chronically ill holiday guide…

I post this every year, so if you gave it a glance last year, you’re allowed to skip this year. Although, if you know anyone with a chronic illness (or, spoonies if you want to pass it along to friends/family), it does help explain why this time of year can be particularly difficult.

The holidays are a wonderful time of togetherness, but can also be a time of stress and frustration as well. If you’re already dealing with the stress and frustration of a chronic illness, holidays have the potential to be miserable.

Although I wouldn’t consider myself to be religious, the holiday season is my favorite time of year. It is also my most fatigued time of year, but if you need to nap, there’s nothing like napping under a warm blanket, surrounded by holiday lights, with the smell of baking cookies and a flickering fire nearby. Of course, fireplaces in southern California don’t get much use, but sometimes we crank on the A/C just to use the fireplace.

Not really.

Although I’d like to specifically ask my chronically ill readers (regardless of your illness) to chime in with their holiday tips, this post is primarily intended for caregivers and friends/family of those with chronic illnesses. For my chronically ill readers, it might not be a bad idea to send your holiday guide to your loved ones to avoid any potential embarrassments or misunderstandings.

Holiday Parties. I love a good holiday party. Whether it’s a white-elephant gift exchange party where I can pawn off my sister’s singing fake boobs gag gift on someone else (true story), or it’s a classy office soiree,  I’m in. Or, at least I was in before dysautonomia. Now, it’s a coin toss. Parties can be difficult, as they usually require a lot of energy – something your chronically ill loved one is probably short on. We want to come, in fact we might be dying to come, but that has no bearing on whether we’re able to come. Please don’t take it personally if we can’t make it. Your loved one may even confirm that s/he will attend, but have to back out at the last minute if s/he’s having a symptomatic day. If you’re handing out goodies at the party (e.g. presents, cookies, etc.), perhaps save a goody bag for your loved one that can’t attend. They will be touched you thought of them.

If your friend or loved one with a chronic illness is able to make it to your party, understand that they may not be able to stay very long. Many parties are standing-room only, which can be difficult for those with illnesses. This one is huge for me – I have already declined invites this year to parties where I know there will be 40+ people, and only a three-seater couch. I operate under the notion that the best way to turn strangers into friends is to go sit on their lap. It has made for a few awkward introductions, so apparently I’m alone on that one. If you can, reserve a seat for your chronically ill loved one. If the event is more of an all-day gathering, such as a holiday meal at family’s house, provide a quiet, isolated room where your loved one can go lie down for a few minutes.

Alcohol. Truth be told, I like a good drink. In fact, I view alcohol like I view desserts – there isn’t a lot I don’t like. If I wasn’t a dysautonomiac, I’d probably be a lush. However, since becoming ill, I find I ration my alcohol intake. A drink can often give me a migraine, a horrible hangover (yes, just ONE drink), and make my heart go crazy. Sometimes it’s just not worth it. Yet, holiday parties, gatherings and meals are often accompanied by alcohol. It’s probably a good idea to ask everyone, especially your chronically ill loved ones, before pouring them a glass. It’s awkward refusing a glass that has been poured just for you.

I have also learned over the years that it’s important to have a special drink for special occasions, even if it’s a non-alcoholic drink. Water gets boring. Consider purchasing a  bottle of sparkling cider, virgin egg nog or other similar drink , in case your loved one would like to enjoy a special drink, too. And, most importantly, if your friend politely declines alcohol, leave it at that. After a while, reiterating that I’m not pregnant gets old. It’s just my winter weight, but thanks for noticing.

Cooking. Cooking involves two factors which can activate symptoms: 1) standing, 2) a hot stove or oven. If you’re going to a chronically ill loved one’s house for a holiday meal, remember that what may seem like a simple task of cooking may in fact be the most difficult thing that person has done all week. Offer to help cook, or, if possible, offer to bring most of the food. Many grocery or specialty stores offer pre-made meals during the holidays. Or, make a new tradition and go out to eat. No  cooking, no cleanup 🙂

Eating. I love to eat. There’s no denying it – the way to this girl’s heart is most definitely through her stomach. That probably has something to do with why I’m in love with a Japanese man. Because…..yum.  And, fortunately holidays are filled with lots of mouth-watering delights. However, many people with chronic illnesses are on special diets. Or, even if they’re not on a special diet, they may have limitations. For example, recently I have had difficulty with heavy carbohydrate meals, as is common with dysautonomiacs. The blood pools in my stomach in order to digest the food, making me lightheaded and causing chest pain and bad tachycardia. Others have difficulty with sugars, gluten, histamines or may require a low salt (or, in the case of dysautonomiacs, high salt) diet. When planning your holiday meal, make sure to ask your loved one’s input. If you plan to eat out, invite your loved one to select a restaurant, or to select a few, and you can narrow it down. Be sure to have some non-sweets for your holiday festivities, and preferably a variety of snacks (a protein, carb, fruit, etc).

Shopping. Ugh, shopping. I don’t want to be a traitor to my gender, but I don’t really dig shopping. Browsing through clothes that look cute on mannequins but ridiculous on actual human-sized women isn’t my idea of a good time. It’s even worse during the holidays.  This time of year, I would rather be almost anywhere than a mall. Even grocery stores tend to be overly crowded and involve long lines.  Many chronically ill folks just can’t do malls, so if you exchange gifts, perhaps consider adding gifts to your list that can easily be obtained online. Most stores (even small businesses, if you like to shop locally) have websites available where gifts can be purchased and shipped directly to the intended recipient.Be sure to provide your wish list to your ill family/friend with plenty of time. I don’t have the energy to do all the shopping in just a few days, even online. Or, as you get older, think about alternative gift exchanges, where you each make a donation to charity/family in need, or do a nice deed for a stranger. All of these can greatly ease the stress of shopping for a chronically ill loved one.

Conversation.  I’m not the most talkative person, but every now and then you can’t get me to shut up. But nothing quiets me up faster than dysautonomia.  Talking is tiring. The holidays often involve a lot of conversing and catching up. I love to hear what my friends and family have been up to, and inform them about the exciting worlds of lawyering and dysautonomia, but sometimes it can be overwhelming. Especially when someone keeps talking and asking questions. For people without fatigue issues, conversing is probably a low-energy activity. For those of us with fatigue, it can feel like we’re running a marathon. Be aware of how long you have been talking, or how many questions you have asked.  If I’m giving short answers, it probably means I’m getting tired. However, I do still enjoy listening to what has been happening in your life. The best rule of thumb is probably to talk to your chronically ill loved one like you would your grandmother – you generally talk about what you have been up to, and grandma listens quietly. If your grandma would be tired by now, then I’m probably tired now, too.

Activities. I’m going to go out on a limb and say that the one thing all chronic illnesses have in common is fatigue. Certainly the causes and levels of fatigue vary, but I have yet to hear of a chronic illness that doesn’t cause fatigue. And, this time of year can be exhausting for even the most energetic. If you intend to spend time with a chronically ill loved one this holiday season, especially if you will be staying at their house or vice versa, be mindful of their fatigue. Hosts often want to think of fun activities to do while family and friends are visiting. However, we may not be able to participate in all activities. Even seemingly low-energy activities could still be difficult. For example, watching a movie in the theater is actually fairly difficult for me.  There’s usually a lot of walking to get to the theater, I don’t do well with loud sounds or vibrations, and unsteady visual motions make me dizzy and give me a headache. Have a few activities planned, including some relaxing activities like watching holiday movies on the couch, and ask for your loved one’s input. If you’re close friends/family, even lounging in bed together in your jammies can result in lots of smiles.

It’s okay to do activities without us. My family is so thoughtful and always wants to only do things I can participate in, but that can leave me feeling guilty and lead to pushing myself too hard. I often encourage them to go do something without me for a few hours. That way, they can still enjoy the fun activity, and I can sneak in a nap.

Remember that just because we are able to participate in activities one day does not mean we will be able to the next. Comments such as “but you went on a walk with us yesterday”, although not intended as such, may be hurtful. Often we pay for being active days later.

The key to an enjoyable holiday season is communication and patience. Asking about our limitations and being sensitive to our needs can help ease the stress. We know you love us and will go out of your way to make everything perfect. Likewise, we love you and will push ourselves to make you happy. But remember, lots of great memories are made sharing a few laughs over a cup of tea.

“Having somebody help you doesn’t mean that you failed, it just means that you’re not in it alone.”

Happy Holidays.
–  L

Chronically ill friends: What challenges do you face during the holidays? How do your friends/family address those challenges?