The idea of how to start this blog post comes to me as my husband, Tim, attempts to rub out muscle knots in my lower back, buttocks, hips, and legs. The tightness of the knots have rendered me practically immobile since Friday afternoon triggering a flare that has lasted since then. It’s nearly midnight on Sunday and the poor man has gotten hardly any sleep since Friday. Regardless of the little sleep he has gotten, he’s committed to winning the battle against these damn muscle knots. We both know he will not be able to fall asleep until either I’ve fallen asleep from utter exhaustion or complete relaxation. He’s determined for it to be the latter. No matter the how I get to sleep, he will stay awake until it happens. His love and concern for me runs that deep.
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Accepting My Caregiver’s Help
Even though the idea of this post came to me Sunday night, I’m writing it the next morning while Tim is driving the kids to school. He didn’t fall asleep until well after midnight, and was awake as soon as the alarm blared at 5:40 am. I was awake already. The night brought little sleep with it as it has repeatedly done since Friday. Knowing this, Tim assures me it’s okay I stay in bed while he gets the kids ready and off to school.
It was no secret we were both plagued with exhaustion. I might have been the one unable to sleep because of the pain and night sweats, but he was awoken each of the same dozen times. A whispered, “Honey, are you alright? Are you sure? Do you need anything?”, drifted across the quietness of the night with the sincerity of making sure I was okay. Convinced I was indeed okay, he settled back down to sleep only to repeat the cycle soon after.
No, I don’t feel guilty.
A year ago I would have been weighed down with the heaviness of guilt at having kept him up all night and then him getting the kids ready for school by himself the very next morning. Coordinating five kids for school can be a little chaotic and compared to that of a circus act. It’s even more so when doing it solo. There’s always an article of clothing missing no matter how many times you told them the night before to get their stuff ready for school. A missing lunch box or homework assignment or [fill in the blank with whatever missing item]. They are not loud, thankfully, at this time of the day because our kids are not morning people. It takes them time to get up and moving. I’ve always loved this about them. It makes me feel more human and less stressful to be wide-eyed and alert before the crack of dawn.
No, I didn’t feel guilt this morning. Even when he stumbled out of bed and into the bathroom to start the day when the previous day ended less than six hours ago, I did not feel guilt. Guilt of what? Caring for me? Loving me? Expressing his concern? I cannot feel guilt over the love my husband has for me because that is what his caring is – love.
Why I don’t have guilt
This care and attention he gives to me when I’m needing it is why we are in love and married. When one of us falls sick or unable to perform our usual daily tasks, the other picks up the slack. It’s not because we have to do it. No one is forcing us to step in and take over when one is unable. We do it because we are ONE, and we love and care for one another deeply.
My tolerance to physical pain is high, and my ability to push through suffering is a practiced skill. I do what I have to do with what I have in that given moment. I don’t complain. I simply do. The suffering will pass with time, and until it has passed, I do the best to my ability.
Occasionally, when my body slams against the wall of inability and exhaustion with an abrupt force to that of a car in one of those crash tests, I am no longer able to push through. When I start complaining of an ache too great to silence, the pain threshold has been breached. My body is unable to move forward on its own and starts to shut down for full recovery. These periods of rest could be a day or more; there is no way to determine how long it will take. However long it will take, I know I will not be suffering alone.
My caregiver feels my pain, too
Tim feels this pain. It may not be the same physical pain I am experiencing, but it’s a magnitude of pain to which only he can describe. He is my friend, my love, my husband, my partner in this crazy, wonderful life given to us to which we are able to share and experience together. But he is also my caregiver, the one who sees the light and dark sides of my illness. The darker sides that would make others turn around and run. Him seeing me endure the agonies of my illness leaves him feeling helpless and tormented with the inability to take it away. Caring for me and easing my discomfort enough to sleep or pulling me from the darkest recess of my mind is how he relieves his pain. How can I deny him that appeasement? That intake of sweet air when you’ve been holding your breath for who knows how long? I cannot, and will not.
This is why I do not feel guilt when he wakes up to take care of our children while I stay in bed after we’ve both had a night of broken sleep. I may be staying in bed to get relief, but, in his own way, he’s also getting the relief he needs.
You will get there, too
You may not be at this point with your caregiver, and that is okay. It takes a lot of forgiving and loving yourself to allow your caregiver to take care of you without the albatross of guilt pulling you down. It’s a weight to be unloaded bit by bit over time. And as you relieve yourself of this weight, you will find the love you have for yourself – and your illness, too – buried underneath the rubble. Your love will be unrecognizable at first, and will not shine right away, but if you give it time and nourishment, you will see it in all its glory. You will come to embrace and cherish that love for yourself while allowing others to love and care for you in return. It is truly the greatest gift you can receive. Don’t deny yourself that love and happiness.
I’m reminded of a paragraph from a memoir, Maid: Hard Work, Low Pay, and a Mother’s Will to Survive, I read over the weekend. The author, Stephanie Land, is struggling with doubts of being the mother she wants for her daughter. In a moment of despair and loneliness, she misses her dad. She says:
“Whenever I felt the pain of the loss – my chest caving in right at the hollow spot in the center – I found it was best to stop and wait, to give the feeling a moment to pass. The pain didn’t like to be ignored. It needed to be loved, just as I needed to be loved. As I sat in my car…I breathed in and out, counting to five each time. I love you, I whispered to myself. I’m here for you. Reassurance of self-love was all I had.”
From time to time I feel as though I’ve lost a part of myself to my illness. That’s when I remember that it’s okay to grieve for that part of who you once were. But don’t fail to embrace, and more importantly, to love who you are now – in this given moment of time. As Stephanie says, self-love is all we can have, and we must love ourselves and show that we love ourselves, in order to thrive in our lives of chronic illness. By loving and embracing ourselves, we can forgive ourselves, too, and start receiving the help our caregivers are more than willing to give.
P.S. You must understand that your body does not like this anymore than you do. This is not something I learned or thought of on my own. It was one of the many realizations discovered in Tami Stackelhouse’s book, Take Back Your Life. She is a beautiful person, and one I’ve come to admire over the past year. I value her more and more as she has taught me to love myself – body and illness, too – with each book, video, and post she has made. Tami is truly a loving person with a heart to help everyone she meets and has yet to meet. She will always hold a special place in my heart as the person who taught me to love and care for myself as who I am.