What People Who Say I 'Just Need to Get Out' Don't Know About CFS/ME

What people don’t understand about chronic fatigue syndrome (CFS) is that it’s not just being tired or when you have a late night out. It’s not comparable to needing to take a nap or needing to go to bed early tonight. Chronic fatigue syndrome is a condition that pretty much means extreme exhaustion without cause or relief. It’s never having enough sleep and always being tired. Brain fog, confusion, memory loss, or just being out of it is a struggle every day. No tasks are easy and you forget the simplest things. Which medications I took, did I sign the permission form, who I was supposed to call back?

Days that I have to get up at a certain times are always hard. For me, school days where I have to get my kids up and ready for school are always exhausting. Waking up is a long process, you know you have to get up and take care of your kids but you struggle to find the energy to even sit up in bed. Every task sucks the energy out of you and you always need a break in between. Make yourself a cup of coffee, sit and rest, shower, sit and rest. You always have to plan your tasks carefully. I shower in the late afternoons/early evenings and then I’m able to just get dressed and attempt my hair and makeup the next day. Trying to do my hair and makeup requires a stool. Even lifting my arms to brush and style my hair wears me out. I wish people understood how everything you do takes a little more out of you.

I tend to be more of an introvert lately, so any social interactions takes a lot of energy. I always require a nap afterward. When you’re a parent every trip out of the house requires not only getting yourself ready but also the kids. People are always trying to get you out of the house, saying, “You just need to get out of the house,” but they don’t realize even the simplest trip to the store or a doctor’s appointment is the max you can do in one day. Then it’s over. It’s time to curl up in bed with Netflix and your favorite fleece blanket. You only have so many spoons and then they are gone. All I want is to go see my family or have a night out, but there is always a cost to that. You might not be able to do anything the next day other than lay in bed and rest. When you’re a parent that means less time playing with your kids, reading them story or helping them with their homework.

If you want to hang out with your friend or family member with CFS, offer to come to them. We always love spending time with people, game nights or a movie marathon. Just laughing and taking our minds off what we are going through. So the next time you tell someone with chronic fatigue syndrome that they just need to get out of the house, remember what that will cost them.

This blog was originally published on My Autonomic Dysfunction Adventure.

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Thinkstock photo by junce


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