Parenting with Chronic Fatigue Syndrome: An Update

In my previous post about parenting two children while having chronic fatigue syndrome, my daughter was in school and I felt much worse at the time. I’m pleased to say I’ve made some progress.

This does not mean I’m “cured” or even anywhere close to feeling great, but after rereading myself during P-Mag’s Birthday Party, I could see some differences in my life. When I wrote the original post, only five months had passed since I stopped working at my year-long part-time job, and I was still working very hard to recover from it. I’d also just recovered from a month-long unrelated illness that made me…not a pleasant person. The annoying thing about having CFS is that it magnifies every other thing that “regular” people get, and it takes at least twice as long to make it go away. Sometimes I joke that I should get a “pass” on the common cold because I’ve got so much else happening.

The biggest development in my life since then is that I’ve also been diagnosed with fibromyalgia. Fibromyalgia, Chronic Fatigue Syndrome, and depression unfotunately all seem to get along really well. Fibro is very similar to CFS in that its symptoms can include brain fog, sleep problems, and sore muscles, but it seems that with fibro, it’s a very concentrated sort of pain. I started to notice it when I couldn’t lay on one side for too long without my elbows or shoulders hurting. The good thing (“good” being a relative term) about fibromyalgia is that there are a handful of medications that can take the edge off the painful symptoms. Without going into too much detail – since I’m no doctor and you should listen to your own, obviously – I am a few weeks into taking something that is technically an anti-seizure medication. To simplify it, my doctor told me that it tells my brain, “Hey, this pain you think you feel? It’s not so bad. Settle down.”

The medicine has its own side effects. This generic version supposedly will not as likely make me gain weight like the name brand one, which is nice, but the one thing it does do is make me sleepy. Luckily, there is no problem with taking it at night, and it actually helps with the CFS-related sleep disruptions to where going to bed is a lot easier than it was before I started taking the medication. A rare win!

So what does this mean when it comes to parenting? Obviously, a better rested parent is a happier, more present parent. Because my body doesn’t hurt quite so badly when I wake up, it’s easier to get out of bed, even early enough when the kids are getting ready for school. My husband still takes them to school most of the time because he’s going to work right after anyway, but it no longer feels like I’m being woken from the dead if my son asks me where he can find some socks.

Right, socks. No, I haven’t really become any better about laundry.

Here’s how morning goes now:

• 7:45 a.m.: “Mommy. Mommy. I need socks.”
• 8:00 a.m.: Both kids are off to school, now third grade and kindergarten.
• 8:45 a.m.: If the mister doesn’t have to work until 9:00 instead of 8:00, he comes back and does whatever he needs to do before leaving. I’m usually still in bed, but I often rouse enough to have a conversation with him.
• 10:00 a.m.: Sometimes I’m up earlier, and on the bad days I might sleep in much later, but I suppose if you average it all out, this is when I get up. 3 cups of coffee, 2 pieces of toast. Various vitamins/supplements taken, as usual.
• 9 a.m. ““ 3 p.m.: Blissful Quiet. Oh, it’s awesome. I mean, I talk to the dog a lot, but she mostly looks at me like, “You gonna eat that toast? I noticed you haven’t touched it in the past .5 seconds.” I get writing done, I run errands, I loiter online. I consider doing laundry. School days are fantastic.
• 3:20 p.m.: The kids are done with school, and the whole homework/dinner/bed process begins.

The only variance to this is on Thursdays, when the mister works his other job that starts at 7 a.m., and I do the school run. The difference between this year and last year is that I am able to do this. Last school year, when I was still exhausted from my job, my mom would take my daughter school on the mornings my husband couldn’t. She has her own job to get to, and I always felt bad that I was making her add one more thing to her routine. Now, it’s not usually an issue.

The thing is, I have way more patience now that I have a whole day to myself. The quiet does a world of good to clear my head, and now I don’t have to feel guilty about shooing away the kids so I can write. People sometimes look at me funny, when they ask how I’m dealing with my son now being at school, and I answer so enthusiastically. Yes, yes, he’s my baby and all that, but he would be so bored being home with me for another year. He just barely made the age cut-off to start kindergarten, but being the youngest in his class doesn’t seem to have hindered him a bit. He pronounces school, “Fun, fun, fun,” and I’m so happy for him.

There are still bad days, of course. Recently, I had a two-week-long battle with sciatica, something I get occasionally, but I’d gone awhile without it. Apparently, my body wanted to make up for lost time because it felt brutal. My patience with not only my children, but everybody was almost non-existent on those days. When you hurt so badly you can hardly think or see straight, hearing, “But whhhhyyy can’t I play computer games today?” is beyond grating. Noise sensitivity is still a big issue, which can be troublesome with a son who frequently makes up loud songs with animal sounds. I want to find the songs cute, but most of the time, I just can’t. I have to tell him, “Can you stop with the extra noises?”

People ask me if my kids “get” that I have a chronic illness and what that means for our lives. Mostly, I say. Obviously, my son is still quite young, so to him, it’s more of a “Mommy has a thing where she’s tired and hurts a lot.” My daughter seems to have dealt with it by setting the bar low, as far as her expectations of my abilities go. This both makes me feel guilty – you know, I’m her mother; shouldn’t I be able to do anything for her? – but also proud because she is recognizing my limitations and trying not to let herself get too disappointed by them. She will ask if we can go do some sort of event that is a couple of days in advance, but also says, “I know, it depends on how you’re feeling.”

Also because of never knowing for sure how I’m going to feel on any given day, I don’t really volunteer for anything at their school. I might send along snacks or something, but you’re not going to find me sitting in on some activity in the classroom. My personality is such that I’d probably not be a big fan of doing so anyway – some people are born to corral small children, and I am not – but now I don’t have to worry about it. Illness-Get-Out-of-School-Carnival-Free Card!

In short, we’re making do. I recognize that my situation could change for better or worse at any time, but I’m doing my best to keep it on an upward swing. We’ll see what happens.