work and making terrific money. I used to never hesitate to go anywhere because I had no bladder/bowel issues. I used to plan on taking grad classes to become a librarian.

I am now a little more hesitant to leave the house, speak to friends who don't have MS, or make definite plans with those who don't know about the MS. Still, I am writing a lot more (my number one passion), I feel accomplished when I volunteer and know that I'm helping people, and I look forward to pursuing a master's degree online, whether it's in library science (recently accepted at San Jose State U) or in psychology/social work (for the pursuit of higher knowledge.)

Good topic!

Jen@ MSfriend

PS: Didn't get to the Batman movie yet. Found it more wise to go out and get snookered with friends.

re: re: What I used to be compared to what I am now:
Lisa Emrich
Tuesday, August 12, 2008 at 06:22 PM

Hehe, you said snookered.

Oh, wait. What's that? I've not been snookered in YEARS!!!

I Need Help to Reconstruct My Life
Joan
Friday, February 20, 2009 at 01:46 PM

Hi Lisa,

I thought I was well prepared when I was forced into premature retirement. But after the first year, I'm finding that I'm really not coping well. I'm not sure why - is it the depression from an increase of symptoms? Boredom? Unclear life goals?

Would you consider writing about this topic? Are there any good books for people who can't do what they used to do, but aren't even 50 years old yet? Most retirement books are for people who are still healthy. I need to redefine myself, but have gotten lost.

Thanks! Joan

re: I Need Help to Reconstruct My Life
Lisa Emrich
Friday, February 20, 2009 at 02:07 PM

Hi Joan,

When you mention depression, symptoms, or boredom, I understand!! If I had been employed in such a job from which I could retire early, I might be more frustrated than I am now with ambiguity in life. I've managed to carve out a career of sorts, one from which I will never be offered a retirement.

It is so important to have a purpose in life, isn't it? Amazing how having a career seems to define us and when that is gone, poof, who are we anymore?

I'd love to delve into this topic more deeply and will pitch the idea to my producer. I've not looked into the written material, but my PT has provided me with many sources to peruse. I'll see what I can find which doesn't focus on the "you're retired, older, yet healthy, what do you do now? question."

Thanks so much for your comment. I do hope that these brief writings help others in some way. I know that they help me in coping with this disease and changes in my life.

Lisa