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Have you helped comfort others during their time of need?
In his most recent column, Brad Dell wrote about a recent experience he had comforting a friend when bringing them to the emergency room. Many of us with CF are usually the ones who are comforted as we go to the hospital.
Have you ever helped bring a friend or loved one to the hospital? If so, how was it for you as a person with cystic fibrosis to have the shoe on the other foot? -
7 Replies
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My CF person is 1 bad cold away from the ICU, no slack in her lung capacity and facing up to starting the process of trying for a lung transplant.
CF is a long game for the caregivers. It profoundly changes the situation. There are the hospital stays, and then there are the other 7 days a week, every week of the month, every month of the year. Yeah, I give all the comfort I can- every day. These days my feelings are my problem, I have to cultivate my own emotional and spiritual supports and I have to put a bunch of work into that. Disassociation and aversion to the faces of the medical machine is a luxury to be grateful for as far as I’m concerned. I have to engage regardless.
Its a job doing the work and cultivating the spiritual fitness in the face of my own grief and fatigue to constructively respond to the fear and emotional dumping, and accept that the CF sufferer, on a good day, can make it up and down the stairs to do their various things. On other days its tougher and no getting off the ride for either of us.
So, I’m glad he went to the ER and faced his demons and was able to give some comfort to someone in need. I think he should do it a bunch more.
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How is your person doing now?
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Stable on trikafta but lousy lung function still in the 20’s percent, so at we’re moving into the lung transplant phase. And she’s losing her job in July- thankfully I have health insurance, and it looks to be a long haul until she’s able to work again (assuming she has a match in the next months and no guarantee of that of course). So my job now is to be the sole provider, and likewise thankfully I do have some flexibility to work from home for my 24×7 shifts to help make sure the stuff that needs doing post-op gets done.
Still getting the fear dumping… just this evening the conversation consisted of lists and issues which makes me sometimes wonder if she has been paying attention to the household economics for the last 10 years. But whatevs- thats not my business. My business is to keep my own wheels on for the long haul.
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This is interesting for me, because even though I have CF I don’t experience that much support as one would think. As a child, I became a care taker due to many reasons and as I grew so did my care taking. I’m very comfortable with being there for someone when there ill. I’ve been to the bedside of friends dying from cancer, to my parents, and grandparents and even when I am in the hospital, I try to be supportive of others needs and plights. It is a big part of who I am.
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Did anyone emotionally support you growing up?
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So wild being the one without the wristband for once, right? Like, “Wait… I’m the stable one today?”
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How do you adjust to the role switch?
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