Parenting and pacing. 2 words that really sound like they shouldn’t go together. How on earth does one learn to pace oneself as a parent with ME CFS? Parenting is tiring, there’s no doubt about that. It involves a lot of energy. How do you ration the *limited* energy you have as a chronically ill parent?
In this post I’ll attempt to describe what I do, or rather how I get through each day without going completely mad. *Obviously* I’m not saying this is the way to do it, everyone has their ways of dealing with things, but as I stated when I set up this blog, if I make just one person feel slightly less alone then my target will have been achieved.
So, what is pacing?
Healthy or not, we all know that pacing ourselves means balancing activity and rest. It means resting at appropriate intervals, getting enough sleep, and generally looking after yourself.
However, pacing for someone with chronic illness isn’t quite that simple. If, prior to becoming ill, you were someone whose definition of “pacing” was running a 10 minute/mile (ha!) or getting to the gym a few times a week in between restful evenings, then forget it.
Pacing as a “spoonie” (the slang word for those with chronic illnesses) is taking your activity level pre-illness, dividing it by 10 (this is not an exact science) and that’s your activity quota for the whole day. Now divide that amount of activity into even smaller chunks and that’s the limit of activity at any one time.
How exactly does that work? How do you get anything done? Good question! “With difficulty” is the answer! I am very much still in the learning process in the concept of pacing. There is no way that I have got the whole pacing thing sorted. Nowhere near. But I’m better at pacing than I was a year ago, and that’s got to be a good thing.
However, my article is about pacing as a parent. How have I learnt to pace as a parent? It’s been a challenge I’m not going to lie. There’s been a lot of emotional chocolate eating, and a lot of tears, but I *think* I’ve got some rules now that help me. Note: like I said before, this is just what I do, not the way to do it.
So how do you pace yourself as a parent with ME CFS?
1)Set your priorities activity-wise
What is/are one (or two) things you really want to be able to do each day? This is obviously going to be different for everyone, but my priority has been the ability to chat to my husband and put my daughter to bed each day. I need to be able to give my daughter cuddles and read stories at bedtime, with a tiny bit of energy left in the tank to chat to hubby. I haven’t always been able to do this.
Lower down on my priority list is getting some kind of fresh air on a daily basis. I realise getting out of the house is an incredibly difficult thing to do when living with ME CFS. I’m not saying this is possible for everyone. It’s just that this is one of my priorities because I have mental health difficulties and being stuck inside makes my mental health worse.
Because these are my priorities, I’ve had to basically cut out simple life stuff, you know like walking. I’ve had to be brutally honest with myself in saying that if I want to be able to put my daughter to bed, with all that involves, then I have to cut something else out of my activity usage. Therefore I have a powerchair, and now a car and hoist to put it into, that let me get outside the house, and save the energy I would have spent on walking, to spend on my daughter and hubby.
2) Get help (and explicitly ask for it!)
I’m really bad at asking for help. It feels totally strange that I’m suggesting I do this when actually I find it really hard. I’m incredibly lucky in the support network I have around me, and I know this would be a lot harder if that support wasn’t there.
My daughter has been at a mixture of nursery and with the grandparents for 3 and a half days since I (attempted) to return to work in September 2018. I ended up on long term sick leave 2 months later, but the childcare arrangements stayed the same. Since that time I’ve ended up more unwell so she now goes to a mixture of nursery and the grandparents for all 5 days of the week. I have the most extreme mum guilt at this, as I massively struggle with the fact I’m not a stay-at-home-mum with my daughter at home, but nor am I a working mum. I like to think living with ME CFS in itself is a full-time job, just with rubbish pay!
3) Get hold of mobility aids
Mobility aids do not mean giving up or giving in. If you need a mobility aid to help you achieve the priorities you have, then do it. This doesn’t have to be a full on powerchair, it could simply be a walking stick to support you. I have a powerchair (electric wheelchair) as my mobility was declining as I was learning (and failing) to pace myself. My powerchair is my symbol of independence and exactly what I need to get me out and about and allow me to pace myself to save the energy for what is important.
4) Lower your standards
This is one I massively struggle with. I hate seeing chores that need doing, I just find it too hard not to just do them straight away. When I’m crashing, those chores become insurmountable. It drives hubby crazy. If you’re able to lower your standards as a parent with ME CFS then please do share how you do it!
5) Have a set of “stuff” for when you are having a low spoons day.
I know there are guidelines out there on TV use with children etc, but when you have even less energy than normal one day, there are certain things that are the only option for survival for everyone involved. In these situations, I know I need to conserve what little energy I have for the basics like feeding my child (and myself) so there isn’t really anything left for anything else. Therefore, my daughter and I have to cuddle up on the sofa with her *current* favourite show: Peppa Pig.
Unfortunately (or fortunately depending on how you look at it), she now understands the situation and says, “mummy needs to rest, shhhh” and “mummy very tired” which totally breaks my heart but I’m kind of glad she understands.
6) Get your child used to your mobility aid, and use it with the child
E loves my wheelchair. She sits on my lap and insists we “go faster”! For her it’s totally normal now. She attempts to “push” it from the back. The one downside to a powerchair with a toddler is attempting to push them on the swings. I get incredibly dizzy standing still in one place so standing pushing a swing is out of the question, so I have to push her while sitting in my chair. However I haven’t yet worked out the right distance to sit from the swing to avoid narrowly being kicked in the face. Luckily I haven’t *yet* got a black eye from swing-related-injuries but I fear it may happen soon.
7) Lie down before a crash takes hold
Crashes are horrible. There’s no way of sugar coating them, they suck. Read my “what an M.E. crash feels like” if you haven’t read it already. I’m lucky in that my crashes are becoming less frequent, meaning I can plan my days a bit more carefully now. However, I can feel when they’re coming. It’s generally when I’ve used adrenaline to keep going. That adrenaline runs out and, well, a crash happens. When I’m on my own during the week I can just lie down there and then but at the weekend I often have to leave a nice family event to be able to lie down.
Parents out there with ME CFS, what do you do to help you pace yourself? Do share the tips you have below.
Until next time,
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