This blog post was written by HOYFC staff member MJ Wallace.
This is a slightly different take on our usual Six Things Posts, but I hope you find it interesting!
The holidays are a stressful time for everyone, but can be especially so for folk who have a chronic illness. There are an estimated 2 million people in Scotland (that's around two out of every five people) who have a long term health condition which brings significant human, social and financial costs. I expect that number will likely increase in the aftermath of the pandemic due to long covid.
I've been living with moderate/severe ME (Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome) for several years now. Just existing in my day-to-day life is difficult and exhausting, and due to some recent events in my personal life I'm going into the festive period even more run down than usual.
So, I've been planning out a "holiday survival guide" to help manage my health and stop my ME from flaring up over the next month. These suggestions are based in my personal experience, and so are more relevant to disabled folk with similar abilities and limitations to me (For example, I am pretty much fully housebound but not bedbound, and I use some mobility aids but can walk short distances and am not a full-time wheelchair user). There are many disabled folk who won't be in a position to use these suggestions, either due to the lack of accessibility in a lot of our society or because it's not safe for them to leave the house and see other people because of covid. This group of the "invisible ill" are often excluded from conversations about illness and the loosening of pandemic restrictions especially. I just wanted to acknowledge that this list won't be applicable to everyone, and to let you know that if you are one of the folk not able to get out and about at all, that I see you, and send all of you my love and seasons greetings.
Also, while I hope these suggestions will be helpful to other folk who have a disability or chronic illness (shout out to my fellow spoonies!) I think they could also be useful for folk who are able-bodied but struggle with feeling overwhelmed at this time of year. Being able to set boundaries and opt out of things for your own wellbeing is important, and these behaviours becoming more common and normalised benefits everyone, disabled and able-bodied alike!
Now, on to the list!
Carve out time to rest/recharge each day
I'm an introvert, so even before I became disabled I needed a lot of alone time to decompress. Now that I have ME, I am even more sensitive to busyness and socialising.
Setting aside time for yourself is vital, whether that takes the form of spending a half hour scrolling your phone before getting up in the morning, excusing yourself after a meal to go chill somewhere, or staying up a bit later than everyone else to have a cup of tea and decompress for a while. You need to let your mind and body rest, and making it a set part of your festive season routine makes you more likely to remember and plan for it in advance.
Manage Your Sensory Input
This is a practical survival tip for my fellow folk who are very sensitive to stimulus. I've never liked crowds or noisy places, but since getting ME I've become even more sensitive to them. One time, I was in a restaurant that was so noisy it fried my brain and I couldn't read or understand the menu anymore (my family had to order for me but then I was so overwhelmed and exhausted that I couldn't even eat anything. Fun times!)
Buying a good pair of ear plugs (I use Calmer, by Flare Audio - this isn’t an ad, they’re just my personal go-to) and keeping them on hand at all times along with sunglasses and a nice soft eyemask has been an absolute lifesaver for me. Need to go to a busy shop or cafe? Ear plugs! Want to watch YouTube with your pals but have light sensitivity and eyestrain from playing video games beforehand? Sunglasses! (Yes I feel silly wearing them inside in December. Doesn't mean it's not a good life-hack). Can't look at screens/lights at all but still want to be in the same room as your family while they do their annual watch of It's A Wonderful Life? Eye mask!
I also use the eyemask and earplugs combo to help me sleep when staying at my parents, or if I am struggling with insomnia. Being able to adjust your sensory input can make a big difference in your energy levels and mood, and it's one of my favourite ways to "rest" while still spending time with my loved ones and feeling part of things..
Be willing to stay home, leave early, or adapt your plans
Sometimes the best way to enjoy an event is to skip it entirely, or make sure you only attend in a way that works with your needs.
Yes, it sucks to miss out on things. FOMO is real, and something chronically ill folk have to put up with a lot of the time. But missing Christmas eve drinks might be worth it if it means you won't feel like a zombie on Christmas day.
And a lot of the time you can make adjustments or organise alternatives. If you can't make Christmas eve drinks, could you manage a lunch earlier in the day with the same friends? Could you attend but not drink, attend but only for part of the time, or attend with some assistance (ear plugs to limit the noise level of the pub, booking a table and having your friends go and collect the drinks from the bar so you don't have to get up)? Figure out what your limitations are, and what it is you'll be sad about missing (seeing the Christmas Market, meeting friends, drinking baileys etc). There is almost always an adaptation you can make so you can still experience the aspect of the event you most want, but in a way that is manageable for you.
Monitor your energy and mood
Meditation/mindfulness is one of those things that is both loved and loathed by the chronically ill.
It is loathed because it gets suggested so often as a cure-all (along with yoga, dieting and whatever new supplement is currently all the rage) by people who don't understand your condition and think there is a magic wand just waiting out there that you are choosing not to use.
However, I personally love it (and know lots of other spoonies who do too) because while it's not a cure by any means, it is one of the most effective ways to monitor how I'm feeling and what I need. I use mindfulness as a way to step back from my busy brain, "check-in" with my body and pay attention to how I am feeling. I've done it enough now that, while I definitely don't practice as regularly as I want to, when I start feeling like something isn't right I instinctively slow down, breathe, and listen to my body.
The same way as seeing a cars dashboard lights lets you know when there's a problem with the vehicle, paying attention to your body and how you're feeling can help you look after it. It can let you know when you have the energy to do something, when a flare up is coming or when you need to stop what you're doing and rest.
Even if you don't enjoy meditation, using a mood-tracking app or phone alarm throughout the day as a reminder to "check in" with how you’re feeling and adjust your activity accordingly can help you prioritise your wellbeing amidst the busyness of the holidays.
Have food and snacks on hand
I know it seems silly to be prioritising having snacks at the ready in a season where 90% of the activities involve eating, but I've found it very useful to make sure I have a "survival snack pack" with me over the holidays.
Sometimes it's because I'm craving simpler food than the rich festive treats on hand, sometimes it because there is a wait while Christmas Dinner is being prepared and I need something familiar to keep me going, and often it's because I'm actually doing something exciting (as in, something that involves leaving the house and *gasp* going somewhere!) and I need to have a quick energy boost on hand when I'm out and about.
A short and incomplete list of my favourite snacks to have in my handbag/snack-pouch/fridge corner:
Granola bars - self-explanatory, they are the standard "snack on the go" for a reason!
A hard boiled egg - these little protein bombs are so good as a pick-me-up. They have become such a staple part of my snacking that my family even has an in-joke about it now! (It consists of doing a Captain Picard impression and requesting an "Egg. Hard-boiled. Singular.")
(... I never said it was a good joke.)
Fruit, such as a banana or plum - preferably something easy to eat and not too footery. (I’m looking at you, oranges!)
Single-serve cake or chocolate bar - massive tubs of chocolate are a festive staple and obviously amazing, but sometimes I need a pre-portioned, already packaged snack I can just grab and eat. Sugar rush activated, with no brain-function or decisions required.
Electrolyte tablet/powder for putting in water - mileage will vary for this, but I find having a glass of water with half an electrolyte tablet and a spoonful of d-ribose powder is great for perking me up with a bit of extra energy.
Snacks/beverages for your specific dietary requirements - this varies from person to person. For me, I always bring some herbal or decaf teabags with me whenever I go to someone else's house, because that's the thing I need that is weirdly specific and that many folk don't have in their cupboard. For other folk, it might be gluten free snacks, or vegan ones. In general, I would rather know I have something I can definitely eat/drink and not need it, than turn up and only be able to drink water because my finicky body treats caffeine like rocket fuel (complete with crashing into the sea afterwards).
Be upfront with your boundaries and health needs
This is probably the most important rule and one of the most difficult to follow, especially for folk who struggle with anxiety or imposter syndrome regarding their health and needs. I have had to do a lot of work in therapy since becoming disabled so that I can better advocate for myself.
While it can be daunting to do, I've found that being able to openly state your needs is on the whole less stressful than trying to work around them in secret. Assuming the folk you're going to be around care about you and your needs (I will talk a little about more difficult relationships further down), telling them what you need and want will make their lives easier too. My family don't want me to end up exhausted and ill, and if they know I will be honest with them and set the pace for the day instead of trying to act "normal" when I'm actually dying inside then they can relax and enjoy themselves without worrying constantly about me and how I'm coping.
If you're going to be meeting up with folk somewhere, do your best to state your needs in the group-chat/planning stage, because it's a lot easier to adjust plans early on than after everyone shows up to somewhere that's standing room only and blasting music. Some examples:
"Let's make sure to book a table in advance - I'll need to be able to sit down"
"Can't wait to see everyone! Can we check the menu online to make sure we go somewhere with gluten free options?"
"I don't think I can manage the noise and busyness of peak times. Could we meet earlier in the day instead?"
And if (like me) you'll be staying with/visiting family over Christmas, having some planned boundary phrases in place to bring up when needed can be a lifesaver. Some examples:
"That sounds great, but I need a rest first. I'll join you in twenty minutes"
"I need a soft seat, can we chill out on the sofa for a bit?"
"I wish I could join but I need some quiet-time. Enjoy carol singing/pub crawling/your annual Christmas morning dawn hike without me and I'll see you when you get back. Have a great time!"
Generally people like to go with the flow. If you make it easy and stress-free for them to adjust plans to your needs, they are often happy to go along with it. This can mean a bit more work and planning on your end (checking out places online or phoning ahead, being involved in organising the activities instead of just showing up) which can definitely be frustrating when managing your symptoms is already a full time job. However, in my personal experience, if it means I'm able to see my loved ones and have it go smoother for us all I don't mind the little extra work in advance. What energy I spend in planning beforehand is generally outweighed by the lack of stress on the day, and it's a net positive for my health and ability to take part in things.
I know that I am lucky to have a family who are so understanding of my health needs. Due to the stigma and general misunderstanding of chronic illness, invisible disability and mental health conditions, many folk's loved ones don't take their needs seriously. Some don’t even believe the condition exists at all. In these situations it can still be very helpful be up front and clear in your boundaries, because you can use it to your advantage. When you calmly and firmly set your boundary (as a statement, not a question) with the expectation that the other person will happily meet it ("I need to have a short lie down. I'll be back in half an hour. Thanks for understanding, and have fun without me!") you make it easy for them to cooperate and difficult for them to push back. If they make a fuss or complain about it, they will be the one going against the flow and causing an issue. It's like peer pressure, but for the greater good. And apart from the positive peer pressure aspect of things, the boundary should be a statement of fact rather than a request because your health is a priority, not something that is optional.
I know this is all easier said than done, but I have genuinely found it made a real difference with my experience of social gatherings, and made them a lot more manageable. However, big caveat in that pretty much all of my loved ones are already on board with my health needs - my boundary communication tends to be "here's what I'm able to do today" so my family can figure out what options we have, rather than me actually having to constantly advocate for myself in a tense or hostile environment.
If your relatives and loved ones constantly and regularly overstep your boundaries and try to stop you from looking after your health needs, the best thing to do might be to limit the amount of time with them, such as visiting for a short time rather than all day or skipping the Christmas visit altogether. As hard as that can be (and as guilty as you may feel over it) your own health and wellbeing has to come first. Always.
I hope these suggestions have been helpful - I know I'll be focusing on them in the next few weeks, and putting them into practice as much as I can. And if you're looking for some last minute Christmas gifts for your chronically ill loved ones, I highly recommend checking out our Forever Tired Collection. While the designs are not specifically about chronic illness, as an anxious and permanently exhausted disabled person they do make me feel very seen.
Until next time, have a very restful Christmas and chilled-out New Year!