10 tips for Spoonies that help with living life while coping with a chronic illness

Updated: Aug 30, 2021


  Chronic illnesses can range from mild to severe, depending on the disease and progression and it is something that may never go away and will affect all aspects of your life. After you are diagnosed with a chronic illness, it is something that changes your life forever. Coping with a chronic illness can be extremely difficult. So, when you’re living with a chronic illness, doing whatever you can to help make your life a little easier is a must. Here is a list to help you cope with living with a chronic illness a little easier.   1. Prioritize Your Day Make a to-do list or set a schedule for your day. Level out your day and yourself so you are not wearing yourself out. It’s helpful to get stuff that is a big priority out of the way in the morning so if you are too tired by later in the day it's already done. If you are a busy person, make sure you organize your schedule so you are spacing out critical items like doctor appointments throughout your week and are not piling up on yourself up. I have had times where I have been so busy I will pile in 4-5 doctor’s appointments a week plus all of my other running around to do and work. Then, I forget to leave any room for downtime for myself. Then, because of that, I have set myself into a flare a couple of times. So, make sure you give yourself a lot of room in between your appointments and critical items that you need to get done as to not over-schedule yourself. Also, leave yourself some extra space in your schedule, just in case you do have a flair and need some extra downtime. 2. Slow Cooker

When you’re living with a chronic illness, each day is different from the others. Some days, you feel energetic and can do everything you need to do for the day and cook full meals. On other days, you might not have any energy and can barely get out of bed. Using a slow cooker will make things a lot easier for you because all you have to do is throw all of the ingredients in, then forget about it. The meal will cook itself without any further effort from you versus you having to stand for a long period of time and prepare a meal. I use my crockpot for most days of the week. I use a Ninja crockpot, which has settings for oven, cooktop, and crockpot and I love it. It has saved me many days. I cook everything in it from tacos, spaghetti, cilantro lime chicken, and pot roast. 3. Make a personalized travel pack or bag   When you’re traveling in the car, even if it’s for just a day trip or for a couple of hours, make a travel pack or bag. It’s handy to have your own travel pack/bag you can have at the ready so you can grab it on the go. Good things to have in your bag are: · Extra set of clothes. · Any meds you might need. · Food or snacks. It’s always good to have a protein bar or shake or any special foods or snacks you can eat. · Water and/or something to drink so you can take any meds and so you are staying hydrated throughout the day. · Any extra supplies you might need for personal care. I keep my bag in my car so I have it when I need it. Then, I have a separate smaller bag I keep my meds in. This helps me stay prepared for when I’m on the go. 4. Organize   Being organized saves you time and energy when you have a chronic illness and it can be hard trying to juggle it all. It's not easy to keep tabs on everything. I have learned, it is so much easier and less stressful if I keep track of everything and making lists. When you have a chronic illness, it is important to make your life as less stressful as possible and by organizing your day and writing things down it helps you do that. An organization app can provide a centralized place to help you make sure you don't miss anything important. I have checklists and to-do lists for everything. I use "Todoist: To-Do List & Tasks" (IOS/Android), as well as, "Family Wall" (IOS/Android) to manage my tasks and checklists. I have checklists for my reminders, family activities, prescriptions, and other medical supplies I need to refill regularly. I also have daily, weekly, and monthly to-do lists for my work and repetitive tasks.  What is helpful is I don’t have to keep making the same lists over and over again. It saves my list and I can add to them as needed. The great thing about having apps like these is that I can also share or link the tasks to family members. That way, it helps everyone stay on the same page and it helps my family help me with reminders, getting tasks done, and keeping things more organized and less stressful.  5. Communicate your needs Keep an open line of communication with your family, friends, and employer about how your illness is affecting your life, what your limitations are and how you are feeling from day to day. This will help them understand your needs. It can be difficult to communicate how you feel and your needs. As a person with a chronic illness, I know how hard it can be to tell someone that you need to take a break or that you're in pain. The people in your life can't read your mind so, to help them understand what your needs are, you need to communicate with them. That way, they can help you when you need a break or if you need someone to take over a task for you. I have learned I need to take a break, sit down or take small naps or take time to rest so my pain doesn’t get out of control. By communicating with my family, they understand and help me when I need to rest or am in pain. 6. Meditate   Living with a chronic illness and dealing with symptoms day and night can stir up feelings of depression, causing you to be preoccupied or anxious. Meditation practice can positively influence the quality of life of a person who is living with a chronic illness and can help you cope with your illness. Over the years, I learned that practicing mindfulness could help minimize my physical symptoms and help me cope with the anxiety I felt about my illness. The more you practice mediation, the stronger you will become, both mentally and physically. Even just a few moments of focused breathing and mindfulness can help you relax. Doing this in the morning can help you start your day, refreshed and more relaxed. Here are a few amazing books about mindfulness that I recommend. The Mind-Gut Connection By: Emeran Mayer Breath: The New Science of a Lost Art By: James Nestor 7. Find hobbies you enjoy   Finding a hobby you enjoy will give you something positive in your life. This helps people managing chronic conditions cope by giving you an opportunity to feel a sense of control. Doing things you’re interested in also offers an opportunity to experience your body in a different way. It gives you a bit of release and reprieve from living with a body that rebels against you. You can experience your body as something capable of making something beautiful or doing something that makes you happy. 8. Exercise/stretch   Exercise can help control symptoms and ease the stress that stems from being sick. Everyone has different capabilities and their chronic illness can affect them differently. So any type of movement is good. You must listen to your body and cultivate an awareness of what it’s telling you. There might be times when you won’t be able to do as much as you were the week before. Even movement that’s as gentle as breathing exercises or mild stretching may be enough to lessen pain and improve your energy. Do what is best for your body. If you can do a full exercise program, modified exercise, yoga, or even water aerobics or exercises, go for it. Find something that works for you and just remember to listen to your body. 9. Get plenty of sleep and rest   Getting a good night's sleep on a regular basis is important for maintaining your health. It’s especially important for people who have chronic conditions because it helps to repair the daily damage inflicted by the chronic condition. Sleep loss can prompt one's immune system to turn against healthy tissue and organs. Losing sleep for even part of one night can trigger tissue-damaging inflammation in the body. To help with getting a good night's sleep, get yourself on a regular schedule for going to bed and rising in the morning. Doing it at about the same time each day helps to regulate our body’s sleep pattern. Try not to eat too close to bedtime. Try to avoid caffeine and alcohol at least four hours before bed. Both caffeine and alcohol will affect your ability to fall asleep quickly.


10. Social Media

Finding online communities that you can relate to and who understand what you are going through can become a lifeline and help prevent social isolation. Having others who understand what you are going through can bring an immense amount of support and positivity in a world of disability and mental illness. For me, personally, right after I suffered my spinal cord injury, I felt lost, overwhelmed, and depressed until I found online support groups for people who were going through the same thing as I was. It completely changed my life, I had a whole new world of positive disability representation and support. It was like having a new family of people who were just like me. Having support groups like this and linking with others over other social media platforms are good outlets for information. Being able to connect with other people who have chronic illnesses and who are able to share information and link resources can be helpful.  

 


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