newbie from houston

[proverbs31woman]

Heller!!! Wow I am so happy that I found this site. I feel so alone. I can't even explain it. I don't like to complain, I just suck it up and do what I have to do. But now it's getting to the point where physically I just can't. I am tired of apologizing for being tired, or feeling as though I have to explain to my family that I am not lazy just sick. I am in tears as I type this and my eyes effin hurt. Nobody understands. My husband and kids love me but they can't understand. They joke about me having a big head because my parotid glands are always swollen and I laugh it off. But it hurts.

When I walked into my mother in laws house to drop my kids off because my husband and I were going on a date night, she told him boy you look good, she told me, Ooh your face is big. What hurt even worse was that my husband said nothing. If I was a burn victim would they think my scars were funny?

I work at night so that I can be home for my 3, 5, and 15 year olds. On a good night I get 4 hours of sleep, sometimes as little as 2. I feel guilty for taking a nap during the day. I am looking at laundry that I have washed and folded and no one thinks to put it away. My table needs to be dusted, my floor vaccumed and nobody will lift a finger. i had a talk with my husband and daughter when I was first diagnosed...I told them that they need to pitch in, they agreed and said that they would and they have not kept their word. I am tired of being misunderstood.

Thanks for listening to my ramblings.

[Linda196]

Hello, and welcome to Sjogren's World.

I remember the days of looking at the housework, watching it pile up, and getting no help with it. I'm not sure if there is a "right" way to get others to help out, but I did get a bit of action when I started picking up after myself...and only myself! I continued to do the cooking, and kept the kitchen tidy, but any belongings of others were left where they lay, until the owner retrieved them. Of course it meant getting used to a messy, cluttered house; and keeping bedroom doors closed,  but eventually the message got across. Maybe it's time for another talk, and a detailed list of jobs, not just a polite request for people to "help out".

The best advice I ever got, was to stop feeling guilty! You might have trouble taking a nap during the day, because you are "looking after the family." From now on, try to think of the nap as a refueling stop, so you can do an even better job! As untraditional as it is, start looking after yourself first....then you'll be in a better position to look after the others and (even more important) teach them to look after themselves!

[proverbs31woman]

Thanks, I'll try that but my family is sooo spoiled. My daughter asked me the other night if I had washed the red clothes because she needed a uniform for work. My reply was that the washing machine will work the same for her as it does for me.

It was such a blessing to find this board.

[Bernice]

Linda196,

You go girl! I like the way you handle yourself!

I have not quite learned to deal with things being out of place, BUT I'm learning and fast too! I figure unless life is suddenly breathed into items and they go legs they will be there when I am able to deal with them! Thank God I don't have any young ones here, BUT! This husband of mine makes up for at least three! Our bedroom He likes a clean place,BUT can't seem to bend his back to pick up our laundry pail and take to machine, he only washes HIS clothes, well I got plenty of undies and can out last him any ole day at this game, his is limited!

Bernice

[hoping]

Welcome to the board, you'll find lots of adopted family here.

Hard to do with the house.  I just learned I had to lower my cleaning standards.  My husband is home on disability also and there are days we don't get anything at all accomplished but a nap.  He has taken over the cooking, grocery shopping, and laundry most all of the time.  We have one 13 yr. old who also keeps us busy, but not like 3.  Mu house cleaning just goes by the wayside until I can't stand it anymore.  I will sometimes request help from church. 

The lawn went totally to weeds this year.  And my flower gardens got watered from rain only and I never got tomato plants in.  I can manage very little these days with neuro problems compounding the Sjogrens. 

Here's my take on your dilema: I don't like family expecting Mom to do it all.  Things change, and now it's time for a lesson.  It can't be the same anymore.  Period.  I'm serious.  Mom can only do so much with so little sleep.  (Suffer same as you on this)  Mom is in a lot of pain, remember when you had that injury back  when. . . well Mom's in that same kind of pain most all of the time without any breaks.  So she'd really appreciate your help.  Then set out what you'd like help with from each of your kids and hubby.  Give it a couple weeks and if none of it is working, go with Linda's plan.

Keep us posted.  Many of us share in this same dilema of a messy house or too much stuff to handle.  Stressors like this feed into emotional stress which feeds into physical chronic pain.  If they want you better, helping take some stress of you is the right way to go all the way around.


Karin

[KYMOM]

At 15 your daughter is old enough to help including doing her own laundry.  There is a great laundry aid called "Color Catchers" that when put into a load of laundry catch the dye floating around in the water and soak it up.  Last year when summer break started, after washing and folding all of the clothes for several days while the teens either a) slept in, b) played video games, c) watched tv, or d) texted their friends, I decided to show all of them how to use those great inventions called the washer and dryer.  Also, every Saturday morning for several years now everyone in the house pitches in and we do a thorough house cleaning.  Each person cleans and vacuums their own room and each person is assigned additional chores.  It only takes about 1 1/2 to 2 hours each week to completely clean the house.  The five year old is old enough to be given chores and for the two year old a spray bottle of water and a rag and you have an extra helper.

Explain to your husband and daughter that the comments hurt your feelings you would never think of laughing or making fun of someones physical ailments.  As for the mom-in-law look at her and politely say "thank you for reminding me, I did not have time today to look in the mirror and remind myself".

I am sure some of the more quick wited members of the forum will come up with other come backs.  You can keep a list and use them at will.  Just think of us when you say them and you will smile to yourself and hopefully not feel so down.  Good luck and keep your chin up.  Roxanne

[Bernice]

Girl tell that momma in law of yours when she say things like that 'Well your son loves it' and keep steppin'. The worst thing you can do is try to act humble, weak  or shocked when somebody is doggin you out, they sense blood! You don't always have to say anything you just need to learn the "now looka here"  or better known as the "I dare ya" look. It simply requires you to squint both eyes, one tighter than the other, curl your lip and for added affect, roll your eyes!  It works on husbands and children too!

Bernice

[Bucky]

Hi and welcome.  Here you will never be judged on how you look - who knows, you might have purple spiked hair, be 7 ft. tall, wear your 15 yr. olds clothes (yeah, right!).  You can come here in your jammies, with unbrushed hair or teeth (ewww . . lol), slippers on . . it doesn't matter.  You are welcome any way you are!!  

I agree with the other posts about enlisting help from your family.  A couple years ago I printed out a copy of the different family chores and who did them.  My hubby had two listed, son had two listed, I had 20!!!!  Hmmmm, something just didn't add up . . which is what I told them.   I guess they "let" me do the majority of the load because I DO it . . I have often thought of not doing anything (ahhh, doesn't that sound s-w-e-e-t??!!), but haven't gotten the nerve to do that yet.  

There is lots of information on this site, feel free to search for specific topics.

Take care,
Bucky

[beverly jane]

Welcome from a fellow Houston  sjoggy.  I would love to help you get others to understand, but I have no idea, other then slowly they usually start to get it. { only as much as they want to get though)  Why does it seem the people with out  illness seem to be lazy.  While we just keep on going.

[proverbs31woman]

Wow. Thanks for all of the encouragement. My husband has agreed to help me deep clean our master bath when he comes home from work and my 15 year old is going to vacuum. This forum has been a blessing in more ways than one. My husband was watching television last night while I was reading the stories on here and he saw me getting weepy eyed. He asked me what was wrong and I told him you know the point in the ugly duckling story when the baby swan found it's family, that's the way I am feeling reading this forum.

Normally my episodes last for a few days and then I'm up cooking, cleaning, disciplining and grocery making. But I haven't been able to shake this one for about the past three weeks.

[Scottietottie]

Hi proverbs 

Just wanted to add my welcome. I remember feeling so glad when I found this site too!

Take care - Scottie 

[Chickpea]

Hi Proverbs

It's great to meet you.  I have a feeling you're going to fit in really well with your new Sjoggie family! 

These are the things that affect our daily lives just as much as our symptoms, but other people don't get it.  Now I'm at home all the time I need to be somewhere with beauty and order, not surrounded by other people's clutter.  Try telling that to husband and three 'adult' children!  We tried the 'cleaning hour on Sunday morning' routine which worked pretty well for years, and now I find allocating individual tasks works well too.  The others have come up with some great solutions and it sounds as though you're well on the way to find your own too.

I got goosebumps when I read what you said about the Ugly Duckling.  We're definitely all swans here.

Thinking of you - Chickpea

[fluffiebunnie]

Welcome from me too..

I had the swollen glands at the start of all this.. they were so swollen for a couple of months that I didnt dare go out the house.. I wasnt joked about maliciously so cannot give you any tips on comments back to your mother in law - maybe you can tell her that they cause you pain so why does she find it funny?  

I have two teenagers 17 and 15 who do not know how the house stays clean, or how their clothes get washed ironed etc... I have given up trying to get them to help with the chores.  Maybe I should just start leaving their stuff where it is dropped like others have suggested... their rooms are left to themselves anyway which is why you cannot see the floor - I just close their doors    Occassionally they cook dinner after work/school.

Anyways, glad you found us - I agree .. nobody understand like the people on here.

[lynnmarie219]

Hi Proverbs!

Just jumping in here to add my hello and welcome you to Sjogrens World! I'm so glad that you feel that this Board has already helped you....its a wonderful feeling to know you are not alone and that there are others here who understand. Take the time you need to read all that you can/want to here and you will not only gain a lot of valuable information, but also support and friendship!


Welcome to the family!!

[Pisces24]

Oh gosh the laundry incident made me laugh!  This may date me but here is a "chuckle" story for you.

One the first real job I ever had at a restaurant, a gal I worked with was complaining long and loud about her mother making her do her own laundry. I asked her what type of washer/dryer she had. Of course they were electric. Then I told her she should come over to my house and do laundry. We had a wringer washer. I got to "enlighten" her on all the joys of washing with a wringer washer and how to hang stuff out on the line.  Gal had no clue and though everyone had the "luxuries" that she had. "Gee", she said. "I guess I really can't compain then."

It is normal to take stuff for granted but usually sooner or later folks wake up to reality. Avoidance only works for so long.