Body Healthier, Spirit Still Dragging?

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Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 3/14/2012 2:02 PM (GMT -6)   
So, my Lupus has gone into "quiet" mode and I am mostly physically ok.

Before Lupus I was totally self-motivated and had been for years..since middle school, actually. Own home, own high-tech business, marathon runner, PhD almost completed, anything I decided I wanted to do just seemed to happen fairly naturally. (IE the elbow grease and hard work came easily and didn't seem like a hardship.)

Now I'm just ill enough (and sustained just enough cognitive dysfunction) to remain on SSD -- I have plenty of projects and tasks to keep me busy. But here's the problem...

I have absolutely NO motivation. I can't seem to care about anything, or at least not to care enough for more than 1 or 2 days of sustained effort.

Has anyone else had this problem? If so, what helps? Or have others managed to get back into life? If so, why do you think you were able to do that?

I really hate this situation and have been unable to move past it for months. I could really use some help! Thanks,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Post Edited (Lynnwood) : 3/14/2012 2:33:20 PM (GMT-6)

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 3/14/2012 5:31 PM (GMT -6)   
Motivation? What's that?
My motivation has moved on out the window!
For a week now I've needed to mail a bill. I keep forgetting about it until it's too late in the day to send it.
My cat's water bowl needs cleaning and refreshing. Their box hasn't been cleaned in three days! Phew!!! My bedsheets hadn't been washed in over two months! There's a piece of paper that has laid on the floor in my bedroom for over a week now.
I was told by my boss my school is closing at the end of the term and their firing 15 teachers in the system based on performance. I'm almost to the point of "I don't care!"

I've been having so much trouble multi-tasking, remembering names, keeping my train of thought. I'm having to write notes to remember things and then forget to look at the notes! I feel so scrambled!

Regular Member

Date Joined Feb 2011
Total Posts : 399
   Posted 3/14/2012 5:42 PM (GMT -6)   
Hi Lynnwood,
      When I was diagnosed with Lupus in 1997 I fought it with all of my might.  I took the downs (and there were many) with a fairly positive attitude....that is until I found my once physically strong body not willing to cooperate anymore.  I had always been an outdoor person-backpacking, hang-gliding, scuba diving, skiing-always moving and always on the go.  One by one I had to let go of those activities and it absolutely broke my heart.  The icing on the cake for me was when I stopped backpacking last year.  Too much degeneration in the knees and back to carry weight, so I had to stop for the sake of my overall health.  That one really got to me.  I still work 4 days a week and even that is difficult at times.  I have found that with each letting go, there is a grieving period and I have learned to embrace it.  Motivating myself to find pleasure and joy in simpler activities has been a struggle, but it has been made easier by surrounding myself with the healing power and energy of women.  I belong to a group of women that meets every month to celebrate the full moon.  We eat communally, provide open space to share our thoughts and participate in simple, spiritual ritual.  That has helped me immensely.  I want to live as long as I can be healthy.  Yes, my strength is gone, but I have found new joy in walks and day hikes when I am able.  I also putter in my garden and do find immense joy in growing a pretty sustainable vegetable garden.  I don't work as long or as hard, but I am finding peace in those quiet pauses.  That is what keeps me going.  And a good cry sometimes when the memory of what I have lost is too strong.  And just sometimes I get a good swift kick from reality that reminds me to be mindful of what I have in the here and now.

Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 3/14/2012 8:22 PM (GMT -6)   
YES! You have described exactly what I have experienced. It stinks, trying to get past the "why bother" feeling. Especially when I remember all the things I used to do.

One thing I did was start a new hobby. I needed something less active and I had always wanted to learn how to sew. So I took a quilting class and found I loved it. I make and donate quilts to charity organizations. This has worked out for me because I am not limited to a deadline and if I need to take a break, I can.

Another thing I did was explain to my husband how I was starting to feel. Talking to him helped a lot. I think this is like a grieving process for the whole family. It helped me to understand that more than just I was suffering from the changes this disease caused.

One thing I must point out, you are an excellent moderator. You answer posts promptly and courteously. I have always admired that.

Things will improve.
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Zantac, Bactrim
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Vicodin, Prednisone.

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 3/14/2012 10:00 PM (GMT -6)   
Thank you, Fran. Sometimes the moderator position feels like I'm just singing into the wind and it's nice to know someone hears me!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 3/14/2012 10:09 PM (GMT -6)   
I don't even have the motivation to find something to eat when I'm just keeps getting worse. Hopefully the rheumy will have some suggestions next week as I'm fresh out of things to try myself.

Oreo, glad you have a community of supportive individuals...I keep trying different things but just haven't been able to connect to anything yet. During the bad lupus years when I was without a brain I lost all my friends and it's a slow, slow thing to rebuild -- esp. when lots of relationships were based on activities I can no longer participate in.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Post Edited (Lynnwood) : 3/14/2012 9:16:44 PM (GMT-6)

Veteran Member

Date Joined Jun 2008
Total Posts : 675
   Posted 3/14/2012 11:23 PM (GMT -6)   
I'm so grateful for these posts.  I have been feeling so "out of it".  Brain is just not firing on all circuits on a very regular basis, and I'm beginning to wonder if it's ever going to snap out of it.  I have lost many friends and connections as well over the past 3+ yrs.  Just couldn't keep up, and most people get tired of waiting.  So hello, lonliness.  It really is hard to reconnect!  Especially knowing that I'm in between realms.  Not as sick and miserable as I was - but realistically, still not able to "keep up". 
Physically, I am functioning at about 35% of what I was formerly able to - which is disheartening, but the worst part is feeling as though I've lost my creative spirit.  I can muster an idea and a little enthusiasm, but the energy required and thus the motivation, wanes before I can actually get started on something.  I don't even want to climb the stairs to my little studio.   I tell myself I'll work on it later, but then it's forgotten.  I've been wondering what in the world to do about it.  And whether it is connected to the whole UCTD/lupus thing. 
I can accept that certain limitations for activity, sun exposure, etc. will remain and are part of the new normal.  But this mental passivity - is something else.  I don't really feel depressed - just passive - willing to let things slide.  I know I should move and just put one foot in front of the other, but....meh....maybe later.  That others are dealing with this is both reassuring and alarming. 
Lynnwood - you're a wonderful moderator, I have learned to pay attention to your posts!  Please let us know what your rheumy says.
Fran - You're right - how this effects the family is pretty big, too.  I can't keep up with them, either, and it has an impact that requires adjustments by everyone.
Oreo - Thanks for the helpful points.  It is important to count the remaining blessings, which are numerous and also to realize we have to venture out of the shell a little to get results.
Joy - Feeling scrambled is a great description!  Like the "reception" is jumbled and blocked.  I hope things start looking up for you.
I hope Spring helps us all.

Regular Member

Date Joined Feb 2007
Total Posts : 154
   Posted 3/15/2012 1:01 PM (GMT -6)   
Wow...reading these posts are so comforting. Everyone hit the nail on the head with how I've been feeling for the past few years. I actually really did not know that this was related to Lupus before reading this thread...the lack of motivation, passivity, loss of creativity...I can relate to all of it and I'm so glad that it's not just me!! Like Lucy said, I don't feel depressed, just passive.

My blood tests are pretty exceptional and mostly within normal range (fingers crossed), I am in "clinical remission" with extremely low disease activity, but why do I still feel like just being a lump on the couch all the time?? I have been feeling like I'm a lesser person because I am not as active as everyone else in my life. I just turned 25, and most of my friends can party all night, go camping, skiing, jetset across the country for a weekend...I've actually lost touch with most of them because I dont really go out much anymore unless its just dinner or something. Actually, my mom can party harder than me. Without a doubt.

My brother is SO motivated and determined, he is starting his own business, and I'm sitting here wondering "why can't I be like that?"...he reads everything he can get his hands on, sometimes reading a book multiple times and researching his hobbies and interests and soaking everything up like a sponge. I can't even bring myself to finish reading The Girl with the the Dragon Tattoo or respond to that 2-week old email!! I don't even have any hobbies or interests anymore and I used to love making art.

Also, it doesn't help that sometimes this girl at work (unintentionally) reminds me of everything I CANT do...I am on blood thinners for antiphospholipid antibody syndrome so most of the activities I used to like doing like skiing, volleyball, ice skating...not possible anymore. This coworker would often say (in front of others) "hey we should all go up to the mountains and ski! Oh wait, thats right, you cant. Well maybe you can just hang out at the lodge while we ski." Thanks. I wont even use the expletives I would like to use to describe how I feel about her every time she does this. She also brags about her latest achievements or activities she does which is annoying but I think that is just her personality (narcissistic) so I have learned to let things go because I dont think she is a bad person.

Maybe this is a lesson for me not to compare myself to others, especially others who dont have Lupus! It's just really really nice to know that my feelings are somewhat "normal" at least in one realm. Thank you all for sharing, it has really helped me to better understand whats going on in my head...and thanks for letting me vent :)

SLE, Lupus Nephritis and Antiphospholipid Antibodies since 2006.
History of 2 deep vein thromboses, end-stage renal failure, pulmonary edema, shingles, costochondritis
Meds: prednisone, plaquenil, cellcept, warfarin, lisinopril, baby aspirin, xanax, oxycodone
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