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Mental Struggle

Oct 05, 2011 - 24 comments


Day 35 -- Seems to be tougher, mentally, to take all the pills now that VIC has been added.  Up until now, I have been sticking to my schedule.  But have also gained weight from overeating, so maybe that's why it's a bit more of a struggle to take pills on time, because I know -- even if it's small -- I have to eat again.  Thankfully, I am on VIC, but still have to eat to keep that and the RIBA from making me too nauseous.  Gotta take the time to "plan" out my meals better.

I don't feel depressed.  I feel, at times, unmotivated.  I talk to myself every morning to force myself out of bed, then to eat breakfast, then to go to work.  And when I'm at work, I have to talk myself into working, instead of being online in this forum (it's so addicting!).  I also find that I am more....contemplative?  I will sit and think, and think.  Then have to "snap" out of it and get back to doing what I am supposed to be doing.  Kind of feel like Robert DeNiro in "Awakenings", in a way.

Just before treatment, I was on Cymbalta, but changed after a month to Sertraline (Zoloft).  I think I have been handling it well.  No nasty sides, other than, now that I think of does make you gain weight.  But I was not happy with my weight before all of this.  Depending on the day, my emotions have been in check.  When they're not, it's been sadness (normal for me), and impatience, not rage.

(Documenting this for my doc)

October 11, 2011
Lack of concentration.  Insomnia making it harder, mentally, to talk myself into going to work the next morning.  Other emotions still seem to be in check, no temper flare ups.  More thankful, than anything, that my sides have been tolerable.  People at work starting to notice something is wrong.  I am rocking, either side to side or back and forth, to comfort myself when I'm feeling sick.  This is a hard secret to keep, when I'm not feeling good and want to vent to the world that -- I am not feeling well.......because I am fighting to rid myself of the evil Hep C.  Having to make more decisions on when to stay at work and when to go home, since I do not have much time left for the year, so that has been stressful.  My boss has been really understanding if I need to leave suddenly.  But I am still trying to not take off unless I can't focus enough to do my job.  Some days, all I want to do is curl up in a ball and lie down, especially when I am nauseous.  But I know that over the past 6 weeks, every day is different.  So I am trying really hard to remember to take it one day at a time.  Trying hard to remember to take all the pills.  Have alarms on my phone and calendar alerts on my work computer, but it is still a challenge. Without this forum, I would not have anyone to tell, who understands quite on the same level.

(I will continue adding, as necessary)

October 13, 2011
Yesterday was ROUGH, because I had Nausea and weakness all day long.  Felt wiped out this morning, and called in sick.  For some reason, I felt a 'lift' in the mental pressure, and fought through, determined not to be defeated!  I got more water in me before leaving home (which I usually don't do because I ride public transit).  I had ice cream, then RIBA.  Half an hour later I had Kebbler's salty (fake) Cheese and crackers.  All of that got me feeling better, so I felt very motivated to not lose anymore hours today.  I was an hour and a half late but made it to work and stuck it out all day.  Keep reminding myself that every day of this is different.  If I feel like I can, I will try.  If I feel like I can't, I will try and see how far I get, but stay home when needed.  It just is what it is at this point.

October 19, 2011
Stayed home.  Just felt, mentally, that I could not get enough motivation to go to work.  Tried and tried to keep moving, to talk myself into going.  Then called my job to let my boss know I needed to lay down but hoped to be in later.  Just could not muster up the mental energy, which meant physically, I was moving a lot slower.  Biggest thing was the change in my "interior conversation."  There was no focus, no thinking forward.  Then this morning, Oct. 20th, my interior conversation was back to normal (i.e.; thinking about what I needed to get done at work today; wondering what work people have snuck into my office that might interfere with an ongoing project; what should I have for breakfast, etc.), so I know for sure yesterday was a mental struggle.  Very tired and a bit weak.  Praying it is not anemia but keeping an eye on my symptoms just the same.  Also considering asking for an increase in the AD dose, if that would help.  But not crazy about that idea and don't want to be any sleepier.

October 26, 2011
Eureka!!! (Sorry, not you Eureka)  I am not imagining things, my labs confirmed that I am Anemic.  And while I am not happy about it, it does explain the no focus and no energy issues.  Can't wait to see how I recover and how I will feel mentally, once things are under control.  Gotta get through this.

October 28, 2011
Feeling MUCH better this morning.  Combination of factors: RIBA dose reduction; eating meat and spinach for past 2 days; I generally feel better on Fridays; went to Chiropractor on Wednesday for Vertigo.  No brain fog!  Brain fog for me feels know when you're ready to sleep but can't get your mind to wind down?  Well this is the exact opposite.  It's like I couldn't keep a thought inside my head!  Forgetfulness on simple things (i.e.; did I put on deodorant?; and I just had), confusion and lack of concentration.  None of that today.  Bless God!!  Very happy right now to be feeling better, as far as all the factors connected to Anemia.

November 26, 2011
Starting my 13th week of tx.  Shot went off without a hitch.  Still struggling with no motivation.  Have plenty I need to do but can't seem to talk myself into getting up and out the door to do it.  I have become somewhat of a hermit, I fear.  I can sleep half the day away, which means, I am not getting nearly enough movement and my muscles are atrophying more and more.  I'm tired but not in the same way prior to the transfusion (Nov. 2nd).  I'm still wondering about the AD's.  It's a low dose, so part of me wonders if it should be increased......but another part of me wonders if that will only make it worse, and if I should stop taking them altogether (under doc's supervision).  I hate to feel all "woe is me", because I am otherwise doing pretty well and tolerating the sides.  Just stressed and tired, unmotivated and mentally tired.  I pray I getta kick-start soon.  I have to keep going.  Oh, and I have trouble now with concentrating when reading long articles or emails.  I have to stop and try to get through them later.  But I can watch t.v. for hours, which makes me feel plain lazy.  Is this me?  Was I just as bad before tx?  I really don't think so but it is getting harder to remember.  I have needed to do laundry for 2 weeks, and because it is the one chore I hate, I just cannot seem to force myself to do it right now.  But I know I will have to do something soon, or be forced to go to work next week in a toga :0(

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Avatar universal
by screaming48, Oct 06, 2011
thank you for sharing. I also have a hard time with the eating schedule and I fear that I am not eating as well as I should simply because the fat makes me sick and I don't have room for any other food in my tummy as I am not used to eating so often and the nausea just about does me in. I don't feel depressed either but like you the motivation is just not there. When I wake up in the mornings I feel pretty good, that changes as soon as I have been up for a while and then I crash and burn. I don't know how you are working I admire you for that just be very careful. I can barely walk across the room. I keep telling myself to snap out of it as well but nothing is snapping it just lays there lol.

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by beeblessed, Oct 06, 2011
Hey Screaming!  Nothing snapping, LOL :)  I figure I'm gonna do as much as I can, when I can.  I am the only one taking care of me (financially), so I gotta keep working during this.  It is still early (5 weeks) and my sides have been tolerable generally.  Thanks for reading and for sharing that you feel unmotivated too.  I think tx should come with it's own diet/meal guide, so we don't have to figure it out on our own.......and end up overeating and/or feeling full all the time.  Sorry about the nausea and the anemia!  I'm assuming you let your doc know so you can feel better real soon.

Avatar universal
by aj7538, Oct 06, 2011
Be.know how.u feel, not motivated, but do what I have to. I support myself so not wirking isnot an option. We have to push ourselves, no choice here. When I am at wiork I count the hrs down till it is time to go home. All I want to do is.lay down. No energy. But still very grateful that I can function. Always said this virus affects not just our bodies, but mentally and emotionally as well. All the changes and adjustments. Just getting up first thing in the am and tsking pills. First thing in the morning last thing at.nite. I pray very hard for all of us. Thank you for sharing

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by beeblessed, Oct 06, 2011
Thanks a bunch AJ.  Plus, it's that time of year where vacation/sick time are just about used up.  Can't tell you how many doctor's appointments I had in this year alone.  So I am praying to make it through to the end of the year before needing anymore time off.

Avatar universal
by Vannh9, Oct 07, 2011
Bee- thanks for your updates. As one that is getting ready to start treatment and knowing that I also have to work, it is good to know that you are making it. I know...I motivation and pill overload,  but in a crazy way I wonder if not having another options make a difference? There is no one else lining up to pay my bills....cook my meals....take me to the doctor...etc. I have thought of all possible scenarios and believe that I endure (I hope I am not kidding myself). Please know that I will be praying for the extra motivation and focus for you today.


Avatar universal
by Gerbils, Oct 08, 2011
I, too, stuggle with motivation. Sometimes I feel like I am detached from my own life somehow. Like I am watching it happen. I do what I need to do and I want to be more interested and involved but it isn't there. Is it the virus or the meds? I don't know. I do know that the meds are serious stuff. I hope we all return to normal "after". Best of luck to you all!

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by beeblessed, Oct 13, 2011
Thanks Gerbils!  Sorry this is so late.  I know what you mean, and it IS the meds and the stress.

Yesterday was ROUGH, because I had Nausea and weakness all day long.  Felt wiped out this morning, and called in sick.  For some reason, I felt a 'lift' in the mental pressure, and fought through, determined not to be defeated!  I got more water in me before leaving home (which I usually don't do because I ride public transit).  I had ice cream, then RIBA.  Half an hour later I had Kebbler's salty (fake) Cheese and crackers (because I was scared to eat anything, for fear it would make me nauseous).  All of that got me feeling better, so I felt very motivated to not lose anymore hours today.  I was an hour and a half late but made it to work and stuck it out all day.  Keep reminding myself that every day of this is different.  If I feel like I can, I will try.  If I feel like I can't, I will try and see how far I get, but stay home when needed.  It just is what it is at this point.

1711722 tn?1356491154
by beeblessed, Nov 26, 2011
Updated Nov. 26,2011.  Trying to determine, again, why I feel sooooo unmotivated.

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by ceanothus, Nov 26, 2011
Hi Beeblessed,
I think "unmotivated" can be another manifestation of depression. It certainly is for me. Perhaps you should talk to your doc about whether you might need to up the dosage of Sertraline. The last time I did treatment I was taking 50mg of Sertraline daily before treatment, and by midway through I'd had to increase it all the way up to 200mg. Interferon is a powerful depressant for me. This time my doctors made me change from Sertraline to Cymbalta before starting treatment, due to possible interactions between Sertraline and Incivek. So far it is working okay, but I'm only 5 weeks into Tx so far.

Avatar universal
by willbb, Nov 26, 2011
Hey. feel unmotivated ..because you are in the middle of a very draining drug good to yourself,don"t try to figure it out and just realize it will be over in the near future and you will feel much better..
Best to you..

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by Dee1956, Nov 26, 2011
Hi Will!
Bee, as far as I can tell this is all normal, not being motivated.  Odd thing for me, today was my 12rh week, woke feeling exhausted.  Stayed in bed all day.  Trying to force liquids in case   I did not get enough water over Thanksgiving plus eathing normally first time in 11 weeks (LOL)
I know this is a very hard time, please do not feel alone, most people feel the same way.  I pray I will feel better tomorrow
Best Wishes for you
and all

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by eureka254, Nov 26, 2011
"Eureka!!! (Sorry, not you Eureka)... I am not imagining things,"
That's what what me and I tell myself all the time. ;)

Remind yourself it's temporary... this is treatment induced... your normal self will return after therapy.  Keep the faith.

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by Livinontheedge, Nov 26, 2011
Hi Bee, I am thinking the same thing.   I have absolutely 0  motivation for doing anything.  And here's the kicker.   I will sit and do nothing, mainly because I have no energy or get winded, but then I will sit and fret about all the things I need to be doing and then start stressing out.  No wonder my BP is high !     I know my AD's are getting compromised with the INC right now and I am struggling to make it through the last week of INC.   (thats right just one more week )   Hopefully , when that happens my AD will kick in again.  (its Lexa pro, and is on the compromising list on inc)  
I've always been a go getter and stay busy all the time, so this has personally done a number on my multi tasking skills ... LOL !    Oh well, better to Slay this monster and get it over with and then have a Happy Healthy Life, thats what I am banking on anyway :)    Hugs to all.  

1794638 tn?1345158661
by Livinontheedge, Nov 26, 2011
Bee,  One more thing,   Everything you mentioned on your last journal entry, I am relate to ..... EVERYTHING !    Except, I just dont know how in the world you are working.   God Bless You Girl , May He give you a Multitude of strength & Stamina to get through the rest of this.    You can do it !   We love you,  I love you,  Vent if you need to     Hugssssxoxoxoxoox

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by beeblessed, Nov 26, 2011
Ceanothus, Will, Dee, Eureka, Living........

Thank you all for your understanding and words of wisdom!!  I will be glad when this feeling passes.  No decision on the meds just yet, but I do have a doctor's appointment on Monday.  I generally "feel" okay I guess but felt I should still document this, in case it might help someone else in the future.  It's taken me longer and longer to put together comments and get through reading the responses.  Just depends on the day.  Hope to wake up tomorrow and feel "brighter/lighter."

Thank you for caring and commenting.  You are all a blessing to me.

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by starshine1ca, Nov 27, 2011
Dear beeblessed,

I completely agree with Will and the others about it being caused by this very draining drug therapy.  I think you should focus on all the good that you have done, for  example working all through this treatment.  That alone is such a big success and motivation and I truly look up to you for your amazing strength through this....You have accomplished so much and as you say, tolerating the side effects sooo great!  You are definately one of my heros!  Take those arms and stretch them long to reach around and pat yourself on the back for the miracles you are performing each and every day.

You are truly an amazing person and the heck with the laundry...start a new trend at work...hehehe  Bring on the togas! :-))

Biggg hugs, Anita

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by libzo2, Nov 27, 2011
What a wonderful bunch of coconuts we have here!!!  I had no idea of this other world and just happened upon it because of the buzz word "motivation" of lack of it.  That is me all over and I think about it a lot.  I had to laugh when I found we are all sitting, rocking, waiting for the buss that never arrives.  I love you good people.  You are my flock.  never really had one before - always been a loner.  I really appreciate how your struggles open my eyes and heart to the truth of our brief sojourn on this planet.  Thanx for sharing your precious thoughts (and not so precious).  I am very proud of you all.

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by beeblessed, Nov 27, 2011
Starshine, Libzo........Thank you :)

I did finally do laundry, as I had a Christian play to attend, and I felt a toga might cause too much attention.  It took me a really long time to get up and out, but I am thankful I did.  It was good to be around people, at least in that setting.  Going to work tomorrow will be a different challenge.  But it will be okay because I know I will only be working half day and then going to see my Hepatologist for the monthly follow up.  I am amazed that so many of you in this forum understand even this vague, can't quite put my finger on it 'off' feeling that plagues me.  I read through my earlier entries and did notice that it led up to Anemia the last time.  Geez, I certainly pray that is not the case again (even though I know of the possibility).  I don't have that weakness, that shortness of breath, so I think I'm good.  Will know more tomorrow with my 12 week results.  And I think I get another psych eval soon too (just a gage for triple therapy).  We had to do one in the training class, to get a baseline just prior to the first injection.

Blessings to you all for your comments and sensitivity.  Thanks for not telling me to just 'suck it up'.  Yeah, one person did months back and that still rubs me the wrong way.  But I'm gonna think they were having RIBA rage that day.  Okay, it's a beautiful sunny day and I am going to try my best now to go out for a walk.  Enjoy your blessed!!

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by glair, Nov 27, 2011
I will be starting treatment in January. I was a relapser in 2003 and since then have developed cirrhosis and am stage 4 with a MELD score of 17. I was put on the transplant list last week but that may take a while to get a new liver. I too suffer from the lack of motivation and extreme fatigue. I worked through my first treatment but had to retire back in April due to the fatigue and brain fog from ammonia buildup. I spend a good bit of my time just sitting and thinking about nothing. When I do get the energy to do something I want to do 10 things at once and find myself bouncing around from one thing to another afraid that if I don't do it right now that I will forget to do it. I'm anxious to see how I do adding the treatment to the way I already feel. The side effects last time were rough - I think I had them all except, thank heavens, rage.

Good luck and God bless all of you taking the treatment - I hope that it will work for you and keep you from going into cirrhosis. Thanks for sharing - it certainly helps to know that you are not alone in dealing with these issues.

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by beeblessed, Nov 27, 2011
Glair -- Thank you for your comment on my journal!  It brought me to tears because I feel you understand ("just sitting around thinking about nothing" is dead on) first hand.  I so appreciate you sharing your story. The scripture you use in your profile is one that a friend of mine uses as  her signature.  May God continue to bless you and keep you well enough for the transplant and after that.  My best to you in your next go 'round with tx.  I hope you have found things in the forum to make it easier for you.  I have learned beyond and above what I ever imagined by joining a forum of non-doctors.

I am grateful for all the comments, as it does help me keep things in perspective, but at the same time, let's me know when something may need more attention.  I am always letting my doc/nursing team know what's going on, simply because........I feel like a guinea pig (though not in a bad way).  African American female, treating with Victrelis shortly after FDA approval.

Thanks everyone for your help, compassion and kind words.  I wish you all the best, not just in tx, but in life.
Bug HUGS to all of you,

317787 tn?1473362051
by Dee1956, Dec 02, 2011
Bee still thinking of you still rooting for you, I completely understand how you are feeling, though I was on Incivek till this past Saturday thus completing the 12 weeks of Incivek..  I am really having a hard time, yes I am anemic but I guess my doc is not giving me anything as he feels as the Incivek leaves my body I will get a little better with just the Peg and Riba, ha ha just
I worked through last tx and asked why this time I can't do anything and they said the Incivek is a very difficult tx and they have been bombarded by calls from patients going through the same thing that I am.  Of course we are all in different stages.  I wish you the best as I am sure everyone does.  Thanks you for sharing, you are helping me in more ways than one just like some others on here who have shared their journey

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by freakedbeyondbelief, Dec 02, 2011
im new here and wanted to thank you for posting this, I may be starting treatments in january and lol half the side effects I already have from being in menapause so I will probably seem like a crazy person on the meds. I already have brain fog, and sit and think for hours when im supposed to be doing something else, cant remember stuff... heck I forgot what a sink was called, my daughter is worried about me but my dr said its the menapause. I am really worried about the side effect of rage... but after reading the comments it doesnt seem to be a common one? I hope not cause that scares me. any way good luck to all of you. praying everyone gets thru this and has awesome results.

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by beeblessed, Dec 02, 2011
Thanks Dee! -- So glad you are done with INC, and it has surely done its job for you.  I don't know that I would have been strong enough to deal with the mental and physical sides of that drug.  Thanks so much for your kind words :)

Thanks Freaked -- Welcome!  I was really worried about rage too.  There doesn't really seem to be a rhyme or reason.  A lot of folks have it, a lot of folks don't.  Dealing with Menopause and any other pre-existing ailments is a challenge during this, Not impossible, but definitely a challenge.  For me, especially the mental aspect.  The frequent talking to oneself, reminding that it is the meds......not me/you.  All the best to you!  Be sure to post any questions you might have in the forum.  Great people here.

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by hondapatches, Dec 02, 2011
Every time before I started treatment my Dr. would always put me on an antidepressant. I am taking effexor now, I think when it gets in your system your mental state begins to change. I have had no problems with mental state, thank God I have had every other side effect you could imagine.  God Bless

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