Tuesday, July 27, 2010

This Week's Grand Rounds is Up

Grand Rounds is a collection of the best posts from the health care blog world. This week it is hosted by Inside Surgery. Have a read.

Sunday, July 25, 2010

Dual-Illness Couples


It can be all consuming to deal with one's own illness. What happens when both partners are sick?

Cindy had been living in a cloud of ill defined, mercurial symptoms for years. Sometimes she felt too exhausted to comb her long brown hair. Sometimes moving or being touched made her retract in pain. Sometimes she ran a low fever for days without any apparent reason. In fact none of her symptoms had an apparent reason to her doctor. He prescribed Prozac, exercise, and a referral to a psychiatrist.

Cindy suffered her symptoms with fear and bravery; but her doctor's negation of her reality, his condensing it into a ball of dismissal and tossing it to a shrink crushed her. It was her husband, Bob, who mustered the energy and rallied Cindy to keep searching. They did, and found the right doctor who could give a name to her condition - fibromyalgia. Being taken seriously was as important to Cindy as was finally having a treatment path laid out for her. Cindy focused on taking care of herself, while Bob loved and encouraged her, did most of the chores, and worked full time. Things seemed to be working out for the first time in 4 years.

Then Bob got injured on the job. A piece of heavy equipment fell on him and he suffered serious injury to his back. He had two surgeries and grueling sessions of physical therapy. His love was there for Cindy, but his energy and ability shifted to attending to his own care.

Cindy and Bob did well when only Cindy was impaired. Now that they both had serious limitations and pain, their world bounced off its axis, and there was no one else around who could reposition it properly.

House chores were undone. Laundry, dishes, and all kinds of clutter filled the rooms that used to be tidy and inviting. Luckily Bob still received disability payments and insurance from his job.

Pain and fear made them both short tempered, and the only target for the spillover was the other partner.

Eventually, a friend suggested they consult a care manager to help them put resources in place - home health aides, visiting nurse, meals on wheels. This friend also organized a visitation rotation list among members of her synagogue so that twice a week Cindy and Bob were visited by someone who could bring new social energy into the house.

Cindy and Bob still struggle. They miss their old life and bemoan their current one.

Do you have any suggestions or advice for Cindy and Bob? Have you been in the situation where both partners were ill? What was that like for you?

Wednesday, July 14, 2010

Patients for a Moment is Up

This is a collection of blog posts written by people living with illness about their experience. It's a great read. It's being hosted by Leslie at Getting Closer to Myself.

Monday, July 12, 2010

Reclaiming the Joy


Illness takes so much from us. Yes, we can learn about caring and how to distinguish between the essential and the merely important. We can learn about acceptance and compassion for ourself and for our partner. We can become students of our body and listen with a sharper consciousness to its rhythms.

But illness takes so damn much from us. It takes the blissful freedom of ignorance. It takes spontaneity. It takes carelessness. It smashes all the assumptions we hold about moving without pain or fatigue. It takes mindlessness about time passing. It takes intimacy without forethought.

So, how does one reclaim some of this lost territory? How can you find the joy?

For me, I find it in motion. When I have a good day and I can go on a glorious disneyland of a hike in the hills of Marin or New Hampshire, joy rides on my shoulder. When I have a good hour, I drive to the ocean and breathe. When I am hurting and tired of hurting, I sit side-by-side with my sweetie and catch up on episodes of Lost or The Wire.

The joy is not in the grand parade; it's in the moments.

What are your moments of joy?

Sunday, July 4, 2010

Post-Illness Readjustment


Do you know any couples who have had this experience?

She develops cancer. Or he has a heart attack. One is seriously ill and the other moves into serious caretaking mode. Whether it's love or resilience or luck, they not only manage the illness effectively, they manage to relate to each other in empathic ways. The love they started with seems to expand under the pressure of illness. In fact, they may even say that illness showed them strengths in each other that were invisible before.

Then normalcy sets in. Maybe it is ushered in by recovery or by adaptation to a new way of living and relating, with illness.

One would imagine that the couple would welcome some stability and would take their illness-induced lessons and apply them with more love and vigor in this next phase.

But the lessons don't hold, and the relationship falls apart.

They start picking at each other. Bickering over the insignificant -- refilling ice cube trays, shutting the computer off when not in use, leaving wet towels on the bathroom floor.

Things escalate. The arguments get louder. Old grudges surface. Dues for favors done years ago are expected to be repaid now.

Or maybe things get quieter. So quiet that soon there is nothing left to talk about. And no interest in creating new experiences.

The couple who did so well during illness can't cope with the new normalcy. They become like soldiers who discovered their aliveness in battle and can't return to the averageness of civilian life.

Do you know couples like this?
 

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