How to survive the Christmas holidays without meltdown/flare-up

[hellytheelephant]

I sound like a grumpy Scrooge in this post ,so I apologise in advance- maybe Mr Scrooge had chronic pain too

I just wondered if anyone has any good advice on what works for them over Christmas- either in practical terms, i.e pacing etc. but also emotionally,

Christmas like other big occasions can feel like a big reminder of things lost and what I am unable to do. Yes, I do feel really blessed in my life, but it is still hard to have to be on the sidelines (or under the duvet ) when it feels like the rest of the world is wearing a party hat
Your thoughts?

 

[belize44]

I sound like a grumpy Scrooge in this post ,so I apologise in advance- maybe Mr Scrooge had chronic pain too

I just wondered if anyone has any good advice on what works for them over Christmas- either in practical terms, i.e pacing etc. but also emotionally,

If you are invited to three things, (and are able to go) just pick one and rest up before the event and leave time to rest afterward. Also, plan ahead on exactly how long you can stay without seriously depleting yourself, and stick to it no matter what. Also think about what you can safely eat without causing any flare ups (sweets, alcohol) and be mindful of those things as well. I hope that helps? I am not sure how much you are limited.

Christmas like other big occasions can feel like a big reminder of things lost and what I am unable to do. Yes, I do feel really blessed in my life, but it is still hard to have to be on the sidelines (or under the duvet ) when it feels like the rest of the world is wearing a party hat
Your thoughts?

I don't have much advice about it since I completely ditched making a big deal out of Christmas long ago. As I got more and more challenged with my physical health, I realized that it was a relief not to go around my dysfunctional family, with all the accompanying clamor and drama. I know that is not helpful, but maybe what I am trying to say is that what I found helpful was to figure out what Christmas meant to me, and focus on how to make myself feel content in what I chose to do to celebrate it. I found that I liked celebrating Winter Solstice, by lighting beautiful candles and decorating my table with pretty things, watching old favorite Christmas movies, listening to soul nourishing choir singing, and taking it easy. I do miss being able to tolerate exciting noisy parties, but there it is. I simply cannot do that anymore. I don't even send out cards anymore. And I get to shake my head in amazement at all the crazy people racing around at the last minute trying to buy that perfect Christmas present.

I did grieve a lot about my limitations in the holidays at first, but now I have gotten used to not doing a lot of stuff, so it got easier. In the past I enjoyed putting up a tree, decorating with lights, baking for relatives, etc. But now I am lucky if I can bake for myself and DH. I hope you can find a happy medium and find the things that make the holiday season lovely for you! (I had a really crappy night's sleep so I hope all that I wrote that made sense)

 

[ahmo]

No thoughts, just my commiseration.

 

[hellytheelephant]

No thoughts, just my commiseration.

I don't have much advice about it since I completely ditched making a big deal out of Christmas long ago. As I got more and more challenged with my physical health, I realized that it was a relief not to go around my dysfunctional family, with all the accompanying clamor and drama. I know that is not helpful, but maybe what I am trying to say is that what I found helpful was to figure out what Christmas meant to me, and focus on how to make myself feel content in what I chose to do to celebrate it. I found that I liked celebrating Winter Solstice, by lighting beautiful candles and decorating my table with pretty things, watching old favorite Christmas movies, listening to soul nourishing choir singing, and taking it easy. I do miss being able to tolerate exciting noisy parties, but there it is. I simply cannot do that anymore. I don't even send out cards anymore. And I get to shake my head in amazement at all the crazy people racing around at the last minute trying to buy that perfect Christmas present.

I did grieve a lot about my limitations in the holidays at first, but now I have gotten used to not doing a lot of stuff, so it got easier. In the past I enjoyed putting up a tree, decorating with lights, baking for relatives, etc. But now I am lucky if I can bake for myself and DH. I hope you can find a happy medium and find the things that make the holiday season lovely for you! (I had a really crappy night's sleep so I hope all that I wrote that made sense)

Thank you for writing such sound advice on little sleep!
I think the problem is that I am worse than this time last year...when I already felt then like I had given up a lot of things. I am so much more limited in the last few months. I haven't been a party animal for quite some years. but lately even going to church has been impossible and I often have to cancel having visitors as pain and malaise make me feel like I can't cope with more than lying in bed.

You make a really good point about doing the things that make the season special for me. If I am honest, I have only just started to grieve and ocassions are often like a 'You are Here' arrow on a map. I have quite a few elderly friends and they are all more active in their 80's and 90's than I am in my 40's.

I only got diagnosis for pain in June, and cfs more recently. and I am hoping that with time I will have accepted things better- the grieving process seems to go on and on

I hope you sleep better...

 

[whodathunkit]

I can't give you much advice (when I was feeling bad I just laid around and basically said screw everything, not something most people want to do), but here's a great thread started by @Jody about crashy Christmas:

http://forums.phoenixrising.me/inde...-a-crashy-little-christmas.34618/#post-548663

Also click the link in her first post in the thread. That takes you to a blog post where she discusses it more indepth.

Hope you get through it all, well and happy.

 

[Seven7]

what I have learn is that when I wear earplugs I can be with big groups (I go to the movies w earplugs too) for me the noise crashes me very bad so that helps a lot, you will hear conversation direct to you but the background gets canceled.

 

[Sasha]

I pace carefully and have to be on my own for most of the day (too tiring otherwise). My family visit from far away and stay in a nearby hotel. We have an hour together on Xmas Eve, an hour together on Xmas morning and then they go to visit other family for lunch (too much for me), and then bring the rest of the family back with them for another hour or so in the late afternoon, and then leave me to it. I go to my bedroom and lie down for a bit while they're here if I need to. Then I see them for an hour on Boxing Day morning before they go home again.

Manageable! It's not anybody's idea of normal but it works for me and I'm grateful to have a family that "gets it" and works around it.

 

[justy]

This year we are renting a house in Brighton so we can be near my two grown up children and my granddaughter. I have 4 kids plus two of them have partners, the other two are younger, still at home, so we have to do some kind of family xmas. The last few yers I got through it by staying in bed when I really wanted to be up with everyone. I also let them cook now, and I get as organised as possible beforehand - I started xmas shopping for gifts in August and have pretty much finished and soon I will start wrapping them up, a few at a time. I have also started writing a list for food we will need, and next week I will order it for delivery, from my bed to be delivered in brighton.

I know I will crash, and I will just have to spend more time in bed. I am always ridiculously optimistic about what I can do...the idea is that if we go for a week and have our own house, my husband can take the kids out to things like ice skating while I rest back at the house alone...my health is so variable now it is hard to know if I will manage a couple of short trips out and some time downstairs with the family or if it will all be too much for me and I will spend all week (and the next month after) in bed.

But I was determined we would all see each other for xmas, I spent a long time saving up for the trip, so am determined to enjoy it.

 

[hellytheelephant]

what I have learn is that when I wear earplugs I can be with big groups (I go to the movies w earplugs too) for me the noise crashes me very bad so that helps a lot, you will hear conversation direct to you but the background gets canceled.

thanks-great tip!

 

[hellytheelephant]

Thank you all for sharing your different experiences and tips. I have simplified my plans and am going to plan ahead regarding food and energy, so I do not get a mega crash.
Hope you all have an excellent Christmas with the ones you love.

 

[taniaaust1]

I'm really hoping for an easy xmas day, its been a nightmare last few years and one Christmas day almost put me into hospital (I'd done too much by peeling vegetables and then went into severe air hunger).

This year I'm hoping for my daughter and her family to just come over for a few hours or so xmas day. All food will be done in advance or brought rather then me cooking. I've already done the xmas shopping through out the year so only have a 1-2 presents still to get.

My other family though may screw up my easy xmas day as though they wouldn't previously come out my way to hold xmas in a park or at the beach and were making me travel quite a distance..over an hour each way (which involved tears for me as no one wanted to pick me up either), suddenly when they hear my daughter is coming to see me to my home for a quiet xmas day this year, now they want to join in

 

[hellytheelephant]

I
My other family though may screw up my easy xmas day as though they wouldn't previously come out my way to hold xmas in a park or at the beach and were making me travel quite a distance..over an hour each way (which involved tears for me as no one wanted to pick me up either), suddenly when they hear my daughter is coming to see me to my home for a quiet xmas day this year, now they want to join in

This is a demonstration of why pacing is SO tricky- we can pace our own energy, but we can't control what other people decide to do.
Hope all goes well

 

[WoolPippi]

second the earplugs, I wear them all the time. I also have big ear mufflers, industrial ones, that I wear daily for a bit. Ahhh peace and quiet.

For the holidays I've said no to all invitations and obligations. It's just me, mr. Pippi and the cats. I'll share the season with loved ones by posting some pictures online, of our candles or sleepy cats.

Emotional this works for me:
- remind myself I don't like parties anyway.
- remind myself everybody has a sadness in their life. I wouldn't want to walk a mile in anybodies shoes, I'm sure.
- looking forward to the quiet days ahead where I can just drink tea and knit. I've put together a box with treats for myself for the holidays (an ornament, some chocolates, nice yarn, nice notebook)
- looking forward to "a project" that I can work on during those days. I'm thinking of drawing an advent calendar for next year. Colouring works for a lot of people. As does close up photography with your phone. Thinking about it is good enough.
- I'll feel connected through the internet if I want to feel connected
- I've just learned how to use emotions as friendly reminders of my body to go do stuff. To use them as prompts to stop what I'm doing now and go do something else, something more fun. (no physical activity required, for example a simple change of direction of thought is enough. The aim is endorphines flowing.)
- emotional brain support: take my vit D and the minerals Zinc and Lithium and the hormone Progesteron. Avoid nutmeg, artificial vanilla, onions and garlic.

 

[Snookum96]

what I have learn is that when I wear earplugs I can be with big groups (I go to the movies w earplugs too) for me the noise crashes me very bad so that helps a lot, you will hear conversation direct to you but the background gets canceled.

I have noise-cancelling headphones that I use , great when around toddlers.

 

[Snookum96]

I sound like a grumpy Scrooge in this post ,so I apologise in advance- maybe Mr Scrooge had chronic pain too

I just wondered if anyone has any good advice on what works for them over Christmas- either in practical terms, i.e pacing etc. but also emotionally,

Christmas like other big occasions can feel like a big reminder of things lost and what I am unable to do. Yes, I do feel really blessed in my life, but it is still hard to have to be on the sidelines (or under the duvet ) when it feels like the rest of the world is wearing a party hat
Your thoughts?

I will spend Christmas morning with my family. That's about it. I only do the things that are really important to me. My husbands family's Christmas I probably won't go to. Too much use of precious energy and don't think they would care that much anyways.

I look at the amount of effort (and subsequent damage) an outing would cause and if the people I would be seeing would go to those lengths for me. If they would, I'll go IF I am up to it. If not, waste of energy and suffering. If they do care that much they'd probably understand if I were too ill to attend

 

[hellytheelephant]

- I've just learned how to use emotions as friendly reminders of my body to go do stuff. To use them as prompts to stop what I'm doing now and go do something else, something more fun. (no physical activity required, for example a simple change of direction of thought is enough. The aim is endorphines flowing.)

@Snookum96 - I am in admiration at your attitude of transforming your negative emotions to be helpful to you . Like you, I am not a fan of parties. Your post has set me wondering if I waste too much time thinking about what I can't do. rather than appreciating the blessings I have.

 

[hellytheelephant]

I have noise-cancelling headphones that I use , great when around toddlers.

Yesterday, having attended church for the first time in many Sundays, lying in my pew,my senses were overwhelmed by a too loud sound system, and screaming tiny kids.....Father Christmas is bringing me a huge pack of earplugs this year!

 

[Old Bones]

Another issue with respect to Christmas, and especially the extended festive season it has become is this ......For those whose chronic illnesses make them unable to socialize except in a very limited fashion, the lack of friends doesn't miraculously change at this time of year. None of my pre-illness friendships lasted more than 10 years after I was no longer able to participate in the work, study, volunteer, sports and hobby activities that formed the base of my social life. All but one of the post-illness friends I've made have either died, or moved away. And, most people spend the holidays with their family and closest friends. My current social contacts are acquaintances only -- people who have no idea how limited my lifestyle is compared with theirs. I've been hurt too many times after being open about my circumstances, and being criticized and/or insulted. In fact, my "Old Bones" user name came from one of these insults -- that I needed to get my old bones out of bed earlier in the morning.

For many years I used my limited energy/endurance to make Christmas special for the elderly people I associated with, despite their functional capacities exceeding mine well into their eighties and early nineties. Now they (including my dear mother) are all gone, and there is no one stepping up to do the same for me (although I'm not as old as my avatar implies, and look nothing like it).

So this year, we've decided not to adopt expectations about Christmas that can't be met. Although I hope it will improve in the future, our current lifestyle is what it is. We (my husband and I) have booked a couple of well-spaced-out seasonal theatre performances. We'll watch a few tear-jerker movies, make one special meal, and that's it. I actually feel liberated having taken the pressure off.

 

[Snookum96]

- I've just learned how to use emotions as friendly reminders of my body to go do stuff. To use them as prompts to stop what I'm doing now and go do something else, something more fun. (no physical activity required, for example a simple change of direction of thought is enough. The aim is endorphines flowing.)

@Snookum96 - I am in admiration at your attitude of transforming your negative emotions to be helpful to you . Like you, I am not a fan of parties. Your post has set me wondering if I waste too much time thinking about what I can't do. rather than appreciating the blessings I have.

It comes in spurts. Some days I can be grateful for what I do have, and others I can barely muster a desire to live. Good days and bad days, you know how it is

 

[hellytheelephant]

Update:Just a footnote to say a big thanks to all those who made suggestions and shared experiences-.the average day is tough but 'occasions' can be even tougher for us..

I have focused on Gratitude, on what I have to be grateful for.

I have tried to set expectations low and under commit- I also managed to find the strength to leave a communal Christmas lunch early when PEM kicked in- I know I would not have had the guts to do that a year ago.

AND thank you to those who suggested earplugs, which have proved invaluable- I even managed to sleep through a 2 am fight in the street outside, when I am usually a very light sleeper!.