Do you ever think of yourself as a caregiver?
Not for your children. Or aging parents. Or for any adored animals. But as a caregiver for you- a person with a Chronic Illness.
To be honest, I hadn’t either until recently. When you’ve been so sick, for so long, the unimaginable becomes familiar, everyday even. Doesn’t it? We get on this treadmill of illness where we do what we have to just to survive the day. It’s all completely overwhelming, this world of medical this and that, but that’s where we live. Just making it through the day and taking care of the family is enormous for most of us.
Quality of life is difficult to maintain. Our daily routines are so incredibly challenging that we forget what it’s like to be well.
What does it feel like to be well? What’s a day without pain like? Who can remember, right? It’s important to remember that not only are we patients (many of us with multiple Chronic Invisible Illnesses) but also caregivers ourselves. It’s difficult to dig deep and be self-supporting. You’re not being selfish when you take care of yourself. You’re being smart and you’re telling those around you that you are of value.
Be kind and patient with yourself. Remember, you teach people how to treat you.
The hard part for those of us with Chronic Invisible Illnesses of course is that the illness follows us around like Pigpen’s cloud. A caregiver of another can go home and recharge after a long day. We don’t have that option.
How do you keep from hitting bottom?
Do you exercise? Write? Play music? For me it’s a daily yoga practice, meditation, and long husky hikes. The length of time depends I’m able to participate in this (as you all well understand) on my level of fatigue of the moment. (I have Microscopic Colitis, Chronic Migraines, Hashimotos,& CNS issues to name a few challenges.) I find though the greater my stress, regardless of its source, the greater my need for each activity.
How about you? Do you have a restorative go to? Is there something you do every day that’s just for you? I hope so.
I spent three months this spring doing hospice care for one of our greatly loved huskies. Being the caregiver for a bossy, sassy husky princess was one of my life’s greatest honors.
But it was exhausting. And profoundly so. I’d forgotten how hard it is to REALLY take care of someone at such a high level. My son is in college so baby season is a long time ago for us.
I learned much about care during that time with her: it’s important to just sit. Just come and be still. Words and touch aren’t even necessary. “Just drink tea and look at me. That helps with the pain,” she seemed to say.
So much talk at the end of life is about death. At our house we went a different way. We kept things as normal and scheduled as possible. Both pups got their early morning walk (FYI: the “pups” are 16 years old. And they are well tended-to NOT spoiled. Just to be clear.). Sierra walked a mile the morning she passed away. It was what she needed. What all of us needed to be honest. I learned to follow her lead and keep things as simple as possible for the rest of us.
How could doing less make me so very, very, tired? But it sure did. Staying on top of my own health issues at that time was incredibly difficult.
Rest and hydration are always at the top of my wellness list. They were for Sierra in her final days as well. Do you find it difficult to maintain both when the world with all its activities and responsibilities of work, family, school, church, etc. tug at you? Why is the simple so hard?
As those of you with dogs may have guessed our alpha husky, Khensu, isn’t handling the loss well. His confidence has evaporated and he seems lost without his feisty, little woman. They were together from the time they were 15 months old and were never more than a few inches apart. Although Khensu was there when she passed away, now he’s out of balance. I totally understand. Longer walks help us both -for a little while anyway.
I’ve made it a priority to up my self-care. I encourage all of you Chronic Invisible Illness Friends to do the same.
One thing that has significant value and impact on your daily life in the joy and happiness department and make it a daily habit.
Our illnesses aren’t going anywhere. Is there anything special you can do for yourself today? What would help you feel more like a human and less like a patient?
Thank you Carly Carter for such a wonderfully insightful blog post! You made me think about a tremendous amount with your writing. You are so very much appreciated!
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Some links Carly would love for you to take a look at are: