The topic of this post came from a request I put out recently on an Insta-story of mine. I was struggling to know what my readers would be interested in reading and whether my topics were hitting the right notes (excuse the pun).
I was asked to write about parenting with chronic illness and of course, why had I not written about this before? I’d written an article on pacing as a parent, and specifically how I (try to) pace. Obviously, I don’t always get pacing right and have crashes every couple of weeks, but I figured it might be helpful for those new to pacing as a parent.
This article, however, is one about the generals of life with chronic illness as a parent. Chronic illness will mean something different for everyone. For me, I live with ME CFS, asthma, vestibular migraines and vertigo and joint hypermobility (including TMJ dysfunction). Living with a whole series of illnesses mean there’s organisation involved. And a lot of it.
At the early stages of my ME journey I had several back-to-back infections and was taking even more medication than I do currently. Because my symptoms were so all over the place, I had to regularly monitor my temperature. My daughter saw all this and now sees me taking my medication 3 times a day. She sees how I dose out my medicines once a week. She sees me swallowing my various tablets and monitoring my health. I know some people might be horrified by this, but I won’t be made to feel guilty about this aspect of life. I have to follow certain routines and most of my medications and supplements have to be taken with food. Pretty impossible for a toddler not to see all this in action.
I don’t know what she understands of it as she’s only 2 and a half but I’m hoping she’ll grow up knowing that I love her dearly despite all the various things I have to take to keep my illnesses in check. One of her favourite things to do is play doctors with her plastic stethoscope and thermometer. I like to think she’ll grow up as a caring and loving individual. Fingers crossed!
Trips to hospital
This is one that I do try to shield E from. I don’t want her to worry about me but in her life so far, I’ve had several trips to hospital, both for operations, A&E trips and inpatient stays. When these happen, we always make sure she’s with someone who loves her dearly, hugs and kisses a-plenty. No random babysitters in our house.
Working as a team
Mark and I work as a close team in bringing up E. I’m lucky enough to have the most supportive and caring husband in Mark and wouldn’t ask for anything more but there’s things he does that perhaps I take for granted. During lockdown, Mark has got up with E every morning without fail to allow me to sleep until he has to start work at 9. While we know full well a night’s sleep won’t necessarily make my ME any better, that time sleeping is saving me from “spending” energy doing something, so the reserved “spoons” can be used for something else. While we’ve been on lockdown, he’s also bathed and put E to bed so I can rest in that time too. Normally, he works incredibly hard in his job away from home and E goes to nursery so I can rest during the day. With the latter not happening currently we’ve had to put things in place in order to preserve some of my energy.
Sometimes I get weird looks when I’ve got E on my lap in the powerchair. I never quite understand why it warrants a weird look and not a smile but never mind. For E, my powerchair is totally normal. I’m guessing she won’t be able to remember me pre-ME in her first year of life so me having to use a wheelchair to get around is as normal as anything else.
For me, using a wheelchair makes me a better mum. I’m able to live a (vaguely) normal life with E, able to take her out and about, able to enjoy time with her that I would not be able to do without my wheels.
I’m sure there’s plenty of aspects of parenting life with chronic illness that I’ve forgotten but for now, hope this proves helpful to some people out there.
Until next time,
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