October 12, 2018 brought a doozy of a diagnosis to our home and family. Over the telephone on that day, two hours after a brain MRI, four days after meeting with the neurologist, he said “You need to immediately go to the ER to get seen faster. You have a large tumor pressing on your brain stem. The brain stem is shifted in such a way that you could die.” Those works brought significant trauma and anxiety. A few hours later in the ER, I met with a neurosurgeon who said “Yes. You need surgery asap, but the best brain surgeon in the hospital is on vacation. He left yesterday. I do spine surgeries, and I’m the best at that. I imagine you want the best at brains.” Funny how he made me laugh in my worst life moment. My response, through tears of fear but also a giggle, was something like “Ok. As long as I don’t die, I can manage and be patient. I’ve managed this long.” He sent me home on powerful steroids, and I met with the brain surgeon a couple of weeks later. That surgeon didn’t give me new information, but between the two neurosurgeon doctors and the ER doctors I’d met with, I had enough information to realize this was serious, and that my life and the lives of my husband, children, and my parents’ too, may forever be altered.

Praise the Lord none of the worse case scenarios came to fruition. Praise the Lord for fantastic medical care and therapy. I’ve been in therapy of one kind or the other since. While none of the worst case scenarios came to fruition, our lives are still changed. I’ve changed. My hearing has changed. My sleep has changed. My balance and fatigue levels changed. My ability to navigate groups and crowds has changed. Some of my roles as a wife, mother, and home based business owner have changed. How I can travel has changed. How I use my time has had to change to accommodate hours of PT, or facial OT, or trips to Ann Arbor, MI for functional Botox treatments, or to consult with a make up artist.

Praise the Lord for all kinds of help in those weeks leading up to surgery, the weeks I was in rehab, and the months afterwards. For many months, we had meals sent by church and friends. I had stored up freezer meals, too. Friends helped with transportation for me to therapy and appointments, and for the kids’ activities to give my husband a break.

But what about when all the help ended?

How does a family with the impact of a new chronic illness manage all the facets of home life?

Even after more than three years of dealing with this life changing diagnosis, we are still doing these fourteen tips. It’s okay to use services offered by companies! It’s okay to use help that is offered! It is okay to ask for help, or to decline invitations. These tips are about pacing yourself for low energy days.

Be sure to count your costs, sacrifices, or impacts of choices. No matter what you choose, there are some. They might not all be financial, but each choice comes with benefits and consequences. You decide which ones you can live with.

1. Recognize that everyone in the family household is affected, and some help choices might be for them, not just the one with the chronic illness.
2. Schedule your USPS mail package pick ups so your body isn’t burdened by standing in lines and crowds while holding packages and boxes! Buy a postage scale and label makers, and employ websites like PirateShip or Ship dot com to put your own postage on your packages. Be sure to leave extra time for weather or other factors for when your packages are picked up by the mail carrier.
3. Sign up for grocery services for grocery pick up or delivery in your area. Even grocery stores, rather than big box stores often have these options.
   a. We primarily use Shipt.com for grocery delivery in our area. You and I each get a $10 credit to our yearly membership for using this link, as there is a yearly cost for Shipt. It is a good idea to tip your shopper, so factor those costs into your grocery budget. Shipt now offers preferred shopper choices, and we love the shoppers we’ve selected. Shipt allows for you to pick alternate items if your preferred item is out of stock. My Shipt shoppers call me at home rather than texting or calling my cell and have been great about accommodating for my health issues, even packing grocery bags lighter for me to carry them into the house. Even during these Covid times, they’ve been careful to social distance, mask, and have respected all of our choices and directions. I choose when my order is delivered based on what is best for our routine and when I’m available to talk on the phone around therapy.
   b. We also use Instacart for our monthly Costco orders. We’ve not been as pleased with fewer customer service options, but for me, it is still a better option than being in the store. I honestly find I spend less money on our household and food budgets, too, with my shoppers sticking to the list.
   c. We order fish a few times/year or even monthly from the Wild Alaskan Co. here. Use this link for a $25 credit on your first order and for my next order. We also order cow or pork shares from local farmers, and stock our freezer with this meat supply as finances allow.
   d. Occasionally I forget an item and have to send the hubby anyway. Budget those accidents into the plan. Recognize that even using shopping services like Shipt or InstaCart, you are still the one providing for your family and your household, and in control of what comes in and out of your home.
4. Do online ordering with an assigned pick up time for local farms or businesses too! We also use Amazon Prime
   This post and clicking on this link may contain an affiliate link. An affiliate link means that, at no extra cost to you, when you click through a link and make a purchase, I may receive a small commission which allows this blog to remain active.
   and other online sites for delivery of household goods, supplies, or animal/pet care.
5. Maintain a routine for any other errands or appointments. We keep dog grooming, hair cuts, and dental/vision/medical appointments to Thursday afternoons or Fridays as much as it is within our control. Sometimes it’s not in our control and we have to adjust, so choose back up times in those instances.
6. Double batch cooking on your energetic days. Plan to freeze one of those meals for a not so good or busy day.
7. Hire babysitting help or housekeeping services as needed for medical appointment days or to give your body a chance to rest.
8. Last summer we hired yard maintenance help, and since our DIY talents are even more limited now, we also hire for home maintenance help.
9. Shut off phones and notifications. Close out of social media. You do not have to be available all the time to those outside your household. Have an emergency plan in place for family members to reach you when something urgent or emergent comes up, for instance, a text and immediate phone call might alert you or them to needing an immediate response. Otherwise, the call or text really can wait.
10. I still utilize online church services for my fatigue or headache days. I don’t try to be everywhere any more, and neither should you. I’m thankful for the option! It’s imperfect, yes. But so is having a chronic illness. This is about making the most of what is available.
11. Set boundaries with requests from outside your household. Sometimes that even means your family. It’s okay to say no! It doesn’t mean you’re lazy. It means you recognize you can’t be all things to all people. Newsflash: You couldn’t before your chronic illness diagnosis either, even if you thought you could.
12. If you have children, bring some homeschool lessons or music lessons, etc to the home via tutors or online tutor. It might not be ideal, but most choices are not anyway. Acknowledge what is not ideal, and find a way to work through it. You getting exhausted from being a rat on a wheel isn’t ideal either. For instance, I cannot drive in bad weather or at night. I also cannot walk in those circumstances and maintain balance. The choices for those times are either that they have online lessons, have at home tutors, or my children have to skip certain activities if my husband also has to work at those times.
13. Multitask activities. Plan that an off site tutor or activity take place at the same facility or general location as an appointment or other activity to condense time away and reduce task fatigue. This is definitely the trickiest tip, and not always doable.
14. If you need to work, can you find a way to work from home?

There is no need to feel like you are less for using services. You are not lazy for recognizing limitations or for needing help or for establishing what the family priorities are.

My final pieces of advice are this: Do what makes your situation as flexible as possible. Things come up, so establish margins and boundaries in your life as much as possible. If you have children in the home, don’t rely on them to take over household chores and maintenance. While they may be part of the “Home Team” and maybe chores should be part of home life, they should not be expected to be the solutions either. They are also struggling through the chaos chronic illness brings. The advice “Just get your kids to do it.” is such horribly bad advice. Consider, instead, bringing a counselor onto the team of “advisors” for how to manage your family and you sort out new roles. This is one thing I wish we had known we’d need!

What is your advice?

What are your top tips or for managing your household with a chronic illness?

PS. Want inside info on Lilla Rose hair jewelry sales and upcoming events?
Join me on my LoveLeavingLegacy Facebook page
or
Where I Now Blog About Lilla Rose Hair Accessories & Products, Hair Styling, and Hair Care On Sassy Direct.