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Husband with POEMS Syndrome

Caregivers | Last Active: Jan 17 9:06pm | Replies (24)

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@casseth02

How did you find the strength to keep going? I feel like I am loosing it but I can't because of the kids. I am trying to keep it all as normal as possible but it is getting so har

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Replies to "How did you find the strength to keep going? I feel like I am loosing it..."

Hi again @casseth02 Thanks for your response and question. Forgive me for my bluntness, but you, as I was, are in a new living system, which is not 'normal' in any sense of the word. Topsy-turvy perhaps -- crazy maybe -- a house of cards certainly --funny at times then intensely sad, but never 'normal'.

I got by using the AA mantra of 'one day at a time'. I often wondered if I could find the strength to answer the bell in the morning, but believed I certainly could finish the one day I was in. This helped me then stare down the next day as best I could.

I also believe deeply Love is an incredible emotion and it can power the best and the least of us far more than we ever think it can. In my case I know it was only love that got me through a day for my wife and our children more than once.

Please remember Superman and Superwoman are only in the comics, so a caregiver can only do their daily best. Each day the definition of 'best' can change.

I often came up short in my caregiving efforts so I kept an old pillow on our sofa, which many nights received my wrath as I punched it for an outlet. One night when I was especially angry with myself I tore a hole in it and found myself exhausted, but spending over three hours picking feathers off everthing in sight! So a word to the wise --if you do this use a foam pillow 🙂

Be kind to yourself!

My best strength to you.

Wonderful to read your posts!