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#muse #Ethan

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Emma Decody in “A Death in the Family”

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#muse #sammy

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#muse #Sammy

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(Ex) boyfriend goals ♥

#muse #natalia #sophie

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I believe we have a choice in this world about how to tell sad stories. On the one hand, you can sugar-coat it. Nothing is too messed up that can’t be fixed with a Peter Gabriel song. I like that version as much as the next girl does— it’s just not the truth…

#muse #fc

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Meet the Red Band Society characters: Kara Souders

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This is a bad idea.

You say that about all my idea’s

#muse #Sammy

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#musing #Ethan

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#musing #natalia #sophie

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+

#fc #muse #Sammy

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#Fc #muse

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@lovelynataliacipriano @sophie-sage @viennaxconstanzo

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@will-im

#musing #will

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Showering While Ill: Beyond Simple Fatigue

Many who experience fatigue as part of a chronic illness or terminal illness, and have dared to express the extent of their fatigue, have been told “Everyone gets tired” -the subtext there being “So stop complaining.”

Everyone does get tired. But the tired a healthy person occasionally experiences -while unpleasant, certainly- is in no way comparable to the fatigue a person with a chronic or terminal illness experiences everyday. It is crushing. And part of the crushing is that you know you will probably always be this fatigued. No amount of sleep or rest will ever dissipate the fatigue -and your illness likely makes even a decent night of sleep elusive. Knowing you will always be crushed by fatigue adds another layer to that fatigue.

To illustrate the point, I’ll take just one of the Activities of Daily Living as an example of how illness can make basic, everyday activities that healthy people can take for granted extremely difficult or impossible: showering.

Catchy and to the point, but the fatigue of chronic and terminal illness goes so much deeper than this implies. It’s not just the fatigue of the shower itself, it’s all of the things we have to spend our little energy on to make showering possible -if it is possible.

I could range much further than the topic of the difficulties of showering and bathing and hygiene, and describe the many ways illness makes the Activities of Daily Living a monumental struggle of epic proportions, but I’ll stick with it for this list of examples, written in the spirit of the above picture:

*If you don’t have to plan for a shower days in advance and recover for days after, you don’t understand this fatigue.

*If you don’t have to plan your nutrition, hydration, and medication intake Just Right so that they help you and don’t impede your shower attempt -if you don’t have to think about how nutrition, hydration, and medication affect showering- you don’t understand this fatigue.

*If you don’t have to have help to shower, you don’t understand this fatigue.

*If you don’t need assistive devices to shower -if you don’t need a shower chair, or to sit or lie on the shower floor, or rails to keep you from slipping, you don’t understand this fatigue.

*If you have never been forced to go weeks or months or years without a shower because you needed to preserve that energy just to survive, you don’t understand this fatigue.

*If you’ve never had to choose between showering and eating for the day, you don’t understand this fatigue.

*If you’ve never had to keep silent instead of saying “Thank you, I love you” to your spouse for helping you shower because the effort of speech would use the energy you need to shower, you don’t understand this fatigue.

*If you’ve never had to spend days preparing to shower, then rest all the day of the planned shower, trying to get the energy to shower, and still been unable to shower, you don’t understand this fatigue.

*If you’ve never had to feel the film and itchy grime of dirt build up on your skin day after day, if you’ve never had to let your hair get so oily it could stand on end, if you’ve never had to sit or lie in your own filth because of illness, you don’t understand this fatigue.

*If you’ve never had to cover your feeding tube, or central line, or deaccess that line, or had to forgo showering because the risk of infecting your tube or line was too great to even attempt a shower, you don’t understand this fatigue.

*If you’ve never passed out or collapsed and hurt yourself in the shower, if you don’t have to have someone help you get in and out of the shower and stay with you during because -even seated or supine- you can still pass out and hurt yourself, you don’t understand this fatigue.

*If you’ve never had to face the reality that you can’t both shower and care for your young child in the same day -not just at the same time: it’s a choice between using your energy for the day to shower or to care for your child- you don’t understand this fatigue.

*If you’ve never had to take an uncomfortably cold shower because just the heat of the water can trigger syncope, you don’t understand this fatigue.

*If you’ve never been exhausted by a bedside sponge bath, you don’t understand this fatigue.

*If you’ve never had to wait all day for a CNA to come to your home or room in an assisted living facility to help you shower, only to be too tired to shower by the time the CNA arrived, you don’t understand this fatigue.

*If you’ve never had to crawl out of the tub or shower and lie on the floor for hours before being able to dry and dress yourself -even with help- you don’t understand this fatigue.

Not everyone with a chronic or terminal illness experiences every one of these, but we each experience at least a few, and one is too many.

Those of you who may have experienced some of these due to a temporary illness or injury, please remember what that was like 1) so you can be grateful that you recovered and that this is no longer something you need worry about, and 2) so you will be empathic and compassionate towards those of us for whom these struggles are a daily reality.

Similarly, those of you who have never experienced anything like the above, be grateful for your good fortune, and be empathic and compassionate towards those of us who are not as fortunate.

While writing this list was exhausting, it is far from exhaustive. From your experience as a patient or caregiver/carer, what would you add?

#musing