Aa
How do you get family to understand?
I'm sorry for bombarding with posts today. I didn't feel up to going to work because I'm green to the gills today with nausea. One major issue I am having is trying to get family to understand that this type of fatigue is not something I can just "get over". Being a single mom, I am usually exhausted. But on tx, I am totally wrecked sometimes. My boyfriend lives with me, but aside from cutting the lawn and doing the laundry, he isn't much help around the house. I am responsible for everything. I have a high pressure job and my 12 year old needs me so much right now. She just started middle school and the "boys" are beginning to circle.
Because I have a low VL and no liver damage, my boyfriend seems to think I am not really sick. He really isn't one to express his emotions, but jeez, since I started treatment, he hasn't once even asked me how I feel. I sat in front of him with a thermometer in my mouth last weekend, and he never even asked if I had a fever!
I have always been the one in charge, handling everything for everybody. Now I feel like no one is acknowledging my situation and/or pitching in to help. I also have so much guilt if I sit on the couch while dishes pile up. Or if I mention that my hair is starting to thin out. My sister had breast cancer at 41 and lost all of her hair. How dare I complain about a handful of hair after each shower? Think how much worse it could be.
I just don't think I have the tools to manage this alone and I definitely don't know how to help people understand what I'm going through and that I need help now more than ever. It's depressing.
Because I have a low VL and no liver damage, my boyfriend seems to think I am not really sick. He really isn't one to express his emotions, but jeez, since I started treatment, he hasn't once even asked me how I feel. I sat in front of him with a thermometer in my mouth last weekend, and he never even asked if I had a fever!
I have always been the one in charge, handling everything for everybody. Now I feel like no one is acknowledging my situation and/or pitching in to help. I also have so much guilt if I sit on the couch while dishes pile up. Or if I mention that my hair is starting to thin out. My sister had breast cancer at 41 and lost all of her hair. How dare I complain about a handful of hair after each shower? Think how much worse it could be.
I just don't think I have the tools to manage this alone and I definitely don't know how to help people understand what I'm going through and that I need help now more than ever. It's depressing.
First, I understand completely, many of us have been though this. Second, treatment will lower the bar significantly in terms of your opinion of humanity. Third, a lesson I did not learn on treatment, do remember that you may need (or at least have to) relate to some of these people when treatment is over. If you can't get over the fact that they are insensitive idiots only thinking of themselves then you may end up without too many friends when things are over -- nor on speaking terms with many family members for that matter. Don't ask me how I know. Just lower the bar of expectations -- like limbo low -- and you might make it through. I think GetterDone or IHorn recently put it very well. To paraphrase their strategy was simply to go off by themself or to unload here when things got bad and not to expect too much sympathy for those at home who should be giving it.
-- Jim
-- Jim
I too was a single Mom during treatment and HAD to do it all myself. 12 year old boy at the time. YOU YOU YOU come first! True your daughter does need you, educate her on sides as much as you can, ask her to help out but dont overwhelm her. I had to do it and I did and you can too! Some days you feel like doing things and somedays you dont... just part of the beast. Just remember it is only temporary and you need to look after yourself at this time and concentrate on making yourself well, the rest will wait! I always said that during treatment it was hard for people to understand that you are sick when you dont look ill. True fact!
Take the rest you DESERVE AND GET WELL!!
Shari
Take the rest you DESERVE AND GET WELL!!
Shari
"Even when he'd take me to the grocery store, I'd wander around aimlessly and then show him a jar of peanut butter and say "How about this?". "
I love that! Very well written post.
I love that! Very well written post.
It sounds like everyone depends on you. The change brought about by your treatment can really be scarier to your loved ones than to yourself, especially if you were well before starting the medication. I wasn't sick before treatment, so we were knocked off our feet when I became sick on treatment. It's a bitter pill to swallow.
The transition from my family role before treatment to what it's becomes through treatment was hardest at the beginning.
I couldn't realistically expect my family to give up the perks I'd provided year in and out without different degrees of difficulty.
My husband is adapting but my brother dreads to deal with it, even though he's bent my ear for countless years about his own problems. He acknowledges he's not a nurturer and it frightens him to think of his baby sister as sick. He runs from it, so it's easier if I say it's a walk in the park for me. I'm not bent to change him and I don't want to ruin our relationship.
My husband was in startled disbelief that there was - progressively - no gourmet dinner, no any dinner, no food, no groceries, no anything. Even when he'd take me to the grocery store, I'd wander around aimlessly and then show him a jar of peanut butter and say "How about this?".
It was quite an adjustment after forty years and it was very hard on him. I was the gal who frankly looked after every darn thing, if you'd asked him. (It wasn't true but I liked him saying so.)
I was insecure in the first weeks of treatment about my loss of leadership when I was still psychologically normal and only physically challenged. Once the meds set in with a vengeance, though, and my cell counts dropped enough, I found my near comatose brain actually protected me from ordinary feelings of guilt. I'd watch my husband make dinner as if I were an automaton, and he was delighted I didn't throw in my two cents worth. We've really adjusted, although there were some nasty, irrational outbursts along the way that popped out of nowhere.
And I agree with Johnare about the lab results. My older son can't relate to anyone being tired but when I told him how much lower than normal my white and red cell counts were, he was impressed. Telling him I felt dead in a coffin didn't mean a thing to him but the numbers worked.
All the best and by the way, do you take your pills with fat?
The transition from my family role before treatment to what it's becomes through treatment was hardest at the beginning.
I couldn't realistically expect my family to give up the perks I'd provided year in and out without different degrees of difficulty.
My husband is adapting but my brother dreads to deal with it, even though he's bent my ear for countless years about his own problems. He acknowledges he's not a nurturer and it frightens him to think of his baby sister as sick. He runs from it, so it's easier if I say it's a walk in the park for me. I'm not bent to change him and I don't want to ruin our relationship.
My husband was in startled disbelief that there was - progressively - no gourmet dinner, no any dinner, no food, no groceries, no anything. Even when he'd take me to the grocery store, I'd wander around aimlessly and then show him a jar of peanut butter and say "How about this?".
It was quite an adjustment after forty years and it was very hard on him. I was the gal who frankly looked after every darn thing, if you'd asked him. (It wasn't true but I liked him saying so.)
I was insecure in the first weeks of treatment about my loss of leadership when I was still psychologically normal and only physically challenged. Once the meds set in with a vengeance, though, and my cell counts dropped enough, I found my near comatose brain actually protected me from ordinary feelings of guilt. I'd watch my husband make dinner as if I were an automaton, and he was delighted I didn't throw in my two cents worth. We've really adjusted, although there were some nasty, irrational outbursts along the way that popped out of nowhere.
And I agree with Johnare about the lab results. My older son can't relate to anyone being tired but when I told him how much lower than normal my white and red cell counts were, he was impressed. Telling him I felt dead in a coffin didn't mean a thing to him but the numbers worked.
All the best and by the way, do you take your pills with fat?
I think you need to make them understand that even if there was nothing wrong with you that the medications you are on are what makes you feel so poorly. I've used the analogy that every morning when I wake up, I feel as if I had too much to drink the night before and the hangover sometimes lasts all day long.
Unfortunately, many people view this illness like they do something like the flu. in that you get sick and slowly get better. It's hard for some to understand that you can have a good day and then 4 bad ones in a row and then a couple of good days. Or that you can feel energetic for a few hours and then have a total collapse.
I have also found sharing my BL tests with my wife and family and explaining what everything means gives them a greater insight as to what's going on inside of me. When they see my WBC go from 12.5 to 2.3 withing 72 hrs. it really helps them see the biological changes.
Also try dividing up the chores. Give your BF a list of things you need from the grocery store and ask him if he would mind picking them up. You can also plan out a few meals that are easy for him and your daughter to cook. Ask your BF and daughter to help keep the house clean.
And most important...tell them you need them and it's going to be very difficult unless you have their full support and understanding and that includes stepping up and doing more around the house.
Unfortunately, many people view this illness like they do something like the flu. in that you get sick and slowly get better. It's hard for some to understand that you can have a good day and then 4 bad ones in a row and then a couple of good days. Or that you can feel energetic for a few hours and then have a total collapse.
I have also found sharing my BL tests with my wife and family and explaining what everything means gives them a greater insight as to what's going on inside of me. When they see my WBC go from 12.5 to 2.3 withing 72 hrs. it really helps them see the biological changes.
Also try dividing up the chores. Give your BF a list of things you need from the grocery store and ask him if he would mind picking them up. You can also plan out a few meals that are easy for him and your daughter to cook. Ask your BF and daughter to help keep the house clean.
And most important...tell them you need them and it's going to be very difficult unless you have their full support and understanding and that includes stepping up and doing more around the house.
ps I am a single mom too and made it through 72 weeks of treatment while working. I'm a BIG baby and a spoiled brat - if I could make it through you can too, so hang in there it WILL be over one day and the results are worth it! :)
Hi there-- I don't know much about having someone there with you.. I now live alone..My son moved out a couple of months ago...but when he was there--he wasn't much help anyway...hee hee..
I want to address your side affects... we do have rescue meds you can take for all kinds of things... for nausea..I have taken since week 3 (i'm in my 30's now) can't remember which week--your memory goes too --hee hee--- I take Zofran 4 mg as needed-- it helps!
***but make sure you are eating when you take Riboviran --it helps too with the nausea..I can remember for 6 months throwing up at work..in my trash can in my office -- so I know
for THRUSH -- the mouth sores... I take MYCELEX lozangers..10mg whenever it comes up and it does-- usually when my white count drops too low...
I just recently had to go on double dosage of PEPCID--presription strength --for severe stomach pain--and I mean severve-- plus GERD-- acid reflux-- NEVER had that before--
I take tylenol for fever and headaches--ok'd by my doctor
Of course I take NEUPOGEN shots every week for LOW WHITE count --and procrit shots as needed for LOW RBC... so you see-- there is help out there for us if we need help with RESCUE MEDS..
Good luck--ask your daughter too to help mom out--this is a tempory situation!
Dorsey
I want to address your side affects... we do have rescue meds you can take for all kinds of things... for nausea..I have taken since week 3 (i'm in my 30's now) can't remember which week--your memory goes too --hee hee--- I take Zofran 4 mg as needed-- it helps!
***but make sure you are eating when you take Riboviran --it helps too with the nausea..I can remember for 6 months throwing up at work..in my trash can in my office -- so I know
for THRUSH -- the mouth sores... I take MYCELEX lozangers..10mg whenever it comes up and it does-- usually when my white count drops too low...
I just recently had to go on double dosage of PEPCID--presription strength --for severe stomach pain--and I mean severve-- plus GERD-- acid reflux-- NEVER had that before--
I take tylenol for fever and headaches--ok'd by my doctor
Of course I take NEUPOGEN shots every week for LOW WHITE count --and procrit shots as needed for LOW RBC... so you see-- there is help out there for us if we need help with RESCUE MEDS..
Good luck--ask your daughter too to help mom out--this is a tempory situation!
Dorsey
I'm sorry to be blunt but right now....too bad, too bad, too bad! You are doing this to secure your health in the future and NOTHING should be or is more important than that. You have to remember that and they need to learn that if you don't.....nobody is going to be there to take care of anything for them.
As mothers it's not in our nature to be able to take time off and rest. I found doing treatment absolutely FREEING in this respect because I HAD to and so I did. It got to the point that I enjoyed the day after shot day and called it the "day of rest" and I did NOTHING and my family learned that they needed to respect this and take care of as much as they could on their own. TOO BAD! :) I only mean that in the nicest way though - in the way that you have to train your mind to think that too!
You come first during this time and have to learn this lesson. It's not an easy lesson but you have to come first.
If your boyfriend won't help and acts like he doesn't care well that totally ***** but isn't likely to change unfortunately. Does he understand that this IS chemotherapy? Would he act the same way if you had cancer and were treating that? Maybe he should learn that HCV can turn to liver cancer and what you are doing right now is fighting it now instead of later? I'm sorry there is nothing that can be done about that part but you need to just focus on YOU right now, as hard as it is, you have no option about it. He need to learn compassion and empathy and maybe this is his lesson that he'll take away from this. It just ***** and I'm sorry.
The sides will come and go and change and morph during treatment. For most its hardest in the beginning and hopefully you're getting over the worst of it. I found for myself that things did level out after a while and it became tolerable - never any fun but mostly tolerable.
Good luck.
As mothers it's not in our nature to be able to take time off and rest. I found doing treatment absolutely FREEING in this respect because I HAD to and so I did. It got to the point that I enjoyed the day after shot day and called it the "day of rest" and I did NOTHING and my family learned that they needed to respect this and take care of as much as they could on their own. TOO BAD! :) I only mean that in the nicest way though - in the way that you have to train your mind to think that too!
You come first during this time and have to learn this lesson. It's not an easy lesson but you have to come first.
If your boyfriend won't help and acts like he doesn't care well that totally ***** but isn't likely to change unfortunately. Does he understand that this IS chemotherapy? Would he act the same way if you had cancer and were treating that? Maybe he should learn that HCV can turn to liver cancer and what you are doing right now is fighting it now instead of later? I'm sorry there is nothing that can be done about that part but you need to just focus on YOU right now, as hard as it is, you have no option about it. He need to learn compassion and empathy and maybe this is his lesson that he'll take away from this. It just ***** and I'm sorry.
The sides will come and go and change and morph during treatment. For most its hardest in the beginning and hopefully you're getting over the worst of it. I found for myself that things did level out after a while and it became tolerable - never any fun but mostly tolerable.
Good luck.
I can honestly relate. It was not hubby but his grown daughter, her hubby & 2 kids that we let move in a week before my diagnosis came in. I am getting over whelmed right now thinking what I went thru with them. awful, awful insensitive, kids running making messes, me cleaning up my kitchen after she cooked...............folding her clothes left in dryer, putting wet ones in dryer so I could do my laundry.
Anyways like Mike said sit on the couch or lay in bed and watch TV, maybe your daughters fav show make it "you twos time". The house work will be there in 3 days if that is when you feel up to it. Take care of yourself and remember POST HERE WHEN YOU NEED SUPPORT!!! We have all been there or are gonna be there. When I have time I will find the links to the answers to almost the exact question when I asked it LOL.
Oh BTW I finally told the step dau to get out if she did not want to keep her kids in line and do things my way. She left...................
Denise
Anyways like Mike said sit on the couch or lay in bed and watch TV, maybe your daughters fav show make it "you twos time". The house work will be there in 3 days if that is when you feel up to it. Take care of yourself and remember POST HERE WHEN YOU NEED SUPPORT!!! We have all been there or are gonna be there. When I have time I will find the links to the answers to almost the exact question when I asked it LOL.
Oh BTW I finally told the step dau to get out if she did not want to keep her kids in line and do things my way. She left...................
Denise
You hit the nail on the head - I know I have to try to put myself first so I can take care of my daughter. But since I fly off the handle so quickly because of "slow on the uptake /insensitive creep's" lack of interest or caring, I spend more time aggravated and stressed out! Damn, it's so hard. Thanks for the advice. I will try harder.
Sit on the couch whenever you want to and do not feel guilty. Don't scrub hard when you're washing your hair. Be as gentle as you can. There is no profit in hurrying the thinning process along.
I wouldn't worry about your boyfriend's needs or wants. He'll live through it and maybe even grow during your treatment. Men are often naturally not as nourishing as women but they can learn to be better. I wouldn't expect much from a guy who doesn't ask if you have a fever when you're sitting there with a thermometer in your mouth. He may be slow on the uptake or he could just be an insensitive creep. Put yourself first and your Daughter next. The reason I say to put yourself first is that you have to take enough care of yourself to be able to help your Daughter.
I wish you the best.
Mike
I wouldn't worry about your boyfriend's needs or wants. He'll live through it and maybe even grow during your treatment. Men are often naturally not as nourishing as women but they can learn to be better. I wouldn't expect much from a guy who doesn't ask if you have a fever when you're sitting there with a thermometer in your mouth. He may be slow on the uptake or he could just be an insensitive creep. Put yourself first and your Daughter next. The reason I say to put yourself first is that you have to take enough care of yourself to be able to help your Daughter.
I wish you the best.
Mike
I couldn't believe the queasiness. It was awful. But that one usually does pass. Yeah, it lasted almost a month and I thought I was going to die, but it did pass. Hang in there. This is very, very hard, but you will do it.
Maybe that's it Marc. I am just into my 3rd week. I had a earlier post that asked if sides got better or worse? Mine seem to be getting worse. The first two weeks were relatively manageable. This week has been hell. Fatigue, migraines, fevers, rash and that awful constant queasiness. Hopefully it will get better. I also will begin to rethink the dynamic of my relationship with my family. Maybe deep down I know some of them won't be there for me the way I need them to and I just don't want to face it. Anyway, thanks for making me think. Good luck to you too.
Alysmom – Boy can I relate! And I wish I had an answer. At my worst I found it impossible to explain what I was going through. I'd spend the entire weekend in bed and I'd still be too tired to do anything. It was very hard for my wife to understand what was happening.
I think on the one hand you need to be patient with your boyfriend because it is a difficult thing to understand. But on the other hand, you may ultimately need to change the nature of your relationship. You can't be a superwoman provider for everybody. You just can't. And yes, the laundry goes undone, and dinner is hell to cook.
Obviously the first priority is your daughter and you need to be as alive and present for her as possible. A lot of other things you might need to let go. It's very very hard. But, you know, in a weird, perverse way I've found it a growing process. It certainly leads to humility.
I don't know when you started treatment, but I wanted to let you know that for me there was a very rough patch and then things got much better. Good luck. I sympathize with what you are going through.
I think on the one hand you need to be patient with your boyfriend because it is a difficult thing to understand. But on the other hand, you may ultimately need to change the nature of your relationship. You can't be a superwoman provider for everybody. You just can't. And yes, the laundry goes undone, and dinner is hell to cook.
Obviously the first priority is your daughter and you need to be as alive and present for her as possible. A lot of other things you might need to let go. It's very very hard. But, you know, in a weird, perverse way I've found it a growing process. It certainly leads to humility.
I don't know when you started treatment, but I wanted to let you know that for me there was a very rough patch and then things got much better. Good luck. I sympathize with what you are going through.
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