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Self-Care Strategies for Chronic Illness - Pinecone Papers

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7 Self-care Strategies to Cope with Chaos When You Have a Chronic Illness

Last Christmas, my in-laws came to spend the holidays with us. Two weeks later, my son moved away to college. And all of this was going on while I was in a lupus flare.

It was a crazy time, to say the least! While trying to give my in-laws the best holiday possible, I was also coping with the bittersweet heartbreak of sending my son and his girlfriend off to college. Even the joyful time spent with my family was leaving me feeling drained. Pile on the exhaustion and pain of a flare and things were feeling a bit overwhelming.

As much as I wanted to help with decorating, shopping, baking, organizing, packing, cleaning…. it was really going to put me in a sorry state come Christmas morning if I didn’t find some balance between taking care of myself and taking on some of these tasks. So, I started putting a plan into action.

It’s taken me several years to develop a strategy to keep myself afloat when things get really nuts and I’d love to share ways you can help take care of yourself, too.

Self-Care Strategies for Chronic Illness Chaos!

1. Forgive Yourself

You’re probably wondering where the tips on organization and task management are, but we’ll get to that later. The number one, most important, MUST DO on this list is to give yourself a break. Seriously.

Stop feeling guilt and shame over the fact that things got really, really chaotic and you now need to navigate some choppy water. If you can’t forgive yourself at the end of all this, you’ll carry a massive stone of imperfection around your neck when you should be patting yourself on the back instead!

I know, this is waaaaaay easier said than done. I totally get this. I struggle with it all the time. This is why it’s number one on my list. So I’ll try to give you some actionable ideas on how to forgive and move on.

  • Be mindful of your self-talk. Every time you think things like, “I’m never going to finish this” or “I wish my life was easier”, you’re slowly tearing yourself down. When these thoughts come up, try to follow them with a positive affirmation. Example: “I’m never going to finish this. But, that’s okay because I need to cut myself some slack right now!” or “I wish my life was easier. Even though things are crazy right now, things will get better. It won’t be like this forever.”
  • Talk through it with someone. Don’t bottle all of your anxiety and guilt inside. Talk to a trusted loved one and process your feelings. You’ll probably find they are not quite realistic and your perception of the situation might not be as dire as you see it right now.
  • Set realistic expectations. If you keep assuming you can get through this busy time at 100% energy and focus, you’ll set yourself up to fail and then you’re right back on the guilt train.
  • Give yourself some love. Pretend you are talking to a friend who is going through this hard time. What would you say to them? How would you comfort them? Now say those things to yourself.

Self-Care Strategies for Chronic Illness brene brown quote

Forgiving yourself will bring you into a more positive mindframe and you’ll feel less victimized by your situation. In the end, that positivity can really keep you going.

2. Set a Schedule

I know making a schedule can feel a little restrictive for some of us, but I don’t mean you have to plan out your whole day here. Just focus on the most important things to make sure you are putting self-care at the top of your priorities.

  • Get good sleep. If you’re like me, you absolutely must have a solid chunk of sleep every night or you run the risk of making your illness flare or worsen. Set a reminder on your phone for every night about an hour before you want to go to sleep. If you’re feeling exhausted during the day, set aside time to nap.
  • Take your medicine. When things are chaotic, it’s really easy to forget your meds. You probably have this built into your morning or evening routine and it’s second nature to you. But if you’ve got family staying with you or your schedule is out of whack, it can be very easy to forget to take your meds. Set a schedule and some reminders.
  • Stick to your physical therapy and exercise routine. Unless your doctor recommends taking a break (because of a flare or injury), try to stick to your routine. It will be pretty tough to get back into it once things calm down!
  • Honor your “me time”. If you regularly sit down at night to write in your journal, or you have a favorite TV show that brings you joy and helps you escape your pain for a little while — make the time to slip away and enjoy these things. It’s ok to need some space for yourself! For many of us, this alone time is vital to recharge and feel grounded.

3. Reflect on What’s Important

What really needs to be done and what can wait? Sit down and make a bullet list of all the things that you want to accomplish. You can make this a task list or a goal list – whatever makes the most sense to you.

Now, go back and rank your items.

  • Circle the bullet of any item you think MUST get done.
  • Star the items that should get done.
  • Cross off the items that won’t kill you if they drop completely off the list.

*Feel free to use other symbols or notations that make sense to you!

Once you’ve ranked the list, put it away for a few hours and do something else. It can feel a bit overwhelming to see all of those items stacked up like that! Take a break and refresh your mind.

Next, prioritize all of your “MUST” items. Number everything starting with the most important item as #1. Don’t fret too much about the numbering – you can label two items with the same number if you can’t decide which is more important. The object of this activity is to just have a big picture to look at.

If your list is full of items you know your partner or family will be involved with, I recommend talking through the list and prioritizing things together. It’s really easy to overload yourself and it helps to have someone look out for your best interests here!

Now you’ve got a handy list to work from, including items you have said you’ll NOT accomplish. Let that list serve as your guide going forward! Here’s an example:

Self-Care Strategies for Chronic Illness moving list for bullet journal

4. Ask for help

This one may seem like a no-brainer, but I know how hard this can be. I really struggle with asking for help. I mean, I do ask for little things like I’ll ask for someone to fetch something in the kitchen if they are headed that way, or ask my husband to let the dog out if I’m having pain in my legs and I know he can get up faster.

But asking someone to wrap all the presents or spend significant time doing something you are really, really looking forward to doing yourself? That’s the hard part right there. As soon as you ask, you’re either feeling guilty or disappointed. Or, you’re boarding the double-decker bus of guilt+disappointment. Next stop? Shame Town.

Instead, get creative and shed the guilt. Here are some ideas on how to ask for help.

  • Trade services or time. Is there something you can barter with so that everyone gets a little something? Perhaps you are struggling with standing for long periods or walking. Could you help a friend with her budget or crochet her a new a hat while she runs errands for you?
  • Give people options. Remember that list we made above? Create another version, but this time with two columns. Share the list with your family and friends and ask them if there is a specific item that would be easy for them to help with. It could be super easy for someone to pick up wrapping paper for you if they are planning to go out and buy some themselves!
  • Make it fun. Getting a group of friends or family together to help with a big project can actually turn into a fantastic time. Cleaning, painting, rearranging and purging are all great group activities. Need to declutter the kitchen? You’ll be surprised at how many people enjoy pairing up containers and lids that aren’t their own! Were you planning to bake and decorate cookies for everyone as gifts for Christmas? Give the gift of time instead and throw a cookie decorating party! Ask everyone to bring baked cookies (either homemade or store-bought) and then set up your table with all the frosting and decorating items. Sit back and join the laughter while everyone makes their cookies and enjoys an afternoon together.

5. Set Achievable Goals

While you realistically need to pull back and delegate some things to other people, you also need to feel productive and accomplished throughout this crazy time. Keeping your limitations in mind, you’ll want to set some goals to keep you moving forward.

Start with some weekly goals. For example, maybe you have family coming to town for a week this summer and your kids are going to camp the very next week! To prepare for both events, write a couple of goals on top of a page in your journal or planner (only pick 2-3 max).

Break those weekly goals into daily goals. You can grab items from the list you made earlier! I recommend only planning for 5 days to give yourself a buffer. Also, you can always combine goals if you have a bit more energy than you anticipated one day!

Here’s an example:

Self-Care Strategies for Chronic Illness weekly goals for bullet journal

Breaking up tasks into weekly and daily goals instead of just trying to work from a giant “to-do list” can help you stay focused and give you a sense of accomplishment at the end of each day.

6. Dedicate Time to Recharge

Chances are, no matter how well you’ve followed the strategies above, you’re still going to feel a bit overwhelmed and tired. During this chaotic time, it’s really important to take some time to do something you enjoy.

Read, take a bath, watch your favorite movie, or have dinner with a friend. Whatever it is, be sure to go into the activity with the intention of letting go of any worry or stress. Don’t think about all the things piling up on your desk, or the tasks you should be doing. Try not to worry about the next day. Just let the “me time” activity recharge you!

7. Celebrate Your Victories!

Once things settle down, the chances of you bouncing back to a “normal” state are pretty slim. You’ll find some comfort as your routine “normalizes” but your body may be a little worse for the wear. It’s during this time that it’s absolutely vital to take some time to reflect on all of the amazing things you accomplished and worked through during the busy, chaotic time. If you’re already keeping a gratitude log in your bullet journal, you could add to that — but I recommend an entirely new activity just for this.

Find an hour or so to sit somewhere comfortable with your journal (or if you aren’t journaling, just grab some paper and a pen) and make sure you’ll not be interrupted.

It’s time to write yourself a letter!

Start off by addressing yourself, then summarize the busy time you just went through as if you were writing to a friend.

Dear Jess,

Wow – I can’t tell you how crazy the last two weeks have been! Brian’s parents were here visiting for Christmas and it was the first time we have had them spend the holidays with us! On top of that, the kids got approved for family housing at the university at the very last minute and we needed to get them packed up and moved across state on New Year’s Day! It was nuts. This was a really hard time for me because right before my in-laws got here, I went into a flare.

Next, tell yourself all of the incredible things you accomplished during this time — big and small! Write it in sentence format or as a bullet point list. Here’s an example:

I was really scared of how I would make it through all of this – especially with how sad I was about having to say goodbye to the kids. I cried buckets. But, surprisingly, even through all of the hard stuff and the flare pain, I was so impressed with how well I got through it all! Check out all the stuff I accomplished!

  • I stuck to my sleep schedule the whole time! I told everyone how important it was for me to get good sleep each night, so we all made an effort to wrap up each evening about an hour before I went to bed. It was great because everyone else was tired, too! 🙂
  • I asked for help with shopping. I was so nervous about asking my mom to help me with this, but since she was going shopping anyway, it worked out perfectly!
  • I hosted a cookie decorating party! The kids helped me with this, which really made it a lot easier since I couldn’t stand for long periods. The family had such a great time and they all left with some really cute cookies.

Now, end your letter with some well-wishes for yourself and sign it with love. If it’s an actual letter, fold it up and keep it somewhere special.

The act of celebrating and documenting everything you accomplished is a great way to reflect on the positive things that happened. Next time things are getting crazy, you can pull this out and read through it to boost your courage and remind yourself that you can do it!

I hope some of these self-care strategies for chronic illness resonate with you and I’d love to hear your own tips for getting through chaotic times!