6 Rules for Parenting with Chronic Fatigue Syndrome (ME CFS)

6 Rules for Parenting with Chronic Fatigue Syndrome

I probably ought to start with a disclaimer for this one. I am NOT (amongst many things!) an organic-cooking-from-scratch, arts-and-crafts, reusable-nappies type of mummy. If that’s you, serious hats off to you, I’m very impressed. That’s just not me. I’m a finding-the-shortcuts-in-life, winging-my-way-through-life type of mummy. It’s just the way I have to live to stay sane. 

There are several rules I’ve had to learn to live by to not only stay sane (ish!) but to create a bit more stability in health terms. 

6 Rules for Parenting with Chronic Fatigue Syndrome
6 Rules for Parenting with Chronic Fatigue Syndrome
  1. Lower your standards

I have to confess I’m a complete hypocrite for this. I love a tidy house and can’t stand dirty dishes piling up high. But I’m working on it because I know it’s the most important rule. 

Lowering your standards is an absolute must. It is not lazy parenting to not be perfect. Heck, no one is perfect. But if you have chronic fatigue, or any chronic illness for that matter, and a child, you absolutely have to make some changes for everyone’s sake. 

If you’re not an organic-cook-from-scratch mummy like me, absolutely fine. Buy those Ella’s Kitchen frozen toddler food (Tesco have a whole freezer section full of them). That food isn’t full of crap, I assure you. I’ve studied the labels. Make mealtimes as easy for yourself as possible. Batch cook if you have the energy or desire to do so. Ask family to help cook some meals for you. 

Living room floor covered in toys? Absolutely fine. No need to tidy up during the day. Sure, if you fancy a tidy living room in the evening then yes do tidy it then but do not do what I used to: tidying up as soon as the little one is napping. Complete waste of time. She’ll only make the same mess the minute she wakes up.

2. Nap when the baby naps. Seriously. 

We sleep trained our little one at 6 months. This may cause a bunch of my readers to un-follow me. Sleep training is hugely controversial in the parenting blogs world. 

It worked for us. We had our little one sleeping through from that age and napping consistently at home in the afternoons. Of course, I’d love to be able to be out all day, putting the little one down for a nap in her pram. Shopping, lunches out, all that fun stuff. Unfortunately, I just don’t have that many spoons to work with. 

So, our little one’s nap time is a solid part of our schedule. And I don’t apologise for it. We make sure we’re home at that time because put simply, I have to rest at that time too.

When someone tells you to nap when the baby naps, please do. Seriously. I spent months and months ignoring this advice and ended up where I am today. I’ve got no idea what’s going to happen when the little one drops her nap completely but will deal with that when it comes!

3. Plan, plan and plan some more 

Always look at a week as a whole unit and think about your limits, and what you know you can manage within a day or 2. 

You may have an event coming up which you know is really important to you. Specifically plan nothing for the day before and the day after. You will need to conserve your energy, save some spoons in advance and then rest the day after. 

Call in for help if you know you’ve got a particularly hectic week. 

Those of us with chronic fatigue syndrome (ME CFS) know we can’t just be as spontaneous as we would have been before so plan things out. Include things that bring you joy, whatever that is. Even if you particularly enjoy sitting in the garden, add that to your plan. 

4. Choose where to spend your spoons

This is a really difficult one as there are some things you just have to spend your spoons on. (If you have no idea what I’m talking about referring to “spoons”, read my previous article on the Spoon Theory here.)  

Those things you can’t control, stop trying to fight them. They will always take up a certain number of spoons each day. Walking/moving to the toilet. Eating and drinking. Feeding your baby/toddler. Certain things you HAVE to do. 

However, there are some spoon activities that you CAN control. Take a really good look at your day to day life or even friendships you have. Are there things or people which drain your spoon quota that you feel really are not worth the expenditure? It’s a really hard thing to have to think about as no one wants to have to make those tricky decisions in life but for your own well-being, and to create stability in your life with chronic illness, you have to make changes. If something is using too many of that day’s spoons and you CAN control it, do something about it. 

I met someone who preferred to use the term “coins” instead of spoons. She explained that she preferred to view her energy expenditure as money. As in, if something is worth it, she will spend her “money” on that activity. If it’s not, she won’t. Nice way of looking at it, eh? 

5. Ask for help

To be honest, whether you have chronic fatigue syndrome or not, parenting is tough. There’s no sugar coating that fact. (Obviously I love my daughter to bits, please don’t think I don’t!) But when you have a condition like this, you simply don’t have the energy levels that a healthy parent would, so need whatever help you can get. 

Personally, I know that even a full day with my toddler uses more spoons than I have in my daily quota. I had been pushing myself for months trying for this not to be the case but the stark reality of me getting worse over time made it even the more obvious. So, I have had to ask for lots of help from those around me. I’m very lucky to have the most supportive friends and family to help out and a truly wonderful childcare setting for my daughter to go to but I know that not everyone is so lucky. 

If you don’t have family or friends nearby, see if you can get your child going to some form of childcare setting even one or half a day a week. The time needed to recharge is absolutely essential. If you can afford it, get a cleaner. 

Explore the financial support out there with childcare options. Tax-free childcare through the government is fantastic. For every £8 you pay into your childcare account, the government will top up £2. That saving quickly adds up. 

Explore HomeStart and the things they can help with https://www.home-start.org.uk/Pages/Category/things-we-can-help-with

6 Rules for Parenting with Chronic Fatigue Syndrome
6 Rules for Parenting with Chronic Fatigue Syndrome

6. Finally, know you’re not alone

Use social media for all the benefits it has. There are multiple support groups on there, as well as the pages for the local chronic fatigue syndrome (ME CFS) support groups in your area. Spend some time reading and posting on those groups and you’ll quickly realise you’re not alone. 

Create your own support network. People you know you can turn to, whether they have chronic illnesses themselves or not. It can be a lonely world living with chronic illness but it doesn’t have to be all doom and gloom. 

Comment below. Are there any rules you live by to make things easier for you as a parent? What is your most important rule to live by? 

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