ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
PO Box 28,
South Australia 5007
North Terrace House,
19 North Terrace,
Hackney, SA, 5069
1300 128 339
ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
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Raising kids when you're bedridden with Fibromyalgia or Chronic Fatigue Syndrome
Thursday 5 December 2013
Raising Kids when You're Bedridden with Fibromyalgia or Chronic Fatigue Syndrome
When you have a debilitating chronic illness like fibromyalgia and chronic fatigue syndrome, sometimes you find yourself stuck in bed or on the couch for long stretches of time - like days or weeks. At the same time, most of us have to keep a household running as much as possible. It's a daunting task, especially when taking a shower leads to a four-hour nap, or when you're in so much pain that you can barely speak.
I had a few years where I'd be up for a couple weeks, then down for a couple weeks. My kids were really little then. It wasn't easy, but we found ways to make it work ... at least, at a basic level. I've had some reminders of this lately, since I keep getting really sick and going down for a few days (thank you, suppressed immune system!) It's also shown me what it's like with somewhat older kids, who are capable of more, but also harder to keep my eye on.
First, a word of encouragement for those who are in this situation: Being limited by your illness DOES NOT make you a bad parent. A whole lot of us have raised happy, well-adjusted kids while facing those limitations, and they often grow up to be especially caring, understanding, and self-reliant because of our challenges. Make sure they know they're loved, and they'll be okay in spite of fewer trips to the park and getting their own snack out of the fridge.
When my kids were little, they spent a lot of time hanging out in my bedroom while I was in bed. We snuggled (as much as I could without it hurting) and watched movies. I read to them, grateful that their books were simple when my fibro fog was bad. They colored and played games on the floor. I'd drag myself to the kitchen to make meals when I could, and we made sure to keep a lot of healthy foods on low shelves for when I couldn't. On the worst days, they brought me food.
Usually about an hour before my husband got home, I'd start encouraging them to clean up the floor and bed. Some days, they did a good job. Other days, they didn't. We learned to live with it. (We also had to institute a "no crayons near the heat vent" rule, but it's nothing a strategically placed hamper can't conceal.)
As I mentioned, the challenges have changed as they've gotten older. They can now make sandwiches and cook in the microwave. They're much more capable of doing things around the house, like cleaning the kitchen and hanging some laundry. My son can ride his bike to the grocery store if we're desperate for something. They can entertain themselves in a different part of the house, meaning I don't have to watch cartoons all day and their toys aren't all over my room. I can take a nap without worrying that they'll severely damage themselves. Those things are wonderful, but....
It's harder to make sure they've done the jobs I assigned them around the house. My husband walks in on more messes that I'm unaware of. They can grab and eat whatever they want and the only way we know is because they're bad about throwing wrappers away. Also, they have all kinds of activities and occasionally have to miss something - which means a lot more chances for disappointment and resentment.
We have a home phone with multiple receivers, and some weeks I use it less for calls than for paging my children to check on what they're doing, see if they've finished their homework or cleaned the litter box, or break up an argument I can hear. I also feel isolated from them like I didn't when they were playing on the floor. We have less overall interaction, which means a higher percentage of it is spent telling them what to do. Not fun. But then, I suppose that's a reality all parents face as kids get older.
Over the years, I've heard from a lot of people who've had to parent from bed. While it's hard to be sick when you have babies and toddlers, it's often easier for the kids to accept it as "normal." During their teen years, when they're so self-focused, a sudden change in what mom or dad is able to do may be harder on them.
Of course, a lot of elements can make the situation much harder: a child with special needs, unwelcome lifestyle changes due to lost income, a non-understanding spouse or one who travels for work, or being a single parent may mean that you can't just adapt and keep things reasonably happy and functional.
If you're struggling to parent while sick and don't have family or friends who can help, you may want to check with your insurance (assuming you have it) or social services - you may be able to get some assistance. Some families can benefit from group counseling, as well. Your doctor may be able to discuss options with you.
Sometimes, you just need to vent about how hard it is. Feel free to do that here, in my forum, or on my Facebook page. (Remember to always be careful what you say online - if it's something that could come back to haunt you, choose a user name that won't show up when someone Googles you.)
What struggles are you facing? What helps you get through the day? For those who've been through it, any advice is welcome! Please leave your comments here.
The above originally appeared here.
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