With Fibromyalgia and other chronic pain you can’t always do everything you want, and we will always be limited in what we can do, but there is always something you can do instead – always an alternative.
While you may not be able to go to the amusement park with your friends/ family because the rides will hurt too much or because you can’t be on your feet all day or maybe it’s an all day thing that you can’t do or for whatever other reason, there are other things you can you. Maybe you can go mini-golfing with friends instead. Still a social activity, still something physical, still something fun and still hanging out with your friends. If that’s still outside of your wheelhouse, try just going out for a drink even just coffee to get out and be with those you love. If you are bedridden, why not a virtual chat?
You can apply this to all other aspects of your life. Certain things you can not do and may never be able to do again, but there are always things you can do.
I’m sure you noticed that the girl in the story has the medical condition Lupus. While obviously not the same medical condition a lot of what she says – No, most – No, all of what she said still applies to anyone with a chronic medical condition.
With fibromyalgia and my other chronic pain conditions I also deal with the daily grind of the limits put on me by my medical conditions. Like Christine, the author, I have a limited amount of energy that I can use each day. Some days I start with more energy, more spoons. Some days I start with less energy, less spoons.
I hope this gives you a new understanding about what it is like to live with chronic pain and chronic illnesses like ours.
My next post is about The Matchbox Theory which I think is actually a little more apt.
Christmas is a funny time. I am a big fan of Christmas: the decorations, the gift giving, the food, the comradery, the joy, the love, the good-will. But I’ve also experienced the inverse at Christmas: the sadness, the lack of motivation, the sence of obligation, the loneliness, the isolation, the soal crushing depression.
I can & do get depressed just as everything starts & it can take a while to get into the holiday groove. This year, as always, I start wearing Sanata hats on December to “fake it til I make it.” But, I’d started getting into the holiday mindset by the beginning of the month – I was already in the Christmas mentality by December 3rd.
Santa Hat starts December 1st, every year.
THIS YEAR IS A GOOD YEAR!!
The Tree & Decorations:
The girls came over on December 11 to decorate the big tree with me. Doing the while thing is overwhelming. Plus it’s been a reoccurring tradition for most of the last 20 years. It is a 6½ ft spruce tree that goes upstairs in Mom & Dad’s big front window so it can be seen from outside.
The nativity screen they choose was the small set my Grandmother made. Next year they want to set out their Grandma’s set, the set I grew up having While similar to my grandmother’s set, their Grandma’s, Mom’s, set is significantly extensive. It has, possibly, 3x the number of pieces I have and would take up the entire self as oppose to the 8″x12″ manager I use.
The stockings are hanging off the heavy stocking hangers near the Nativity scene, on the same shelf. There are three, for stockings for Mom, Dad & I.
MY Tree & Decorations:
Several years ago, I got a dollar store 8″ tree. I put a bit of tinsel ribbon on it & a doz small ornaments. I’ve since raised the small ornaments & will be donating that tree off. Two years ago, I bought a 18″ tinsel tree with a single strand of lights &’some small shiny ornaments. I’ve been using that in my space for the last few years.
This year, I just purchased a proper artificial 3 foot pine tree. While it was prelit, I added a second strand of coloured lights & might add another strand next year. I ransacked the 2 above trees & relocated their ornaments. I also pilfered some of the ornaments from the big tree, ones that are personal to me
I bought a topper from Dollarama, painted it & it looks not too shabby. I also started painting some of those dollars store ornaments, but I’m not doing them all cuz I don’t like them all. Gerry, my bestie, is 3D-printing some specific ornaments for me to paint. They may not be done until after Christmas. But they will be awesome for next year.
I have my small Precious Moments Nativity scene on the table under my tree. I have a single stocking holder that’s I’ve had for years with a single stocking hanging from it. There are several Christmas plushies across the apartment. And I finally plugged in my laptop’s usb decorations.
I didn’t pull out Father Christmas this year for two reasons. Firstly, I couldn’t find him for the first two weeks of December. Secondly, I realized he doesn’t match anything in my home now. The pastel coloured robs just don’t work anymore with my colours. They almost clash, so I left him there for this year tho I should make sure his head is attached.
Gifts:
I’ve gotten most of my shopping done. As per usual, I’ve overspent. But at this point, I only need to pick up Lilly’s cookies.
I still need to put the cookie factory into high gear. Got 2-3 recipes from scratch this year including some gluten free options.. Thinking of Nanaimo bars for Christmas if I can.
Kellis Cookie Factory is Open
I’ve already sent or dropped cookies out to Megan/Evan, Lindsay/Aaron, Declan, Jenn/Chris & Dale. On the 23rd we have the family dinner and thus need the cookies for all the nieces, nephews and their partners.. This means 4 lg bundles & 4 smaller bundles . One of each needs to have gluten free. Beyond that, I have 2-3 larger packs and 5-6 small packs.
I *may* need to go over to Dollarama for a pack of licorice for my mom, for her stocking cuz, well, I ate it.. lol
Food:
Besides the dozens and dozens of dozens of cookies I will bake?
Besides the NINE different type of cookies I expect to bake (or non-bake)?
Besides the Yummy Nanaimo Bars I’ve been craving for weeks that I’m hoping to make for Christmas? 2 kinds!
Family Christmas dinner:
I am responsible for the vegetables. I have bought some flash Frozen vegetables: green beans, corn, brocoli & turnip. I’m hoping I can borrow my sister’s steamer for the first three & mom can help with the later, since she’s the only one who consistently eats it.
I think, since no one has said anything for buns for Christmas, that I’ll probably have to make my cheese buns. *Eyeroll*
Christmas Morning:
I am at my sister’s for Christmas morning/brunch, while I haven’t been asked to bring anything, I grabbed 2 packs of large cinnamon rolls. My dad also picked up bacon for me.
Back Bacon, Bacon & Pillsbury Cinnamon Rolls
Christmas Dinner:
I’ve been asked to bring dessert.. I grabbed 2 pieces & an apple crisp/apple crumble.. picked up icecream everyone else can eat & the ice cream I can eat .
My Friends
On top of everything else, I have social activities.. Sometimes dinner, Sometimes a quick chat or a coffee, Sometimes a hike, Sometimes hanging out at home (theirs or yours), Sometimes living it up! Hanging out with family, biological or choosen is always fun.
So I have been waiting quite some time for counseling services in my area. Almost 2 weeks ago I called Durham Family services to inquire as to my position on the waitlist. I received a call last Monday from Jason and the intake of Durham Family Services. But apparently there was a bit of a miscommunication. He wasn’t calling to let me know where I stood on the waitlist as per my request, he called to let me know I was at the top of the wait list and to get me set up with counseling.
Yay!
Finally getting a councillor with DFS!
So he was going to set me up with a counselor and I mentioned I would appreciate seeing the counselor I saw a previously. Unfortunately she had a full case load and to add to her caseload they have to get consent specifically from her. Unfortunately she was on vacation all last week so they couldn’t reach her until early this week.
I was called on Wednesday and was advised that the counselor I wanted to see had agreed to add me to her caseload..
Yay!
So, after 13 months of waiting I now have my first appointment set up for late January – only 14 months after first requesting counseling. Oi.
Better late than never
I’m just glad I have an appointment scheduled and it’s with a counselor that I’ve already built a connection with..
Then I have to wait for Catholic Family Services and Carea.. Hopefully they are timed to fit from one to the next to the next! I’d like to get my issues completely dealt with.
Personally, for me, Christmas is probably the busiest time of year. Plus with personal issues that I’ve been having with different relationships, I haven’t been able to focus here very much.. so my apologies for not posting… Again…
Just to give you an idea. Monday was dinner out with a friend I haven’t seen in a coons ahe. Tuesday I have errands all afternoon & a cub planning meeting in the evening.. Wednesday is the Cub year end meeting, a social gathering & baking both before & after those. Thutsday I have to organize the baking, getting some ready for me to post as well as for friends this weekend. In the evening, I’m off to my sister’s for hair & a walk with the dogs. Friday, weather permitting, I’m getting the headlight fixed then I’m heading out for a social event with out-of-town friends I have not seen since Labour Day. Saturday is a coffee date (Whoo hoo!!) Sunday is soccer.. I still need to do groceries: normal groceries, Christmas dinner groceries, cookie baking groceries.. then, more baking as our family Christmas is on the 23rd.. plus wrapping presents for Mom, Dad, Sister & her family & a friend who I exchange with for more than just cookies..
So, yeah . Busy….
And I’m probably missing stuff in the schedule..
Plus I need to fit in exercise, a hot tub or two or 6, plus other personal self care & put up my second tree.. & make some ornaments..
It’s the most wonderful time of the year, but pain. And fatigue. And holiday burnout. Follow these tips to celebrate the holidays the way that feels best for you.
Based on an original article posted Here, written by Courtney Smith
Does the Christmas season tend to leave you feeling overwhelmed and both physically or emotionally exhausted? There’s a word for that, and it’s called holiday burnout.
The holidays are supposed to be a time for joy, celebration, and reconnecting with loved ones. For others, it can evoke a range of uncomfortable feelings. And sometimes even if you are a Christmas person it can sometimes be too much.
What Is Holiday Burnout?
Holiday burnout is a term referring to the overwhelming emotional feeling one feels from expectations and pressures during the holiday season. It can be influenced by multiple factors – from adjustments in daily schedules, family or interpersonal conflicts, familiar and friendship expectations, even mental health concerns and more.. For those living with chronic illnesses such as arthritis, fibromyalgia, HIV/AIDS, & MS, the pressure to keep up can feel even more overwhelming.
In an attempt to create memories and maintain traditions and customs, one may ignore their mental health or one may even feel their mental well-being is ignored by others during this time of year. This can cause the holiday season to be more stressful than joyful.
Common Symptoms
You could be exhibiting signs of holiday burnout if you feel any of the following symptoms:
Irritability
Feeling overwhelmed or anxious
Prolonged stress
Losing interest in things
Lack of motivation to do even the fun things
Feeling drained after socializing
Difficulty sleeping or oversleeping
Procrastination of Christmas traditions one usually gets joy from
A disrupted digestive system
Frustration due to the holiday chores or activities
Manage Holiday Burnout When Living With Chronic Illness
1. Make plans in advance
Before committing to any social events or responsibilities during the holidays, be sure to plan ahead and make sure you want to attend the event. Don’t overbook. Whether it’s a party, cooking a large meal, or preparing gifts for family and friends, check to see what feels best for you and your body and plan accordingly. Consider creating a schedule with small and large tasks spaced out to prevent being overwhelmed, exhausted and other detrimental feelings.
Remember, what sounds fun in the moment may not feel manageable in a few weeks’ time.
2. Prioritize self-care
Self-care is essential for all aspects of ones mental and physical well-being, but with all the holiday hoopla, I can gets lost. In the midst of familial obligations, gift-buying, and holiday traveling, it can be easy to lose your sense of well-being resulting in feeling of burnout.
Prioritizing self-care during the holiday season doesn’t have to be glamorous or expensive. It’s all about maintaining your healthy routine with respect to your chronic health condition.
Practicing self-care can be as simple as:
Light physical activity like yoga or walking
Stay hydrated
Listen to your body.
Read a book
Talk with a friend
Colour, paint, draw, crafting
Write in your journal
Listen to music
Brush your teeth
Shower
Eat healthy, nutrient-dense meals
Maintain your sleep schedule
Pace yourself & take breaks
3. Set boundaries
With expectations from gift-giving to expected attendance at events with travel time, it can feel uncomfortable to say no to friends & family.
If saying yes makes you feel anxious or overwhelmed, or puts your health at risk, you can say no. Setting and enforcing personal boundaries is a health form of self care. Give yourself permission to say no is empowering. Being mindful of your mental and physical capabilities safeguards your health, avoids feelings of holiday burnout, and allows you to choose to spend the holidays in the way that feels best for you. Rather than pleasing everyone and overcommitting yourself, learn to say a polite no this holiday season.
4. Keep track of your medications
With everything that could be on your plate, it could be very easy to lose track of time and stay on top of the medications you take to manage your chronic illness. To avoid any lapses in care, and ward off feelings of holiday burnout, try setting medication reminders on your digital devices (phone / smartwatch).
Pill organizers can be very helpful as it sets out your medications for each day so they won’t be forgotten. Some pharmacies will provide this service free of charge.
5. Enjoy yourself!!!
With all this talk of burnout and all that could go wrong, remember that the holidays are supposed to be a time of fun for everyone. Don’t forget to have some!
Whether it’s watching your favourite holiday film, cooking a nostalgic dish, or driving around to look at lights, choose to celebrate the holidays with special activities that are just for you and give yourself a break from all other distractions and pressures.
How Do I Avoid Christmas Burn Out?
Try to start shopping early. On year I started on Boxing day.
Cheat with my baking. I make several different types of cookies each year, but mixing up that many different types can be a little much. Some of my dough is premade. Some of my dough, I will premake & freeze.
Organize gifts. But either the same item or purchase from the same store. One year I bought hoodies for my sister’s family all from the same animal rescue. This year I’m going to an outlet store with the plan to get everyone’s gifts.
Drop certain activities. Sometimes doing Christmas cards just feels too much, so I will either limit cards to a special few or even drop them completely..
Go to the gym. Not necessarily to workout. Sometimes I just got for a hot tub to relax.
Extra self care. Despite how much I enjoy the holiday season, I do tend to stress out. So I make sure I get some extra self-care in and keep an eye on my mental health.
There is something that healthy people don’t realize about those dealing with chronic pain. That is the unrelenting exhaustion that occurs when dealing with and fighting chronic pain. This exhaustion severely exacerbates energy levels so sometimes we can’t do everything in one shot. Laundry is an excellent example of this.
When doing laundry, most people will throw stuff in the wash. When the cycle is done they will throw the clothes from the wash to the dryer and throw in another wash another load to wash. When the dryer is done it will take out the clothes into a laundry basket, fold them, then put them away. Then they repeat as needed.
There’s no way I could do all that. Not with the other things I need to get done in a day. So for me, laundry is a multi-step process.
1. Organizing clothing.
While this is frequently merged with the next step, it isn’t always. If I have a full hamper of clothing, I have to take it all out and separate it into different loads including a gentle load, potentially a white load bleach and then splitting up the colors into two balanced loads. Just the weight of picking up putting down and moving around clothes especially if there’s something heavy like towels, that can get pretty tired and pretty fast.
2. Washing.
From here, I have to get the clothing from the laundry hamper in my bedroom to the laundry room. Fortunately for me my laundry is on the same floor as my bed room. But carrying that much weight and then starting the cycle and making sure all the clothes are in and balanced. Well healthy people don’t think twice about this again it gets really tiring really fast.
3. Drying clothes.
I have a stacked washer dryer so picking up heavy wet clothing from the washing machine and pulling it up above head level into the dryer takes quite a bit of effort. Again most people don’t think twice about something like this. After getting everything in the dryer, making sure all the laundry balls (because I don’t use dryer sheets) are evenly distributed through the load because half the time I forget to do that ahead of time. So this means moving around all these heavy wet clothes, again. Now sometimes it’s a gentle load and that requires me to take things out move them across to the other side of the laundry area and it’s a pretty big space considering, and hang each item up carefully on the drying rack. Fortunately, gentle loads are rarely a big load and lighter in the summer than in the winter.
4. Emptying the dryer.
I can put a laundry basket on top of the washing machine and carefully drag clothing out of the dryer into the laundry basket. This is not the difficult part. The difficult part is bringing it out to the living room which is where I tend to fold my clothes. While they are no longer wet, they still tend to be heavy and I have to carry that from one side of the apartment to the other. Most people don’t think that’s a long distance but when you’re carrying that much weight and yes for someone on chronic pain that’s a lot of weight, that far it can be painful and exhausting. Then if I also have to grab the dry gentle clothing it’s on the drying rack on my way by that makes the basket even heavier.
5. Folding clothes.
I tend to procrastinate, I will admit that so this is partly a problem of my own making. As a result by the time I get around to folding my clothes, I usually have a couple of full baskets of clean laundry. Fortunately I have very little that actually wrinkles. I tend to take my time and organize the clothing as I’m folding it, while I’m watching TV. Watching TV while I’m folding is it good distraction so I don’t notice the pain or the fatigue as much. I will agree that lifting one item at a time and folding it and putting it down it’s not that big of a deal but doing that process over and over and over again for an hour or two, takes its toll. Yes it takes me that long to fold my laundry.
6. PuttingAway.
As I fold, I tend to organize everything. T-shirts that go to the dresser together, pants that get hung, go together, hoodies go together, socks in one pile, undergarments in another, and pj’s all together. It makes it easier, but those baskets must also be brought back to the bedroom and the weight can be excessively heavy as I move basket after basket. But again I procrastinate until I’m actually looking in the clothing for specific items.
The issue with putting things away isn’t so much the stuff that goes into drawers, but the stuff that gets hung. I have a walk in closet & most of my clothing hangs from a rod just above my own height. Jean are the worst, not only do I have to get them on a pant hanger correctly, they are also heavier than most of my other clothing & the weight hangs long making it more difficult to maneuver. Especially if I have several pairs of pants, I may not be able to empty all the baskets cuz lifting clothing above my head stresses my arms & back exacerbating the exhaustion of the activity.
Conclusion.
So, not only do I have to do this in steps, resting between, this process can take a few days to work through because the pain and exhaustion severely limits the amount of energy one has.
I went on a bit of a downwards slide on the weekend before Halloween. Found out my ex has a promise ring from his new girl. He proceeds to show it to me, tells me what it is, and realizing his stupidity says, “it’s not what you think it means”. Well it may not mean much to him, but I’m sure it does to her.
She also has to have ordered it while he & I were still together. Not impressed.
Spent the next week either busy af, or just feeling everything. No middle ground. Either complete distraction or completely emotional. No stability.
Slowly been trying to work through my emotions about the end of that relationship this last week.. Ups and down, but they are becoming a little less of a roller coaster. Even small improvement is improvement.
For anyone new to my blogroll, I am a Cub Scout Leader in the Scouts Canada program.. Girls & boys aged 8-10/11..
Because of my mental health issues, I had decided that I would not participate in the first few meetings cuz I didn’t want to expose the kids to me potentially having an inappropriate emotional outburst
So, other than parents who don’t read emails that say “Hey! We’re not at the church this week! Dress for outside!” It was good..
The three or four who didn’t dress appropriately, well, they got soaked, cuz it was raining. But in the email I warned them!! Let’s hope they read the next one cuz they gotta bring stuff.. Stuff from the hike.
We didnt loose any kids.
I think I surprised then with the jungle closing.. While Johnathan, a senior Cub, had helped Scouter Ryan, apparently they fell short of my enthusiasm.. lol.
So next week we are at the church making airplanes & painting rocks.. that should be fun. 🙂
Fibromyalgia 
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