Need some emotional support - feeling like crap during the holidays!

General Support
1

As many of you know I've been having a rough year. Med merry-go-round, bronchitis, surgery, taking prednisone (ugh). Usually I just plow through and generally I cope pretty well.

Right now I'm feeling bad. I've pared down holiday stuff to be comfortable for me and my spouse and kids to handle without putting pressure on anyone. As a result our Winter Solstice / Christmas / New Year's is already *incredibly low key* with very few expectations. The kids already know we do less than everyone else they know (no big dinner or gathering or flying to see family, no holiday outtings to see parades / tree lighting / etc events in the community). It's usually just cozy and nice, and leaves time for spontaneous fun things that come up over the week.

Usually, though, I at least bake a few batches of cookies. This year I'm barely able to make dinner more than one night a week, much less make cookies. I feel like I'm really scraping the bottom of the barrel in terms of Holiday Magic for my family. I just don't want the kids to remember this year as the year the holidays sucked.

The prednisone makes it difficult to cope with the idea that I'm completely failing this year due to my uncontrolled disease.

2

Please, Marietta, you are not failing. You are not. You are doing the best that you can given the fact that you have this wretched disease. And wretched it is, especially when everybody else is playing happy families and looking like they are having fun.
You’ve probably told us, but I forget: how old are those young’uns of yours?

3

Thanks Seenie.

My kids are about-to-turn 13 and 16. So old enough to really get how big a toll my disease is having on us this year. THEY seem fine with it. It's me who's having the failure-a-thon feelings right now.

4

Yippee! They are old enough to be put in charge of fun. I don’t know your kids, but at that age, most of them will step up to the plate when presented with a challenge to make things fun for themselves and others. How about –



o a calendar – they alternately are responsible for planning and executing one fun thing a day (that doesn’t require Mom to get up and do a whole bunch of stuff

o give them a small budget for supplies – baking and cooking mixes, movie rentals, decorations, new seasonal music



o involving the parents of the kids’ friends … could you offer to have the gang over if the parent comes as well?



o hiring a “sitter”, not to mind the kids, but to facilitate having fun. Bake with them, do crafts or decorating, have a party etc. There will be a suitable senior student in your kids’ school or church, guaranteed. Just as one of the teachers (and they know you, because you volunteer there).



I’ll think about this and if I come up with any other hairbrained ideas, I’ll let you know. I think you could mastermind a memorable holiday if you think outside the box. And I’ll bet there are lots of people smarter with these things than I am who will come up with stuff too.

5

Ah, Marietta, I truly understand where you are with this! Starting with Thanksgiving, our house has always been a hotbed of frenetic energy and fun. For Thanksgiving I would make a huge, elaborate feast with everything you could possibly imagine. Everyone's favorites would be lovingly prepared from scratch. Lots of family members would come as well as friends we had that didn't have family in town. We would invite homeless strangers to come and have fellowship with us, offering the use of our shower if they wanted and anything else they needed. The day after Thanksgiving we would break out the Christmas decorations/lights/etc and put them all up with Christmas carols playing at top volume. We would dance around, singing at the top of our lungs, and I would start the Christmas baking. Between Thanksgiving and Christmas the kids and I would make 30 different kinds of cookies, pies, cakes, then freeze them. We would do crafts together - homemade wonderful things to give to our friends and neighbors. Then, just before Christmas, we'd get everything together and make huge platters of cookies, cakes, homemade things for the postman, the neighbors, the kid's teachers, the Sunday School teacher etc. etc. and deliver them while Christmas Caroling. We would Christmas Carol to local hospitals and nursing homes, delivering platters of goodies there too. Every possible gift the kids wanted would be meticulously wrapped with beautiful ribbons and bows...it just goes on and on.

This year, we went to Luby's for Thanksgiving dinner. The tree is up and somewhat decorated, but no lights outside, no other festive decorations. Christmas gifts are things I picked up at the Dollar Tree or could get for very little money online, and are wrapped in gift bags. There will be no holiday cookies, cakes, pies because I simply cannot do it all anymore. My oldest son is living 700 miles away with my parents, and my youngest is doing all he can to help me just get the basic minimum of housekeeping and cooking done.

You know what, though? Despite the vast difference between earlier years and this year, my kids are okay with it all. They don't WANT me to do more than I am because they know how much it hurts. They understand that our disposable income is severely limited because I can no longer work. Kids are incredibly resilient, and with some creative solutions, will have a potentially more meaningful holiday season than they ever have before BECAUSE it is so hard-won.

Instead of worrying about what we cannot do because of this horrific, life-altering disease, we need to focus on all of the gifts that we have in front of us. The fact that we have children is a small miracle in and of itself. The fact that those children are amazing, intelligent, creative people who are standing at our side battling right along with us is astounding. We conquer our own worst enemy every single day that we do NOT give into the self-defeating self talk that tells us we are failures, lousy parents, horrible spouses, wastes of time....We are NONE of those things. We are strong and amazing women, and we are kicking PsA's butt every single day. We are HEROES.

6

Marietta,

Most of us can relate to how you are feeling. I think Seenie and Sybil's comments were right on. I've been in a really bad place the last 6 months and I know it is depression that slowly wraps it fingers around my life and pulls me back. I think I have shaken it for now but know it is always there and you have to try and be strong. I bet your kids would love it if you just said, "hey guys, Mom is having a rough time, do you think you can make the cookies if I tell you how to mix the batter?" I bet they will jump at the chance, who cares if they don't turn out great, you will probably all be laughing and having a good time while doing it and they will probably feel really good about having helped Mom.

I know it's easier said than done but give yourself a break and try to laugh when you feel like crying. I'm still struggling with not being able to do the things I used to be able to do. We all do. I bet you will have a great holiday after all and don't try to compare what you are able to do with others. Please give us an update on how things are going and I hope you have a great Christmas.

7

Marietta,
We all have times when we feel useless, but we’re not…ever. Yes we have a crap disease, yes we have times we can’t do much, but when we are parents we will always be that, and that what our kids need, loving parents. The years that I’ve had a hard time at Christmas, I only do what I can, but I’m there for my kids to play board games, to sing with, to laugh with, to share love with.
Please don’t be hard on yourself, give yourself credit for being there for your kids, loving them despite all the pain and crap you’ve had this year x

8

Marietta - lots of love to you. Please be gentle with yourself.

I, too, have felt like not enough - not doing or being or giving enough - and it took a while for me to figure out what works to help me feel like I'm doing enough and like I am enough. I spend October doing little things here and there to make our long weekend in PA with the in-laws happen. I spend November doing little things here and there to make Advent and Christmas special for my family. My kids have expressed to me that they like our nightly Advent rituals much more than the frantic going here and there and baking, baking, baking that we did in previous years. It took me longer than then to come around to feeling good about slower and simpler, as I'm a do-er and a giver!

I totally agree with Seenie - get the teens in on the planning and the doing. Delight in their contributions. And most of all, be gentle with yourself!

9

Marietta, I know you are (as our friend Sybil would say) “feeling pants”. I love that expression, and I know the feeling only too well. Christmas, for all (or maybe because of,)the hype, is an incredibly hard time. And that is so for even the so-called normal families. If there is such a thing – and you know there isn’t – ‘cuz every family is dysfunctional it its own, unique, way. LOL
Keep it low key, toss the ball back into the kids’ court (yes, you will have to muster up the energy to do that much) and enjoy the fact that the kids are with you, and that they love you enough to say that they are “OK” with the low key Christmas. That is something that some other families would wish for!
One favour from you, if you would: let us know here how you are doing. OK?

10

dear Marietta

holidays are not about cleaning, cooking, running nuts shopping, etc...holidays are to stay together and be happy about it.

since your kids are at this amazing age when they can actually do something, make them do it. have a special holidays prepared by the kids. let them decorate the tree and the house, let them help cooking or just order some food and make new traditions. trust me, the kids are going to love it :) i did it with my kids. and of course don't forget the hubby. i am pretty sure he can help. and after the holidays, tell all of us here how fun was it :)

merry xmas Marietta :)

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hello was reading your post and all the replys for it great ideas as for me i 2 hate this diease so very much like we akk do and we all have our days .your children are at that age were they can help and if they are anything like mine and my 5 precious grandbabys who range from 3 to 10 they do understand what your going through i have 2 special Christmas traditions i have always did since my girls were born sugar cookie day with my mom and now it has gotten guite big but what a fun filled day it is laughing smiling baking Christmas songs playing in the back ground family doing something together nothing can compare to this day each and every year precious memories that we all hold close to our heart and which will be there for the rest of our lives the second one is the Christmas coat pins i started with my youngest daughter her first xmas the oldest pin is 32 years old my 2nd daughters is 30 years old i even have given my 5 grandbabys one each year .there are times i my self can not do this baking but watching and being there is all i need and what they need hope this has helped a little and always remember we are all strong woman and men we are amazing we have bad days just like people that don't have this terrible diease we are all human god bless you

12

I hear you Marietta. Or maybe I should say "I feel you". I am having some challenges this year as my Remicade seems to hiccup at times. I love all th responses to your post. Their are some great ideas in there. I came up with a few of my own low cost, low energy ideas.

My son is an only child so I suggest he invite over his best friend and they are doing cookies together. I picked up mixes and icing at Wallmart for very little money and even a splurge on decorations. They are like siblings chattering in the kitchen. I am emailing, then will have a shower and exercises.

I found a Christmas ornament that is a pickle. I put it on the tree and promised a prize for the first to find the pickle. My son is an only child and the prize was something special for him that I removed from his stacking presents and wrapped very simply but it was fun and no one noticed it is a table top artificial tree today.

We added a meal out and a movie to our usual activities (actually I subtracted a couple of activities that require too much energy from me this year) and we enjoyed the new activity very much. My husband dropped me out front of the movie saving me even more energy.

I asked my son to treat us to a "lecture" after dinner one night on his semester abroad. He loved it.

These are just some ideas I am trying this year. I am sorry the prednisone is messing with your emotions this year. Just remember that the most important part of the holiday is to find whatever joy you can in being together for it.

I will keep you in my thoughts and prayers.

13

Hi Marietta, wanted to tell you that my mother was ill through most of my childhood with heart problems that meant she couldn't always do stuff or even walk out the house, so in many ways she was physically restricted like we are with this sh*tty PsA. She died, age 43, just after my 18th birthday. And not then or since EVER, NOT ONCE have I thought anything about my childhood sucked because of her illness and your teenagers won't either.

As others have suggested, give them some ownership and responsibility for some of the seasonal activities whatever they are, it will make them feel great and that will make you feel great and bursting with pride at their achievements. Decorations don't have to cost lots of money ....... cut snowflakes from folded sheets of white paper, snip bits of greenery from the garden, put cloves into oranges and hang with ribbon or tie cinnamon sticks together. Let your teens imagination fly.

And finally please know that their love and the love we are all sending will get you through. xx

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No failure!
Last Chrismas I couldn’t walk! Meds didn’t work… Even the Depo injection, I begged the Dr. For, did little to relieve my symptoms. We got through. This year the tree isn’t decorated, yet. I did shopping online. Everything was delivered to my front door. I am in much better shape right now than last year but not pushing it. Look for fun and EASE in Christmas activities. Have the kids fix a thermos of cocoa, pop some popcorn, get blankets out and go for a car ride to look at lights. Car big enough? Invite a friend or two go with. Put holiday music on and DARE the kids to sing all the words correctly!
Ask them what ONE food item makes them feel like Christmas… Use your energy to prepare it. The rest? Give them a list, let them do the shopping and create the rest.
The tradition of being together, creating family bonds is what you want to accomplish. Let them suggest starting a new tradition. Family monopoly, playing cards, pictionary… Things you can do with them without taxing your abilities.
Kids are amazing when given the chance to take charge and will appreciate that you honor them enough to help you.
Goodluck to you and your family. You don’t have to victims of this condition … Be victors!
Merry Christmas!

15

Don't worry....you'll make those magic moments with your family. The cozy times can be the most memorable. At least you're not in a house full of people that you just never get a chance to talk to because you're too busy cooking. You can take time to smell the roses as they say.

If it's any consolation...I can't make cookies this year either. I've done it every year ever since I can remember but I don't think I can handle it this year. Maybe you could do something else special and simple for them...hot chocolate with marshmallows or get some treats they can put together themselves and you can have fun helping them.

I'm sure your kids understand.

16

There are some excellent books about raising children if you have a chronic disease or by children whose parents had a chronic disease. The not only give you some excellent incite to both sides but most tend to give you some tools to help with a bad situation.

You might even go to a family counseling to just make sure that your children are getting whatever basic need they need the most is being fulfilled. Especially as each child is different. Though i think what Sybil said is excellent point...what she really wanted and did not get.

As parents, you just do not know as most kids maybe not even realize themselves what they need the most now. Plus, it changes as they age.

I agree that having them know how much you love them and give as much love of course is very important. But i also will never forget the look on my nieces face even in High School when I would get very sick as she lost her dad at age 5. I really had to let her know i was not going to die even though it might look like it for right now....she seen me get through this before and i will again.

She still worries and now she has malaria herself and her husband has psoriatic arthritis...he is medical research and luckily has my life to point out to her...how i was still back packing my in my 40's when doctors said no way in my 20's and 30's!!

So read some books and you might see your own children in some of them. I also just consider the family counseling or maybe even just find a way to get all the children to feel safe and open up about their needs. Thing is, like i said, they may not know themselves plus they might want to 'take care of you'. Sure that is last thing you want them doing.

17

Thank you all for your outpouring of sympathy and suggestions. I knew I could count on this board as a safe place to lay it all out there!

Last night I slept all night for the first time in 2 weeks... I woke up feeling more positive. After my post last night I broke down (rare event) and talked to my husband about it, and he said he will bake some cookies with me this Saturday (he's good at doing the physical parts), and the kids want to decorate the tree on Saturday. I'm going to put Christmas music on "repeat" all day, to make the house seem more Christmasy. I also sat down yesterday evening and played some board games with my younger son, which we both enjoyed.

I think I'll focus on some small fun trips, like going out to a movie, or driving around to see the lights to make the magic as suggested. I also remembered that each year I have each of the kids make an ornament for the tree, so I will be visiting the craft store to find something easy to make on the way home from my dr. appt. tomorrow. I guess with my freak out I forgot some of the small easy things I usually do :) I'll focus on board games (something we like to do) with music going and hot chocolate.

Many of you had SUCH good ideas. Since I can only do a little, I'm only going to use a few of them :)

Thanks again for all your thoughts. It really helped to voice my fears and get some feedback.

18

Marietta, I’m so glad that the storm is past. Sometimes it takes a good melt down before we can get on with it.

Don’t worry about not using all (or any!) of the suggestions. The important part is that we care enough about each other to reach out. Besides, I had fun thinking of those things. I had a chance to remember my teaching days in middle school, and what wonderful people middle school kids are.

Big hugs, you can do it. And enjoy it!

Seenie

19

You are so right!!

Seenie said:

Marietta, I'm so glad that the storm is past. Sometimes it takes a good melt down before we can get on with it.
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I think most parents feel we don’t quite measure up at the holidays!!! There’s Always someone doing it bigger & better. I’ll tell you something I did several years ago that has helped a lot with the exspenses of Christmas. I told my kids that I told Santa to only bring them three gifts because that’s how many gifts Baby Jesus got on Christmas & if it was good enough for Baby Jesus then it was good enough for them. This brought some of the true meaning of Christmas back into our Holiday & This way when their rich friends were getting 1000$ Christmas’s & we could only do 100$ they didn’t feel cheated by Santa. We continued this tradition into their adulthood & my Daughter informed me they were continuing this tradition with her son. So All those years I felt guilty they felt it was a wonderful tradition!!! Three years ago on top of battling this horrible disease my Mom was diagnosed with cancer & we had to drive three hrs one way for her chemo & radiation. I felt horrible during those holidays & we made do, this year her cancer came bk so we are driving three hrs up & bk twice a week every other week for her treatments. So on Thanksgiving I said there was no way I could do it so we were going out to eat. My Wonderful Husband said he would do it all & my daughter said she would help. So my Mom had her biopsies done the day before Thanksgiving so we stayed in San Antonio where her Drs were that nite, when we got to my Sons house him & his wife had cooked a full Thanksgiving Dinner for us!! It was amazing, then the next morning we drove home & got here & my Husband had done the turkey & my Daughter had done All the sides!!! So you see given the chance I’m sure you’re kids would do the same for you!!! Christmas our tradition has always been to go to the movies & my kids could careless about all the other stuff, they get more enjoyment out of all of us pilling into the movies than weather or not we have a big feast so you could do something like that. You’re kids would probably love to do a dinner themselves if you let them!! It makes them feel like they are giving bk too!!! Start a new tradition & have a taco bar for Christmas, let them make tacos & set up a bar with different shredded cheeses, sour cream,avocados,tomatoes, onions, lettuce & salsa & it’s easy & inexpensive!! You’re kids will probably love it & it will make them feel needed!!!even if they act disappointed, I promise in the long run they will remember it & lov it!!! You know what??? I learned life isn’t always fair & they might as well learn that now! Christmas really is about love & family & Baby Jesus & we have made it so commercial tell them this year y’all are going on strike against all the commercial Christmas stuff & getting bk to the true meaning & that all your gifts have to be made for each other & have a birthday party for Baby Jesus & have cake & ice cream & that if y’all want to shop u do it for after Chritmas sales!! I hope one of these ideas help you out but most importantly the stress is making you sicker & you don’t need that so sit your kids down & talk to them & tell them the stress is killing you & these are some of their options & let them decide!!! I hope you start feeling better & I wish you a Merry Christmas one filled with lots of love & laughter!!! Keep us posted!!