LindsayCan you believe the holidays are upon us already?? Where does the time go? The holidays are a wonderful time of family and 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.
This is my second holiday season since my dysautonomia diagnosis, so I’m not a rookie, but this is only my sophomore attempt. Last year went fine, and I’d like to think, unrealistically perhaps, that I’m a little wiser since then. Well, at least I’m a little older. 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. I’d like to address a few holiday stresses to hopefully make this time of year more enjoyable for all.
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. Parties often require a lot of standing, which can be difficult for those with illnesses. Consider having a seat always available for your friend or loved one, should they need to sit down.
Alcohol. Truth be told, I like a good drink. In fact, I view alcohol like I view desserts – there isn’t much I don’t like. 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. Perhaps consider purchasing a bottle of sparkling cider 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.
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 make pre-made meals available 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. 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 tachycardia. Others have difficulty with sugars, 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.
Shopping. Ugh, shopping. 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. I walked into my normally desolate post office a few days ago to find a line like this:
I turned around and walked out. Unfortunately, a line that long is just not a possibility for me. 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. Or, as you get older, think about alternative gift exchanges, where you each make a donation to charity or do a nice deed for a stranger. All of these can greatly ease the stress of shopping for a chronically ill loved one.
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, I recently went to see a movie in the theater (after not having been for over 4 years), and parts of the moviegoing experience left me very symptomatic. 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.
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. I was able to attend a wonderful holiday party last Saturday, but have had constant headaches, fatigue, dizziness and pain since. I had a fantastic time and don’t regret it at all, but I wouldn’t be able to do that again the next day, or even now almost a week 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.
“…everything can be taken from a man but one thing: the last of the human freedoms – to choose one’s attitude in any given set of circumstances, to choose one’s own way.” – Viktor Frankl, Man’s Search for Meaning
Happy Holidays.
– L
Chronically ill friends: What challenges do you face during the holidays? How do your friends/family address those challenges?
I do my shopping online, everyone brings a portion of the dinner. I realize that I may not be able to eat everything brought (food allergies) but that is ok. There is plenty enough that I can eat. I don’t go to parties because of all the fragrances and risk of mold. If my husband gets invited, I have no problem staying at home and letting him go and have a good time. Not only do I have food allergies but one of my daughters is a vegetarian. We try to make some dishes that don’t include meat and she usually cooks something that she knows she can eat as her main entree and then just fills in with all the vegetable dishes we make.
I can tell that I am getting more tired. Both yesterday and today I have sat down to just enjoy quiet and read and both times have nodded off with my book. Is it fatigue, is it the book, is it the weather (cold, gloomy and rain on its way)? I don’t know but I am sure just all the preparations for our Christmas Day activities has taken its toll on me.
Lindsay, you so TOTALLY ROCK! You constantly remind me that I am not the first one to go through this struggle. And I NEED the reminding, so DON’T STOP.
I leave for a vacation trip to the Disney area in FL tomorrow – my first since my dx. I am petrified. I can’t eat normally (eating make my bp go UP wayyyyy to high), I can’t walk around the parks (my BP drops wayyyy to low after 5 minutes), heck, I can’t even get out of bed some mornings because my heart rate tanks along with my BP. I have meds to make the BP go UP, meds to make the BP go DOWN. meds to help the tachycardia, meds to help the digestion. My entire life is now a crap shoot that even my docs don’t understand. So, how am I supposed to “enjoy” a trip? I’m a bit tentative about this one…
About 6 months before my dx, I noticed that I could no longer drink ANY alcoholic beverages. None. Zip. Zilch. Nada. To do so means I have extreme body aches, get very jittery, and end up with a massive migraine. I mentioned this to my docs. Blink blink. . They haven’t a clue. But, hey, they don’t really want me drinking anyway, so to them its a non-issue, even if its totally bizarre. So, I am a LOSER at holiday parties.
I’m lucky we don’t do the gift thing so I don’t have to endure shopping trips. (Horray for online shopping! )Heck, I can barely make it through the grocery store for a few things without squatting down in front of a shelf pretending I am looking at something while I pray I don’t pass out from m BP hitting bottom.
My issue, especially at gatherings, is trying to get people to understand that I REALLY DON’T FEEL WELL, and that I need to sit down, and that I cannot eat much and I can only drink water. What do I get?
“You look soooo good!”
“But I feel like crap.”
“So you must be feeling better?”
“No, it doesn’t GET better. It gets more complicated.”
“Oh, but you look soooo GOOOOD!”
Arrgggghhhhhh.
Maybe I should just pass out and see if anyone notices….
Lori, Thanks for your comment! Wow, a Disney trip??! I’m not sure I could do that! Do you use a wheelchair when you to places that require a lot of walking? I never have, but to make it through a day at Disney I think I’d have to!!
I HATE “So you must be feeling better?” As if I’m only allowed to leave the house when I feel well. If that was the case, I wouldn’t get out much 🙂
Linds
Thank you for saying hello by liking my blog entry: ‘a medical lament’ (adamsjottings). I know that you know that sometimes we just have to be a bit dejected.
Perhaps oddly, I am almost always of good cheer. I have accepted what I am and what this illness is.
My greatest challenge is to have enough contact with our family (my wife and I). They live at some distance: my elder daughter in outer Sydney, some three hours drive (for them, we cannot make it any more); my younger daughter in Adelaide, too remote for contact, elder step-daughter in Perth, at the other side of the continent and younger step-daughter in Holland. I have brothers and cousins (and who knows what nephews and nieces) in the UK – I am from Scotland but left there 45 years ago.
But my step-daughters are visiting for Christmas, although I fear it will be for one day only.
So my challenges are firstly to accept this very small (and in one case non-existent) degree of contact (and thus communication).
I have to pace myself very carefully in the lead-up to the season and the visit. And I have, when they are here, to be as open as I can and try to see that they give a little of themselves too. To have communication!
I’ve run out of thoughts! And energy too. So there we have it, not really answering your question but I wanted to say something.
Best wishes
Adam
Hi Adam, thanks so much for visiting my blog! I admire that you’re often in good cheer. I try to be positive and am working on accepting the illness, but some days its difficult to accept the limitations.
I hope you enjoy the time you have with your family this holiday, even if it is short.
I don’t know how to thank you for such a WONDERFUL entry! I’m passing it along to my family members to help them understand what I go through. Truly fantastic!
Thank you so much, I’m glad you enjoyed it!
Great post Linds!!
Another tip, if your loved one doesn’t appear to be contributing to the conversation don’t feel you have to try too hard to bring them into it. If after one or two small attempts to include them they still aren’t conversing let them go. Conversation, particularly group conversation can be tiring as it uses a lot of concentration for some people with chronic illnesses. Chances are if they are quiet they are still following the conversation and are choosing to sit back to make sure they don’t miss anything, and maybe to conserve some energy. If you want to catch up with this family member maybe take them aside to a quiet area for a little one-on-one. Their brains won’t have to work so hard to block out the noise and it can be a little easier for them. Also don’t be too offended if you find they aren’t asking about you. It’s not that they don’t care, it’s just that their brain is a bit slow and while answering your questions they can’t always remember all the things they mean to ask. (Tip for the newbie owner of a chronic illness – I sometimes find that just before a holiday catch up I run through a list of 2 or 3 things I want to remember to ask the friend/s about so that I don’t come across as disinterested to those who just don’t get it. One the really bad days, make a note in your phone. When you sneak off to the bathroom you can take your phone and remind yourself)
This is another good tip! Sometimes it is just too overwhelming to get into conversation.
I’m so glad you mentioned this! Conversation can be exhausting for me. At first, I try to participate in the conversation. But after a while, I get tired and stop talking. I do my best to follow the conversation (which can be difficult with brain fog), but I usually just listen quietly and smile and nod. I love the idea about making notes for things you want to remember to ask family and friends. I can’t tell you how many times I’ve left a party or gathering kicking myself because I forgot to ask someone about something important. I think it makes me appear rude, although I may have been thinking about the person before and after the gathering, my brain goes dead during.
Thanks again for bringing this up – wonderful point! It will surely be added to next year’s guide 🙂
Reblogged this on Living in Dreamland and commented:
Linds has written a wonderfully comprehensive guide for making the holidays easier for your loved ones who have chronic illnesses
Reblogged this on Rag and Bone Shop of the Heart and commented:
I think my family knows/understands most of this, but I thought I’d repost it anyway- some good comments, too.
Oh my word, I am so, SO tired of explaining that I’m I’m NOT PREGNANT, OKAY??
This year, I forgot to take some medicine on Christmas eve, so before dinner I was scrounging around my aunt’s house for tums or prilosec or anything to help me be able to eat without paying for it. Unfortunately, my husband (with the best of intentions) just went and asked her. Which led her to make an open forum of discussion – anyone got medicine? The WHOLE FAMILY started a discussion about my new stomach problems and what they think of it all. I. Was. Mortified. Sometimes, the best way to help me, is NOT TO HELP ME. There’s a big difference between talking to someone about my health, and talking to EVERYONE about my health.
As a single pnreat of 2 young school aged children, my life was very busy, but as a stay at home pnreat I did have quiet times to myself. Our lives were happy before I and both my children of 6 and 7 years of age became ill suddenly on the same day 18 years ago. Under those circumstance, I suspect a virus or some kind of reaction to an anti-fungal paint I used in the bathroom just 3 days prior to the day that changed our lives. My eldest son has improved somewhat and is able to live independently and has about 40% of an average person’s energy level. My youngest son and I continue to get a bit worse every year. If I could change anything, I would have listened to my own innate feelings at the beginning of the illness instead of the misinformed physicians who insisted on us keeping up with a normal life. It was the wrong advice and I still have difficulty gauging what I can realistically accomplish at any one given time. In our situation I do believe it is either viral or some kind of trauma to the CNS due to toxic exposure.