It’s just a cold! (or it’s just the straw that broke the camel’s back)

‘It’s just a cold!’ (or; ‘It’s just the straw that broke the camel’s back’)

What a month. We have limped through a sickness bug, throat infection, cough and heavy cold… and last night the throat infection was returning, and T’s cough & cold seemed to be having another blip…

School has had to be missed by all 3 at different times over the last few weeks. Church has had to be missed. Many of my diary things have had to be cancelled and take a back seat, and I’ve been late & last minute for many other things. Sleep has largely been missed too.

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The trouble with illness is partly the disruption to usual patterns and routines and the anxiety that causes. And when it goes on for a chunk of time it’s also troublesome to break the newly formed patterns like ‘sleeping’ on the sofa – you sit up on sofas so it’s an acceptable place to be propped up, whereas beds are for lying down in so being propped up in bed is awkward and hard to accept. Or the transition from being at home to having to go back to school – especially after the exhaustion of getting used to not being where you are ‘meant to be’ for the last day or two. And none of these transitions are very predictable, I can’t give advance warning, I can’t put them to bed at night absolutely certain that tomorrow will be the day to return to school, it has to be ‘lets see how you are in the morning’, or ‘we’ll have to check your temperature and then decide’…

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The trouble with illness in a family is partly high anxiety. Anxieties run particularly high about sickness bugs, but happen with all the common illnesses that come and go. Quarantines have to be established. Panic at other people ‘touching my things’ or being too close, ‘in my bubble’ reaches another level. Many times when one person in the family is ill others become genuinely physically unwell brought on by anxiety – which of course I can never be absolutely certain of, so the same quarantine procedure has to be put in place which although helps some makes that person feel even more unwell.  Yes there’s plenty of anxiety about catching whatever it is. But there’s also high anxiety about the different physical sensations about the symptoms. Some sensations are intolerable, creating regular sensory overload and meltdowns – especially difficult in the nighttime. Some sensations are just plain frightening, which causes huge unmanageable emotion also resulting in meltdowns.

The trouble with illness is the difficulties of communicating and understanding. ASD for us includes difficulties distinguishing emotions (Alexithymia is the name for this, we often think of it in terms of emotional literacy) which makes it incredibly difficult to even know what’s being felt and then there’s the other hurdle of putting it into words. Emotions and physical sensations all roll into one big bundle of overload that is very difficult to manage, self-regulate, and generally put up with! And all Andrew & I can really do is try to keep things as calm as we can (not easy) and try to help name things for them which can sometimes help to break that bundle down into smaller packages. We can provide some structure and safety, the temperature checking, the written down times for painkillers, the bringing of water, food and stories.

The trouble with illness is partly the need for medication, and doctors visits where they might poke and prod, or even worse ask questions! Medicines are a big difficulty, many we cannot even get near to our girls with, some can be swallowed but are unlikely to stay down, some we can eventually get them to take but the ritual that ends up evolving will be long (very long at times) and painstaking – having to be in the right place in the house, or followed quickly by the ‘right’ squash, or yoghurt, and often having to have complete privacy and silence to be able to cope with taking it… whatever the ritual becomes, it will be riddled with anxiety, stress (and the parent pressure of knowing it’s necessary for them to take in order to get better) and tears… which brings me swiftly on to…

The trouble with illness is partly the anxiety it evokes in Andrew & I about the long term impact it has on us all. We worry intensely about whether the break in the routine of eating (relatively well) will be near impossible to come back from. And despite it being a ‘good patch’, with weight gain and more energy than ever before it is something I have yet to relax about. We worry intensely about whether we are missing something serious when it is difficult to find out what is hurting/different/bothering them, so our usual high alert goes into overdrive. We worry that we may never get any sleep, ever – which may seem irrational, but seems to be backed up by an awful lot of evidence when I sit and dwell on it. We worry we will run out of the energy we will need to keep going and step up to the challenge of establishing ‘normal’ routines again once they are better.

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And we have to lean back onto our faith that we are not doing all this alone, or in just our own strength. That we are loved by a Father who knows we worry and loves us still. Who understands us and our three unique children especially when we are struggling to understand, and who knows what we need.

 

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