another non-supportive family thread

As you guys know, I'm new to UC - just diagnosed in October, after suffering since about June. I'm the "responsible" one in both my family and my husband's family. Anytime there is a problem, both sides of the family turn to me to "fix it." In my household, I deal with all of the cleaning/bill paying/logistics of everything, and my husband runs his own business.

First, with the fatigue, I can't do much of anything in the way of cleaning. I try to keep the laundry going, but hanging up clothes / cleaning the kitchen, etc. just exhausts me. I can't do it. So the house is a mess. Husband keeps saying "tomorrow I'll pick up," but tomorrow never comes. We're going to hire a once a week housekeeper, so that's an easy fix. But he just seems so angry that I'm sick - yesterday, since I'm still recovering from food poisoning, he made me some noodle soup for lunch. He gave me a really big bowl of it, and I ate probably about a cup worth - and he started yelling at me that the least I could do is eat it since he made it for me! Here I am dying with gas and heartburn and stomach cramps, and he's mad I didn't clean my plate?! He apologized later but geez.

Then, my Aunt that I'm really close to has decided that the UC is my fault because I didn't like veggies when I was a kid. She also thinks that prednisone is no big deal, and that I'm being stupid to be scared of where the UC can go. I've expressed worry that the Asacol / mesalamine combo isn't going to be enough to get/keep me into remission, and she thinks that escalating to a more heavy hitting drug is just no big deal. She's decided that my UC is no different than her bi-polar, and that I have nothing to be scared about or to complain about, and I'm this spoiled person because I don't want to take tons of pills for the rest of my life.

My Mother in Law's first question was "how is this going to impact your ability to get pregnant?" And then "well how long does colitis take to go away?" I explained that it was an auto immune issue and that I would probably have to take medications for the rest of my life. Then back to the "well what about grandkids" discussion. My father in law was in a bad accident 3 years ago, falling from his roof that he was working on. It left him in a permanently vegetative state, and my mother in law cares for him full time (with in home health / nursing assistance several days per week). So she has turned to my husband and me for 100% of her emotional and organizational support. She has enough money coming in from my father in law's disability, but we're in charge of making sure insurance, taxes, all that stuff is all taken care of. We're talking nightly 9pm phone calls from my MIL panicking about...well, usually nothing. My father in law left a tax mess for us to clean up, and we're working on it, but it takes time and generates a lot of mail that freaks her out. If my husband doesn't answer the phone, she alternates calling the house phone and our cell phones until someone picks up. The good news? As of this week all of her tax problems will be resolved, so we can at least wrap that up. But anyway, I seriously doubt the 9pm phone calls will stop. My solution is going to be to just unplug/turn off the phones!

I just feel really alone in this, and I'm wrestling with what could be with UC (which is pointless, I know that). I'm worried about keeping my job (they have been good so far, but I've only missed 2 days, but my brain isn't working properly on the prednisone and I'm really worried about getting totally killed over the motions I've been writing lately), what is going to happen in the future, having kids...all that stuff.

Sorry for the long rambling vent but no one really seems to understand, and I'll bet that some of you on here understand this perfectly.

I am so sorry meyerlemony, sounds like you have alot on your plate and non supportive relatives. I think it is hard for people to understand our illness especially b/c they can't see it. Alot of times we look totally normal. I like the fact that you will be getting a housekeeper to come once a week and clean the house. You def. could use the break and if you can pay for it, why not? I hope you can find a way to get your husband to understand b/c of all the people you mentioned..he is the most important one to get on your team. You need to be good to yourself and now is the time for his support. Maybe someone will have a good reccomendation to help him understand.

As far as these other "non supportive" relatives, I think it may be time to stop discussing it w/ them. Find a good understanding friend (or family member) and save it for them. People may mean well, but with silly comments it is just annoying. Even if you need to talk to a professional , def. do it. I think it is very hard to come to terms w/ having a chronic disease, especially when we are young and it can help to discuss w/ a therapist. I had a very hard time accepting it, not to mention being angry b/c I have good health habits and I couldn't get passed it. I spoke w/ a therapist for the first time in my life for one visit (well, over the phone) and it did help. NOt a magic bullet but helped.

As far as mother in law---does she have any other kids that can help out? If not, maybe your husband can be on mom duty for a while, until you can get yourself back on the way to health. Hard to care for anyone else, when you have nothing left to give yourself. Do what you need to do to feel well and heal. ( I know easier said than done) .

Either way, know we understand and are sending hugs your way. I'm sure others will have some good suggestions for you too.
B

wow your MIL and husband sound really self-centered instead of thinking about you. has your husband always been like this? or is he under a lot of pressure due to his parent's situation, which sounds awful.

your first priority is your health, before house cleaning or cooking.
if you have been the "giver" in the past you'll have to tell everyone you can't do that now.
sounds like decreasing pred is making you feel low in body and mind.

don't let yourself worry about the future. lots of women here have gotten pregnant and had healthy babies.
take it one day at a time.

have a quiet talk with your husband. it's hard to get men to get in touch with their real feelings but he may be feeling anxious about your condition and it's coming out as anger. men don't like things they can't fix because that's what they want to do. reducing your stress is a big part of healing. best wishes.

My first thought when I read your post was that your husband must be upset by your health situation and cannot express it. I don't think he's upset about the soup.

Richard, your post about the way men think was enlightening. Interesting. :)

Madpotter said...
Richard, your post about the way men think was enlightening. Interesting. :)

And true. The flip side of that coin is that women often expect men to be able to read their minds. A former girlfriend once asked my to "do some cleaning in the living room". So I vacuumed, dusted the knickknacks, picked up the old magazines, etc. See was really annoyed that I hadn't taken down the curtains and washed them because to her that was obviously the first thing that needed to be done.

I just want to say hang in there. Like the others said I think your husband is frustrated that your sick and he feels helpless because he can't help you. Men want to fix things and this he can't fix. He will eventually understand that this is something that isn't going to go away and there will be good days and bad days. It probably took my husband a year before he finally understood and even longer to realize that this was for life.

Good luck with the MIL. I have no advice for that because I have never had to deal with my MIL. Turning off the phone sounds like a good idea to me.

"be an adult and just hold it",

Yeah man, be an adult and hold it. Geez. What are you, 1 year old... ;)

I was told by a family member, "just get some adult diapers -problem solved"!
Family members can be just so helpful and supportive, can't they?

Somedude, you could do the "night-time pull-ups" for big boys....haha

Madpotter said...
a male friend in college once told me that men do not like to acknowledge problems because they think it becomes their problem. Is this true?

It's not true for me. I'll acknowledge a problem when I see it even if that ultimately means adopting a problem as my own. And who says men can't delegate to someone else if need be?

I think you're all right, and THANK YOU so much for the support!

My husband completely has 0 coping mechanisms for stress or when bad things happen. I know he is totally upset that I'm sick and he has no idea what to do about it. We have been together since high school, we're attached at the hip really! He's just getting slammed from his mom and one of his sisters, who is probably the most self-centered human being I've ever met. Well, at least one of them. Now that were a mere week or two away from getting all of their paperwork issues straightened out, we can start basically cutting people out / reducing the impact other family members have on our lives.

My husband comes from one of those families where absolutely nothing ever went wrong - up until his dad's accident, all of his grandparents and aunts and uncles and cousins were still alive and healthy. He's got 3 younger sisters - he is the oldest - and 1 is the selfish one I referenced above (she's 28), the other is about 30 and has basically be excommunicated from the family for years, and the youngest is my best buddy (she's 22). She was even my maid of honor! She's actually been pretty great through this whole thing.

I've been in therapy, but after all that therapy I'm starting to realize that, actually it's everyone else that needs to be in therapy! The money is going to be better spent on a house keeper and potentially some therapy for my husband. I can handle myself - it's the mess that other people want to dump on me that I can't do anymore.

My husband just talked me into booking a trip to the Big Island / Hawaii for my birthday in February. I have a lot of GOOD things going on in my life, too - I'm in the process of applying to 2 different jobs, one in government and one in teaching, that are basically my 2 "dream jobs I would keep until retirement" and I think I have a good shot at both of them. Neither involve litigation, so that would be a blessing. I like the firm I'm at but litigation is SO high stress, and being a small firm if I'm out there is no one to cover for me, so that's a tough thing.

I'm worried I'm going to have a pred induced hissy around thanksgiving if anyone starts in on me. Actually, it would probably do some good! I'm always the nice one

Somebody said...
I've been in therapy, but after all that therapy I'm starting to realize that, actually it's everyone else that needs to be in therapy! The money is going to be better spent on a house keeper and potentially some therapy for my husband. I can handle myself - it's the mess that other people want to dump on me that I can't do anymore.

This is totally the best possible attitude to have in your situation. I was reading thru all the posts and wanted to say the same thing if no one else said it. You're doing well, all things considered. When I was in your place, a few months after diagnosis, I was still in denial about having a lifelong chronic illness and was for a good number of years. I live so far away from any family apart from my husband and children that I, thankfully, only had them to deal with. My kids were so young when I was diagnosed and my dh wasnt always so helpful but he wasnt cruel, just sort of ... not as helpful as I needed him to be until I landed in hospital, bless him, that kicked his butt into gear a bit. I did have well meaning friends who have given unsolicited advice about diet, getting some exercise, etc. I think now I have *one* person Id call a friend. This used to bug me, but it totally doesnt anymore. I have no problem keeping most people at arms length bc of the 'help' they offer. Im not interested in going into it over and over again.

I dont see the point in trying to mollify everyone I meet with an explanation about why I am the way I am, so I dont. People really irritate me when they try and offer unsolicited advice and I cant be bothered with 'friends' who refuse to understand that they dont have the answer for everything.

I will definitely let everyone know if there is a pred induced hissy :)

Good news today, my GI is letting me taper the prednisone down to 15mg starting tonight (remember I'm the weird "take at night" prednisone girl), and I got my next consult set for Monday! Potentially just 5 days at that dose if nothing goes wonky, so that would be great.

Since I have been on the prednisone I'm basically back to my every-other-day-only bathroom habit. Sometimes every 3rd day, which isn't always good but that is my old normal, pre-UC. No blood, no mucus, really awesome.

I have some weird indigestion / bloating after I eat, but my GI thinks that this is the prednisone and stress wearing on my stomach. I also spoke to my dermatologist about that rash from the ER, but he said as long as it doesn't spread or break open he'll just see me on Nov. 20th, the next normal appointment.

@SoIGotIBD - I'm totally in denial and pissed about the UC. Completely, utterly pissed at the world. I'm 100% compliant with my treatment and meds, though, because I have gone through some NASTY health issues with family members and seen what happens when you don't listen to your doctors. My mom essentially drank herself to death - went from pancreatitis to pancreatic cancer, and wouldn't put down the bottle for long enough for them to do the surgery. By the time they could do it, it was waaaaay too late. So unfortunate because even though that is basically the deadliest cancer out there, they caught hers so early she could have had a chance. She was 51! Terrible, because my mom was really one of the smartest most talented (could sing like nobody's business) amazing people, but she allowed substances to take that all away.

So @RichardinNY - I 100% understand what you are going through. My mom died of that disease, and I have an Uncle that is doing quite well after an in-patient rehab. It's kind of the same - you have to want the remission for you, and it is really, really hard. Alcoholism runs in my family. Wait. Let me rephrase that. Everyone in my family (blood relative) is an alcoholic except for me. Not that I don't have a completely addictive personality which can be fun to deal with, but growing up with it gave me a kind of awareness that has allowed me to not become addicted to any substances. I actually never would even drink at "events" until my mid-20s, alcohol terrified me so much. My best friend often reminds me that "two vodka cranberries every 3 months does not make you an alcoholic!" Which is usually her trying to get me to have a third :) But she's right. Maybe that's why taking all of these pills freaks me out so much - asacol, VSL #3, prednisone - I feel like I'm popping pills! Totally illogical, I know.

I was talking to my dad about Thanksgiving today, and was worried about eating, etc...and he said "isn't there something you can take?" I was like, dad, I'm taking 12 pills a day already! Geez! He is starting to get it at least. Now I just tell people to go freaking google UC and talk to me after.