Complex Health Needs and Lack of Sleep

Tiredness. Sometimes I feel it’s all I ever harp on about.

Someone will ask “how are you?”, my answer? “I’m fine, just tired”. The person usually responds the same.

It’s a good answer to have in a way. It’s better than not being okay, or being outright demoralised and depressed.

Okay implies a sense of normality and routine that is not afforded to families like ours when in hospital for example.

“I’m okay” and actually meaning it is a luxury for me.

It’s better than “my anxiety is crippling me today”, “I’m so fatigued it has entirely debilitated me”, “my back is really hurting and I don’t want to move”, and other choice phrases.

The reality is, my child is 7 and doesn’t really sleep.

Some nights she will sleep fine and we are all surprised.

I find on those nights I’m still on edge, waiting for a medical emergency or for her to cry out.

It’s exhausting.

It reminds me of when you’re pregnant and everyone around you jokes “get used to having no sleep for a few years!” and “oh those night feeds!!

I don’t miss those.” Well fast forward 7 years, and feeding is a 24 hour thing here.

Feeding pumps don’t mind about waking you in the night.

Amy has no other way to communicate than to cry and shout.

So those nights of constant ups and downs are still very much a reality for us.

Most nights it appears to be a neurological reason she is awake.

Sometimes her brain just pings into on mode and gets stuck there.

We see her wrestle against her involuntary movements getting frustrated that her own body won’t let her sleep.

She is on a whole host of medications that I am convinced would knock out a whale.

Yet here we still are.

Other reasons can include seizures, retching and needing suction, stuck in an awkward position, tubes tangled round her, feeding pump occlusions, entire outfit and bedding change needed due to leaking pump or full nappy.

Every time you enter the room you’re not sure what you’re going to be faced with.

Some days I pray to whatever out there that she isn’t stuck upside down, sometimes my back just can’t take swizzing her back round.

Amy’s doctor recently said to me “find a medicine or cure for children not sleeping and you’ll be a very rich lady!”.

Medicines help her get to sleep, but even then we can endure hours of seizures, hair pulling, lashing out, kicking and hitting before she is able to arrive in the land of nod.

It’s frustrating for everyone involved.

She goes to bed really early.

We have tried so hard to keep her up, we’ve tried everything.

But come 6pm it’s like someone has flicked a switch.

It’s quite isolating at times as it means that in non pandemic times we aren’t able to go out as a family in the evening.

Any attempt at doing this would result in self injurious behaviour, meltdowns and seizures.

It does make me sad.

I love being home but I would also like the option to go to firework displays, or the cinema, or just anywhere everyone else gets to go in the evening.

It’s easy to become resentful and depressed about it.

I have to remind myself constantly that this isn’t what Amy wants either.

No one actively seeks to be unhappy.

Recently more so than ever we have felt the effects of the lack of sleep.

This morning Amy’s eyelids were swollen and under her eyes black with exhaustion.

She sat in her chair rubbing her eyes and looking generally unwell.

We haven’t had overnight respite at the respite centre in over a year.

It makes me realise just what a difference those nights made for us.

People would ask “what are you doing with your overnight hours?” and I’d laugh and say sleep.

I do hope that one day things somehow improve. Sleep is so important for everything.

You can do all the exercise, all the healthy eating, all the mindfulness and meditation - but without sleep life is so much harder.

I suffer already with anxiety and insomnia some nights and find myself angry that she is asleep and I’m not.

Last night, just as I had got to sleep, she woke up.

So today I am sporting one of those tension headaches that feels like a tight band around your head.

There is little support really for lack of sleep.

There are medications for everything, though I am learning that it isn’t an exact science.

You can have epilepsy and still seize on meds.

You can have muscle spasms and still experience intense pain on muscle relaxants. You can have sleep meds and still be awake all night.

So much of our life is laced with this hypocrisy and desperation to achieve a more bearable normality.

Each issue we tackle, a new one will pop up and replace it.

No sooner have we resolved some complex gastro issues - and an epilepsy themed issue will emerge.

It’s a constant cycle of trying to manage these very complex health issues whilst also running on empty.

Amy presently can’t communicate what is bothering her and once upset it is very difficult to reason with or placate her.

I sometimes envisage myself in her position.

In bed, unable to sleep, and two people appearing at her bedside oblivious as to how to help but are her only option to get what she needs.

She must get so angry and frustrated with us as we bumble around querying pain meds, is the room dark enough, maybe there’s too much background noise, maybe she has an itch she can’t scratch.

Maybe she just wants to be alone? Or maybe she wants to be held?

Do we stay or leave? Whichever option we select usually involves failure and her continuing to cry if not gets even louder.

It’s easy to beat yourself up over it and blame yourself for not being able to meet your childs’ needs; I just hope that Amy knows that everyday we are trying our absolute best.

I’d love to look back on this piece in years to come and have found better ways to help her communicate and to have got the bedtime routine to be a less traumatic experience.

I’d love to sit by her and read stories together, or for her to have a little kiss on the head and drift off into a sound sleep.

But for now that isn’t our life, we just have to keep trying.