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@deniae My wife has lived with MS for more than 35 years, so I understand the frustration you’re describing. Our social life is limited because many people don’t grasp what she’s dealing with. Even family members often avoid getting involved, which adds to the strain.
It’s hard to explain the mood swings or the fact that long‑term planning is nearly impossible. Because of the way her MS presents, she can look completely fine on the outside while feeling overwhelmed or hurt by how others ignore her or fail to understand what’s happening.
I’ll admit I sometimes struggle with burnout and feel the need to step away. But she can be very dependent, and that makes things difficult. A lot of what I’d like to do ends up on hold because I’ve become so cautious and co‑dependent. I’m constantly worried that if I leave her alone, she might fall or injure herself, and I won’t be there to help.
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@edwhite41 Hello. I am William and help out in the head and neck cancer group here on Connect. I saw your reply to deniae and you mentioned taking care of your wife who deals with MS. I am in the same boat.
My wife has good days and bad days. She is still able to get around without assistance most days, which allows some independence. Yet she feels lousy most days and far worse on some days. And for people who say dumb things like “You look fine”, she says “You don’t get it until you get it.”
She has limited energy which we refer to as either having nickels or having spoons, only so many of either each day. When she runs out of spoons, which may be at ten in the morning, that’s it for the day.
We make plans for trips we often don’t take. When we do go somewhere nice for a winter get away, we say she can feel rotten in a hotel room looking at the beach or she can feel rotten sitting at home looking at the snow.
I take myself to activities, volunteer at a local park, things like that. Life is what it is, not always what we want it to be. If our roles were reversed I would tell her what she tells me as I am sure you know what I mean. And life without her is not an option.
So there we are. You are a good man Charlie Brown. We just take this one day at a time. Other people can think what they want, which when it comes to MS, seems to be rather limited.
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@edwhite41
My husband died this past Monday.