Each year, millions of Americans celebrate the holiday season with much fanfare. It’s undoubtedly the best time of the year for most of us. But if you or someone you love is battling a chronic illness then this time becomes very demanding, both physically and mentally.
Did you know that according to the Centers for Disease Control, one in four Americans suffer from has a disability that can require a year of treatment or even more? These conditions may make it difficult to lead a normal life. This statistic increases to one in three Americans over the age of 65. These times are equally tough for caregivers.
There are dietary restrictions to navigate around. There are travel needs to tend to. There will be increased activity all around the house and carefully established routines and schedules, go flying out of the window.
All of these may seem like a busy phase of life for a healthy person. But for someone with chronic disease, this may become a stressful phase that can tax their health negatively. That said, it need not be so. That’s why the Caring Voice team decided to curate this complete guide for caregivers.
We will show you how to work your way around holiday season without it taking an emotional toll on the person who’s grappling with chronic illness. After all, you don’t want the happiest season of the year to be emotionally taxing because they could not participate in activities that they eagerly awaited for months. They can be terribly disappointed with the belief that they let down their friends and family who probably had to make sacrifices because of their health limitations.
Without further ado, let us dive into this guide that will help you and your loved ones feel less lonely. Use this as a resource to take care of your loved one, identify common stressors and deal with them in a more confident fashion. Let the holiday season be about joy and not guilt.
To make things simpler, we have broken it down into four sections and have tried to include easy-to-follow, practical ideas.
Establishing Boundaries – A critical first step
Come holiday season, the house will be buzzing with activity courtesy friends and relatives. It’s a great, warm vibe for sure. But you can take some advanced steps to ensure that the person with chronic illness can make the most of this vibe without it getting taxing on their health.
Communication is the key – One mistake that people often make is to not set realistic expectations for themselves and the relatives which leads to complications. Let’s communicate in advance about what’s possible for your body so that everyone who comes home is on the same page. What are your limitations, pertaining to food, activities and environment? Do you need to hit the bed before a particular time? Does your medication make you drowsy? What about loud music? Do not try to burden yourself with anything that interferes with your treatment. Advance communication establishes some fundamentals and everybody will be more than willing to work their way around these.
Giving into temptation – Many people hate to disappoint. This may be a version of people pleasing. But when you have a chronic condition to deal with, then it is important to not give into temptation or guilt. Do not feel guilty of turning an invitation down or refusing to entertain guests after a certain point of time. You are not being unreasonable. Instead, you are prioritizing your own health, which everybody will appreciate. Respect your own limits and everybody else will too.
Ask for help – Seek help. There’s nothing wrong with it. In fact, the people you love will consider this as an added responsibility and will be happy that you trust them with it. It doesn’t have to be something tedious mind you. Just some added reinforcement reminding you of your limits, or just some extra help getting the presents ready.
Practice these conversations – Often, we realize that conversations about health and illnesses in particular can be uncomfortable. So we skirt around it or just avoid it. That’s why practicing helps. There may be people visiting your space who are uninformed or even plain, insensitive to the condition you suffer from. Be assertive and inform them about your limits. Sometimes, even the people who are closest to us offer unsolicited advice. Don’t get frustrated. But do communicate about your state of mind.
Socializing done right – The second step
Holiday seasons can put a wrench in the works for an established dietary and medication schedule. That’s why socializing must be done right to ensure that logistical difficulties are avoided. Here are some tips.
Prioritize your nutrition – If you are heading out to a party or someone is visiting you at home, you can always pre-eat. While going out, you have the option to pack your meal with the basics. You can always indulge a little mind you. As long as you are not veering off too much from your nutritional plan, its fine. It’s a holiday after all. But, it’s important to avoid foods or beverages that may trigger a flare up. For example, patients with Pulmonary Fibrosis should avoid shellfish. People around you may or may not understand this. But you don’t need to lose sleep over it. Because you are the person who may have to suffer the symptoms if you eat food that’s disallowed for your condition.
Don’t get disappointed with timelines – You may be the last one to arrive at a party. But you may also be the first one to leave. That’s alright. Don’t beat yourself up as if you failed to complete an obligation. There is none. Your accommodations are your priority and there should be no need to justify them. That said, some prior planning with your caregiver can help you find a decent exit strategy.
Take Breaks – Don’t treat your holidays as a 100 meter sprint. It’s a marathon and you need to time your energy around it. If you sprint too hard and exhaust yourself in a day or two, you are likely to miss out on most of it. So be kind to yourself. Take breaks. Keep checking in to see whether you are trying too hard. If you feel exhausted, excuse yourself and rest. If you are at an event, ask the host for a spare room where you can rest until you feel better.
Stay connected digitally – Let’s face it. There might be days when your symptoms are at their worst and you find it impossible to attend an event. Don’t feel sorry about it. There are umpteen ways to stay connected digitally now. At times, even the primary caregiver may have to take a break. Allow them the ‘me time’ and use FaceTime to connect with your squad. It can be much better than sulking at home.
Symptom Management – The Third Step
Living with chronic disease becomes a lot easier if you are able to manage your symptoms effectively. To that end, we have curated a list of mobile applications that can be immensely helpful for everything from grocery shopping to getting discounted RX medications. Do check it out. For now, here are a few tips.
Don’t exert yourself physically – Pre-Holiday shopping tops the list of priorities for most Americans. We spend hours doing the mall crawl, or even make multiple trips in a day to find the perfect presents for our loved ones. While enjoyable, these activities are physically demanding and take a toll on your sensory stamina. If you are battling a chronic illness, these are very important components of your overall health. Create a pre-holiday to-do list and tick off the things that can be bought online instead of heading out. You might discover that you can save some money doing this. Also, if you really wish to enjoy, make a short mall visit and pick up a few things. Just ensure that you conserve your energy and stamina.
Take some extra time off – No matter how much you plan and try, the holiday season will be demanding on your body. One of the things you can do is take some extra time in the days leading up to it. This will not only allow your body to recharge, but also give you some alone time. You can chalk up and proactively schedule your rest times for the holidays during this break. Also, it gets you attuned to taking timely breaks for yourself.
Let rest time be about rest – The caring voice team has noticed that people tend to take scheduled rest breaks. But it’s rarely utilized for resting. We lollygag in front of the cell phone, scroll aimlessly on Instagram or watch Netflix even. That’s not rest. Rest season must have zero distractions and no stimuli that can affect it. This is not merely a rest for the body. It’s emotional rest too. It will help you deal with the stress and the demands, and allow you to bounce back quickly if you feel drained.
Plan as much in advance as you can – Only you understand how your symptoms limit your faculties and hence, it is important that you create a plan well in advance. For instance, some conditions cause long periods of brain fog and fatigue. Such conditions may open up brief windows of complete mental clarity though. Use such windows to do the planning. Even if it requires you to plan days in advance, do it. This will prevent the last-minute stress and give you some extra wriggle room to work with, even if you are experiencing a worst flare up a day or two prior to the event.
Be Mindful – Part 4
Our last part focuses on the importance of mindfulness and of creating the right mindset before the holiday season. Because in the end, it all boils down to how we feel inside our minds, doesn’t it?
Don’t beat yourself up – Often people with chronic illness tend to be self-critical. Change this to self-compassion by accepting that your needs are unique and it is important that you prioritize self-care over the needs of others. There should be no guilt in your mind even if you don’t feel festive all the time and crave a break. Don’t be anxious trying to please everyone around. It’s not necessary. It’s not health either. Be gentle on your mind and allow your body the rest it deserves.
Don’t be critical – Accept the fact that managing chronic illness will be rife with sacrifices. That’s what this is all about. But there’s a flip side too. Sometimes patients indulge a little too much and then are riddled with guilt about how they went overboard and it was not in the best interest of their body and the condition. That’s okay. People slip. Just accept it that you prioritized your emotional health for a change. You were happy about it and there’s no need to feel guilty now.
Make a priority list – A holiday season can be overwhelming with a million things to do. You might have done all these things yourself in the past. But guess what? There’s no compulsion to do it all again. Now you have a chronic illness to battle. You are a warrior. So you need to plan your schedule a little better. Make a list of events that you are supposed to attend and a list of the things you are supposed to do. Now prioritize it according to importance. Events and things that are low on the list can be avoided entirely. Use your best days for the most important things.
Spread Love – That’s what the holiday season is all about, isn’t it? Be kind. Be grateful. Do good and spread love. This not only makes you feel great, it will also reduce your moodiness and loneliness. Even tiny acts of kindness can do your health and wellbeing a lot of good. If you are immobile, you can send out notes to people who have helped you in some way through the illness. Start with your doctors.
Maintain This on New Year – The New Year is the time when we reflect on the past and make grand plans for the future. A person with chronic illness can go through an emotional roller coaster as they think about the healing journey. It can trigger a sense of loss for all the things they missed out on. Take a mindfulness break. Detach yourself from that moment and tell yourself that you and your body are healing at its own sweet pace. You have all the time to make new year resolutions. Just because the people around you are doing it now, there’s no need to feel pressured to do the same.
The Holiday season is magical. Don’t let the burden of chronic illness rob you of these wonderful moments. Use our guide to plan and navigate your way around this without it affecting your happiness or that of the people around you.