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250084 tn?1303311035

Womens input, help

Hi all. After 7 days with no DSL in Ocala, Fl. and now it's ship horse's week, I've really missed this site! Have NO time and want to respond to so many. Hope all are well, especially merlino and Child24angel.
I need some women's input here (and the mens views wouldn't hurt, thank you).
I am 3rd shot in, 3rd week. So far, just can't whine much at all. Quite fatigued, but was from hep also, a few headaches from h*ll, few night sweats and, already, a bit brain foggy. Feel like I am ALWAYS stoned, but not the good stoned :) Just NEVER feel normal, good. (as you all know and as even before tx).
While I have EXCEPTIONAL support from my 3 sons, sister, friends, man of 8 years........ I can't seem to make him understand the HARM of me keeping up my normal pace (we are VERY active, social, business busy people) and while he always says "if your not up to it, don't do it"... He KNOWS if I KNOW it needs done, I GOTTA get it done!  Tuesday was a 12 hour, non stop day, no nap, no break. Wed., with the 'social' dinner out, a 14 hour day. Sat. (shipping horse's on plane) will be a 20-24 hr. non-stop day! I am also getting very emotional, teary a lot, not Riba ragey (but also 49 probably starting menopause).  I need to make him understand that even before this (stage 3 fibrosis) the fatigue was kicking my butt, and now it's worse and that I HAVE to take breaks, naps or it's going to hurt me, my tx, everything! (in a trial, NO 'rescue' drugs). If all goes to the curb, anemia, etc. I am taken off the drugs! He tries to understand and is a very good man, but as we know, if your not going thru it, you just DON'T really get it. ALSO...... sex..... love sex, need sex......just don't seem to want much right now and mainly from being so tired and every muscle in my body aching (as before tx)! And yep, getting that irritating skin , dry feeling there :{ Being a man..... ( no offense guys, love ya' :} he takes it as "I don't WANT him"....and that is NOT it! I wouldn't do Richard Gere (my man :} if he walked in some days, and that is BAD! A few mths. ago you ladies, men, posted to a similar post and it was great replies, so can you do it again? Please, for me :}

P.S. I 'only' have 24 weeks to do, type 2b. So not nearly as much a long haul as some of you (God Bless ya')

P.S.S. I keep getting 'friends invitation' from some on here, I always 'accept' and than it goes nowhere? What does that mean?

           Thanks so much and sorry I haven't been here much to boost some of you up, onward.
Your  ALL so great.
                                                                Love ya' all, Lauri
29 Responses
Avatar universal
Avatar universal
Everything that you are experiencing is completely normal...   Sorry.    But, this is usually how it is on treatment, at least part of the time.  You will have some good days, don't give up hope in that.  Keep up with your CBC because if that starts to get into the anemic range-it can be the explanation for some of it.  Although, aren't you on a trial?  Some trials don't allow rescue drugs-does the Albuferon trial allow them?  If they do and you have the anemia-there's always the Procrit option.   I never had that many social outings even off of treatment-but those that I did have-had to be modified.  I worked at first-the first 3 times I treated, but after that-I couldn't handle it any more.  Many people do find a way to make it through, like NYGirl!  I'm so proud of her working her way through 72 weeks.  I wish I could offer some great piece of wisdom---I am here if you need an ear to talk to-I believe I gave you my phone number.   I would recommend keeping up your water drinking-that's very important.  If possible scale back on your work hours and get some help during this time and you need to schedule time for rest...I'm not kidding on that!  Your body is fighting a battle right now and it is the drugs against the Hep C and it does wipe you out energy wise-during the fight.  One way to cope with that is to make sure that you get adequate rest.  As far as the sex thing-it's always, always, always affected me there.  Had many conflicts w/hubby over that one.  I'm like, 'not into it...just do what you want and leave me alone so that I can go back to resting....'    Isn't that just so nice of me???  Not!   But, I feel like I couldn't change what I had no ability to change.  When your body is not cooperating on that level-it's not like you can push a button(belly-button) and make it all of a sudden fireworks....if you get my drift.  Everything seems to come right back to normal when the treatment stops and after all these treatments-he's finally getting that down now and has adjusted to those times of treatment.  Trust me, he makes up for lost time on that arena, and your husband will have to be patient with you while your going through this period of time.  After all, those vows say, "for better or worse - in sickness and in health'   amd not 'I'll stick around until it's no longer fun for me and then, I'm outta here'.   There's always cuddling w/hubby.  You're a special person and you need to be treated specially right now.  Take care,  Susan
298631 tn?1210629030
Totally going through the same things 8 mos into tx. My work is sales with lots of travel which is really rough - they are understanding but I am also driven b/c if I don't see clients, my future sales and income will suffer.

I have really learned recently that even if I pace during travel (rest, naps, decline some social functions in evenings), it still takes a BIG toll. Everything is different - sleep, comfort, food, ability to drink adequate H20 etc. even tho I really try. Usually, if I go, go, go for a week or so, then I have a BIG crash for 1-2 days. This also seems to go in cycles so even if I am taking it relatively easy for a while, I still crash every 3 weeks or so but this is more frequent when I am overdoing it.

How is any of this helpful to you? Well, hopefully if you know that others are struggling with same and have successfully made other choices (I cancelled two trips this month alone and the world is still revolving w/o me! ;-), that it might give you some strength to make some of those decisions also, and give you some support for explaining to family that this is a temporary but common result of the tx.

Sex? Forgettaboutit. I was a 2 year newlywed with cutie, cutie husband when I entered into tx. Sorry to say that we haven't had sex in months (I know, it's insane). Have no desire at all (can't even summon up a sexy thought), and even if I did, I would want to rest through it (LOL). Hubby is soooo understanding, and we are both waiting for the day when I am off this. In the meanwhile, what we are forced to do is plan for optimal opps - we're going away to cabin in mountains with hot tub. If that doesn't do the trick, aaaagh! Unfortunately for me, in past life a couple of cocktails REALLY did the trick and I hate it that that's out. I've found that a new environment, spa, massage and hot tub all really help so we're planning some weekend mini-vacas. Thinking of buying a hot tub!

Recommendations to you - drink more water than you think is humanly possible (I find that slugging lots early in the day is best). It really helped me with headaches and stomach upset. Also, I read the fine print on the Pegasys site that says that if headaches are a problem, eliminate aspartame. I have always been suspicious of aspartame (the whole health controversy) but drank a couple of diet drink, and a packet or two in my coffee daily anyway. I cut it out completely and guess what? Headaches almost gone - sometimes still have a mild one but no migraines in months and they were a HUGE problem.

Next, gently and *frequently* reinforce to hubby and family that things are different (even if you seem/look the same) and that it is *JUST TEMPORARY.* As you say, they are really not going through this (even if they are to some extent through you) and the JUST DON'T GET IT, so gentle reminders periodically are a big help. If we just persevere stoically w/o letting on, then it's easy for them to forget that things are REALLY not the same as usual. Plus some men need lots of reinforcement for things to sink in (sorry guys!). Do this not just when you are past the point of exhaustion but when you are snuggling in bed on Sunday morning, and remind him often that you need his help to get through this thing (they like that ;-).

Every time something comes up (work or social commitment), really consider if a) someone else can help you or handle it entirely, and b) will the world still revolve if you don't attend? It will and you will feel better for it! Believe me, it has taken me 6-7 months to figure this one out!

You have a great chance of success and it WILL be worth it. Good luck!

If anyone has any other tips on how to get that lovin feeling back, I am all ears! :-)

Robin
179856 tn?1333550962
Lauri

Sorry your getting flattened so bad right now.  For me, week three was around the time I got very anemic very fast (lost 6 points in just over a week) and believe me...I thought I was going to DIE.  Had anyone tried to have sex with me well...Lorena Bobbitt would have come to mind and FAST!

It's very hard on our bodies and our minds to do treatment and BOTH of them have to do with the ability, need, desire - whatever it is - to have sex.

I know your husband isn't going to get it because well face it...it's not happening to HIM.  The only advice I could give to you is to KEEP TALKING and keep the lines of communication open even MORE than they were before. Because he just can't understand that you are just going to really be THAT tired. As women (and you know how much stronger than men we really are) they expect us to be able to do everything AND look good AND smile AND take care of all their needs at the same time. When that 'support system' that they live for (our support) starts to need to take care of itself...well they seem to just LOSE IT! Waaa who's going to be here for MEEEE they cry!  So just keep talking and try and get him to 'get it'.

You are going to HAVE to learn to cut back now.  I used to NEVER EVER have a minute of ME time. Once I got ill with tx though - I decided that I had had enough pain and if I intended to make it through work I would have to make it ALL ABOUT ME for once!!!!!!!!  I declared Saturday (the day after my shot) my DAY OF REST.  I stayed in bed (which I'd NEVER done before except when I had the flu) each adn EVERY SINGLE SATURDAY of treatment.  I put the remote in my hand...a box of mallomars or containner of ice cream by my side...a heating pad and an ice bag and flipped the channels just snoozing on and off ALL DAY.

Wow. That's like a mother/wifes DREAM isn't it?  Just think you have a reason now to DECLARE THIS DAY FOR YOU TOO!

I'm telling you, not only physically but MENTALLY it was the best thing I ever did for myself.  would have have been able to do 72 weeks without it.

Oh yes - if my son had a big game I'd go over to it...or something like that.  But gone was the lady who got up to wash the kitchen floor and scrub the bathroom. FUGGIDABOWDIT!  

If you don't 'LEARN' to put YOURSELF first here you are going to run into trouble so you HAVE TO!  Hey, if it takes a bit of acting on your part at first to convince yourself well then you DO IT.  Leave on your pjs and slippers and stay in and REST.

It DOES help your body and your MIND for the coming week.

Sorry this got so long but I just want you to know...it's a whole new world.  It's a whole new concept.  YOU NEED TO COME FIRST RIGHT NOW.  YOU NNNNEEEED TO.  so please...do!

Debby aka NYgirl
72 weeks - Stage 3 Grade 2 - Geno 1A/1B
250084 tn?1303311035
Thank you, Thank you and going to let him read these post. ( Jeeezzz. even having to reply in a 'hurry' these days! That STOPS tonight!)
As much as they try, they just don't get how REALLY bad you feel, and as you said... a lot as you don't 'look' sick (though I feel I look pretty bad)!
It does seem to be really hitting me this 3rd week and I have GOT to learn to say NO, to many things, even this busy week. They will ALL have to work harder, cover my a** as I would for them.
My sons are the best, they do get it. think cause they know the 'normal' me so well. They MAKE me stop and rest. The man.....he's got some learning to do!! And only 3 weeks in!
Susan, yes, I am in that trial and that's why a bit extra worried as no rescue drugs so extra need to NOT need them :}  And as you always do, thanks for offering your shoulder....we have got to meet for breakfast when your passing thru.
Nygirl...ALL good post :} I removed all the "Lorena" objects out of the room, anything sharp :}
I also TRY to make day after shot my "I AM STAYING IN BED DAY", as it seems if I don't, I really crash 2 days later?? BUT, have to get thru to them that this INCLUDES....DON'T call me, bother me, tell me about ANY problems that I will feel the need to solve! Maybe if I rent a room the next shot day, he'll get it :} LOVE the mountains, I need one of those trips and I soooooo miss my 'wine, swing off the chandeliers, awesome s*x nights" TOO !!
Robin, All good advice and he's reading yours too :) I have never take aspartame (health nut that smokes:} and always thought it was bad. You said......
"Every time something comes up (work or social commitment), really consider if a) someone else can help you or handle it entirely, and b) will the world still revolve if you don't attend? It will and you will feel better for it! Believe me, it has taken me 6-7 months to figure this one out! "
Very HUGE thing I have to learn to do. I am the 'problem solver', EVERYBODYS shoulder-tho love doing it- NOT NOW I guess! May do everyone some good to REALLY see how much easier I make thier life's , LOL
AND...... I have a hot tub that's broke! Perhaps when I spread these post around...it'll get fixed now :}
Child24angel..... I do click accept and thanks for explaining and thanks for yours :) I think about you very much, your son and you have touched my heart :{
All, must say also, it is hitting me this week but I know it could be much worse and truly feel much of that is because it's such a hectic, busy week for us and all your post have made me realize..... THIER all doing it.... I'm not even going to the airport tomorrow! THEY CAN handle it. That is HUGE, HUGE, HUGE for me.
On that note..... I am dragging off to do my short 4 hour day at another job I decreased my hours from 10 to 4-5 hours!
thanks all :), I may be changing many things here and sticking with it even after :)
                                                  WISHING you a feel good day. Lauri
250084 tn?1303311035
You know how much we save in 'Therapy' cost on this website :} ???
A ton, I am sure.
Avatar universal
Drink more water to get rid of those headaches. Life returns sometime after tx is finished. You are so fortunate to only have to go through 24 weeks. I worked 9 hours a day for 33 weeks and I'm 65 years old. My desk job was easy. I got every other Fri. off. Then I retired. I finished tx 4 weeks ago and I can't tell you how much better I feel now. Of course the 8 massages I have had since then and 8 infared sauna baths have helped a lot too. You must put yourself and your treatment first. If you do it right you will only have to do it once. Loads of marvelous friends on this forum. I never had a sexual thought. I think the virus ate my labido, of course I've been post menopausal for quite some time and I live alone.  
Avatar universal
One more thought, that I thought of after the fact.  If you do decide to get your hot tub fixed and do a soaking, make sure you moisturize really really well.  You are on Ribavirin, too, right?  Our skin has a tendency to get dry and itchy so, a long soaking-though it may feel a lot better to our muscles and bones-requires a good moisturizing.  NYGirl recommends Gold Bond and some have found Eucerin cream to be most effective.

Susan
168246 tn?1212066854
Wow, you sound like my clone.  Sunday will be my 3rd shot.  Seems to be  getting worse daily with headaches and fatigue.  I have never taken time for me.  I have so many commitments and I don't work full time.  I do a lot of volunteer work that no one else seems to want to do.  Not to mention that the house work would never get done.  I don't think my husband understands just yet.  I was just talking to a girlfriend today about changing my lifestyle and slowing down and start thinking about me.  The symptoms you are having are identical to mine.  I would love to stay in bed on Monday but I have a commitment that day. And on Tuesday.  Wednesday I could rest.  Ha.  I look forward to more posts from you to see how you are doing.   I am not taking any other drugs with this treatment and hope I don't have to.  Talk again soon.
250084 tn?1303311035
Hi Ladies.
GrandmaA, I had slacked on the water a few days.And knowing how blessed I am in type 2 keeps me 'up', specially reading here. All my 'jobs' are very physical work, so simply have to let it go some.  Will hurt my pocket some, but I am okay and in a trial so little cost there. The NO appetite for sex (or food, lol) sucks tho. On the massages and infared saunas, I also plan to do a lot of 'cleansing' my body when done, but what is infared sauna's??

Susan, I'd bought the green bottle Gold bond right away, before tx from hearing NYgirl on it. Have coated down every night and no rash. (now, in the past, him rubbing me down, that 'menthol' all over feeling WOULD have resulted in ......ya' know :} now it's "oh your so good to me" and roll over!. poor guy!}  I know he will 'get it' at any chance I can muster for lacking so and not whining much. (once he's figured out I DO love him, just not 'it', right now "}

Jacksonp..........hi there. What type, tx are you doing? sounds like this is hitting you like me, okay at 1st than BAM. (read my post to tedinoregon "Oct 2007 Tx" as for what I KNOW I did 'wrong'.) Thought "oh, this isn't too bad" and just broke myself down. It was just a few days between feeling a bit rough to "OMIGOD' , this sucks! I think realizing I CAN'T keep up my pace ( that I love and HATE laying around) and I simply CAN'T do all I do is what caused my teary, crying for 2 days melt.
I hope your husband is understanding and I have had mine (man of several years, not married) read some of these post, than after my melt, talk the other night, he get's it better now. He has been wonderful already, all in our life just need to know how we REALLY feel and even the statements of others here as they say it so well, so they can better understand how to deal with and help us....as we would for them. I do have a great support system, 3 sons I can't praise enough right now, a sister, friends, people at work. One of my customers at 1 job have a girl h*ll the other day.."WHY is Lauri here? She should be home and WHY aren't YOU working for her" and so on. They love me :}

Also, I do 3 'jobs', 2 self emp. and 1 other. This week made me hand a LOT over to others. ( I can NOT get taken out of/off this trial either!) I am a bit 'anal' on doing things right, I have to let that go awhile! I also am always 'saving' an animal or person!  Point is, WE also have to let some of that go for now too.As you do a lot of volunteering, can you hand that over to ANYONE? And since you do that, maybe others can volunteer for YOU right now!?
Anyhow, we'll have to keep up on each other. Do read the post to tedinoregon (long tho, I babble!) but it says a lot about what NOT to do NOW.
                     Have a good day. talk again, Lauri
250084 tn?1303311035
D*m......another LONG post above up there. I really do babble!
  Extra Note: I am sure you have read here about drinking LOTS of water. A must, but be sure it's distilled or purified water.
Also, I started at tx 2 things....biotin (learned here of course) and B complex. I got the sublingual ones at a health food store. Biotin supposed to help with skin/hair loss and B complex with energy, depression, several things. As a few vitamins we aren't supposed to do lot of, A, Iron.....kind of hard to go with a multi vit.
                                                                          Lauri
173975 tn?1216261375
These supermwoman stories really have humbled me.

i can barely function and I live with a flock of birds and when they get on my nerves I put them in their cage and throw a blanket over it.!

Seriously,  when I moved in May (coz of financial toll of tx) I didn't give my new phone number or email addy to more than a couple of people.

I have the relative luxury of NOT getting over-extended coz I've become a hermitess and no one can contact me.  My choice.

it's hard enough to justify going through this cr*ap and all the awful SX to myself without having to explain it to anyone else.

Heck, I can't understand it half the time and I'm the one experiencing it!

I get mad at myslef!

LL, you do have to slow down or your body is gonna take revenge on you.  It's not your imagination . . . the sx are rough for most of us.  I'm at week 44 of 72 and while most of last week was relatively decent. almost normal, soon as I did the peg and neup I crashed again.  Haven't been out of the house in 2 days.

wyn
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