Not just surviving the holidays: Part 2

 In Anxiety, Chronic Illness, Ehlers-Danlos Syndrome, Grief, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Management Skills, Marfan Syndrome, Mental Health, Mindfulness, Pacing, Self-Care

Following on from Not just surviving the holidays: Part 1, in this post we discuss some more challenges people with hypermobility can face during the holidays and some suggestions on how we might overcome them to enjoy the holidays!

Not just surviving the holidays: Part 2

Grief

Dealing with grief at Christmas can be extremely difficult, and a real roller coaster of emotions. When you’ve lost someone you love, or a relationship has broken down, being all “shiny-happy-people” at Christmas can be a challenge and can feel like an insurmountable task in the lead up to “the big day”.

Michelle’s advice is this: feel your feelings. If you’re feeling sad, it’s OK. If you’re feeling teary, let yourself cry. If you’re feeling lonely, acknowledge it. Bottling up emotions isn’t good for anyone. If you’re feeling happy, remember that you’re allowed to feel happy and still be grieving at the same time. While the conflicting feelings of happiness and grief can feel uncomfortable and can sometimes bring feelings of guilt, know that it’s completely normal… and remember that the person you are missing so much would most likely have wanted you to experience some joy this Christmas, whether they are there with you or not.

Grief doesn’t disappear just because it’s the holidays, just like your chronic illness doesn’t take a holiday just because it’s Christmas. The real goal is learning to find ways to enjoy the holidays with our feelings and our realities, as hard and devastating as they can be.

To read more about coping with grief during the holidays, you might like to check out this article by goodtherapy.org

Pacing

You’ve all heard me (Michelle) rave on about the importance of pacing when you’re living with a chronic health condition (or 3). At Christmas, it is never more crucial. The crazy-busyness of this time of year means that we need to take extra special care of our extra special bodies if we’re going to make it through.

So what might that look like?

  • Picking the “main event” that you’re really keen to get to and enjoy, and focussing on that. Weigh up all other invitations and “must dos” against the goal of making it to the main event.
  • Saying no to some invitations in the lead up to Christmas Day
  • Planning ahead any outings and family/friend activities to allow for rest breaks, chill time and flexibility
  • Allocating rest/downtime before, between and after events. Like literally, put REST TIME in your diary. Don’t let it be an afterthought, it has to be a priority
  • Listening to your body, if you’re feeling fatigued and like Christmas is kicking your butt, take time out. Cancel plans if you have to, bearing in mind your ultimate goal for this season.
  • Remember for most of us “there will always be next year”.
  • Be realistic with your estimation of your energy reserves. Get your spoon counting on.
  • Remember that fatigue is often accumulative. That means overloading yourself in early December is still going to affect you come Dec 25th.

For more posts about pacing check out: Managing Fatigue and 4 Keys to Hypermobility Pain Management

Dietary Issues

As someone who lives with a few dietary challenges, I know how hard it can be to negotiate food at Christmas. Extended family and friends who just don’t remember, “get” or believe that you really can’t eat that… and tackling those situations where people mean well, but it’s not quite right (this happens to me a lot). I (Michelle), am gluten-free, dairy-free, red-meat allergic, legumes & lentil-free and I don’t eat seafood. Often people get one of those things right, for example, they get the gluten-free but forget the dairy free.

I’ve had too many occasions where I thought it was rude not to eat something because someone had made it with me in mind, ate the food and then paid for it afterwards. No one wants to spend Christmas Day locked in a bathroom, or worse, in the emergency department because they didn’t want to hurt someone’s feelings. So it’s time to put on your big girl panties and stick to your guns. “Thank you for thinking of me and going to the effort, but unfortunately I can’t eat X either, and it will make me very sick. I really appreciate you going to the trouble, but I’m not going to be able to eat it”.

No one wants to spend Christmas Day locked in a bathroom, or worse, in the emergency department because they didn’t want to hurt someone’s feelings. So it’s time to put on your big girl panties and stick to your guns. Don't eat or… Click To Tweet

Now, to counter the inevitable “I can’t eat that” you need to go prepared, take things you know you CAN eat, and be ready to eat them if there is nothing else available. You don’t want to miss out on eating altogether, so go with a prepared meal and some snacks just in case… Or get involved in the planning of the day and what will and won’t be served, and how it will be cooked. The how it will be cooked is a big one for me. Yes, I can eat turkey, but not if you prepare it with/touch it with the same utensils as you cook beef or lamb. I know others are the same.

For those of you who can’t eat at all because you’re on tube feeds, I hope you can find other ways to enjoy Christmas and the holidays. Perhaps finding a scent like cinnamon that reminds you of good Christmas memories and having that around the place might allow you to experience Christmas through smell?

Saying no to things you don’t want to do

If you’re invited to things you don’t want to do, guess what? You can say no! Shocking, I know. But no is a whole sentence, and it’s OK to use it. Your health is your priority, not anyone else’s. And that means taking responsibility for what you do and don’t agree to do.

If people plan activities or events that you know you shouldn’t do, or know would hurt you, make you sick or potentially cause you harm, you have a responsibility to yourself to make the right decision for YOU. Yes, others may be affected by your decision, but you are going to be far more affected by the consequences of the potentially threatening event than they ever will be. This is a time for self-preservation as much as it is “getting in the spirit”. I know it’s hard if you’re a people pleaser, don’t like to rustle feathers, or prefer to just “go with the flow” of other people’s plans… but you will thank yourself a few days after Christmas if you say no to those potentially problematic events in advance.

You are going to be far more affected by the consequences of the potentially threatening event than they ever will be. This is a time for self-preservation as much as it is “getting in the spirit”. Click To Tweet

Be prepared

Living with hypermobility conditions means getting a degree in forward planning. From outfits and shoes to food and what you’re going to sit on, we need to think about it. Are you going to Aunt Mary’s who has lovely looking chairs that just kill your back? Perhaps this year you need to take a cushion, your own chair, or a back support. Own it. I know it might be embarrassing, but it’s OK. People will get over it. Obviously, don’t go out of your way to make a fuss, but don’t give in to fear of ridicule or offending people… Your body, your choice, your priority.

Set realistic expectations

Setting realistic expectations can be hard when the people around you don’t understand how hard life is for you on a day to day basis. For some reason, some people think that you can just put your chronic condition aside for the day in order to make things “better” for everyone. That is not reality. You know it, I know it. So setting expectations with those who don’t know it is paramount.

For some reason, some people think that you can just put your chronic condition aside for the day in order to make things “better” for everyone. That is not reality. You know it, I know it. Click To Tweet

It may be an unrealistic expectation that you go to your sisters for breakfast, your Aunts for lunch and then your in-laws for dinner all in one day. Some people can do those things; most of us with hypermobility conditions aren’t those people. Setting the expectations early is important so as not to disappoint. This can be for smaller things too. Maybe you function better in the morning and can help with meal prep, but you’re not good after eating (or drinking 😉) and can’t help with the cleanup. Set the expectation, verbalise your abilities. “I’ll help with this now because I won’t be much help afterwards I’m afraid”, to avoid feeling guilty for not helping later. Maybe you can’t help with either of those things, but perhaps you can set the knives and forks out on the table, or make the playlist for the day, or be the photographer.

When big events are going on, we often feel compelled to help and contribute in some way, which isn’t a bad thing. I think it’s good. It’s a “normal” thing to do, and it can make the day more meaningful by making some kind of contribution. Think ahead – what can you be involved in that will be helpful and won’t be too taxing on your body/mind/spirit?

Be OK with however it turns out

Most days of our lives with chronic conditions don’t go to plan, so we really shouldn’t expect Christmas day to be any different, should we? It would be nice, ideal, and picture perfect if it did (and maybe it will!)… but, reality is, things don’t always go the way we hope. If the day doesn’t go the way you dreamed it would, remember it’s OK. It’s important to keep things in perspective. It really is only one event, or one day, in a lifetime full of events and days… and… nothing is ever perfect, but it can be enjoyable, and memorable all the same.

Christmas really is only one event, or one day, in a lifetime full of events and days… and… nothing is ever perfect, but it can be enjoyable, and memorable all the same. Click To Tweet

Make sure you take time out to focus on all that you’re grateful for… and practice your mindfulness – be in the moment, in the here and now, and focus on making memories that will last long after the day is over.

From Brittany & Michelle, we wish you a Merry Christmas & Happy Holidays! Stay safe!

Check out last years Christmas posts:

All I want for Christmas is for you to read this post

5 Tips for Managing Christmas Day Anxiety

Christmas Day: It is forever full of surprises

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Not just surviving the holidays: Part 1