Tag Archives: family

A Little Less Conversation

I’ve been thinking about communication a lot this week. How do you talk to someone?

If there’s one particular skill that is essential to being a journalist it’s being able to strike up a conversation with anyone, anywhere. It’s also the single most annoying part of being a parent apparently. “Mum you’re so cringe, you talk to anyone.”

Are you one of those people who talks to their family every day? I am. I chat with my mum probably 2/3 times a day. I call my dad once a week and the same with my brother. I also send daft videos and memes and stuff on whatsapp and Instagram as a way of checking in. Covid restrictions haven’t really influenced this routine, it’s just how we roll. Although, things have begun to change.

As January trundles on I’ve found myself feeling more withdrawn from my usual chatty self. I feel as though there are only three topics of conversational allowed and I’ m so over them all. I think I’m ready to hibernate. You know all those Christmas and new year conversations we have; “All ready for Christmas?” people ask, “yes, just a few last bits” you reply. Or, “how was New Year, do anything nice?” they’ll ask, and you say ” ahh just a quiet one at home with a few drinks, you?”. Those inevitable conversations we enter into a certain times of the year? They’re only manageable because they’re limited to like a two week period.

We’re now in month, I don’t know 9/10(?) of homeschooling and the same perfunctory conversations we were having in April 2020 and still here. Lingering like a empty wine bottle by the bin, waiting to be taken out and replaced. A lady in the park yesterday asked me if I was enjoying homeschooling. I switched into robot mode, “Oh you know, we’re getting a few bits done each day. That’s what counts isn’t it?”

She went on to tell me about how she studied IT in university 20 years ago and introduced computers into high schools for the first time. Her daughter is an architect and she’s making plans to oppose the local park being built on. 125 apartments, imagine the extra traffic? See, I listened. I asked questions about her Dachshund (who knew they barked so loud?) and her granddaughter (much less barky), both of whom we’re trying their best to get into the doughnuts in my shopping bag. She is the only stranger I have spoken to in months and the conversation left me weary.

Oh, that’s not entirely true. An Arriva bus driver told me he liked my phone case when I was paying for a ticket. I smiled and said: “Ahh it just stops me from smashing the screen on a daily basis.” We both smiled that knowing smile all Iphone users do and I went and sat down. Meh. Kind but meh.

I’m torn between wanting something new and exciting to talk about, the inauguration bought us a few covid-free days, but then lacking the motivation to engage. It all seems so trivial and I’m in danger of losing my conversational skill to funny Tik Tok videos and Instagram reels. Why bother to tell the joke when you can send a video of a cat snoring into a microphone? Right?

There are people I am close to who will say that this description does not match the person at all. I am loud, gregarious, sweary and forthright. And they are right, usually.

It’s stressing me out all this not talking. It’s like I need to perform, to be that loud, gregarious girl, always with something to say and never afraid to say it. But it’s knackering and striving to be that person is making me blue. I abhor being negative. Hate it. Always try to look at the postives. But my family are far away, my daughter is struggling with lockdown, my mum is so desperately lonely having lost my step dad in October, the list goes on and it’s mostly crap.

*Audible sigh here*

I went for a five mile walk, posted some Ebay stuff (said hello and answered the home schooling question again from the lady in the post office) and gave my head a wobble. Reset firmly pressed.

Rather than fight it, perhaps now is the time to be quiet. Embrace it. It’s going to be a busy few weeks. I’m signing off from one adventure and beginning a new one. Lots to learn, many new colleagues and people to meet and new routines to establish at home. Maybe this time was always meant to be spent in quiet contemplation? Maybe it’s time to be more of an observer and less of a participant?

January is to me, a month of change. Ordinarily I buy into various resolutions and ‘new year new me’ bollocks until around 13th when the wheels fall off. I also start writing a new diary and clear out my email inbox and message apps. This has all gone to plan, including the wheels falling off bit. But the more noticeable and sustainable change is how I communicate. It’s taking some getting used to but I think I like it. It’s less turbulent, more considered.

Communicating in the right way at the right time, as opposed to just ALL the time, is a 2021 habit I can really get behind. I never wanted to believe it, but maybe less really is more?

Are you feeling lockdown weary or covid/homeschool gagged? What are you doing to combat it? Talk to me.

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When It All Falls Down

Work is online, school is closed and the threat of COVID feels closer than ever before.

It’s day one of 2021 (for those like me, who didn’t kick start their New Year until Monday) and it’s all gone to shit already! I will be teaching online for the foreseeable future, my kids are all home until at least 18th January, and I just heard that another 5 people I know have COVID.

First of all, I have to look at the positives. I hadn’t yet bothered to iron any school uniforms, so that’s a tiny win. I’m genuinely a little bit excited about home schooling my younger two kids. We have a ‘paint your own solar system’ and a shed load of new Lego to get started on. I emailed my kids’ school this morning to thank the staff for everything they’re doing behind the scenes to ensure the pupils have access to school work and reading books. I fully support their decision to close and protect themselves and their families.

Back to window gazing it is then.

My mum, who is now part of our support bubble, having lost her husband to COVID in October, is asbolutely delighted that she can spend more time with the kids and help keep them occupied while I work. Speaking of work. I’m looking forward to two weeks worth of Zoom lessons with my NCTJ students. It’ll be the first time we’ve gone fully digital as we battled through in the news room in 2020. With exams looming, we’ll be battering the wifi to get their portfolio’s completed, it’s a challenge I’m wholly up for.

There’s no way to sugar coat this horrendous virus. Both my mum and step dad contracted COVID in October and sadly, my step dad died. My mum was hospitalised and has made a good recovery, despite her grief. Thank God for grandchildren.

Today I leaned another 5 extended family and friends have caught COVID. All of which have continued working throughout the pandemic, but have taken every precaution otherwise. No pub drinks, no meals out, hand washing, mask wearing, law abiding, and yet, they’re all suffering the effects.

Scotland has just locked down until the end of January. Scottish First Minister, Nicola Sturgeon made the decision despite believing the country is approx 4 weeks behind London, in terms of infection rates etc.

Is a UK lockdown just around the corner? With confirmed COVID figures now surpassing the height of the peak back in April 2020, surely it’s the only option? I don’t know about you, but I’m more nervous about COVID now than ever before. I’ve seen first hand how it can reduce a person to a shell. I don’t want that for anyone.

Home Schooling in 2020

In the coming weeks I hope we can go back to looking out for each other again. Checking in, saying hi, sharing recommendations for take-aways and Netflix shows. I’m going to try and source some more, fun home activities to do with the kids and share them on Instagram. It’s just small things, but they can mean a lot.

Having my family close gives me a little bit of comfort. Mentally I’m preparing to lockdown again. I think it’s coming. And if it doesn’t, then God help us all.

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8pm and Out

Lock down life has got me hitting the apples and pears much earlier than usual. What is there to stay up for?

Since I began in teaching in September, I can’t stay up on a school night. Then my step-dad passed away suddenly and I began to wake up at 4am, regardless at what time I went to bed. Next up on the bedtime rollercoaster, the clocks went back and as it’s dark at like 5pm, I’m done and turning in three hours later.

I’m not even making it through Bake Off! I woke last week to find Hermine has been booted out of the tent and Dave (DAVE! DAVE? OMG, why is DAVE still there?) smuggly through to the final. I blame myself, I wasn’t there for Hermine and her cube cake show stopper. I’m sorry.

I’ve fallen into this routine of falling asleep on the sofa/in the living room chair around the 8pm mark and waking up with all the lights and TV still on around 11pm. Realising this was detrimental to my decrepit spine and winter energy bills, I promised myself to hit the hay once my eyes got heavy. The issue with this is that I could genuinely go to bed at 6:15pm. My kids however, cannot.

At the weekend I try to wean myself off this infantile bedtime routine. But then there was an EPIC delivery of Berry & Rye Elder Flower Collins and Southern Belle Punch and I was more sleepy and sated than I had been all week. Cue me missing the last 20 minutes of S1 E4 of The Queen’s Gambit on Netflix. I’m having to watch everything twice.

I guess if you feel tired, you should just sleep, right? If you’ve watched everything on Netflix, drank all the gin, read all the reading books and recited all the spellings and times tables. If the dishes are done and the uniforms are ironed, just slide into bed and rest your noodle, yeah? Is there any point in fighting it?

I just want to see Peter win Bake Off. Is that asking too much?

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Saying Goodbye

My step dad died very suddenly last month and now I have an internal rage for every single person I see who isn’t wearing a mask.

I’m well aware that there are some conditions for which wearing a mask can exacerbate a pre-existing health condition. But if the risk of catching Covid was so great to your ill health, I can’t help but think you’re unlikely to be doing the school run everyday or perusing the new season fashions in ASDA.

May be I’m being too harsh? My step dad worked for the NHS for 22 years. If you’ve ever had to go to A&E at Liverpool’s Royal Hospital, there’s a chance it was my step dad you gave your details to at check in. He was a familiar face on ‘the desk’ and more recently worked weekends when the department is usually at its busiest.

He caught Covid and four days after his symptoms manifested, he died. Age 63. My mum realised something was wrong in the early hours of the morning and tried in vain to resuscitate him until the paramedics arrived. He’d already gone.

My mum, also positive with Covid was admitted to hospital three days later. The pressure of the virus, grief, constant calls from the coroners office, funeral directors and GP surgery had taken its toll. All alone in the house, which is now bereft of the constant chatter of Sky Sports and police documentaries. My step dad’s favourites.

It took four weeks of agony to finally be able to plan a funeral service. Only 15 people allowed to attend. Minimal flowers. A drive around his beloved Anfield – he’d followed the reds all over Europe back in the day, and finally to Anfield Crematorium.

A low-flying migration of birds flew over as we exited the chapel, having said our final goodbyes and sang You’ll Never Walk Alone at the tops of our voices.

My heart aches for my mum. She’s in her 60’s. Locked down in a house full of memories, which is all but silent. Thank god for Lola cat, keeping her company. I’m visiting every day, taking her the paper, walking down to the community centre once a week for our Covid tests, always wearing a mask and sanitising our hands.

Take some advice from me. Don’t wait until Covid has taken your loved one, before you start taking this seriously. Wear the f*cking mask. Not under your chin, or under your nose. What’s the point in that? Find one you prefer, you can get them online or in any of the supermarkets, and WEAR IT! Wash them regularly and stick a couple in the car and in your coat pockets.

Wash your hands, stay the hell away from people wherever you can. The rate may be coming down, and yes, we are making good progress, but only if we keep at it.

I’ll say only this about the people gathering in their hundreds to protest wearing a mask. You’re f*cking idiots and very much part of the problem. God forbid you get sick and need the NHS. Go home.

RIP Ste, we love and miss you so, so much.

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Back to School

My kids go back to school tomorrow, and this September, I’ll be right behind them, heading for the classroom. I’ve only gone and bagged my dream job!

When I was at school (hundreds of years ago), I wanted to be a teacher. I did my year 10 work experience at my school – I interned for the PE department because it was my favourite subject. I loved the idea of playing a part in students’ development and watching them learn and master new things with your guidance.

Somewhere around age 17, I lost the thirst to learn. I knew university wasn’t for me. I was partway through my A-Levels (PE, English Lit, English Language, Psychology) when an opportunity to go home (Sydney) and work at the Olympic Games 2000 came up, I grabbed it with both hands. Bags packed, I was out of school and all ideas of education and teaching we’re left on the tarmac.

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20 whole years later, I’ve done it. I’ve finally got myself a teaching job. I’m absolutely delighted to say I’ll be joining the staff at The City of Liverpool College and I will be delivering the NCTJ Journalism Diploma programme. It’s the very course I graduated from back in 2016 and the very course I have championed to anyone interested in a career in journalism.

Since the vacancy came up online, I’ve thought of nothing else than delivering shorthand training and supporting journalism students with opportunities to expand on and polish their portfolio’s, ready for the world of work. I can’t wait to get started.

It’s inevitable that the new job has made me stop and think about my previous career decisions. It’s entirely possible that, had I have knuckled down at 17, gone to uni, got my PGCE, that by now I could be enjoying 15 years worth of educating others. But that’s just the way the cookie crumbles, right?

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So this September, there are four pairs of shiny new shoes (okay, mine are Nike’s) on the stairs, four new water bottles lined up ready for the first school day, and three students rooting for their momma on her first big day.

It’s going to be fairly chaotic for us all going back to an educational setting. Whether it’s the kids, teens, or adults. I hope your youngsters enjoy seeing their friends again, you settle into a routine quickly, and you’re all safe and well.

Happy New School Year!

Miss James

 

 

 

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Urban Orienteering with The Lantern Company

This summer I worked with award-winning, Liverpool-based creative events company, The Lantern Company. The Street by Street, Creative Revolution has begun, and the DIY Festival project is now live!

Back in July, The Lantern Company put a call out for artists to help create a DIY Festival blueprint for families, community groups and neighbours. The Lantern Company is known for producing memorable, artistic events ( City of Light, The Monster Halloween Ball, Lumiere London, Liverpool Sound City, Hong Kong Parade, etc.) Due to Coronavirus lockdown, The Lantern Company can’t bring people together in its usual, inspiring way and so, it launched a brand new initiative. A DIY Festival Kit.

The Lantern Company

From The Lantern Company website: “The Street by Street Creative activities have been specially designed to kick start the party, from where you live. You can enjoy the activities in any way you want – at home anytime or as a way of connecting with your neighbours.

If you want to inspire families, friends, and neighbours to come together in your block / street / local park in a safe and socially distanced way, these activities are the perfect way to come together, apart, and have a mini celebration.”

I saw the call for commissions and immediately set to work on my proposal. A few weeks earlier I’d taken to the paths of Springfield Park to create some chalk artwork challenges for kids and their families to enjoy. They were well received and so I submitted my ideas to The Lantern Company – and they loved them too!

The Lantern Company

So, it gives me immense pleasure (still can’t believe I get to say this) to present to you – The Lantern Company, Street by Street Creative Revolution, DIY Festival Kit. Included are 6 different activities ranging from dance to music, baking, art, and my very own addition: Urban Orienteering.

Playing out is the new staying in! Inspired by old school pavement games, such as hopscotch, this workshop shows you how to create your own fun trail, using basic art materials and your imagination. Plan your route down the garden path, driveway, street, or community centre, with 2m gaps, add a start and finish line and get ready to race.

Rain or shine, young or old, we’ll have you stomping, roaring, twirling, and reaching for the stars, safely with your friends, families, and neighbours.

It’s essentially an arty obstacle course. It can be as easy or difficult as you want to make it. My favourite steps have been ‘Stomp and Roar like a Dinosaur’, ‘Emoji Stepping Stones’, and ‘Walk The Plank’.

For all the info about the DIY Festival from The Lantern Company, including video workshops and downloadable PDF’s, click here.

We’d love to see your own DIY Festival pics and receive your feedback. Share your pics with the hashtag #LanternDIYfestival and have LOADS of fun! 

 

 

 

 

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Saturday Catch Up

Feeling a bit paranoid this morning. I woke up with a smidge of a sore throat and it’s making me anxious. Can’t help but think it’s due to the tonne of alcohol I necked last night though.

Before anyone worries, I’ve no temperature or cough so I’ve come to work, where I toil on my own for a few hours so I’m also staying safe and not endangering others.

Waiting to get in at work

Tell you what though, four months on, it’s still really scary all this COVID shiz, isn’t it? I try to limit my COVID media consumption otherwise I end up feeling panicky and like I don’t want to let my kids breathe fresh air or see daylight again.

I’m slightly more concerned at present as I’m due to have surgery in a few weeks and the thought of going into hospital, plus the self-isolating period beforehand is making me a little nervous. I’m sure it’ll be fine. I have to take a COVID test four days before the procedure to make sure I’m in tip-top condition, so that’s a weight off.

It’s disappointing to see so many people STILL not wearing masks in my local area. Both Tesco and Aldi seemed to have relaxed their measures. There’s no longer staff on the door encouraging people to mask up and sanitise their hands. People are back to moving your trolley or leaning over you for produce. Again, maybe I’m a bit paranoid but surely it’s better to be safe than sorry?

Just wear a mask, will yer!

I also understand that not everyone can wear a mask, but I doubt very much that accounts for the many I’ve witnessed.

So back to Saturday morning. I’m currently sat outside work waiting for someone to let me in as I’m not a key holder. It’s BOILING out. 19 degrees and cloudy at 7am can take a running joke. Speaking of which, I text my boyfriend last night (after a few glasses of wine) and said: “ isn’t it brilliant sleeping alone when it’s hot”. I’m not sure what he made of that but I think it made some sense.

I woke up this morning with the youngest night ninja sprawled out across my side of my bed!! I don’t know how he does it! My subconscious picks up every moment they turn over on the night so I’ve no idea how he sneaks in. Little beggar.

He read me the ‘Mummy and Me’ forever friends book this morning then proceeded to make me a slice of wholemeal bread, slathered with Philadelphia, for breakfast. He’s gonna make a smashing husband one day, that kid.

Full up with love, I cycled the 2 miles into work and have been sat, sweating on the steps outside waiting to get in ever since. Happy Saturday peeps!

Thunder & Lightning Ice Cream is the one

Prepare for a barrage of blog posts in the next week as a number of art commissions I’ve been working on, officially go public. Plus I’m yet to bore you all with my Scotland trip photos and anecdotes. Nice one Julia!

 

 

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Crocs, Geese, and Giant Strawberries

There are fundamental signs of getting old, and choosing to buy a pair of Crocs is undeniably one of them. It’s official, I am middle-aged. Shouldn’t I be buying a sports car and dating a 22-year-old?

Alright, so the old adage of suffering a mid-life crisis is a bit outdated, but seriously, I want my PORSCHE 911! I’m joking, although I have bagged a younger man, but that’s not news.

The weather during lockdown has been nuts. 30 degrees one day followed by 8 days of solid rain, followed by a week of mid-twenties and 40 days and 40 nights of rain again. Like I said, nuts. I wasn’t prepared for summer.

I panicked. I didn’t know what I was doing, I just knew I didn’t want to wreck another pair of Adidas Campus by wearing them without socks, to avoid tan lines and before I knew it I was on the Very website looking at flip flops and then didn’t stock my size in Havaianas and then after three hours of scrolling for stupid flip flops, I just went for plain black, hit order and logged out.

I wasn’t even excited when they arrived. I opened the bag and there, staring back at me, were Crocs. Not Crocs like, Crocs. They’re not mules that you slip your feet into. They don’t have air holes in the front, nor a strap that goes around the heel. They don’t have Crocs written anywhere on them bar the sole, and they don’t have the logo. Oh God, I bought Crocs, didn’t I? Shit.

The weather stayed warm and so I wore them, making sure to hide them from my teen in case she started legal proceedings against me. It’s been three weeks and so far, so good. Having published this, I won’t be surprised to find my secret Crocs have been kidnapped like in some summer sandal version of Taken. I can’t see Liam Neeson turning up to rescue my flip flops. Can you?

From crocs to geese! Yesterday I wrote about The Untitled Goose Game on Nintendo Switch and oh my days, it’s so addictive! The other worrying aspect of this game is realising that acting like a complete asshat is actually really fun! Scaring a kid into a phone box by honking at him, stealing household items from the shop, lobbing a pint glass in the canal, and smashing valuable vases is a riot! Anyone else played it yet? What do you think?

Where do the Giant Strawberries fit into all this, you may be wondering. It’s simple really. I managed to get a shed load of work done today, loads of research, I’ve started making more progress on HHT Kids too. Funding, set up, content creation, talking to our website designers, getting the ball rolling with organisation status, etc. I’ve cooked, cleaned, emailed, called, text, typed, and listened. All-day long. (Still no strawberries?!)

At 5:30pm we packed up some snacks and headed out to a new park for an alfresco dinner and some exercise. I met the cutest dog, annoyed my boyfriend by calling him for no good reason, took loads of photographs, hid my little boy as he took a quick leak in the bushes, and cycled home. Bit of TV and everyone into bed.

Here I am, trying to not rustle the packet of Giant Strawberries I told the kids must have ‘fallen out of the bag at the park’ so I don’t have to share them. The old ones are the best!

 

 

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Summer Loving

It’s officially July. This makes me happy for many reasons. A fresh start on my Everton calendar (oh hi Tom & Dom), a fresh start in my diary and it feels like summer again, which to me, means great music and good times. 

I’ve just updated the Mixtape section of the blog with 31 of my favourite tunes for the month ahead. As usual, it’s a real mixed bag in there. Everything from Beyonce to Al Green, Doves, Nick Ellis, Sinead Harnett, Earth Wind and Fire, and the King himself. Give it a listen here and send over any new music recommendations to katereillyjames@gmail.com.

Elsewhere, it’s set to be a busy month. I’ve just had a second art commission confirmed, which I’m mega excited about, more on that soon. Having just gotten into the swing of things in my new job, I’m finding managing working from home difficult.

The kids are home all day and crave structure and while I’m learning all kinds of medical terminology and working out marketing strategy, they’ve been spending way too much time on their ipads. Back to homeschool planning and prep for me!

We discovered the most awesome Nintendo Switch game earlier today. Untitled Goose Game is bloody hilarious. You play a goose, let loose on a local village and the aim of the game is to be as annoying as possible at all times.

There’s a dedicated honk button and your to-do list consists of tasks such as ‘grab a pint glass and chuck it in the canal’ or ‘lock the little boy in the phone booth’. Honestly, I’ve howled laughing playing it with my very impressionable 5-year-old. I was slightly mortified when he asked me what a phone booth is?! God, I’m so old. Check out Untitled Goose Game here.

Absolutely chuffed for the Toffees today (COYB!) and a home 2-1 win against Leicester and our first penalty of the season, at Goodison. Still not loving the fake crowd noise but a win is a win! Bring on Spurs on Monday.

Had white chocolate Coco Pops for dinner (thanks again to @Kelloggs for the fab nutrition advice for HHT patients) while emailing the European co-chair of the VASCERN HHT group for some advice about setting up HHT Kids on Instagram. If you don’t already know my HHT story and why it’s so important to me to raise awareness of this rare, vascular disease, you can get the low down here.

So after a 3 mile, 9pm walk with the little ones, I’ve blitzed the house, prepped homeschool for tomorrow (for me and them), and flopped into bed to get my first blog of July done – only to realise it’s already the 2nd…bugger!

Happy July Everyone, hope it’s a cracker for you.

 

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HHT & Me

Imagine being on the train or bus en route to work, or in the office on the phone to a client, or live on the radio chatting about topical news stories, or watching your kid’s christmas play, or on a date, or simply just walking down the road….and your nose explodes with blood.

Imagine this happens 4 or 5 times a day, with absolutely no warning. This is just the start of life with HHT. 

Ossler-Weber Rendue Syndrome or HHT (Hereditary Haemorrhagic Telangectasia) is a genetic vascular disorder in which blood vessels form abnormally, this can cause serious bleeding. The abnormal vessels can be seen on the skin as red, sometimes purple spots. If a bleed occurs in a major organ, just as the liver, lungs or brain, it could result in life changing consequences.

You’ve probably guessed from the term hereditary, that I’ve had HHT all my life. I went through school having nose bleeds (epistaxis) all the damn time. Like, most days. My Dad and my brother were the same. Waking up to find my pillow case covered in blood was completely normal from the age of 10.

I loved sport, but often found myself on the side line with a wad of tissue shoved up my nostril. My poor dad could barely get in the shower each morning without his nose kicking off a stream of blood all over the towels and play fighting with my brother was guaranteed to have us fighting to get to the bathroom for toilet roll before too long.

My parents said we had ‘weak noses’ and seeing as we had never complained of any other, serious ailments, we just got on with it. We never had any notion of these symptoms being something much more dangerous.

Cut to May Half Term, 2018. I’m a mum of three. Two girls aged 12 and 6 and a little dude age 3. It’s Thursday, early evening. We’re having dinner and my 6 year old comes to me and says mum I don’t feel very well. A split second later she throws up handfuls of blood clots, and once she starts, they just keep coming. If you’ve ever seen the cherry-pip scene in The Witches of Eastwick, you’ll get the idea.

I call my mum to come and watch the other two kids and race the 6 year old to the children’s hospital, which thankfully, is just 5 minutes up the road.

4 hours later, the A&E staff still cant work out what’s wrong with her and why her oxygen saturations are at 83. She’s tired by smiling. Drinking and fully responsive. She has a seated chest x ray and we’re admitted to a ward.

In March 2018 I had taken her to the same A&E after 5 days of high temperature, when she went listless and her lips turned blue. After an x ray, she was diagnosed with influenza, admitted and then discharged with Tamiflu. Within 4 days she was right as rain and back at school.

Cut back to May 2018 and the chest x ray results came back. What had shown as a 50p sized area of inflammation in March, had grown to more than triple the size by May, and it was making my girl very, very poorly.

The respiratory team suspected tuberculosis and she was put into quarantine. I was sleeping on the sofa next to her every night over the bank holiday weekend. She was send for other observations but there was no definite diagnosis.

The Tuesday was a hot day. The tiny hospital room windows only opened a fraction and we were desperate for fresh air as well as news. Our respiratory consultant introduced us to Professor Calum Semple, a child health and out-break medicine specialist. Professor Semple came into the room, introduced himself, asked my daughter how she was feeling and what had happened. He examined her and then he asked me if I’d ever had nosebleeds and for how long I’d had the red spots on my hands and chest.

35 years worth of jigsaw pieces fell into place in just a few moments as Professor Semple explained what HHT is and how sure he felt my daughter, and likely me and other members of our family also had the disorder. Unfortunately for her, an abnormal vessel had formed in the lower chamber of her right lung and it wasn’t possible to stem/remove it.

A number of further tests were performed, a prescription for tranexamic acid was issued and a surgery date set for August 2018. Genetics were also informed and my eldest daughter and son were to have blood tests to see if they too were carriers. My eldest girl tested positive, my son is negative.

My middle daughter had a lobectomy on 21st August 2018 and despite a suggested 6 day stay in hospital, was home in just two. She’s made a full recovery and was even back at swimming lessons by January 2019.

The scary thing about HHT is that there is no cure. The bleeds can be as light as a nose trickle or life-changing AVM’s (arteriovenous malformations) in a major organ leading to stroke, organ failure, seizures, anaemia, an increased risk of major bleed in pregnancy and more.

There’s also a chance that absolutely none of these issues may arise, and you go through life without any HHT issues. The ‘ticking time bomb’ feeling however is having an adverse effect on my mental health since my daughter got sick. If it was just me, I could likely deal with that. But now we know my dad, my brother and my two daughters are all HHT carriers, I’m reminded every day that my loved ones are at risk.

The UK lags behind many other countries in terms of HHT awareness and treatment. I’m incredibly grateful for Professor Semple and the respiratory team at Alder Hey Children’s Hospital. A HHT clinic has now been established and my daughters are monitored regularly for changes in their health as well as offered additional treatments to try and aliviate the daily symptoms – ie. nosebleeds and fainting spells.

I am now a patient of an ENT specialist and have since had laser surgery on my nose in an attempt to stem the nosebleeds. Unfortunately it was just 18 days post-surgery before my symptoms returned to ‘normal’ and I was back wishing I’d bought shares in Andrex when I was a teen. I’m due a review any day now but due to Covid-19, there are many others waiting for an appointment too.

People who know me well, know I have nosebleeds at the most ridiculous of times. That list at the top of the article? All of those have happened to me on a regular basis. My worst bleeds last over an hour and leave me feeling tired and embarassed. Some have left me literally, covered in blood when I’ve not managed to catch the blood flow in time, one particular school-run sticks in my mind. All down the front of my coat and half my kids friends being too scared to come anywhere near me.

Christmas 2019 was particularly bad. My nose started at my boyfriends place. He knows about my HHT and I’ve managed to keep a lid on it for the most part. My nose erupted at his place, and I mean erupted. It was like an episode of Dexter in ther. Blood up the bathroom tiles, sink, floor, me!

After 45 mins sat on the floor and attempting to clean up, I managed to go sit on the bed. Only for the vein in my nose to blow a second time. Another half an hour later and I’d lost os much blood I was around 10 mins from heading to A&E for a blood transfusion when it slowed and finally stopped. I was so embarassed.

They happen every couple of months but it’s the lighter bleeds, which happen 4 to 5 times a day that get me down. The longest I’ve gone without a nosebleed, since my laser surgery in June 2019, is 5 days. 5 days of bliss. As I’ve gotten older my telangectasia (red/purple blood spots) have gotten prgressively worse and more noticeable. My tongue is covered in them and the ones on my face are much more obvious. My dad and brother both suffer the same frequency of bleeds and spots too.

My eldest daughter is 14 now and suffers with daily blood clots as well as bleeds. She’s had to sit out of lessons having fainted due to low blood pressure and anaemia. She’s embarassed about having to spit out blood clots, sometimes a number of days after her last nose bleed.

HHT is recognised as a rare diease, effecting 1 in 5,000 people. Many HHT patients go undiagnosed as nosebleeds can be quite common. Many HHT sufferers have AVM’s which cause no issues and HHT is very much a disorder which is acted upon when it presents problems. Reactionary rather than preventative and this frightens the life out of me.

There are on-going clinical trials for HHT in adults. Thalidomide has proven to be effective in reducing, and in some cases stopping nose bleeds (epistaxis) altogether. The Genomics team we’re working with have given us, as a family, incredible insights into genetic selection for the girls and if, in the future they want to have children of their own and not pass on the faulty HHT gene.

It was a genetic psychologist who, at an appointment to test my son for HHT, asked me for the first time, if I was okay. Having gone through a terrifying ordeal of seeing my 6 year old gravely ill and not knowing what was wrong. To discovering soon after that my loved ones are also at risk from the same dangers and then wondering what the hell I would do if it was me who got sick with an AVM. I had been running on auto-pilot for months.

It’s been two years since my daughter first got sick. It really is a case of every day as it comes and should HHT throw us in the deep end again, we’ll learn how to swim again. In the mean time I’m investigating what other treatments are proving to be effective and looking at research from other countries on how to combat the debilitating daily bleeding.

Of course I’m sat at my laptop writing this with a wad of kitchen roll up my left nostril while my eldest daughter is in the bathroom using up all the tissue for her own nose bleed. Just because we’ve normalised it at home, it doesn’t mean we, or more so, my girls should have to suffer with it.

If you or someone close to you has HHT and you’re based in the UK, I would really like to hear from you. Drop me an email Katereillyjames@gmail.com or find me on Twitter @Katereillyjames. 

You can find out more about HHT on the official NHS pages here. Also, the HHT UK Facebook group is a great place to get support and hear how other people and their loved ones are coping with HHT. Find out more here. 

 

 

 

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