Today marks the end of Mental Health Awareness week here in the UK. This year’s theme is stress, something many parents like me struggle with.
A recent study found that the stress levels of parents finding that their child has life threatening or life-limiting condition are similar to those who survive major natural catastrophe. In many ways it is similar: After initial shock it can take years, decades to build your life again. And in some ways you’ll never be able to – the experience will change you so irrevocably that you’ll never be the same person you were before. But it’s not “abandon ye all hope” – kind of stuff: We are a resilient lot us human and it is possible to learn to manage the stress of the new normal, at least to some extent.
Many of my blogs have touched upon this subject. However, today I wanted to write about stress at the time when things get really tough – hospital stays (and in particular when things don’t go as planned).
A couple weeks back we went back to hospital as Freya was due to have a jaw surgery. We thought we were going to stay for a couple of nights, but as it often happens planning is futile when your kiddo is medically complex. A few days after the operation Freya developed a high fever and one side of her face swelled up. Yep, it got infected and yep, it got bad; the infection had turned into sepsis. An emergency operation and several days on IV antibiotics later we finally got discharged and whereas Freya seems to have returned to her cheerful self I feel like I am stumbling to the roadside after being hit by a truck.
How was this time so different? Why did I find it so much harder? I suppose the first reason is that my largely stable little girl did get very, very ill – something that hasn’t happened for a while. Also, with nearly two years at home we’ve forgotten what it is like being in hospital for more than a night or two. I almost felt like a newbie, rather than veteran hospital mum.
So, having just been reminded how stressful hospital life can be I thought I’d write down my top hospital tips for those who find themselves impatient (parent of) inpatient
- Make sure you get out of the hospital during the day every day
Years back, when Freya had her first intensive care admission a fellow mum told me that however ill my child would get I should always make sure that I’d go out at least once a day. This has proven to be good advice, though not always particularly easy to follow.
There are few situations where we feel as helpless as when our children are ill and when we feel we cannot help them. When they get so ill that they need hospital treatment we feel guilty about leaving and worry how about something awful happening if we are not constantly by their bedside. But it is also incredibly draining sitting indoors with little or no natural light for hours on end with your brain and gut filled with anxiety and fear. Go out, even if it for a walk around the block – it will make you feel (a bit) better
2. Don’t give up on self care just because you are stuck in a hospital
As parents of medically complex kids we often find ourselves at the bottom of the pile of priorities. This is partly because of circumstances, but partly because we put ourselves there.
A fellow medical mum recently posted about her own journey to accepting self care as an essential practice. “I felt selfish” she confessed. I totally get it – when Freya is ill in hospital taking an hour out to nap / have coffee / go for a walk feels just that. Except that it isn’t, quite the contrary. I am a big believer in happy mums having happy babies and I know that when I feel stressed and tense it affects Freya too.
So try to continue your self care routine when you are in hospital – whether it is concentrating on getting enough sleep, eating decently, getting some exercise in. It DOES make a difference (Here I do need to confess that I definitely didn’t practice what I preach. Whereas I feel I feel I have a robust self care routine at home this went out of the window at hospital where I lived off big macs and palpitation inducing sized cups of coffee. And yes. I felt crap)
3. It’s good to chat
Freya has a super rare syndrome (less than 100 diagnosed cases worldwide) so sometimes I feel like we live on a different planet compared to our social circle. We have nurses coming in every day, we have a shed load of medical equipment and carry out medical procedures at home that would have made me cry couple years back (and still do sometimes).
When you are at hospital you get the opportunity to meet other parents who are – if not on the same, then at least similar – boat. Speaking to others can have an immense benefit to you – it can give you hope; it can put things in perspective; it can even give you ideas about practical help from those who have been down the same road before. And if nothing else – it will help you to pass time (hands up if you have ever been bored at a hospital!).
4. Bring enough clothes – or at least some laundry detergent
I spend a good portion of my day-to-day life being vomited, peed, poo’d and snotted on: tracheostomy kiddos can be particularly disgusting in their emissions. Where as at home I can easily get changed, when you have finite amount of clean clothes with you this can become a challenge. Mark my words – take more than enough clothes (and then some) – or at least some laundry detergent. Putting on day 4 crusty socks and going commando will not make you feel any better about your child being at hospital.
And on that, particularly elegant, point I:
Wish you all a stress-free start to the weekend!