Monday, November 18, 2013
Wednesday, November 13, 2013
I swear I have illness PTSD (post traumatic stress disorder). Whenever I feel a blip in my level of pain, I panic and go to the never and always places. You know: I'm never going to get better. It will always be like this.
There is no room for reason when I'm in this state. I tighten up physically and emotionally like an armadillo protecting its soft underbelly by rolling into a ball and only showing its armor to attackers. Somewhere ancient I learned that this is what self protection needs to be. And of course, constricting is just the opposite of what will help me ride through a pain episode.
But when I'm in this state, I lie curled and unmoving. Nothing goes in or out. And any external requests of me are just too much to bear. An armadillo can't go food shopping or attend business meetings or be distracted by conversation or TV. All my energy is invested in staying still and isolated.
When this happens, I cancel whatever can be cancelled. I tell friends and family who call that I'm in hibernation mode. They understand and leave me alone. I phone into meetings rather than have to dress up and drive somewhere far away from my burrow.
Richard, my SO, does the house chores and reminds me that I will get better. His voice does get through my defenses. It feels like honey slowly dripping in and delivering a few touches of sweet hope.
Sometimes that's enough to help me remember what I always forget -- that the pain will go away. That's the pattern. And I have better tools to use than tightening. Sometimes I can start to use the things that do actually work. Like breathing and paying attention to each breath. Or walking slowly. And asking for help - help that reminds me of the bigger world and my place on it, a place I will soon be able to occupy again.
So I unfurl and find more honey and try to learn to hope, one more time.
(btw this post is included in this month's collection of patient blog posts which is up at Getting Closer to Myself )
Wednesday, November 6, 2013
From an article on ABC News:
How Cancer Affects Your Relationship by Casey Gueren
"Jennie Bushnell and her husband Dan had been together six years when she was diagnosed with Hodgkin's lymphoma. Since she was pregnant with their second child and they chose to delay treatment until after the baby was born, they didn't tell their families right away.
"We were each other's only confidant," says Jennie. "We were each other's only shoulder to lean on, because we didn't know what our future would be at that point."
From then on their bond got even stronger—through endless doctors appointments and six months of treatment.
According to new research, leaning on your partner during this time really can bring you closer. Among couples facing early-stage breast cancer, dealing with the illness as a team was associated with greater intimacy, according to a recent study in the Journal of Social and Personal Relationships.
From Illness to Intimacy
In this particular study, pairs who talked about how cancer was affecting them as a couple and truly listened to each other had greater intimacy at the follow up. That was also the case for Jennie and her husband who were spending even more time together than usual given all of her doctor's appointments. They talked about the cancer, practical things like insurance and wills, the new addition they planned to put on their house, and the vacations they wanted to take with their kids.
"It was a distraction, but I think we felt life if we thought long and hard enough about all the good things, they would just fall into place that way," says Jennie.
Aside from planning, they also retained their sense of normalcy—another factor that predicted intimacy in the study......"
In my experience, couples who have lousy communication patterns before the illness continue to have lousy communication after the illness.
Unless they actively, consciously learn how to change their communication style to one in which there is greater listening, greater empathy, greater honesty, and less emphasis on only problem solving and at least a few less hours of TV watching (unless, of course, it's Showtime's Homeland).
But with attention and some guidance, couples can indeed become closer through illness than they were before illness entered their lives.
What has been your experience?
Thursday, October 31, 2013
Announcement of our upcoming webinar. You still have time to register:
Leading In-Home Senior Care Company Recognizes Family Caregiver Month with Public Webinar
The next installment in Home Care Assistance’s Healthy Longevity Webinar Series will be presented by Barbara Kivowitz and Roanne Weisman, co-authors of the book, In Sickness As In Health: Helping Couples Cope with the Complexities of Illness, on Friday, November 15th at 11am Pacific, 2pm Eastern.
Palo Alto, CA (PRWEB) October 22, 2013
Home Care Assistance, North America’s leading provider of in-home care, is dedicating the next webinar in its widely acclaimed Healthy Longevity Series to Family Caregivers Month. The public webinar, “For Couples and Caregivers: Coping with the Complexities of Chronic Illness,” will be held on Friday, November 15th at 11am Pacific, 2pm Eastern. Presented by Barbara Kivowitz and Roanne Weisman, the webinar will cover what happens when chronic illness becomes part of a relationship and how to balance the roles of caregiver and loved one to ensure optimal support. Using real families’ stories as well input from experts, the co-authors will share practical guidance for family caregivers on navigating and balancing the medical and relational mazes that often develop when one is diagnosed with a chronic illness.
Space is limited, so reserve your seat as soon as possible by registering here:https://www3.gotomeeting.com/register/285494694.
Tuesday, October 15, 2013
I am the patient, the ill partner, the survivor. Call me what you will. I am the one with a chronic pain condition. A lot of the time I feel OK and go out into the world to work, buy food, or just go for a walk. Sometimes I feel like broken glass is sloshing around my insides, and I become very quiet while all my concentration goes into seeking a position in which I can feel a bit of relief.
Richard, my sweetie, orbits around me and asks me how I'm doing. He is attuned to my pain state like a sunflower is to the sun's rotation.
In March, Richard had open heart surgery for a congenital valve defect. We knew this was coming; we just didn't know it was coming so soon.
For ten days, Richard was the bonafide patient, in the hospital, in a greenish hospital gown, with tubes in his chest and in his arms. Nurses checked his vitals and his heart performance many times a day. They adjusted his meds as his symptoms changed. I sat on the couch in his room for 12 hours a day. I had my pain, but he had become the real patient. And I hovered around him, alternating between asking him how he felt and attempting to simulate a quiet calmness. I handed him the phone so he could order his meals. I celebrated when he took his first shower. I paced the hallways by his side as he did his daily corridor walkabouts. And I worried - just like a caregiver. We had switched roles.
A few weeks ago we were invited to speak at the Multiple Myeloma conference about my book: In Sickness As In Health: Helping Couples Cope with the Complexities of Illness. At one point we told this story of how our roles got switched when Richard had his heart surgery.
I found myself saying to the audience of survivors and supporters that I really didn't like the role of caregiver. While this got a lot of smiles and some laughter from the caregivers in the room, it was no laughing matter. I had grown accustomed to the perks of being the patient -- the attention, the help, the extra doses of love.
But even more importantly, I did not like the helplessness caregivers feel. I could comfort Richard, but I could not make him better. I could not take away his pain and worry. I could bring him food and help him shower and love him with all my might. But I couldn't make him better. Time and his own body's strength and his doctors' guidance got him better. My love made it more bearable at times, but it didn't heal him.
Richard sometimes says, "If only my love could cure you..." Now I know what he means.
This post has been included in this month's PFAM (patients for a moment) collection. You can see the entire collection at Life With RA Is A Pain
Thursday, September 19, 2013
There are days when I look pretty good but am actually feeling really lousy. My hair shines, my teeth are white, my skin is smooth; but that's just the surface. The inside, consisting mostly of pain and darkness, is hidden by that misleading surface light.
The pain comes and goes at its own pace and seems not to be affected by anything I do except sleep. It may start as a slow creep or as a wallop. When it's at its most commanding state, everything else disappears. Food, water, the outside world, even TV are irrelevant. Pain demands attention, and I can only acquiesce.
What does it feel like? Sometimes like broken glass sloshing around in my abdomen. Sometimes like a giant fist trying to punch its way out of my pelvis. And sometimes like a herd of wild stallions with sharp hooves stampeding in my bladder. And sometimes like a fat caterpillar crawling around, thwarted in its search for the moment to transform into a butterfly and ride away on the wind.
How do I share this with my partner? How do I bring him into my experience? He wants to be as close to me as my pain is. Sometimes my pain is so possessive it won't allow that. It mutes me. It drives me away from him.
Sometimes I can speak in his analytic language and tell him it's up to level 7, 8, now 9, now it's a 12 on the 1 - 10 scale. We have discussed the meaning of the numbers enough so we can use them as shorthand to connect. But in truth, the numbers just don't do it for me. They put a box around something that is too energetic, too aggressive to be described by a number.
There are many days when the pain is at zero. I feel normal. I feel like my body is my friend again. Richard doesn't usually have to ask how I'm doing on those days. It shows. Not in a cosmetic way. But deep in my eyes and in the way my voice reaches out to him. I feel like me, and therefore I recognize him; and he feels that.
The worst times are when I've been feeling normal for several days, even several weeks and months, and then start to feel the slow pulsing of an impending pain spike. I feel so cheated. Deceived.
Defeated. As if feeling good were the dream I eventually have to wake up from to live in the real word of pain. My disappointment is so profound that it warps my thinking and eradicates any hope. At times like these I look to Richard to hold the hope and chant verses of possibility. I can sometimes catch a few lines and hold onto them, like a tow rope leading me somewhere else.
How do I describe my illness to my partner? I really can't. It would be like trying to describe my love for him. I can come up with images or a spectrum of numbers or words that convey weaker or stronger. But the pain, like love, is too encompassing and lives in a realm so deep that neither light nor language can penetrate.
What you have here is as close as I can get. And, in truth, even this isn't really necessary. I think Richard just knows.
How do you describe your illness to your partner? And for well partners, how would you describe your partner's illness experience?
Tuesday, September 10, 2013
Important article in AARP: The Healing Power of Negative Emotions by Barry J. Jacobs. This article speaks to a principle I have long held as essential -- that what doesn't get spoken, doesn't go away. It just goes underground and creates disturbances that are harder to address.