Caring for a sick kid or kids when you have your own chronic illnesses to deal with can be one of the hardest things you will ever have to do.  I find myself repeatedly ignoring the warning signs that my symptoms are spiralling because I simply do not have a minute to deal with them.  My children quite simply have to come first and sometimes their needs mean that mine are not met.  In an ideal world we would pace everything, manage pain, eat well, stay hydrated you know the drill… but in reality this simply doesn’t happen.

It’s a catch 22.  When I lack sleep, grab food on the go (because I’ve forgotten to eat, it’s way past lunch time and I’m still holding on the phone to the hospital to sort referrals and evidence for school), it means that the food I’m eating is not really what my body needs, but it has to do.  Caffeine keeps me going.  But this won’t work forever, as I keep dipping into those reserves of energy and as the adrenaline kicks in, the anxious knot in my tummy tightness.  The crash is coming.

But, there is school work to plan for the temporarily home educated child and I can’t take my eye off of him for a minute or he will fall asleep – again – and the plan is to keep him awake.  There are more calls to make to school, the LA, physio, orthotics, the fatigue team and my sons consultant who I seem to have on speed dial.  Then emails.  Housework, actual work, dinner? Do we have to eat?!?

Consequently three weeks in and the crash came, I’m surprised I kept it up for so long.  Migraine, tachycardia, dizziness, pain, fatigue, severe stomach cramps and dislocations as invisible duct tape holding me together seemed to peel away.

So as a family we are settling in to a new normal, hopefully a sustainable one over time.  Tiredness when you have the worry and responsibility of sick kids is immense but when you have that illness yourself it is compounded beyond belief.  So this is what I’m going to tell myself over the coming weeks and how I plan to keep those crashes at bay or at least minimise the storm.

Here are my top 7 things to do when I realise I’m crashing

  1. Ask for or accept help.
    This is not something that I am particularly good at, however, I know that I have to relinquish some parts of my life sometimes so I don’t get pulled further into the spiral.  First, things first – outsource the ironing for a bit.  Then, at home I have to accept that others just don’t see the jobs that need to be done at home.  I will have to ask; the kids to empty the dishwasher, or my hubby to run the Hoover round or mop the floor in the evenings, for someone to walk the dog.  The pay off when I crash has a much greater impact on the family than a few chores ever will.
  2. Simplify things.
    Make simple dinners on busy days.  Fresh pasta with a homemade tomato sauce can be prepared and served in under 10 minutes.  A takeaway pizza once a week won’t kill the kids and they actually think it’s a nice treat.  There is no crime in buying pre-prepared veg once in a while, if tit means the difference between the kids (and us) eating healthy food or grabbing food on the go then its definitely a compromise that is worthwhile.  It’s also a good idea to cancel or postpone any appointments and plans that aren’t essential.
  3. Get organised.
    When I feel like this it’s time to write lists and prioritise what has to be done now and what can wait till next week.  It helps me to focus and not go off track on things that can wait till another day.
  4. Prepare dinners in advance.
    It’s time to plan ahead with dinners, simple things can make all the difference like making sure all the ingredients are in before you start.  No more last-minute rushing to the shops because I’ve forgotten something.  You can’t beat simple home cooked food.  Hearty stew, shepherds pie or Bolognese can all be prepared and cooked early in the day with minimal effort to turn out a proper dinner when reserves start to dip in the evenings.
  5. Organise the kids.
    Ferrying the kids to and from their clubs takes up every evening bar one.  They love them and most of all it is keeping the little two fit, active and strong.  So the way forward is to put the kids in control.  Packing their kit, remembering water bottles, giving them the responsibility of paying for themselves.  Using the time when I’m watching them to multitask by replying to e mails or doing an online food shop can free up time later on for other things.  Putting them in charge of packed lunches for school or putting away their own washing can really lighten the load.
  6. Take time out.
    This can be as simple as sitting down in the day and watching a movie, WITHOUT FEELING GUILTY!!  Meeting a friend for coffee or having someone pop in for half an hour to break up the day.
  7. Have a hot bath.
    This is my go to fix when I am in pain.  A nice soak in a warm bath can stop me reaching for pain meds or wine! so its much better for me.  It also gives me twenty minutes to clear my head.  I can’t immediately search for information if and idea pops in my head or quickly call someone on the telephone to clarify something.  I can ponder and formulate a plan and prioritise what needs to be done  That’s if I don’t get one of the kids sitting on the loo putting the world to rights while I have a soak.

As a family we have learnt the art of pacing and know that when I start to crash I have to pull back.  I’m still learning not to get to that point in the first place but I’m natrually a dooer, an activitst and having chronic illness’ doesn’t really fit my personality type.  Experience has taught me that if I don’t ease off the gas when the warning signs are there I am left literally unable to function at all and that isn’t good for anyone.

What are your top tips to survive a crash?



  1. This post is so timely for me Sarah, as I just had my own crash – and I don’t even have kids! or not visibile ones, anyway. I have started to joke that I have invisible children – Loosey and Goosey – my 206 loose bones and my faullty autonomic nervous system (and twitchy mast cells). In any case, I do much the same thing as a single adult no kids and just had a crash ofm y own last week. So I’m having to cut back my work hours, look for a new (less stressful for me) job, and practice all the self-care I can including asking for help just like you described until my body re-integrates.

    Lying to ourselves never works, neither does soldiering (pushing) through. I’d say we should practice all this self-care all the time, so we never do crash. But yes, much easier said than done without a very conscious effort. Best to you and your stripy family across the pond!

    • Sarah Wells Reply

      I didn’t appreciate how easy it was to look after myself until the kids came along. Once I had them relying on me I catapaluted from one crash to another, spiralling further and further away from any kind of normality. I think my oldest was about 9 or 10 when I was finally diagnosed with hEDS (or type III as it was then) and things started falling into place. I have slowly learnt that self care is not selfish but essential but it is still very much a work in progress 😉 All the best to you and I hope that your search for a job gives you the balance that you need. Sarah xxx

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