You never expect to one day hear the words that you will live your life with a Chronic Illness, It is not your dream to be handed the news that your baby will live with a Chronic illness and you definitely don’t think that after getting both of those that you then would be told your spouse will live the rest of their life with Chronic Illness.
Don’t try to look up any information of families living Chronic together. Unless there is a secret library somewhere, I could not find one.
You can find a book on when you have chronic illness, your loved one has chronic illness or Chronic illness for your child.
While all of those can be helpful. They don’t help with the day in and out of doing life when more then one person in your home lives with Chronic illness.
I call my husband my caretaker, he is physically able to work and can do most things. My now 23-year-old also helps where he can with driving me around. Running to the store or doing some of the chores that I can not do.
While both live with Chronic illness themselves and the roles change in our family in the matter of days. They both also have limits that range depending of current stability.
To look at this further let’s look at the word Chronic illness and Debilitating Chronic illness.
- Chronic Disease is a disease lasting 3 months or more by definition of the U.S. National Center for Health Statistics. They generally cannot be prevented or cured, nor do they just disappear.
- Debilitating is something that seriously affect’s someone or something’s strength or ability to carry on with regular activities
In our home the Chronic conditions range and while I live with a Debilitating Chronic illness there are many times, I am the healthiest to take care of the others.
Here are some tips that I hope can help anyone that finds they are also in our shoes.
- Communication is very important in our family, even if it isn’t always polite or nice. We must keep the conversation going. Let’s face it, dealing with one person with Chronic illness is stress enough but add on 1 or 2 and who won’t have an argument or 3.
- A shared calendar. We have Google emails and calendars set up on our phones and anything thing we set up we put in the calendar is sent to the shared account. Now to help us out we color code the items we put in the calendar. If I am looking at the month, I can see anything purple or yellow are mine green is shared red is his.
- Medication list – you both need to have a updated medication list every time there is a change to your medication or your allergies to medication.
- This is important. We both can name a few of each other’s list. We can not remember each other’s list in addition to our own.
- Having others help where you can. Caretaker’s ware out fast. They may be working, have children, elderly parents, and now adding on the personal needs of another person.
- You add in that person has Chronic illness and must run to their own appointments, run to get medication’s and has special requirements to care for themselves. They most likely will put off taking care of themselves.
- Pre – prepped meals – We have found gold in doing freezer meals that we can prep the ingredients into a freezer container to make on a busy day. It keeps us from a drive through and it takes out the question of what we want. We have these 3 prepped meals which do you want? (Pre-prepped meal ideas coming soon)
- Knowing each other’s weakness and strengths. This is important in any relationship, but when you’re dealing with differing abilities you do not want to have your spouse carrying the trash out and leaving behind their cane because they had to use two hands. You are only asking for trouble.
- ((Take note here – some of the sedentary items can be just as dangerous left in the wrong hands. You may not be left with a spouse with a broken leg, but you may be left with an overdrawn bank account because the wrong bill got paid at the wrong time.))
- A backpack for car trips. – I take a stocked bag with drinks and snacks out with us. You need this for medication, for fatigue and dehydration. When you are on medications it is important to stay Hydrated.
- Fun – It is so import that you take out time for fun, it doesn’t have to cost anything. Play cards, watch a show, go for a car ride and listen to your favorite tunes, have friends stop by. Just make it a point to get out and have fun.
- Intimacy be it sexual or just building on fondness of each other do it. I hear often on support groups “I just don’t feel like it” how many things do we not feel like doing in life, that we end up doing and later say “ I am so glad I did!” this is one of those.
- Stay connected to your faith – I believe this takes a back seat for a lot of people who get busy with life. I believe even more that when we are fighting chronic illness, we use it as an excuse to not go to our place of connection to our faith. Find a way to stay connected. I myself do online bible studies and online sermons, whatever your faith do that.
- Give each other space even when we our in my husband’s Semi we take breaks from each other. I will get in back and put my headset on so he can listen to sports. Or if it is his time off, I will let him sprawl out in the bed and I will sit up front and read.
When you live Chronic together, sometimes it feels as though everything is about health, appointments and medication. It is so important that even though you are Warriors together, that is not all you are. You are both individuals with hopes, dreams, Passions and Love.
