One month post-tx and still out of sorts

[outofsorts]

I completed 48 weeks of combination therapy on January 22, 2010.  I cleared the virus at about week 5 and remained clear throughout the rest of treatment.  

When I was 16, I got into a very severe accident and spent a month in a trauma unit and two months in other parts of the hospital.  I ended up addicted to morphine.  When I got out of the hospital, I ended up in a pretty traumatic relationship which eventually led me to heroin.  I spent my twenties in and out of rehabs.  I have never known pain and suffering like that which I experienced during those 10 years.  Due to some more really poor desicion making I ended up with Hepatitis C.

Treatment was difficult, but kind of tolerable.  I ended up having to move back in with my parents.  I was not able to hold down a job, spent a lot of time vomitting, and completely withdrew from society.  

I am one month post-tx and though I feel vaguely better (at least I think I feel a tiny bit better) I do not feel capable of reclaiming a "normal" life (not that I even have a clue what that is anymore).  I am very worried.  My life is pretty much non-existent.  I am basically starting from scratch.  I did some searching on this forum and the interweb and found mixed reports regarding post-tx experiences.  

I am still experiencing extreme fatigue, insomnia followed by lengthy stretches of sleep, an inability to focus, brain-fog, malaise, occasional anxiety attacks, and hot flashes as well as a few others I probably do not have the faculty to remember at the moment.  My family wants me to get back out in the world and make a life for myself and I want nothing more than to do so.  I do not feel drawn back towards the drugs and actually, for the first time since I was addicted in the hospital, feel extremely repulsed by the idea of going down that road again.  

I do not have an aversion to using comfort drugs temporarily (as prescribed by my doctor) and I have never had a problem with non-opiate drug addiction (I am not your typical drug abuser), but my doc is not very forthcoming with them.  I suppose I cannot blame her.

If anyone could tell me what I might expect over the next few months, I would greatly appreciate it.  Also, if someone could describe to me what they feel like when they feel "normal", I would love them forever.  Do you just feel "neutral"?  You do not think about how you feel and are able to perform routine functions easily?  I feel very confused and, frankly, terrified.  Thank you for any and all help.

TL;DR
I am one month post-tx and need advice regarding what to expect and what "normal" feels like as I have completely forgotten.

[Rockerforlife]

Just want to comment on you saying recreational drugs dont agree with you after TX, i feel the same way about alcOhol,i haD a 3 drinks just today and i did not like the feeling it gave me,i felt really sleepy and tired,looks like i wonT be drinkn like i used too before TX,maybe not at all.A blessing in disguise...ALCOHOL IS GARBAGE NOW

[outofsorts]

Thanks for the kind and wise words epiphiny.  I will take them to heart.

[epiphiny]

Just an observation - for someone who feels they have intense brain fog and is "out of sorts" you have an admirable vocabulary and are wonderfully articulate!  Sometimes we feel worse than we appear to the rest of the world!

It is only a month post tx and things will definitely become better.  I was a lot like you in that I thought as soon as I stopped taking the dreaded meds I would come back to "normal" straight away and when that didn't happen I became very despondant.  

I am now 10 months post eot and find myself in a better position than I was prior to tx.  I slowly reintegrated in to my life and have just finished a project that I was completely unable to do 9 months ago. In fact, I sailed through it better than I ever have in the past!

What I found most interesting about this experience was it highlighted my "old" way of thinking that was based on being a sick person.  I would find myself thinking oh no I can't do that because I am sick. Then I would realize I wasn't sick anymore and that I could do it (whatever it was).  It was kind of like pushing through a mental barrier.

Having said that, you do need to give your body time for your bloods to come back up. I experienced a rise then a dip in my Hgb - I definitely tried to do too much too fast!

Try not to buy into other people's expectations of yourself - those who have not treated do not understand what your body has been through.  And try to keep your expectations of yourself reasonable!  I found it helpful to acknowledge the positive progress I had made on a daily basis rather than focus on what I still couldn't do...

All the best, you will make it, and life has the possibility of being better than you have ever known it!

Epi :)

[outofsorts]

Thank you for your replies.  It is comforting to know that there are others out there who have tread this ground before.  Even though I understand the medical description of what is going on in my body, I do not understand the subjective experience associated with it and I imagine that most doctors really do not either (unless they have been on tx).

I started working out and keeping my diet in check during the last few months of treatment and that has helped to a degree.  Sometimes I do not want to do it, but I get through it by staying positive about it.  Afterwards, I feel good for a number of reasons.  The sense of accomplishment is my favorite.

I realize that I have not been off treatment for very long; I guess I just get worried about the rebound.  I really do not want to live the rest of my life like this.

Thanks trish for the suggestions regarding brain fog.  I will look into picking up a new skill or ability that requires cognitive commitment.  Also, Diane, I appreciate your suggestion about positive thinking; I have been trying to avoid negative thought patterns and stay positive.  I have not mastered it yet, but it is a process not an event.  

I had been on remeron (mirtazipine) for depression/anxiety and nausea as the phenothiazine-class anti-emetics did not work well for me.  Subjectively, I was ambivalent about the AD benefit(s) of mirtazipine, but it was amazing for nausea.  It did not immediately ameliorate my nausea, but it palliated it within a few days and I was able to force myself to eat again despite having no appetite .. heh.

One thing is definite, I still have a lot of personal work to do.  I need to stick with it; reintegrate into the world.  Although it seems overwhelming at times, every prodigious journey has to start somewhere.  

At the very least, I think tx was a transforming, grounding experience and it will have positive repercussions for me even if I do not stay virus free.  Thanks again for your input.

[Diane12855]

Your life has been rough for such a long time so I understand why you don't know what "normal" is like. Someone above mentioned anti-depressants and from what you said, if you aren't on them you should look into that. The neurotransmitters in your brain get thrown way out of whack every time you put yourself through a major change in you life... especially chemically. Also your thought life has a HUGE effect on your future, whether it be great or horrible. I suggest you watch the movie "The Secret" a few times. It has helped me get out of the "stinking thinking" syndrome many times in my life. You can see a preview of it at www.thesecret.tv and I found it at Target for much cheaper than it is on the web site.

Here's hoping for brighter days for you!

[a823]

Acupuncture helped me. Good luck.

[Trish77]

First off .. one month is not actually that long.  There are countless of us here who expected to recover relatively quick and for some it happens that way and for a number of others it takes months and many months in some cases.  I think it took me about 4 months before I started feeling like I was seeing glimmers of normal again and then it came roaring back in and I couldn't get enough of life and grabbed it by the handfuls.  One month is too soon to expect normal, I would say.  Great if it happens but not too surprised if it doesn't. It takes 6 months for the ribavirin to completely vacate the body, for example.  7 days for the interferon.  I didn't bother getting my eyes re-tested until six months past treatment so that everything would be all settled out and any prescription would be more likely to be accurate.  That's just a handful of things that indicate this will take a little longer to get to your new "normal" ... because it WILL be a new normal.   You're in uncharted territory, considering your previous years of addiction and you have a new lease on life, so your normal will be what you choose it to be in many ways.    

With regards to the brain fog .... I went to a show a few weekends back where they have booths and special presenters, etc.  One of the special presenters was a memory guru and I won't mention his name.  He claims that his principles and techniques are all based on the science of how the brain works and that there is a rhyme or reason to his methodology.  I had a little chat with him about the "science" of brain fog and he was familiar with brain fog.  I asked him if the brain bounces back after a treatment for an illness and he said not on it's own.  He suggested learning a language or a musical instrument to get the brain's cognitive abilities to "wake up".   This guy suggested it's entirely possible to get the brain to respond again but you have to "work" it.  Now...perhaps it was to sell his program.  He did, however, suggest learning a language or an instrument.  I plan to follow through on that.  This guy says he actually has a book coming out on this topic and I'll be watching for it.  Have some skepticism as yet...but intrigued nonetheless by the thought that someone has put some study into the science of brain fog and I hope it's valid and helps some people.

There is a saying that goes "The journey of a thousand miles begins with a single step" - Confucius apparently.

My suggestion to you is to first be patient with the process.  Next suggestion is to force the process a bit.  Consider getting a part-time job, even 10 hours a week.  Add some activities to your life that engage you with people and stimulate you socially, physically, mentally and spiritually - on that last one, I don't mean a faith-based activity, I just mean something that is good for your soul, something that has some internal meaning for you and adds value to your life.  I try to have a balance in my life and make sure I'm doing something that touches all those areas.  You might have to "fake it til you make it" for awhile ... do things that are good for you despite a lack of mental or physical enthusiasm for them.  I tend to always be glad I did something despite my lack of enthusiasm prior to actually doing it. Set some goals, a plan to achieve the goals and then execute it and if you need to adjust it here and there, simply do that according to your needs as you go along.  

Good luck with this .... hang in there.

Trish

[FlGuy]

It sounds like you have had tough times, even before treatment.  It takes a while for the shade of the meds and the treatment to disipate and time for your body to regain some level of normal acitivity when you start your receovery.  You just can't sit around and wait.  Go out and meet improvement with diet, exercise and  purposeful endeavors.
The meds are designed to attack and kill the virus and hopefully you have gotten them all.  However, treatament is not a magic bullet for all that ails you.  There is no reason to expect that the hcv treament will cure the accumulation of other physical and emotional problems that you have aquired along the way.

[copyman]

i agree with what the others said taking time, it can take up to a year to feel normal after tx. Not sure if you wrote that you are on anti-depressants but I think they may help you. if you are on them perhaps try a different one to see if it works better. best of luck

[newleaf09]

My blood was slow to recover, too.  My sleep was messed us post-TX and I needed sleep aids.  Every month I though this is the month I;ll feel normal, but it took me a full 6 mos. to feel back to normal and strong again.

[merryBe]

it should get better with time, most do. I'm still having sleep issues big time, but most were from being put on drugs during the chemo..and now getting off them having rebound insomnia and more. Bad drugs...very bad.

the energy does come back, my blood took 6 months to get back up to 14 HGB but that alone gives one more energy...just give it time, it takes about 6 months for the riba to leave your system completely and that's why the blood doesn't bounce right back...because the riba is still killing cells.

I think the bigger hurdle is to keep pressing on. After being down so long, it's not as easy to motivate myself, and it requires some real extra effort you know?
Don't give up though, life will get better, but we also have to guard where we go mentally and emotionally or these can be our undoings.