Aa
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
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
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
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
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
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