Unhelpful family vent: am I the only one?

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mamamuse
Regular Member


Date Joined Dec 2006
Total Posts : 102
   Posted 7/8/2007 3:08 PM (GMT -7)   
I just lost it with my DH and kids (boys, ages 9 and 5) because I am fed up with their not helping me as much as I need them to around the house. If this gets long, please forgive me.
 
I was dx three years ago, and you'd think that by now, DH especially, would understand that I'm not crying wolf, whining or being lazy when I need to take a rest. At the moment, I'm in a mild flare. I have sores in my mouth, a mild malar rash, the usual joint pain, and waves of that awful "lead bones" feeling of tiredness. I've also been battling nausea all day, and am trying to get over a cold I caught a few days ago.
 
I'm a writer, and I have a long-awaited book signing this Thursday night. It's a big community event, and I still have quite a lot of small details to finalize. I know that if I do not pace myself between now and then, it is going to be one miserable evening for me, and will take me days or weeks to get over not listening to my body.
 
Our finances are really tight, and we don't get paid again until this Friday. My parents took me and the boys out of town last week, so I came home last Friday to a MESSY house devoid of easy-to-fix groceries and no budget to go buy anything. So the last two days I've had to do some major cooking.
 
After church today, I made a big pot of homemade chicken and dumplings and some vegetables to go with. By the time it was ready, "lead bones" had hit me and I had to sit down. After dinner, I didn't have the energy to clean up...I'd barely even wanted to eat. So I zonked out in the recliner, telling DH that the lupus was flaring up and I had to rest. So, what does he do? Naps on the sofa while I'm down. Even though I'd asked, no, begged him and the kids to please clean the house today so that would be one less thing off my plate for this week.
 
I'm not saying no one else in this house deserves a rest. But I know that all three of them slept soundly last night (DH even commented earlier on how great he slept). I was up and down feeling awful. And the thing is, I don't even have this hugely high standard for cleanliness like some women I know. I can handle dust bunnies and a lived-in look. But I can't handle sloppy bathrooms and countertops overflowing with dishes from the sink, and floors that haven't been mopped in a month. And let's not even discuss the grass that hasn't been cut since what, maybe late May? confused
 
I've tried to articulate how much this hurts my feelings, how it makes me feel unvalued and disrespected. But they just don't get it. I imagine it is hard to live with someone with such an unpredictable disease. But for them to act like, "Well, Mom isn't doing anything, so why should I?"...it really hurts.
 
If you have any ideas for how to make a family understand that this isn't about me trying to get out of work, I'd love to hear them. Now my hands hurt from typing this vent so I guess I better go rest again. All the guys are outdoors, playing with the dogs... eyes
Kari
Wife, writer, artist, mom to 2 wonderful boys
Lupus, arthritis, PCOS, mild depression
Now taking: plaquenil, limbrel, metformin XR, Zoloft, and the occasional percoset


tash32
Regular Member


Date Joined Aug 2004
Total Posts : 233
   Posted 7/8/2007 4:33 PM (GMT -7)   
Hi Kari
Sorry you are having a rough time with your family, I found the spoon theory a good way of explaining how I feel to my family maybe you could try it http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
 
I hope this helps
take care
tash32

FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 7/8/2007 4:42 PM (GMT -7)   
Just wanted to send some happy thoughts your way! I hope that things get better for you, soon. My immediate family (DH and 6 kids - ages 21 - 28) are very supportive, but the same cannot be said of my extended family. In fact, not long ago, my BIL commented that Lupus just seems "so annoying" to him. He's still alive, so I obviously wasn't having one of my worst days!
Perhaps for your kids, you could try some kind of "experiment". They could wear ankle and wrist weights for a certain period of time and see how much harder they have to work just to do ANYTHING! Not that I mean for you to punish them - it is just so hard to explain this disease to adults, let alone children.
Good Luck - I hope you feel better, soon. Fran
Take care,
Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Meds: Plaquenil, Zyrtec, Prilosec, Nasacort, Prednisone, Prozac daily.
Meds: Epinephrine, Benadryl, albuterol (as needed).


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 7/8/2007 6:13 PM (GMT -7)   
Kari, I really feel for you - this must be a tough situation to be in. Like Fran said, I think a lot of us have experienced at least some people in our families who do not get what it is like to have lupus. My husband is usually pretty understanding, but I have times of terrible guilt when I feel like I don't have the right to ask for help because my husband works at a very demanding job and I no longer work. I also keep waiting for the day that he is going to get sick of living with someone who is chronically ill.

I think you are very right that our illnesses are hard on our spouses and childre, but I do think there should be some way that each person can really try to understand what it must be like for the other one. The Spoon Theory is great and I've handed it out to many people who are close to me. Also, a little while after I first got sick, my husband and I went to a marriage counselor, not because things were going badly, but as more of a preventative measure to help us adjust to all the changes my illness would bring. We both had to deal with how much my life was changing and all of the limitations I was faced with. I do think counseling can help, especially if it's hard to talk about these things on your own. Another possibility is to take your husband to one of your rheumy appointments and have your rheumy explain some things to him. I think if your husband got on board to help more and explained how important it is to your children, they might follow his example. I know for my kids, who are the same age as yours, a specific list of chores for them has helped. They might grumble a little, but it makes them feel good to have some reponsibility and contribute around the house. My kids even found some chores they have fun doing like dusting and moping and vacuuming.

I hope that you and your husband can create some balance so that he and your kids share some of the load around the house. You'll be in my thoughts. Good luck with your book signing and I hope it's not too hard on you.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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Co-Moderator: Lupus and CFS Forums



PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 7/8/2007 7:24 PM (GMT -7)   
Kari,

I feel especially bad for those of you whose children are still young because you have so much work that you have to do regardless how you feel. Being sick is enough of a burden, but then to add to it not having the support of your family must be terribly difficult. I would be angry also, but I know my children have never responded too well to that and so reading the spoon theory to your children and showing it to your DH sounds like a pretty good way to explain to them what you're going through. Then the idea of giving your sons regular chores to do will be good for them whether or not you were ill.

I had always done everything around the house when my children were young but when I went back to work I found it hard to keep up with everything. So I started giving away chores a little at a time. The first thing I did was to purchase ten laundry baskets. I gathered the family together and told them that I couldn't do everyone's laundry anymore. I gave each of them two baskets, one for their lights and one for their darks, and told them I was reserving Saturday morning to do my laundry as well as my five year old daughter's. Everyone seemed ok with the idea until about a week and a half went by and my husband came to me to tell me he didn't have any clean underwear. I just said, "I'm so sorry" and walked away. (Our marriage was already failing or I would have been nicer about it) The next thing I knew, he was washing his clothes. It really worked, so a few months later I added a new chore to their list of chores. Had I gotten angry with them it might not have gone as smoothly. To this day my sons, who are 29 and 32, still do their own laundry.

That's not to compare what I was going through at the time with everything you're having to deal with, but it's just an example of how a difficult issue went more smoothly for me than I thought it would.

I do hope your book signing goes well and I'll be thinking about you. Please let us know all about it.

Love,

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 7/9/2007 7:18 AM (GMT -7)   
Kari,

I understand where you are coming from. My husband and son are sometimes good at cleaning up after themselves sometimes but not all. I had to put my foot down long ago and tell my husband that if I cook, then he will clean up afterwards and vice versa. I was NOT going to do both, and I told him this before I got sick. The problem mostly lies with the rest of the house for us. My husband won't clean bathrooms but he will complain about it if they get too bad. I don't like unclean bathrooms but that is the most difficult thing to clean for me (a lot of bending down and reaching). My son is another one. He is 13 and thinks the whole house is his bedroom. There is not one room in the house that doesn't have dirty socks, CDs, bookbag, etc. and I have to be on his case constantly.

I also hate reminding my husband that I am sick and I know he gets tired of it but it seems like I always have to justify why my house doesn't pass the white glove test. I guess I just wanted to post this to let you know that you aren't alone.

Take Care
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin 2mg/day (tapering to PRN), Miralax 17g, Supplements


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PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 7/9/2007 7:55 AM (GMT -7)   
This is such a frustrating issue, and it must really have struck a cord with me because I feel compelled to write again.

After my sons had had a couple of bikes stolen, I still used to have to nag them to put them in the garage. When I finally had had it with one of them, I asked a neighbor if I could hide his coveted bike in her garage. My son was devastated when he thought it had been stolen. After a couple of days I told him what I had done, and guess what, he never left it out again. And Des, he was probably about 13. Their minds are elsewhere at that hormonally charged age, which makes it to hard to teach them things. I'll bet after you son's backpack and other treasures disappeared from around the house a couple of times you'd never have to talk to him about it again. The only time I ever grounded that son was after he had continued to do something that drove me crazy. When I told him he was going to be grounded, his eyes got huge because I'd never grounded him before, and he asked me for how long. I told him it was up to him, and when he said , "uh, a month?" I just looked at him, and said "no, until we get home in 20 minutes." From then on he was much more respectful to my few demands on him.

What you've done about the dishes is so smart Des. Husbands can be taught, but it's a challenge.

As I've said at least a thousand times, my heart breaks for those of you are sick during your childraising years. I honestly don't know how you survive. As it is, I feel so guilty for not being a bigger part of my adult children's lives and it has been causing a bout of depression in me for the past few days. Then I wonder how I can possibly feel sorry for myself when I can rest whenever I want, go to bed whenever I want, clear my calendar for however long I want, not cook unless I want to. My granddaughters come over when I feel up to it, plus every Tuesday night. It's only one night a week so I really look forward to it and can plan ahead and be rested before that day comes. If I feel good enough, they stay the night and I hang out with them the next day. But the guilt I would feel if I were raising them would be so hard to deal with. I really commend all of you who do it day in and day out with no relief. I was healthy when my children were little and still, I was tired all the time.

I know in my heart that chronically ill women who raise children are just another of God's little angels on earth. Some day when your kids are grown and raising their own busy families, they will look back and wonder how you did it. And it's then that they will really begin to appreciate how much love you had for them.

I've never given the spoon theory to my children, but you've inspired me to send it to them today. Maybe then I'll feel better. I hope you, Kari and Des, and all the rest of you have a better day today. I love all of you.

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin


CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 7/9/2007 9:16 AM (GMT -7)   
I go on strike. I figure enventually they will get hungry, need a dish, need clothes, something. When they whine, I explain that I will contribute when they contribute. Tell them the terms and explain that although they are very special to me, they are just as capable and should be just as responsible. If they claim ignorance, I teach them how to do things. Unfortunately, this means things won't be perfect or run smoothly for a while. In the long run it is better for everyone that the duties are shared. Besides, I worry about how they will live if I am not around to take care of them otherwise.

It is funny how much people will put off on you, if you let them. They also don't like losing a maid or cook and will do almost anything to keep the status quo. I.e. you do all the work and they sit on their butts. It is just easier that way.

At first, I explained, tried to show articles to them, whatever I could think of to be polite and still get the message across. However their receivers were down and I wasn't getting through. So I cut the lines altogether. I suppose there are better ways to get your point across. But some people are more hard-headed and need to learn through consequences. I have to say, protesting can be tough but worth it. It is kind of a liberating but chaotic experience - like a "who can be the most stubborn" contest. They don't seem to mess with mom too much any more - and everyone survived. I win.

Luckily for me, they weren't evil just lazy. Otherwise I would have had to bolt out of there. I hope you find the right solution for you and your family. Try and see the humor in it and put your foot down, even if you are in the middle of pulling your hair out and depleted of energy. The way I see it, there will be aggravation and energy lost either way. Goal is for everyone to live through it. Good luck! - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 7/9/2007 10:32 AM (GMT -7)   
Kristin,

Your idea of going on a strike and using humor is Great. When my granddaughters are here and get out of the shower and drop their clothes and wet towels on the floor, I call out, "maaaaaid, maaaaid, come pick up these clothes." Then I ask them where she is. They just laugh at me and pick up their things.

I'll bet you have good luck with your family. I agree that they aren't evil, but just lazy. My teenage daughter is kind of spoiled in some ways and I know it isn't her fault, but mine.
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin


omega
Veteran Member


Date Joined Jan 2007
Total Posts : 607
   Posted 7/9/2007 12:01 PM (GMT -7)   
I know how you feel.  It can be frustrating.  My H will clean up the dishes because I do the cooking.  Other than that, unless I am more than half dead, I have to do everything by myself.  I just do it when I feel good doing them.  I think going on strike is a good idea.  You can just cook for yourself and clean up your own dishes.  If you can stand it, just let their dishes pile up and see what happens. 

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 7/9/2007 1:59 PM (GMT -7)   
Hi Kristin, I live by myself so I really don't have anything to add. I get mad at myself when the dishes pile up but if I don't do em oh well. All I wanted to say is I think that is awesome that you have a book coming out. So what is it? fact/fiction? is this your first book? Where are they selling? I think it would be cool to have an autograph book and be able to say I knew her when she had to wash her own dishes! LOL I hope you took that in the spirit it was given. I have a sick sense of humor somtimes.
I hope you can get some much needed rest. and you know what. If things don't get done around the house oh well. Let them rot I say! this is your big day coming up. Don't sweat the small stuff it will get done. You take care of you and enjoy your success!

God Bless
carol
God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax.5mg
 
When things are really dark look up. You can see the stars.
 
 
 


mamamuse
Regular Member


Date Joined Dec 2006
Total Posts : 102
   Posted 7/9/2007 9:44 PM (GMT -7)   
You guys are the best! Thanks so much for all the helpful feedback. I'd totally forgotten about the spoon theory. I read it to my husband and it's like something clicked with him. Yay!

Now, let's just hope it lasts. And if not, I'm going on strike! LOL
Kari
Wife, writer, artist, mom to 2 wonderful boys
Lupus, arthritis, PCOS, mild depression
Now taking: plaquenil, limbrel, metformin XR, Zoloft, and the occasional percoset

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