It's that time of year, at least for me, when I slow life waaaaay down and enjoy lots of time with my family. My PsA, lately, has given me a MAJOR reminder of how important this is. We made a whirlwind trip to Pennsylvania (8ish hours away) for Thanksgiving - driving there starting at 2AM Thanksgiving morning and returning Sunday. By Monday night I couldn't move. Tuesday was supposed to be infusion day, but I couldn't get an appointment until Friday, so spent the rest of the week upping my prednisone and taking it easy. Even getting online was a challenge. My Remi was working so well, I kinda forgot how quickly things could go downhill, especially close to infusion time!
So my question is - during this usually very busy holiday time, what do you do to remind yourself to or help yourself to SLOW DOWN so that you can stay healthy (well, relatively, anyway) and enjoy the holiday season?
hello there I went to north carolinia the week of thanksgiving had the holiday with my 2 daughters 2 son in laws and beautiful grandbabys had a 14 hour drive down and then back a lot of pain but well worth the trip did crafts with the grandbabys and games with them all I got a lot of relaxing done which helped been fighting a real bad flare for about a month or more now But since I got back I have been taking it easy on myself I got a real surportive family all the way around I know the holidays can wear you down but just need to remind myself that listening to my body at this busy time of year is very important so I can enjoy my family .give me my lights tree family sugar day day with my mom and the whole clan young and old that is all I need family.hope this helped god bless
This is a great topic. I’d like to know what you all do to minimize or reduce flares at any time of year ; )
For the Holidays I try to…
Prioritize - pick the most important thing and focus on that (let the extras go) example: decorate a Christmas tree for the living room and forget about outdoor lights
Minimize - do one thing well and really enjoy the process, make it “your” signature event
example: host a drinks and appetizer party, not several events
Take the easy choice - examples: shop online instead of stores, use gift bags instead of wrapping, buy premade cookie dough to bake and decorate
Recharge - take a nap, listen to music, watch a holiday movie, schedule “downtime” into your day
Stick to your routine - take your meds, go to bed on time, don’t eat too much, exercise
Those are really great ideas lrcjvl. Simple but I can see how they would really work. I am going to write them in my notebook (it is labeled "My MInd" and goes everywhere with me!) Thank you. It is just the reminder I needed.
Yes! Ircjvl, those are GREAT ideas and I found that many of them I am already employing. I bought several box mixes of cookies...ONe of them is for ginger bread men...and I have the right cookie cutter for that. Much easier than making the mix from scratch...but no one would ever know. Tomorrow is a cookie exchange so my mix cookies and I will be there.
I let all of the decorating go this year. I may put the wreath on the door. That's easy enough. I don't have to worry about narrowing down invitations...since I don't have a single invite :( I must be very unpopular. I think the reason is we are far away from any family except my parents who live an hour away. We will celebrate Christmas Eve together. Other wise...I think people just assume that I'm not able to do anything or go anywhere and they don't include me on their invite list. (that's what I tell myself anyway)
Beginning last year, I"ve quit sending any cards...It's too hard for me to write in them...even to sign my name is hard.
I do all of my shopping online...I miss going to the stores...but maneuvering a wheelchair in a crowded store is IMPOSSIBLE...plus this time of year every available inch of floorspace in the stores is full of merchandise...even in the aisles The last time (holiday) I went shopping I literally had to get the clerks to move displays so I could get through. Talk about embarrassing. No more.
The idea of gift bags is a good one. I should make a trip to the dollar store to buy some. I make a mess of wrapping. :)
Yep I’ve already accepted that I now need to do things at my own pace, if people object to that then they can are not people I need around me anyway I’ve always done my own cooking but if I can buy pre prepared now I do. Christmas cake, pudding, mince pies, sausage rolls, even Yorkshire puds have all been bought these last couple of years. I have more time to enjoy the important parts of the season and way more energy to be able to.
Most of the prezzies have been bought online and gift bags are a life saver!
I’m working Christmas Eve and for the first year in a long time we are allowed to dress up…my elf bells will be jingling all day, so I will drive everyone potty!
I can just see you running dialysis with all your bells on! Too funny Louise. God bless you and all the other nurses keeping the ship afloat during the holidays the rest of us enjoy. In my 40 years in nursing I did my share of holidays but then transferred into Triage and only had to do the days before and after the actual holiday. I hope your shift is kind and peaceful (and no one de-bells you!) I do not miss them a bit.
I found this year I am only doing the things I enjoy and make the holidays special for us. I started cleaning and decorating prior to Thanksgiving and did one chore a day. It went so much better! I kept up a good diet, my pool exercises an rest. The things I usually start skimping on to get it all done. And we are only doing those activities which bring us joy. Speaking of which.....
Today I am joining in marriage Our Jane and her long time partner Ellen. They are both the kindest, nicest people you would ever want to meet. They have been joys as house guests in our little house in the mountains of Vermont. They brought gifts, are taking us to dinner and join in with all the cooking and other necessities. They even ask if anyone needs the bathroom before they shower! I had forgotten such gallantry still existed. One of the joys of this site has been the people I have been honored to call friends. So as you go about your Monday join me in prayer and thoughts that theirs may be a joyful and sustaining union in the journey of marriage. We all deserve to have someone who is always in our corner and that we learn to extend ourselves to be in theirs. My prayer would also be that someone assist my son as I assist them. Thanks guys you are the best and with your good wishes I know I can rise to the occasion and light their way even if it is just for a moment.
Our decorating this year includes our Advent calendar (hang on door and done!), our Christmas tree (made of Legos by my 13 year old, as two of us are allergic to real pine trees and it was fun to do!), our Nativity scene, and various Christmas decorations the kids have placed randomly throughout the house. I have the benefit of taking care of little kids who get into decorations, so we're usually pretty low key. We spend Christmas Day at my parents' house, where decorations abound! :)
This year Christmas Eve will include a visit to my 94 year old grandmother in the nursing home, baking one or two things for Christmas Day (my 11 year old daughter is the resident gluten-free baker, so she'll head up that project), and going to Christmas Eve worship, where my daughters and I sing in the choir. Then home for a late dinner (probably cranberry pork loin the crockpot - quick and easy!) and opening of one Christmas gift each, then bed.
Christmas Day is made simple with the unwrapping of our "Christmas Angel" gifts (we each make/buy a gift for one other family member whose name we draw on Thanksgiving night), my husband making a big breakfast, Christmas Day worship (again, singing in choir), and then lasagna and gift exchange at my parents' house. We'll probably visit my grandmother again before going home.
There's little to no cooking for me, which is a big help. No real running around. No one to entertain, unless friend stop by, and they're all more helpful than anything else.
Oh, and my Christmas card rule, starting last year, is that when I receive a Christmas card, I send one out to that person/family.
We also make a few "secret" deliveries in the days leading up to Christmas to families we know need a little extra help - my kids are an amazing help with this.
I think I just hijacked a thread! Forgive me Nym. I had to buy a new computer when mine died day before yesterday and I have forgotten my manners. Sorry Nym.
Qadosh2him As a design professional it makes me upset to hear that you will not shop because you can not get through the isles. You should never feel embarrassed to go shopping. You have rights that are being abused when they have filed the isles so that you can not get through. Never ask the clerk to move things for you. Ask for the Store Manager. Tell the store manager that you cannot get through the isle(s) and that you would like to get the Corporate contact information so that you can contact them to let them know they have a store not in compliance with the Department of Justice's Final Rule , 28 CFR Part 36/Nondiscrimination by Public Accommodation and in Commercial Facilities. Tell him that if you come back and find the store in the same condition you will contact the Department of Justice and file a complaint.
You have the same right as those who spend their lives in a wheelchairs or those who have no mobility issues. This is for everyone that has mobility issues even the person using a cane or no cane. If you let it slide then you are loosing your mobility even more, as well as those who will be traveling behind you. Take a stand for your mobility.
You can request a copy of the CFR Rule by contacting (800) ■■■■■■■■. They can be reviewed online as well.
You can also contact the Barrier Free Environments Inc. or National Institute on Disability and Rehabilitation Research (NIDRR). You can view most all the ADA Acts online.
Don't give up your rights! Your ability to Shop! Your Mobility!
So sorry to hear you are having such a rough time and that it hit you so fast. This happens to me and I have learned that I need to have activities that require me to sit and recline the achy places to keep from going pustular or suffering a migraine cluster.
I try to keep things like needlework or paper work in a handy area so that I am relaxing in my favorite spot, but still busy.( I hate not doing anything, it makes me more itchy/twitchy) I find I can do kitchen or office type work at rest if it as simple as peeling apples or frosting cookies. I always keep a puzzle book of some sort like crossword or word search, Sudoku. I catch up on my e-mails and write real letters, people are always amazed to get them!
Most of all...... I keep a picture of my grandchildren in view whenever possible to remind me that they are the reason I need to take good care of me.
There is great wisdom in the napping theory.. I used to be a childcare provider and I discovered that nap time was how I coped. I rested and caught up on documentation for the two hours (out of my twelve hour day) that the children where sleeping. When I retired I found out rather quickly that I needed that nap as much as they did!!! I force myself to sit down for at least one hour every afternoon. This strategy works best for me as I have not yet received any treatment other than Prednisone and NSAIDS. I am going to start on MTX on Wednesday this, and I am very excited to see how that turns out.
Thank you for the information in your comment. I've been frustrated every year around the holidays and many days in between as well by the clogged shopping aisles. Thank you so much for empowering me with this information. I've always felt helpless as I did not know what to do other than have them move the stuff. This will be very useful. I think I will print out that ruling and carry it with me in my purse... even Walmart has clothing racks so close to one another it is impossible in one of their scooters to get through...this makes only the products on the outside of the perimeter of the store, accessible. Again, other than anger, I had not other choice before I read your response....thank you again.
Not Understood said:
Qadosh2him As a design professional it makes me upset to hear that you will not shop because you can not get through the isles. You should never feel embarrassed to go shopping. You have rights that are being abused when they have filed the isles so that you can not get through. Never ask the clerk to move things for you. Ask for the Store Manager. Tell the store manager that you cannot get through the isle(s) and that you would like to get the Corporate contact information so that you can contact them to let them know they have a store not in compliance with the Department of Justice's Final Rule , 28 CFR Part 36/Nondiscrimination by Public Accommodation and in Commercial Facilities. Tell him that if you come back and find the store in the same condition you will contact the Department of Justice and file a complaint.
You have the same right as those who spend their lives in a wheelchairs or those who have no mobility issues. This is for everyone that has mobility issues even the person using a cane or no cane. If you let it slide then you are loosing your mobility even more, as well as those who will be traveling behind you. Take a stand for your mobility.
You can request a copy of the CFR Rule by contacting (800) 872-2253. They can be reviewed online as well.
You can also contact the Barrier Free Environments Inc. or National Institute on Disability and Rehabilitation Research (NIDRR). You can view most all the ADA Acts online.
Don't give up your rights! Your ability to Shop! Your Mobility!
Ah Michael, working Christmas Eve is one of the joys of working, I simply love it and was so disappointed I missed it last year as I was off long term sick…As long as I’ve got myself organised, I’m ready for the fray…I will be posting pictures
michael in vermont said:
I can just see you running dialysis with all your bells on! Too funny Louise. God bless you and all the other nurses keeping the ship afloat during the holidays the rest of us enjoy. In my 40 years in nursing I did my share of holidays but then transferred into Triage and only had to do the days before and after the actual holiday. I hope your shift is kind and peaceful (and no one de-bells you!) I do not miss them a bit.
I found this year I am only doing the things I enjoy and make the holidays special for us. I started cleaning and decorating prior to Thanksgiving and did one chore a day. It went so much better! I kept up a good diet, my pool exercises an rest. The things I usually start skimping on to get it all done. And we are only doing those activities which bring us joy. Speaking of which…
Today I am joining in marriage Our Jane and her long time partner Ellen. They are both the kindest, nicest people you would ever want to meet. They have been joys as house guests in our little house in the mountains of Vermont. They brought gifts, are taking us to dinner and join in with all the cooking and other necessities. They even ask if anyone needs the bathroom before they shower! I had forgotten such gallantry still existed. One of the joys of this site has been the people I have been honored to call friends. So as you go about your Monday join me in prayer and thoughts that theirs may be a joyful and sustaining union in the journey of marriage. We all deserve to have someone who is always in our corner and that we learn to extend ourselves to be in theirs. My prayer would also be that someone assist my son as I assist them. Thanks guys you are the best and with your good wishes I know I can rise to the occasion and light their way even if it is just for a moment.
I KNEW I had seen a discussion on surviving the holidays, but couldn't find it when I went to post! Here are the things I do to survive it well.
Decorating:
The New Tree: I got a new artificial tree. Its a low profile tree with pre-strung lights. It's tall and narrow with a small footprint and its lightweight. I got it at Wal-Mart and paid $40 for it. I got the kids to put it up...it's super easy to do, and then I hung the garland. I sat in the recliner and instructed the rest of the decorating.
Simplify the decor: I have a few things that I put out; a few ceramic houses, the ceramic tree, and then some simple, pre-lit garland with bows on the outside of the house and a wreath. I also found some artificial poinsettias to put out on the steps. I limit my decorations to only where I can reach without a ladder or step stool. If it requires climbing, then it's not for me. Everything is organized so each box goes to a particular area and its very easy to manage getting it out and putting it away. I make sure that everything gets back into the right container and that each one is not too heavy, even if I am just conducting the activities from my recliner!
It literally took me 2 hours total over the last weekend to decorate, and I felt accomplished, not beaten up afterward. In past years, I changed out the china, and it looked like Christmas up-chucked in the living room and needed a day to recover. This is so much easier on me and I think it looks a little nicer too.
Food:
Cheat. For Thanksgiving, we got one of those pre-made meals from the grocery store, and then spiced it up. For the mashed potatoes, I added seasonings, sour cream and real butter, the sweet potatoes got my candied pecan topping, The stuffing got sausage and seasonings. We made our own veggies and gravy. Pies from one of the upper scale grocery stores or organic markets are great and as good as anything I would make. I spent maybe an hour on the food and was able to relax the rest of the day. Of course it wasn't as wonderful as a meal that I had slaved all day preparing would have been, but it was quite tasty and it was easy to do. If I were hosting Christmas, I would be doing the same thing.
Gifts:
This is something to keep in mind for next year. I start Christmas shopping in October. I have several memberships to shopping sites and they send me noticed by email of their deals. I shop this way and I don't have to go out and fight the crowds or traffic. For gifts that I will be hand-delivering I pay for gift wrapping or use gift bags. For gifts that need to be shipped, I try to get gift wrapping and delivery directly to the recipient. In the odd case that I have to ship something, I do it from home using the USPS website. All I need to do is pack it, apply postage and schedule a pick up. Its very easy. If you haven't done any shopping, Amazon can save you. They are still guaranteeing delivery by Christmas, and the shipping isn't too bad. Their gift wrap is very basic, but it saves you from having to do it. Another way to get by it to go the gift card route. All of your shopping done in 2 hours or less. If you have a club store membership, you can get deals on gift cards if you buy them in bulk. You can also pick up a box of assorted holiday cards to send them in. Include a nice hand written note, or your family newsletter, or a photo to make it more personal.
You didn't hijack - I was inviting conversation! No need to apologize! :)
michael in vermont said:
I think I just hijacked a thread! Forgive me Nym. I had to buy a new computer when mine died day before yesterday and I have forgotten my manners. Sorry Nym.
I usually shop for Christmas year round, picking up things I think people will enjoy and putting them aside until Christmas. This year has been such a rollercoaster that my normal thrift-shopping a couple times a week life went by the wayside, so we decided to gift our favorite things. My contribution is organic coconut lip balm ordered from a co-op. Some of my kids are making things. The only "work" I have to do is to hold the stockings open while the kids fill them and make sure they put things in in an order that won't squish the squishables. ;)
I felt like a hijacker! Just call me Bandita from now on. Your tree looks great, but I would stub my toe on it. It's the curse of the Lego. If there is one in the house, my toe WILL find it! :-P
LOL Don't come to my house, then ... the upstairs (kids' bedrooms) are riddled with the little ones and there are Duplos in the living room! My 13 year old crafted our tree, which most definitely is not sitting on the floor.
