Hello again! How are you?
It’s fair to say week two in isolation hasn’t been as Mary Poppins-esq as week one, but I’ve still learnt a lot and several people have asked for me to carry on writing these posts weekly pointing out, quite rightly, that this helps me too.
Last week, I’m not ashamed to say, I was manic. I knew I was. I wanted to be everything to everyone – the best mum, ‘I’ll worry so you don’t have to children,’ the best teacher, ‘I was a primary school teacher, I’ve got this,’ the best wife, ‘Darling, it’s ok, you work work work, I’ll take care of everything else, ‘ the best cook, ‘ here have some nutritious goodness I have cooked from a mangle of shit in my freezer,’ the fittest person, ‘I will exercise every day, twice a day, I am an Olympian,’ the best friend, ‘are you okay, no I’m fine, what about you, what do you need?’ And everything else… the list could go on, you get the picture. I knew I was manic, but I didn’t care because I felt good.
Safe to say it was never going to last.
And this week, after a phone call from the hospital confirming that the boys were very high risk and we had to stay at home for twelve weeks, I crashed. I wasn’t frustrated. I wasn’t angry. I was terrified. Most of the time I can carry on as normal and to a certain degree forget that my children have a life-threatening rare disease. But it’s at times like this, when to be fair I could really do without any extra stress, that the differences between them and their peers are highlighted, and that they are about to have harsher restrictions put on them.
So, although this week has been harder than the first (still trying to get 18yo home, she’s in Bristol now at her amazing Godmother’s, so she’s getting closer!) I have learnt some things I think it would be handy to share, both for mums of healthy children and for those of not so healthy children, because… in the words of High School Musical… we’re ALL in this together.
- Emotions. Who knew there was such a range? Anger, fear, elation, mania, sadness, joy. I think I have felt them all over the last week and have at times switched from utter despair to complete elation within seconds. (discovering Baywatch is on Prime might have had something to do with this!) Ands what I’ve learnt is that all of these emotions are valid and important to recognise. We’re allowed to feel all of them. We’re allowed to sit and quietly sob for a hour on the sofa as well as dance like crazy in the garden. We’re human and we have not been here before, so there is no way of knowing how we are meant to react. For now I am riding the rollercoaster and going with it. At least I am feeling something. Each emotion serves a purpose, whether it’s telling me to slow down or to speed up. Be kind to yourself and to others no matter how they are reacting. We are all dealing with a lot of shit at the moment, chances are how people are behaving isn’t about you.
- Saying no. Boundaries – we all have them, but sometimes we are just not very good at putting them into action. Last weekend, when I was in full on Mary Poppins/Florence Nightingale/Wonder Woman mode, my in-laws did a call out for food. They are in their eighties, but not vulnerable as such, and had no bread. So I baked them a loaf, cleared out my freezer to give them some chicken breasts and a lasagna and drove down to drop it on their driveway. We stayed in the car and they took the shopping out of the boot (blue surgical gloves on and everything.) We smiled and waved and drove home. Then yesterday I had a text: Jen… we’ve got no milk. And I freaked out. I was worried that they were now reliant on me to fix this and every other food related emergency they might have and that I couldn’t. I had to send a message to my mother in-law saying that I was sorry, but she would have to source her own milk. Then I went on Twitter to ask for support groups in the area and Facebook to find someone to help. In the meantime – she’d taken control of the situation and sorted it all. Bread. Milk. Veg. The lot. Me saying ‘no’ had helped her take control and she is now as a result far less anxious than she was before. As am I. But I still felt so guilty that I couldn’t help, before I realised that in a weird way I did help anyway. Saying no is ok. There are so many different ways we can help people, but we (okay, I) need to learn to help ourselves as well. And sometimes that means saying no if you need to, which brings me on to…
- Watch your social media time. And I don’t mean Twitter and Facebook etc like I mentioned last week – I mean Zoom, House Party, FaceTime etc Ironically I’ve been more social over the last week than I have been for a long time and whilst it has been lovely and I am eternally grateful we have the internet and I have awesome friends who want to see my face online and have a chat, I’m exhausted! And it’s no surprise that Coronavirus is all everyone is talking about and that in itself can get very draining, well for me anyway. If you need to, say no to the group chat and then join in the next one. And don’t make the mistake of scheduling three for one evening. But of course (it should go without saying) if you can’t get enough of socializing online then carry on, but at times for me last week it was all a bit much and it also meant I never saw my husband because I was ‘out’ every evening. I know this is going to be the only way I can socialize for the next twelve weeks, but I decided that I don’t need it all in a week. Stay connected yes, but if you need a bit of a breather and some time out then that is okay too. It’s about knowing our own boundaries and tolerances and needs and doing what is right for us. I’ve scheduled in from 3pm – 4pm every day as ‘me time’ where my husband will take no conference calls and be with the boys. And I will upstairs with a book and no phone.
- Look after your eyes. See above point. If you have glasses for reading, wear them! We are all staring at screens or reading etc possibly more than we would normally, so be kind to your eyes and save yourself a headache or three!
- Breathe. Keep doing it. It was important last week and it’s important this week. But I’ve forgotten to take time to breathe this week and have needed regular reminders to chill for five. Breathing is simple. It’s free. It works. Keep doing it. The weather has been so lovely I’ve been heading out in to the garden and breathing in the warmth and vitamin D.
- Learn to let go. Of guilt. Of ‘I should be doing this,’ or of ‘I ought to be doing that.’ Of trying to be everything to everyone. Of trying to control stuff you can’t control. No you shouldn’t and no you oughtn’t and no you cannot control what is happening outside the four walls of your home at the moment. And sometimes you cannot control what is happening inside them either. It doesn’t mean you are failing or doing something wrong. I promise.
- Alcohol – it can be your friend and your enemy. For me, and there is no judgment here, I’ve discovered that hangovers and the depressive side of drinking doesn’t always help me cope with shit like this. You’d think I’d have learnt that by now, but no. I’m trying really hard not to drink every night. It’s tempting, but I’m one of these people that can’t really stop at one glass, so it’s better for me not to have one at all. On the nights I drank in the last week my sleep was poor and I woke up far more anxious on the mornings after. For me, it wasn’t worth it.
- Exercise really does help. I’m not a doctor so I won’t go into the mechanics of it, but doing some exercise burns off all of the extra adrenaline stress and anxiety causes. The body holds stress just as much as the mind and it really helps to get it out. Shake it off like Taylor. Dance the night away. Do the Wham rap. Swear at Joe Wicks when your legs are burning and he shouts for parents to get off the sofa and join in again. I don’t care how do it, just get moving! (okay I do care, social distancing etc etc!)
- Be selfish. And no, I don’t mean stockpile toilet paper or go to a party in the park. I mean know what you need and tell people. Do what is right for you; heck maybe even put yourself first for a change. As long as you are not neglecting or hurting anyone in the process then do whatever it is that you need to do. And in doing so if people are being pissy because they can’t pop round and see you (I have heard this happening) or are annoyed that you’ve cancelled an event or are refusing to go to one, you can quite rightly tell them to fuck off. We have been advised to stay at home for a reason. So do it.
- Start a wish jar. We did this today. ALL of the things we’ve taken for granted or that we miss doing are being written on paper and put in a jar and then we are free again, I’ve set a timer for us, then we will DO THEM ALL. It’s giving us hope and something to look forward to.
- Following on from point number 1 – your child or children’s moods might change this week. Again, this is normal I think. Mine are moodier, more lethargic, less enthusiastic about any sort of directed learning. I can’t decide if Joe Wicks (brilliant though he is) is a fab way to start the day, or if he’s tiring my children out and depleting them of all their energy resources by 9.30am. My seven year old is finding the change and isolation the hardest. Luckily we had all the stuff needed to make a sensory bottle, which is helping him, but we’ve also made a safe space for him to escape to if he needs some time out. It’s hard not to snap, but for me I find letting him get it out of his system best before I then go in for a hug. I validate his emotions, he is allowed to feel angry and frightened and overwhelmed and everything else, but he’s not allowed to hurt anyone or break anything because he is feeling that way. You know your children, and you’ll know what works for them. Here, at the moment, it’s a sensory bottle and some time alone to let the emotion pass. Then a hug and a chat about it. And an apology if needed. Failing that bribery and corruption all the way, fuck it. As I’ve said, we’ve never been here before; we don’t know the right or wrong ways to handle this. Just survive!
- Remember to take it one day at a time. I became overwhelmed when we were told we had to stay on for twelve weeks. It seemed so long, and that period of time is when all of my children’s birthdays fall. I was sad for all of the things we had to cancel. I couldn’t even begin to think about when this is all over because I was terrified that for us it would never be over. It all became too much and I had to remind myself and listen to everyone who said, one day. Just take it one day at a time. And if that is too much then just one hour at a time. Breakfast. Go outdoors. Lunch. Break it all down to manageable slots. One day at a time is doable and realistic in a time when things can change so drastically in a day.
I hope that all makes sense. This week feels more muddled, and my mental health has certainly been all over the pace, rather like this blog post I suspect.
Hang in there everyone!
And as the famous quote goes…
If you’re going through hell, keep going!
Beautifully written Jen. Thank you. Take care of yourself & your gorgeous family xx