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Sjogrens Topics => Living With Sjogren's => Topic started by: Wicked angel on February 29, 2012, 08:37:34 PM

Title: Venting Sorry
Post by: Wicked angel on February 29, 2012, 08:37:34 PM
I am sorry but I know yall understand. I'm just sooooooo tired. Tired of being sick, tired of being tired. My husband is gone staying with his grandmother to take care of her while I have our kids to cook, clean, drive around and basically raise. I understand he needs to care for her but sometimes I'm like what about me. All my kids had the flu in a two week timeframe. Two of them had bronchitis. By the time I was able to see my doc I had pneumonia. Not once did anyone step in to help. I guess I'm just frustrated cause I feel as if as I get worse what will happen to our kids. I used to be the mom who worked a full time job, bake, throw parties, go to all assemblies and all appts. Now I'm happy when I could go see a friend without falling asleep or being too sore to move. We live in a small town so resources are limited. Thanks for letting me vent. There is more but I forgot it.
Title: Re: Venting Sorry
Post by: CathyO on February 29, 2012, 09:40:27 PM
Uggh sorry I can understand. THis is the best place to come and vent! My husband worked out of town, about 8 hours driving, away from me and the kids for about a year. That was hard for me to be the single mom, work, commute, drop kids off. I'd come home and eat frozen foods and go to bed early. He would come home on the weekends and fly. I'd just miss him so much. The kids are older, they're easier, less maintenance, 14 and 8 then, so I could drive to the store. The kids were understanding and would snuggle up with me and watch TV. We wouldn't go out and do alot I just didn't have the energy.
Title: Re: Venting Sorry
Post by: Piebird on February 29, 2012, 11:49:44 PM
I got all the same troubles here. It is hard to adjust to this new life. I feel exhausted and it is noting that sleep fixes.
Title: Re: Venting Sorry
Post by: Seeker on March 01, 2012, 02:46:18 AM
Howdy angel, go ahead and vent away.  As President Clinton once said, "we feel your pain".   That's one of the great things about our forum,  we all go through those times where we need to vent.  It's comforting to know that you will always have sympathetic ear here, waiting to listen and understand.  So vent away.

Seeker
Title: Re: Venting Sorry
Post by: Duchess on March 01, 2012, 06:29:48 AM
Angel,

We hear you loud and clear.

Sometimes we just need for someone to listen.

Duchess
Title: Re: Venting Sorry
Post by: Madison Granny on March 01, 2012, 07:56:16 AM
Go ahead and vent away we all done it here at one time or another.  I don't really know how you feel but I do in part.  My husband works away from home.  He's a truck driver.  When our son was small he was gone a week at a time.  It was really hard to get through.  Now that our son is grown, my husband had to transfer to another state to work.  It's hard enough for me with SJS to look after my self.  I know it would be a lot harder to look after children too.  Hope things get better.
Title: Re: Venting Sorry
Post by: SjoDry on March 01, 2012, 09:06:49 AM
Oh Angel...I totally understand..my most recent meltdown was last week.
It is hard to keep plugging along feeling like we do all of the time. I find myself just wishing
for even the slightest escape from all of it so I can get re-energized to keep dealing with it.
Unfortunately this illness takes about as many vacations as I do.

You are among friends who REALLY understand and sympathize with you.

Hope your on the way to some better moments :-D

Sandy
Title: Re: Venting Sorry
Post by: meow on March 01, 2012, 09:21:33 AM
Oh, boy. I think we all understand , we have all been right where you are.

One day at a time is the rule, but when I am feeling really terrible I have to have a routine that rarely varies. PLAN my time on the couch gathering more energy (5-5:30). When I cook, I make double and freeze half, so when a flare hits, I don't have to cook, just microwave. Thursday is take-out (better yet, delivery)  night.  Kids separate the laundry and line up the baskets at the washer. Load the coffee machine at night. No computer stuff after dinner. TV off at 10.

Then I plod through the quicksand, and wait for it to get a little less deep, one day at a time. Having a strong routine is my lifeline.
YMMV
Title: Re: Venting Sorry
Post by: Wicked angel on March 02, 2012, 02:07:48 PM
Thank you all. I do love having others understand without having to explain once again. I tell people who ask that basically I have a disease that I am my own worst enemy I'm kicking my own butt. Thats why I'm always so tired I'm constantly fighting. Most people just nod and leave it alone. Again thank you all for being here
Title: Re: Venting Sorry
Post by: susanep on March 02, 2012, 03:39:27 PM
Yes we do understand. Vent away. I sometimes think how strange my own body is destroying me.

susanep
Title: Re: Venting Sorry
Post by: CathyO on March 02, 2012, 04:38:38 PM
Yep, we can't do the same as before, so cut out stuff, keep the good stuff like hugs and kisses for the kids!
Title: Re: Venting Sorry
Post by: slccom on March 02, 2012, 05:26:22 PM
I'm sorry you are having such a hard time. Unfortunately, most of us are guilty of not asking for help when we need it. I have found that people are most willing to pitch in if asked for a specific thing, and not too often. Asking other parents to drive your kids. Asking a neighbor to cook extra food (that you buy) for you and let you freeze some and eat some. Teach the kids to do their own laundry, or some of the things they need to do. Teach them to bake.

When my husband got disabled by chronic fatigue syndrome 19 years ago, we learned to celebrate what we did accomplish rather than fret about everything that we still needed to do. There is a movie, "I remember me" about CFS that might be good to see.

You can't be the perfect mom any more. Count your spoons, allocate them carefully.  And know that you'll be needing to mourn the old you, probably over and over. But even the life you live now can still be good, and really good for your children. They will learn so much more and be really self-sufficient as adults because you MUST teach them to run a household.

Hang in there -- better days are ahead.
Hugs, Sharon
Title: Re: Venting Sorry
Post by: meow on March 05, 2012, 01:33:52 PM
You can still be the perfect mom. You just have to give up being the perfect housekeeper. They are often confused for each other, but are actually not related.

;D
Title: Re: Venting Sorry
Post by: MissyLouWho? on March 05, 2012, 04:53:01 PM
How old are your 6 kids?  Mine are 4, 9 and 10 (all girls  :)) and they are more than happy to help with laundry, dishes and other stuff.   Even scrubbing the tub  :o! Like slccom said, they will learn independence and they'll be happier that they can help you.  My kids will fight me often about helping, but it helps to let them choose what they want to do.  I give them a list of what needs to be done and they pick what they want to do.  Whatever they choose is still a help to me  ;)

I hope this helps some!  I used to be super mom and now feel like pooper-mom.  No energy for anything fun, not part of PTA in school, don't work anymore, don't want to be fun.  The not being fun anymore hurts me more than anything.  I once heard one of my girls say to the other "Mom's no fun anymore.  All she does is sleep"  :-[ :'(
Title: Re: Venting Sorry
Post by: Joe S. on March 06, 2012, 02:09:41 AM
Feel free to vent any time. If you have not read it yet try reading "spoon theory". It may also be helpful for your family. http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

My oldest girl has fibro, and my youngest has UC. It hurts to know that they are going through the challenges of AI while raising their hyperactive boys.