Emotional and Physical Exhaustion and Complex Health Needs Parenting

I am tired. I know I sound like a broken record. I even just looked up the word “tired” in a thesaurus to see if there was a more jaunty, fun way to say it. “Dead on one’s foot” amused me, and seemed quite apt.

There are different types of tiredness. Or at least I think there is.

There is the residual daily tiredness that is felt from multiple nights of broken sleep. Be that from your child having neurological issues that mean sleep is a random and infrequent event. Be it the alarming of the feeding pump or the need to reposition your child. There are many reasons that every night is an eventful one in our house. It’s that exhausted, heavy limbed ache in the morning that you feel when you know that it’s time to get up.

But there is the other tiredness I am feeling. The tiredness that no amount of sleep can fix.

It’s the tiredness you feel from the constant fight. I don’t want to fight.

I dearly wish that when I speak out and ask for help, or request something, that it is listened to. No lip service, no promises of returned calls, no apologies, no excuses (cough, covid, cough, funding). If I ask for something, you can rest assured that I have agonised and ruminated over this request for some time. I have considered every option - is there a way we can do this by ourselves? Do we need this… now? Be it help when in hospital, adaptations, renovations, equipment, medicine. So often the staffing, funding, resources, provision - whatever it is - it isn’t there. Each email or call is met with panicked dread. Is it more rejection? Is it more forms to fill-in? There are days where I feel like I can’t take one more bad piece of news.

The other day I treated myself to a nap whilst Amy was in school. When I awoke I was met with a huge pile of feeding supply boxes outside, a 76-page renewal form for Amy’s DLA, a confusing email about the future of our respite service, and an email to say one of our carers had been cancelled for that afternoon. I honestly just wanted to crawl back into bed and pretend none of this had happened. I had hoped to wake from the nap caught up on sleep and dare I say it, refreshed. But straight away the tension headache appeared. My head was pounding, my heart had palpitations and I felt shaky. Do I counter any of these things? Do I have the emotional energy to handle this right now? Or maybe I am overreacting and need to learn to cope better? So I set off on a journey of self-sabotage. I tell myself I don’t cope well enough. I tell myself I am not strong enough. I tell myself I’m not a good mum. I feel guilty for feeling so many emotions. I had been happy that morning, and now my mood had taken a nosedive. These extreme fluctuations in mood are tiring in themselves.

One type of tiredness seeps into the other. Together they are a deadly combination. The mix of no actual proper sleep affects your mood, metabolism, brain chemistry, your physical and mental health can become compromised. Your immune system takes a bash. Each common cold lingers for far longer than it should. Your body has no choice but to fight. This physical tiredness makes the fight harder. The effects of the fight are intensified.

I'm not sure what happens when the emotional and physical energy resources are depleted. I was told recently that I seemed indignant and resigned. I think it was an involuntary act of self-preservation. I hadn't actively noticed this about myself until it was pointed out. I was barely reacting, to anything. I just didn't have it in me. When Amy was ambulanced last week I barely even reacted. It wasn't because I didn't care. It was because I cared so much that my body couldn't keep up. I responded and arrived at the scene as quick as I could and held her assuring it would be okay. I felt relieved she was stable, but I felt equal parts emotionally hollow, and emotionally explosive. All I cared about was getting her better, getting away from this awful place, and trying to prevent it from happening the next time. I didn't get that usual feeling of fear and panic, I felt almost a sense of routine about it.

Distressing as it is having your child escorted to hospital by paramedics, it's happened to us more times than I care to remember. Falling to pieces doesn't help the situation. It isn't good for, myself, or those around me. Becoming emotionally numb at times is a strength and takes more energy than you would think. Suppressing the urge to break down and cry "why us, why her?", blocking that surge of adrenaline, forcing down those cortisol levels and putting up those barriers. Trying to keep your patience when asked things like "does she need that hospital bed?" (no, we have it for pure lols?! We love to inconvenience ourselves for sheer banter). Trying not to scream when told "only one parent allowed" when your child has complex health needs and the rest of the world has moved on from covid. Trying not to laugh sarcastically when told that you as the parent as classed as the child's "visitor" when you had been responsible for drawing every med, giving every neb and so on. Trying to remain composed at people thinking just me on my own is sufficient when her health is in crisis, and yet it takes two professionals to care for her. Ignoring hypocrisy and wild rules is a real challenge.

Please note that this is not written for sympathy, or to be told what a great job I'm doing. I know I'm doing a great job, and I don't need sympathy necessarily. My intention here is to reach out to those in similar positions who currently don't feel heard. They feel forgotten, unappreciated, isolated, unsupported, and a whole range of other feelings. We must talk about it and share experiences and root for each other.

They say to look after yourself otherwise how can you look after someone else. You can’t drink from an empty cup. In an emergency, apply your oxygen mask first. If you don’t make time for your wellness, you will make time for your illness. People relay all the cliches to me daily. But I am left wondering - why are so many families being failed then if we need this help so much?

Right now I am not sure of the solution. I think we have to take each day as it comes. Celebrate any small wins, and hope for tomorrow to be a brighter day. Try to fit in sleep where you can, try not to become too attached to plans as they can be cancelled at the drop of a hat. Try to manage expectations. Most importantly - be kind to yourself.

I see so many families like ours feeling the same. My heart goes out to them. I see their struggles and wish things could be easier. I wish them all the sleep they need, all the support they need, I wish them fewer obstacles, fewer red flags, less rejection, no hospital admissions. We recently had another hospital admission. Now that Amy is better she is so lucid and happy. She has been so sociable and lovely. Her learning is better now she feels right. She is thriving in many senses. She had an amazing parents evening review. I am bursting with love and pride for our girl. She is (and her dad too) truly the glimmering beacon of light amidst the rest of the chaos that can be our lives at times. I have to enjoy these times all I can because as they say, Winter is coming.