Week Twelve – monsters.

This week was always going to be a tough one for us, with the announcement that lockdown was about to be eased and the general population were going to be able to do things that shielders cannot, but I didn’t expect it to coincide with a mass influx of monsters descending on the village I live in. 

I’ve mentioned my inability to break rules before (as well as my unrealistic expectations that everyone else should be the same) and before lockdown was relaxed even further I was struggling with people I know bending the rules to fit their own needs – my in-laws for example, who meet with my sister-in-law and her family when the rules were, at that point, that you were only allowed to meet one other family member at a time. Not six to go for a walk. It’s taken a while for me to realise that my anger at this was probably jealousy mixed with frustration because our situation means we cannot bend the rules, not even a little bit.

And then this weekend, thousands of young people defied the law and shunned the rules and partied like animals along the riverbanks where I live. There was shameless drug taking, excessive littering (think used tampons, dirty nappies, used BBQs, nos canisters and so much more) using residents’ gardens as toilets as well as verbally abusing them, shagging in broad daylight on a patch of grass children play on, parking without thought for any emergency services that might need to get through, attacking a cyclist and breaking his nose and so, so much more antisocial behaviour. In all honesty I was scared to leave my own house, and even if I had chosen to leave it would’ve been impossible to maintain the safe two metres distance from anyone. At one point I couldn’t even sit in my garden because I could hear them all screaming and swearing and throwing all the hard work and sacrifice I have made back in my face. It made me so angry. The disrespect these people showed was off the scale and I hated every single one of them. I became obsessed, watching the local sailing club’s webcam, my anger growing with every waft of smoke from a BBQ, every splash of a teenager into the river, ever piece of litter left behind. 

It highlighted how different their pandemic experience is to mine. They’re not worried about catching it, and why should they be? It’s not targeting youngsters and we’ve not had a huge enough load of cases here for them to know someone it has hit. It’s not close to home for them. Not only was I angry because they were not giving a thought for anyone but themselves, I was angry because I couldn’t do the same – I couldn’t party without a care in the world. I was envious of their enjoyment and carefree abandonment of any responsibility. They couldn’t be further away from where I am right now and that only served to highlight how hard I am finding all of this. 

Since the pandemic started, and as you’ll know if you’ve been reading these blogs, I’ve been struggling to accept that I know no one else going through this in the same way as us. I know no one else shielding their children. Not even another parent of a child with PCD. Thanks to the rule that children with PCD shouldn’t mingle (as with Cystic Fibrosis) in case they pass on dangerous infections (oh the irony) we’ve never met any other parents of children with PCD. But life was okay when everyone else, shielding or not, was in the same boat as us and having to self-isolate and stay home. But then the rules changed, and we’re in a very different boat now. My book club will happen without me socially distanced in my neighbour’s garden this month. My 11yo’s friends are going back to school without him on Monday. My mum is meeting my brother and his family on a beach. Zoom meetings are dwindling in favour of group face-to-face meetings, of course they are. And all of this is happening when thousands of people are still being diagnosed daily, and hundreds of people are still dying. It doesn’t feel right to me, but I understand how excited people are to see each other and how they are craving these face-to-face meetings and getting so much pleasure from them. 

But it hurts I’m not able to be a part of it. And neither are my children. (Just going add a disclaimer here – I am not for one minute saying my friends and family are insensitive souls who are purposefully leaving me out. Not at all. They are lush and I am blessed and I am not expecting them not to meet up just because I can’t be there, of course I am not, but as I always say there is no point in writing these blog posts to document this time if I am not going to be honest about my experiences.)

And so, my children? Well, they’re feeling it too. It’s the 18yo’s birthday next week and she’s gutted she can’t have five friends round for a socially distant barbecue. All of her university and school friends are beginning to meet up again and it’s no surprise she’s suffering because of her brothers’ vulnerability. It hurts to see her upset by it and anxious about what her return to university will be like, and if she’ll have to go through the tough process of self isolating for two weeks every time she wants to come home. 

And the boys? The 8yo claims he is okay, and to be fair he’s always been happy in his own company and at home so I believe him, thankfully he’s probably not as aware of the situation as the older two are. The 11yo had claimed up until now that he was okay with it all, but the cousin he’s been communicating with and playing with online daily went back to school this week and I think it’s finally hit him that everyone else here will be going back too. The conversations in the Whatsapp groups he’s part of will change to subjects he won’t be ale to contribute to, because he won’t be experiencing them. We briefly mentioned that this might also be true when the new school term starts in September and that he may not be able to start secondary school with his peers. But we’ll deal with that if and when it happens. 

After the events of the weekend I spoke the PCD psychologist again yesterday, who was as wise and wonderful as ever. She taught me that’s it’s okay to voice how I am feeling and that I’m allowed to be upset by the seeming injustice of all of this. And she helped me acknowledge how external factors are making my life even harder at the moment. The virus. The easing of lockdown. The monsters by the river. I was having a difficult day yesterday when I couldn’t see the wood for the trees, where I felt like this pandemic was never going to end and that we were going to be trapped and forgotten at home forever. It’s fair to say I was at my absolute limit for dealing with external stresses. But then she rightly pointed out that I am getting through it, and that I am supporting my children and my family to get through it too. She asked to me to think of somewhere I am desperate to be, and the answer was as it always is … on a beach in Cornwall. A beach I’ve been watching the webcam footage of for weeks now. She asked me what is it about the beach I am craving, what does being at the seaside give me that I’m not getting right now, or that I can attempt to replicate here. She doesn’t mean buying play sand from a supermarket and listening to wave sounds. She means core values and emotions. And I haven’t been able to stop thinking about it. Going to a beach, watching the waves roll in, digging my feet into the sand offers me so much more than fresh air and freedom. I won’t share my thoughts on this with you now because they are not fully formulated, but it’s certainly something I’m going to be focussed on this coming week. A new technique to help me continue to get through this, as I’m sure there are still fresh challenges to come. 

And so all that is left to say is – if you are meeting up with others then have fun for me too. And please, please do it safely.  


Week Eleven – them and us.

Week eleven – them and us. 

A lot has happened this week, both outside of my home and in it. Inside the house both my eighteen year old and my eleven year old fell down the stairs, which warranted another necessary trip out for the house, this time to the local minor injuries unit. Thankfully the eighteen year old just had a few bruises (she stayed home) and it would appear there were no broken bones in the eleven year old’s foot (swelling can hide this though so not 100%) but definitely lots of torn muscles and ligaments, which means he’s hobbling round instead of running. But once again the NHS were amazing – we went straight in when I told them he was extremely vulnerable and shielding, the x-ray department was cleared, and the staff were kind and compassionate even in full, uncomfortable, sweaty PPE. I like to think that as a family we are doing the public a service and testing out all of the different NHS settings for you in case you need to know what they are like in the middle of a pandemic (gotta laugh really.) Newsflash, they are ALL great. 

This morning I drove the eighteen year old to Cheltenham to collect all of her stuff from university halls. The motorway was busier than I expected, but we saw only the maintenance man at the campus and no one else. Getting there for 8am was a good idea! But it made me sad that her first year at university has ended this way. She was having the time of her life and although it was hard for me not having her here anymore, knowing she was the happiest I have ever known her helped. It’s sad it’s been cut short and that she didn’t get to spend the summer term there having a blast, but like she said, she has two more years to make up for it. Let’s hope that happens! 

So what have I learnt this week, amidst all of the ups and downs of life at home and externally thanks to the crazy news? (No, I am not going to mention it, I’ve decided not to talk politics on here, too divisive.) Well, I wouldn’t say I’d learnt so much as come to some conclusions…

  1. Even though we are allowed to go out for one hour of exercise, we don’t want to, and that’s okay. We have all been out for a walk in the last week, not together, but one at a time everyone has come out with me for a stroll near our home. Trouble is, our home is near a beauty spot (although it’s fast becoming a spot full of rubbish, scorched grass and empty nitrous oxide canisters) and that means people from far and wide all come to party here. Crossing the main road whilst maintaining social distancing is impossible. Cars are racing to get to the river near us, down a narrow road, and it’s dangerous, not to mention scary when drivers stop to call my lovely neighbours who ask them to please slow down, ‘fucking slags.’ People are picnicking where they never have before and leaving a whole load of crap behind. And it makes me angry. They BBQ on the grass and leave large black smouldering spots behind. They are littering and f*ck only knows where they are going to the toilet because the public ones aren’t open. And to be honest it makes my anxiety rocket. It’s horrible to be out walking near people who think it’s okay to not social distance at all. I hate it. I get that they don’t know we’re at the far end of the spectrum for shielding, or that we’ve only just started going out again, but there seems little regard for staying safe round here at times and it makes going for a walk not worth it. I don’t care if people want to come to the river, but I do care if they shit in bushes, take drugs and brush past me whilst they are on their way there after having called my neighbours fucking slags. Just no. They can f*ck off. I’d rather stay at home. 
  2. Following on from the above – I think some people think this is over. And I’m not going to elaborate on this musing for fear of sounding like a judgy cow or wading into talking about politics territory. But like I said above, I appreciate we are at the far end of the spectrum of how closely we have to follow the rules, but I think that even if we didn’t have to shield we’d still be respectful of them. All I will say is, I’ve learnt that I cannot change what other people are doing or thinking, I can only change my reaction to it, and as long as I know we are doing everything we can to keep our children safe then that’s enough for now.
  3. Social fatigue. You heard it here first (although, maybe I need to Google it before being so bold as to claim I thought of it?!) I reckon this is going to be a thing. (well, not for all the teens ignoring the rules down by the river that I can hear right now, but for the rest of us maybe) It was my middle one’s eighth birthday yesterday and he was blessed to have so many of his amazing friends pop by and chat to him through the lounge window. But my goodness he was exhausted by the end of the day. It was as if seeing so many people and having to make conversation was almost too much. By the time his last ‘guest’ turned up he was almost close to tears at having to lean out the window and shout ‘thank you,’ again. It got me thinking – when we return to normal, will all of our senses be so over-stimulated by touch and speech and smell that for a while we become super knackered by it all? When I think about the difference between how many people I used to communicate with on a daily basis before this all happened to now, then the drop is huge. The mums on the school run, the cashier at the supermarket, the strangers in the street (yes, I’m thinking of the flirting thing again.) There were so many people, even if just for one word or sentence, that I spoke to daily and now it’s pretty much just my children. And maybe my husband when he emerges from his ‘office,’ as well as the odd Facetime, which let’s be fair isn’t the same and is tiring in a very different way. I worry we’ll either have nothing to talk about or will be so pleased to be social and see people that we can’t shut up. Maybe some of you are ahead of the game on this now you’re allowed to be socially distant with one other person? Is it exhausting? Oh, and I’ve just Googled social fatigue, turns out it is indeed a thing…

Social Fatigue occurs when a person is overwhelmed by being put into far too many socialsituations for their comfort, often resulting in boredom or annoyance at those around them.

…maybe I should call it social exhaustion instead…

  • I’ve just asked my eighteen year old what she thinks I’ve learnt this week and she’s made a good point… she says I’ve relaxed (believe it or not) since being in A&E and having to take the eleven year old to the minor injuries unit. And she’s right. Most people have been able to leave the house for an hour to exercise and more recently for longer, and I imagine have got used to being around other people and being more confident as the weeks go on and they don’t become unwell. I’m still very much in the early stages of that process and thinking that everyone I pass has Covid-19 and will give it to me just by looking at me. But the more I go out, the more it becomes normal and the less anxious I am. Don’t get me wrong, I am still anxious and I am in no rush to go out for a walk this afternoon for the reasons I mentioned above, but the anxiety around it all is easing a bit. She also noted (she is a wise one) that I’ve spent a lot of my life living with anxiety and so this is somewhere where I am ahead of the game, I’m used to having to calm myself down and know exactly what techniques work. I’m actually sleeping like a baby and haven’t had a panic attack in a while. Is it weird that I’m grateful for this? Grateful that I have been in so many shitty situations that I know how best to handle this one? And know that because I’ve survived worse before then I will do again? I was wondering if the universe was trying to teach me something by sending me so many challenges in lockdown, and maybe this is it? That I’ve got this. 

Anyway, I think that’s it for this week, but just to reassure you the news has made me fume. And with the bizarre approach to track and trace starting today I don’t see that frustration disappearing any time soon. 

One rule for them, another for us… (dammit I went there after all, sorry.)

Take care x

Week 10 – it’s a long one, grab a cuppa.

It’s been two weeks since I last wrote a pandemic blog post, and what a two weeks! Full of ups and downs as well as the most terrifying experience of my life. 

Mostly we’ve been doing okay, tensions have been rising a bit and there’s certainly more niggly arguments in the house than there have been so far in lockdown. For week nine, I was mostly finding the whole food shopping situation stressful as well as trying to come up with different meals every day from what ingredients we had. It felt like a huge responsibility. Not being able to pop to the shops is harder than I thought it would be (sounds trivial I know) and screw trying to control one thing like I said a few blog posts ago, I’d quite like someone else to worry about feeding me now please. The only time someone else has fed me in the last ten weeks was the nurse who gave me a ham sandwich in hospital on Saturday.

Which brings me nicely on to this week, week ten and what I’ve learnt…

  1. The NHS is fucking amazing. On Saturday morning I woke up with a twinge in my right hand side and so distract myself I decided to ignore it and bake my friend’s 40thbirthday cake. Within ten minutes I was writhing on the floor convinced I was dying. Worse than labour – for those of you who have given birth, imagine the peak of your strongest contraction, but no tail off, no breather, just that pain constantly no matter how you lie or sit or whatever you do. And then imagine not knowing what was causing the pain. I have suffered with health anxiety from the age of five when I first thought I was having a heart attack (no word of a lie) and so I honestly thought this was it. I’m so grateful that my AMAZING nurse friend, Amanda, was on my doorstep within minutes of me calling her and screaming down the phone that I needed help. (Love you, Mand) The ambulance crew were also phenomenal. Kind, efficient, calm. Amazing. Even when I told the young 28yo male paramedic that he was ‘a lucky bugger’ for getting to look at my saggy old, have-given-birth-to-three-children, stomach. Gas and air has a lot to answer for. The staff in A&E were also wonderful. And although I was waiting for a scan for hours they managed my pain and reassured me I was in good hands. I’ve never been in an ambulance and the only time I’ve been to A&E was for a broken ankle nineteen years ago. Trust this to happen in lockdown when I am shielding two extremely vulnerable children and screaming at them to ‘be bloody careful, we can’t go to hospital right now,’ and haven’t left the house for ten weeks. But, the positives are that now the hypochondriac in me knows that if I need NHS care, I can get it. THANK YOU NHS. Ps it was a kidney stone and it has now gone into the sewage system. Thank f*ck. 
  2. My body and mind are amazing. Sounds daft when my body grew a stupid kidney stone that made me think I was dying, but when that was happening my body and my mind coped. My body was strong, my mind even stronger. I rarely big myself up but, as the lovely paramedic told me in the ambulance on Saturday, I should do it more often! And so I will. Being on my own in A&E and not knowing what was going on was really scary, but I distracted myself and focused on my breathing etc etc and without sounding like too much of a knob, I nailed it. I am brilliant. End of. 
  3. Nostaglia. I was chatting to a friend about this a week or so ago, and it’s stayed with me. We were talking about how our memories are more powerful than ever at the moment. A forgotten smell can make me feel like I am right back there in the moment, or a memorable song. I heard an old tune the other day and I was suddenly transported back to travelling on a coach to Switzerland for a ski trip when I was seventeen. I felt the exactly same as I had done then, and it was so weird. My friend and I came to the conclusion that our brains are desperately searching for new experiences because at the moment all they get is Groundhog Day. And so in searching for something to feel our brains are taking us back to real experiences and real emotions and feelings. I’d be interested to know if there was a scientific reason for this! And funnily enough, after my A&E trip, it hasn’t happened so much this week. 
  4. What are you missing? Flirting with strangers… Don’t judge me! Earlier in the week Sara Cox asked people to comment on what they were missing, but not the obvious like friends and family, the more shallow things. And this, flirting with strangers, is now all I can think about! I miss strangers, I miss interacting with them, flirting or not, I miss talking to people other than my family and friends (no offence!) The little jokes you have with people selling you coffee, or waiting staff in restaurants, bar tenders, random people when you’re out walking the dog, anyone! Male or female! Maybe it’s more that I miss spontaneity and conversations that flow and are fresh and new. And no, it is not why I told the paramedic he was a lucky bugger, like I said, gas and air. 
  5. I don’t like (most) people. Sounds harsh, maybe I should put it in a different context as this could get contentious. What I mean is that this experience has taught me that the reason I sometimes find people’s actions hard to understand is because I expect people to have the same standards and morals as me, and I’m disappointed when I discover they don’t. And this is where anger and frustration comes in at the moment. A few friends said on a FaceTime last night that lockdown was to be put in the same category as politics and religion, ie something that should never be discussed. And I get that I’m in the extreme having to shield two extremely vulnerable small people, and that my anxiety surrounding Covid-19 is higher due to this, but that aside it’s worth noting that I am fundamentally a rule follower. If I’m out on a walk someone wants to go off the designated pathway and walk where the little yellow arrow doesn’t point, I will not follow. I don’t speed. I park in the designated spots at all times. Blah blah blah, yes I am a saint. (rolls eyes like you all are!) It’s not because I’m a dick it’s because I’m terrified of something bad happening if I don’t do as I’m told _ I’m sure a psychologist would have a field day with that one. And so if the government, whether I trust them or not, tells me not to leave my house or have people round to my house (even family) or go to the beach etc etc etc then I won’t. And not just to protect my children, but to protect all vulnerable people and the yes the NHS too. There’s something called cognitive dissonance where people convince themselves that they are abiding by the rules, when in reality they are bending them. And then there is selfishness and stupidity. I won’t go into it because it makes me sound like a judgy cow and I might piss a few people off, this is certainly divisive, but these rules are in place for a reason and breaking them isn’t just about you being able to assess your own risk – it’s by far more complicated than that. If in your gut what you’re doing feels wrong then it probably is. And I know it’s hard. And I know the government guidelines have been confusing. And I know I probably need to permanently come off social media so I can’t see photos of packed beaches in Southend followed by comments about how great it is that theses people have a right to be there and aren’t giving in to fear. Or that they are probably teachers. Do not get me started. But on that note…
  6. I love teachers. They have been working their butts off and putting themselves at risk going into school to look after some of our most vulnerable children. This is much more than just teaching. They have been sorting food vouchers and driving to houses to deliver food. Phoning parents daily to check they are okay. Driving to houses after domestic violence incidences to see that the children are safe and unharmed. Delivering work in school, on line and in person. And there is so much more. They have no PPE. No protection. And now they are having to prepare for a phased reopening of schools and all that entails – not just lesson planning, but thinking about how to stop any spread of the virus. Ordering bins with lids on and toilet seats, stuff that wouldn’t even cross your mind all with no extra resources or finances. Rearranging classrooms so social distancing (how the feck you do that with four year olds I don’t know) can be implemented as much as possible. All the while parents are expecting them to keep their children safe and we all know who will be blamed if the worse happens. Who knows, maybe there’ll be a VE Day caused second wave and they won’t open on June 1st. But what I do know is that we should bloody well be clapping for teachers as well as NHS staff. I am in awe. My children aren’t allowed to go back in the first wave, and I am grateful that decision has been taken out of my hands, for now. The whole thing just sits very uncomfortably with me. 
  7. Finally, I know that you’ll all be pleased to know that I have learnt to lower my standards. Normally I never leave the house without make up on, but in the past week I have chatted to people out of my window almost naked apart form a small towel after coming out of the shower (again, not in a flirty way) and have answered the door at 3pm in the afternoon having done Joe Wicks and not showered in the morning with a large chocolate cake stain down my vest top, underneath which was no bra. Sexy. 

Right, think I’ll leave it there as my children would probably like some lunch sometime soon. And I want to go and sunbathe. 

Love to you all x

Week Eight – how are you?

Whenever I speak to people at the moment, or receive a text or a Whatsapp, the question that is always asked is… ‘How are you?’ and I think I am beginning to lose the ability to know how to answer it. Not in a bad way, just in a, I’m not sure what I’ve got to say, way. I’m fine doesn’t seem to cut it. Nor does, I’m okay. And chances are that when you ask me that question I’m exactly the same as I was the last time you asked me that question. Because nothing is changing. I have no news. 

And I feel like I’m running out of things to say. Well, new things anyway. 

It’s nearly 5.30pm and normally by now my blog post would’ve been written, edited and posted, but today I am only just getting round to even attempting to write it. I’ve baked a cake. Have home -schooled the boys. Sewn some bunting for VE day tomorrow. Eaten. Done Joe Wicks. It’s been a busy day, but I have been putting off writing this in spite of that because I wasn’t sure I had anything new to write about. Let’s see shall we…

What have I learnt this week? Well…

  1. It doesn’t matter. This came up on a work Zoom meeting and I thought, oh my God yes. So much doesn’t matter right now. If we don’t do all the allocated home learning, it doesn’t matter. If my children are on their devices more than usual, it doesn’t matter. If they are up later than they normally would be, it doesn’t matter. Nothing matters because this isn’t forever. We’re all getting through the best we can. There is no right or wrong (pretty sure I’ve said this before, but oh well.) All of the rules by which we used to live don’t matter at the moment. It’s all changed. We are dealing with issues we’ve not had to manage before and so the nitty gritty stuff that used to be important simply, say it with me, doesn’t matter. Soon everything is going to be okay (it will!) and who knows, maybe this strange period of time will turn out to have a positive impact on us all. Our children will learn different skills, as will we. Maybe that’s what matters.
  2. Zoom gives me a headache. I love seeing people’s faces, but boy does looking at them on a screen hurt my eyes. It is so unnatural. I’ve started to wear my glasses again because most of my day is now spent looking at a screen. From messages on my phone, to home learning on the computer, to the tv. Even the book I just read was on my Kindle, another damn screen! I’ve realised that I need to factor in some screen free time, somehow. And whilst we are on the subject of online socialising, I miss the natural way conversations flow that doesn’t work on Zoom or FaceTime – if one person jumps in the sound goes and I can’t hear anyone. I almost want to manage the sessions like I would’ve managed circle time when I was a teacher, where only the person holding the teddy is allowed to speak. It’s just not natural. I like to interrupt and be interrupted. I like to hear everyone laugh, not glitch and go silent. 
  3. Everything is better when the sun shines. Fact.
  4. We are all awesome. We really are. We are drawing on emotional reserves we didn’t think we had. We are home schooling when we’ve never taught. We are living in isolation when all we want is company. We are keyworkers risking our lives to help others. Human beings are bloody brilliant and we are doing it – we are getting through this. We are pulling together. We are helping others. We are amazing! 
  5. Children are also awesome! The way they adapt, accept, live in the here and now and not worry about the future. I have learnt a lot from my two – and I know I’ve mentioned this before – but the way they just accept the situation and stay positive is amazing. Am. In. Awe.

And that’s it. I did have something to say after all. Who knows what next week will bring, Sunday’s press conference is going to be an interesting one that’s for sure. 

But I imagine that for us – working hard and shielding the boys – nothing much will change. And I can honestly say that right now, that doesn’t matter. 

Stay safe x

Week Seven – urgh.

How, how, how, HOW is it Thursday again already? I mean, when I look back over the past seven days, last Thursday seems like an age ago (ahh the sunshine!) but then it also feels as though I’ve blinked and here I am again writing another blog post during this fucking pandemic. 

This week hasn’t been the best. My youngest son has had a tooth infection and the stress of getting him some antibiotics for it has been quite high, for me, not least because I am the one who is mum, nurse, doctor and physio 99% of the time. When the dentist tells you he won’t treat the infection until it becomes life threatening then you freak out somewhat. Anyway, thanks to Eddie having a compromised immune system on top of having PCD the dentist did give us some antibiotics and they appear to be working, thank feck. (sorry, I might swear a lot today, go with it) Getting the antibiotics was also a source of stress as I’ve not left the house for weeks and so the whole thought of driving to the dental surgery and then actually getting out of the car and interacting with someone who wasn’t a close family member was not a pleasant one. And when I did go, it was so weird to get out of the car and walk on the pavement – on ground that wasn’t in my house or my garden – wearing actual shoes. The lady at the surgery was brilliant and not at all phased by me standing back and reaching out for the medication. As soon as I got in the car I wiped it down with an antibac wipe and slathered antibacterial gel all over my hands. Then I came home, showered and threw my clothes in the wash. I’m aware this was properly over the top bearing in mind I’d touched nothing other than the medication and had seen the lady at the surgery for about two minutes. And then this behaviour got me thinking, will I always feel the need to shower after being out and about? Will I always have to make my children shower after going to school, if they ever return? Will I always wash everyone’s clothes after a trip outside, even when they’re not dirty? Or become agoraphobic and never go anywhere because that’s easier? If you’re starting to hear alarm bells about the state of my mental health then don’t worry, I have already been referred to a psychologist through the boys’ PCD team to support our family with all of this, and she is wonderful. Once again the NHS is bloody brilliant. 

Anyway, what have I learnt this week… seven weeks into this weird, shitty, frustrating, anxiety-inducing, fucking horrible time? This…

  1. Just because you accept something does not mean you have to always be happy about it. Last week I was in a place of acceptance, or was it apathy? Did I simply have no energy to be concerned or upset about it anymore? There have been times in the past seven days when I’ve been genuinely happy and genuinely okay with staying home and not going out at all. But more recently I’ve been pissed off. I understand that we have to stay in and shield as a family, blah blah blah, but it really fucks me off at the moment. I feel trapped. Maybe that’s because the freedom carrot is being dangled for others – mumblings of a possible return to school on 1stJune (at the earliest) or suggestions of being able to have a bubble of ten people that they can see at the weekend. We won’t be able to have a fucking bubble. We can’t ask five other people to completely shield themselves just so we can see them, and so we’ll miss out on social interaction and my children will not be able to see their friends and it fucking sucks (sorry, mum, I probably am swearing a bit too much today, I’ll reign it in.) Some days I remember to take it one day at a time, and I can and I do and it’s ok. But on other days I wake up with a sense of dread and can’t help but wonder how the hell this is going to pan out for us. So do I still accept our situation and understand it? Yes. But am I happy about it? This week that’s a hard, no. 
  2. The more you are starved of something, the more you crave it. I heard someone say this on the television this week and it really resonated with me. It reminds me of when I was pregnant and wasn’t allowed runny eggs or blue cheese or various other foods I love. What I was being denied was all I could think about and my first meal after giving birth was always soft boiled eggs and toast soldiers. And it was delicious. But now I am starved of more than simple food, although flour is still proving tricky to get hold of, and I hate not being able to pop to the shops and get something I fancy at that moment in time, just because I want it. Right now I am being starved of so much more than cravings and whims. I am being starved of my family, my friends, the sea, freedom, feelings of safety and calm, reassurance that this will ever end, things to look forward to, things that make me who I am and keep me. The list goes on. And on. I am craving cuddles with EVERYONE, coffee dates, browsing in shops, long walks in the countryside or on a beach, laughter in a big group of people, someone else fricking cooking for me (I am sooooo over cooking twice a day every bloody day) time on my own. I miss my life. I’ve just read a novel about someone in prison and I identified with a lot of it. There was a line about not even being able to simply pop to the corner shop to get chewing gum. Urgh. Sometimes I feel like I’ve had enough crap in my life already and want to stamp my feet like a petulant toddler and scream that this isn’t fair. I haven’t broken the law. I shouldn’t be locked up. Yes, of course I am still grateful I have a nice house and a lovely garden, but sadly at times those things don’t always help or counteract having sick children. I imagine that even a palace can seem like a prison in time. 
  3. Expectations. Following on from the above I have learnt (well, it’s an ongoing process) to lower my expectations in many ways. I used to look forward to holidays or weekends away. The BIG things. Now I look forward to a meal I’ve planned. Last week it was a full on Wagamama meal that I cooked from scratch, this week we’re having a fake Nandos. I can’t look forward to the big things, like Disneyland Paris in the summer or a week away with my mum, my brother and his family in France and I have no idea when I will be able to look forward to these things again, if ever without the constant threat of evil viruses. So I have lowered my expectations of what brings me joy and what I look forward to. And I really am trying to find pleasure in the little things. Like looking forward to the weather improving at the weekend (where the hell has the sun gone?) or reveling in having just half an hour to myself. I’ve stopped putting stuff in the ‘what we want to do when this is over’ box because I keep reading articles (I know, I know, I shouldn’t read them) about how this is never going to be over and it just seems like I’m putting stuff in a box to be buried along with any hope of ever doing those things. So the little things are all I have to get excited about. Maybe there’s a life lesson there somewhere.  Maybe I should always learn to appreciate the little things. 

Right, I’m sorry I’m being more negative this week, but as always these posts are about being honest. There is no point in recording this time and being part of a research project if I’m not going to tell it like it is. And the novelty of this has definitely worn off this week. Everyone is a little bit more tired, a little more short tempered. Home learning is still going okay, but only from Mon – Weds. By Thursday everyone’s had enough and gives up, including me. The boys are saying they are bored more and more. The 18yo rarely comes out of her bedroom – she feels safe in there with her laptop and her online friends – and I get it. The husband is working harder than ever and by the time he comes down in the evening he is so tired he doesn’t really want to talk. Zoom meetings with friends are still happening, but I’m getting fed up of the slightly artificial way in which you have to communicate via them. And I am still unable to do any creative writing, which is making me feel like I’m wasting some of this lockdown time. But my brain simply cannot create at the moment, and maybe I just need to accept that, instead of battling with it and trying to force something that doesn’t actually need to happen at the moment… 

Lots of people have been saying we’re all in this together, and we are. But as a lot of people are also saying, and as time goes on I’m understanding more and more, we might be in the same storm, but we are very much all in different boats.

Stay safe everyone x 

Week six – acceptance

Thursday has somewhat snuck up on me this week. I have no idea where the time is going or how it is going by so fast, and yet it is. Time flies when you’re having fun, right? Does that mean I’m having fun? Finally enjoying this time? Partly, yes I think I am. Or at least I’ve accepted that this is the situation for us right now and so I ought to make the most of it. 

I’ve been thinking about what to write in this blogpost over the last few days and wondering what on earth to say – worried because I’m not sure I’ve learnt anything new this week, although I’m sure I must’ve. Usually by Thursday I’ve got a whole list of notes on my phone of things I want to write about. Small things I’ve noticed, or thoughts and musings I want to voice. But this week that hasn’t happened. There are a couple of things on my list, but nothing really new. I’m wondering if it’s because this is the norm now and I have finally let go of trying to control the situation. I understand that this is how we have to live and so I’m not thinking about how it’s all affecting me as much as I was. Like I said above, I’ve accepted it. And maybe if acceptance is the only thing I’ve learnt this week then that’s not a bad thing at all.

I have learnt (and am in awe of) how well most of us can adapt, although I know this isn’t true for everyone. Luckily my children seem to have adapted unbelievably well to lockdown and I am so grateful. Maybe the three weeks in isolation that my middle one spent in a hospital room aged five have helped him to be able to handle this period of time so well. If you asked them how they were then of course they’d say that they are bored, but in reality they’re always active and always find something to do. I was lucky they wanted to go back to ‘school’ aka Pikachu Primary, and start learning again on Monday. And I’m also lucky that they get on so well. They play brilliantly together and rarely argue. Maybe that’s one plus side of sharing your life with someone who has the same rare disease as you, you become a little team. It’s lovely to watch them interact with each other and bounce off each other’s ideas. Not an ounce of competitiveness or sibling rivalry – an actual godsend at the moment. I’m also lucky that they are also very accepting of this situation. They don’t question it. Everything is very black and white for them. There’s a virus that might kill them out there so they have to stay at home. It’s that simple. 

Work is still a challenge though, for both my husband and myself. He’s the breadwinner and so is the one who is locked in his bedroom/office from 8am until he emerges late afternoon, often without having had time for lunch. He’s taken a huge pay cut. He’s stressed. And so the childcare falls to me. But not just the childcare. The cooking. The cleaning. The home learning. Physio. Meds. Everything. And so my job, which I love, has taken a bit of a backburner. I was fortunate that I was able to take two weeks off over what would’ve been the Easter holidays, but now I’m meant to be back and I can’t seem to make it all fit. I only work ten hours a week, but even that is proving tricky. A routine is slowly emerging of home learning in the morning then free time in the afternoon where I can take phone calls, but I’m terrified one of the boys is going to break a bone in the garden with me watching from my office window, and so can’t focus like I should. And on top of that I find that the boundaries between work and home life are being blurred, which I usually work really hard to not let happen. I’m lucky I have awesome colleagues who are very understanding of my situation, but there is only so much they can do. We shall have to see how this one goes methinks…

On a positive I have noticed that I’ve been less anxious this week, and I think that’s mainly due to work and home-learning starting up again and me being busier generally. I’m exhausted by the end of the day, but I’m sleeping better. It’s hard because there is little time for arts and crafts and self care at the moment – the dishwasher is on at least four times a day at present (I am terrified it’s going to break down!) – and someone is always hungry or demanding something. One day I am going to count how many questions I am asked and let you know. I expect most of them will be from my husband. ‘Is there any milk?’ he asks. Why he can’t just go and look in the fridge like the rest of us I don’t know. Anyway…

Yes, I am aware I’m waffling a bit this week, but I haven’t edited this post too heavily as the waffle is a good representation of how I have been feeling. Drifting from one thing to another without much thought. Almost in a dreamlike state at times. Detached from reality. I’m forgetful, easily distracted, not really making much sense at times.

But I’m alright.

I have only cried once in the last seven days and I’ve managed to have several alcohol free evenings. The sunshine is, as always, very welcome as is the fact we have a garden we can get out into in lieu of being able to leave the house for exercise. I can lie in a lounger and imagine I’m on holiday for a bit before I remember why I’m at home for the sixth week in a row. I almost look forward to Joe Wicks in the morning and am actually able to complete a whole session now, unlike that first week when I gave up after one or two exercises. There’s a sense of calm washing over me that I’ve not felt in a long time. A release of control. A knowledge that I am doing my best. 


Week Two. Shielding.

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. 

  1. 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. 
  2. 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…
  3. 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. 
  4. 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! 
  5. 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. 
  6. 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. 
  7. 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. 
  8. 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!)
  9. 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.
  10.  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.
  11.  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!
  12.  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!