Living with a Partner with a Chronic Disease - Care

Living with a partner: two people sharing a disease?: It is not easy being longterm ill.
On the other hand: It is what it is.; You may know yourself, but your disease is unpredictable.
Everyday is a new day, and needs considering what to do. It is my feeling, my energy, my decision.
I carry my own backpack.; Yet living with someone elses backpack...
Watching your ill friend and being unable to truely help.: Your leisure time depending on a disease that is irregular. And sometimes it all really gets too heavy to carry. Do you find yourself carrying that backpack? And your partner on top of it?; I think it is even harder to be partner of a long term ill patient.
Worse than being ill yourself. What makes it hard?
Unpredictable: Leads to wondering: Are we going to see our friend this weekend or not? What about a holiday? This is the third time I have to cancel my appointment.
Back-up feeling: The feeling that you fill in the gaps. Your ill partner tries to contribute: household, kids, the phone calls, a heart to heart talk. But when he fails, you have to jump right in. And show your sympathy and understanding.
Appreciation?: Does your non-ill partner get the appreciation she deserves? Do you show her? Do people even recognize the effort she is making? Do you tell them?
People's ear: Some don't dare to talk to the ill, so they talk to the partner. "Well, he still looks good"
("What do you mean, what did you expect?")
"So brave, how he is dealing, so far."
(Don't talk about him as if he isn't here..."); This isn't easy to deal with.
Moreover: besides these hurdles, there are also traps.
Partner trap: who are you?: Danger to some: loose yourself in the other. When someone asks you how you are doing, you automatic reply how your partner is doing.
Partner trap: to help is to act always: Some partners only help and act and work hard. They forget that sitting down and letting things sink in is a sharing experience as well. And maybe equally helpfull.
Trap to the ill: give up: Dangerous is to consider your partner your back-up and problem solver and not show any intiative at all. No activities, no planning, no thinking.
Trap to the ill: nothing is possible: The risk of refusing all help, so you never join and your partner has to go by himself again. Do you really prefer being home alone to being helped?; Maybe it works to imagine the other persons life.
I don't have the answers, just my thoughts.
I believe in sharing and talking.: Trying to be as equal as possible.
And keep trying...

Live life together