She can barely get out of bed some days. One day it’s her foot, another it’s her hip. She’s sad and tired and feels like my and my sister I’s lives aren’t what they could be because of her. How do I help her?
Patience and compassion are the keys.
Your mother isn’t making things up. She’s not lying; she’s not exaggerating.
One of the hardest things for “norms” (people without invisible illness) to understand is the erratic nature of this disease. Just because I could do this thing yesterday doesn’t mean I can do it today.
She’s likely struggling in three areas; pain, fatigue, and what’s referred to as “brain fog”.
Pain:
It never ends. There isn’t a moment (unless strong drugs are involved) that your mom is pain-free. It isn’t mild pain. It’s pain that’s severe enough that it cannot be ignored, even for a little while. It’s there, weighing her down, every minute of every day. And like you noted, it wanders.
Today it’s in the hips, tomorrow in her hands. It’s worse in the morning, but it never goes away and gets worse with exertion. She will probably need help with simple things, like opening jars, or vacuuming.
Fatigue:
This symptom is part of a vicious circle of pain. Pain uses up a whole lot of her energy. Think of it like bandwidth on computers. Pain hogs most of it, so everything else has very little energy.
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When she’s feeling bad, she may be as exhausted as a marathon runner with the flu. When fibro is flaring, I sometimes sleep up to twenty hours a day, for several days in a row, and still feel exhausted. This can make it dangerous to do tasks most of us take for granted, such as driving.
“Fibro fog”:
This one is hard to explain. It’s almost a physical sensation. It feels like my head is stuffed with cotton. My memory is completely shot. I have trouble communicating because I can’t remember the words for things.
My kids have become experts at figuring out what I mean when I ask them to go get me the “thing for the thing” (usually accompanied by a vague hand gesture). I mean the broom but cannot remember that word for the life of me. Simple conversations become nearly impossible to follow.
Watching TV is impossible because I can’t understand what’s happening. Remembering appointments, or what you said to me five minutes ago are as unattainable as the peak of Mount Everest. I’m not stupid. I’m just “busy” being exhausted and in pain.
Your mom will likely be struggling with the guilt that she can’t be the kind of mom we see on TV. Remind her that you love her no matter what. Take responsibility for any of the household chores that you can manage. Nagging you probably takes more energy and mental effort than she has.
Every bit of physical effort you do for her frees up a bit of energy she can spend on you. Forgive her when she cannot do things for you like help you with your homework, or when she has to cancel attending your events, and remember it kills her to have to do that. Write things down for her, instead of expecting her to simply remember.
Remind her of events a few times in advance. She loves you. It’s just that her body fails her more often than she’d like. Tell her you to love her. Knowing her kids are OK is very important. I’m not recommending you lie, but when it’s true, remind her of it. Worry is a huge energy sink.
If you’re lucky, you will end up as compassionate and self-sufficient as my kids have. Their childhood wasn’t typical, but I think they’ve come through it OK.
NB: I’m having a bad flare day, so hopefully this makes sense. I’ve spent quite a while editing. I Will have to come back when I’m feeling better and rework it, I’m sure.
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