Being lost and found

Church Cove – The Liard – Cornwall

In Cornwall this summer I had a sort of rebirth.  After my son’s T1 diagnosis, broken leg and GCSE worry and stress I found myself unable to stop the anxiety treadmill I’d become locked on, with this seamless never ending-ness of it all, there seemed to be no point for a half decent breath.  I’d tried but it was all just a big blancmange and whichever I went it was the same, no light or relief.  ‘Where else I can I go?’ is a line from Running by Beyonce being played on the radio all summer, and I didn’t know where to go, the more I tried the harder it became.  I’ve been going to Cornwall for over 25 years and it’s always been a place for solace and energy, but I couldn’t find it, I was strained and out of sorts waiting for Cornwall to do its job and help me.  The weather was so hot and the whole beach seemed to be loving it all, expect me.  Going for a long sea swim gave me the answer in the form of a coach load of Ghanaians, visiting the church on the beach.  They arrived in all their colourful glory, with the local vicar, and at least four of them were dunked head to toe into the sea to music, shout and cheers from those gathered on the beach.  And I found myself doing the same, under the water I let go, the cold sea water over my head and shoulders seeped into my body and blood vessels chasing out the sadness and stagnant feelings I carried – descaled like a kettle.

‘If I lose my self I lose it all’ is another line from the same song and with my self-taught rebirth, it marked a moment, a line not in the sand but the sea.  A moment that marked the past and now, moving forward.  A demarcation line from one moment to the next, a physical imperceptible marker for most but deep needed meaning for me.  Our circumstances are the same, but I now know that they won’t easily drag me under, and if they do, I can bob back up again and keep moving forward without the weight of the past year dragging me down.  This act was like a switch, no thoughts or feelings would have done the same, it needed to be physical and involve my body and ocean to propel everything in a new direction.

As the sun set around 9pm and we were the only family on the beach, I gathered up several largish rocks around my ankles and chucked in one at a time with all my might, naming each one as I sent it flying into the waves to be gobbled up, despatched with, off me and into a bigger hungrier beast to break up and wash away.  All named with my anger, sadness, frustrations and angst.

Three months after do I still feel the same way?  Did it help?  Yes, it has, something about the physical act of going under the water and throwing large named rocks worked and I thank Cornwall for helping me in a way I never imagined.

Primary School Years – Mic Drop

carIt’s over.  It’s been over 10 years and I am D O N E.  Both my children have been at the same school, with five years between them my time served has been long.  The school has been excellent and provided great education and care to them both, one who had some special educational needs and one who has done so much sport for the school.  Maybe it’s an age thing, for me, I am just sick and tired of it all, the minutia that is involved, the endless dressing up or down days, those parents just as obsessed with levels and pecking orders as they were with the colour sticker of reading books in reception.  I’ve done my fair share too, helped at school fairs, BBQ’s, grandparents days, put up chairs, taken them down again, bought badges, helped in class and on school trips.  I’ve made some great mates and some others I’ve hidden from over the years (nothing wrong with hiding in the footwell of your car at the local supermarket to avoid one in particular), but I’ve come to the conclusion that it is a microcosm of all the very best and very worst of women.  Those on the PTA who think they have elevated status because of it some sort and those on the PTA who do it because they are good at it and make a difference.    Those who find something to speak to the teacher about at the end of each school day at least three times a week.  Some of those who are Governors think they are part of some elitist influential fascist movement.  Oh and the nagging of the reading, it has put mine off reading.  It became a chore, not a pleasure, a one size fits all sausage factory of nag read nag.  Oh and in 12 years I’ve NEVER EVER parked like a TWAT and I’ve only been super, super late twice, not bad hey?  And the best thing about this is that my school run days are OVER too, I no longer have to drive them to school, they walk/get the train.  I’m H A P P Y!

My Boy 9 – T1 Nil

img_4013.jpgSo so proud of this boy, passed all of his GCSEs with flying colours, after the toughest year of his life. I can’t even begin to explain or express how happy and delighted we all are. 💪🏻👏🏻🙌🏻❤️😁  I woke on the morning of results day with a headache that indicated my jaw had been clenched all night long.  School opened at 9am and he was still in bed and ten to the hour!  We made it to school about 9.20am and I was told ‘no pep talk was needed’ as we listened to the radio on the 5 min drive to school.  He shot into school and came shooting out again moments later, with THE envelope in hand, which was ripped open as soon as he’d slammed the door and there is all their glory were the 8 6’s (or B’s) as they’ve been known since this year.  Ding, ding, ding, peppering the page with joy and delight one after the other.

He had every reason to give up, to not bother, to see the world as giving him a rough deal. But he didn’t, he tried so hard. He showed grit, skips of it! It was frustrating and worrying for him and me. Type 1 some days, night and weeks was an utterly unfathomable beast, a total and utter mean git. Here’s a tweet I sent one day after a crap few days.

“I wish T1 was something tangible I could get my hands on because I’d then have it up against a wall with my forearm across its throat and I headbutt it and kick the sh*t out of it till it was no more! ”

He gave up sometimes, yelled Macbeth was a power-mad Trump-like moron, that PE was totally stupid and that he didn’t give a toss about biology. But he exploded and then picked up the books again. The highs during exams, every exam in fact, so he had to monitor closely his bloods, scan, check, finger prick, inject, eat and drink AND think about answers to endless questions.  Conking out after he got home to sleep, his brain and body drained.  On the days he had no exams he had to just sleep, teenagers sleep a lot and add in T1 they sleep, even more, they have to. It was all worth THAT moment of seeing those results in black and white.  His school, teachers and especially his head of year were the best we could have hoped for, their support was immense, so considered and just what he required.  He needed them and they made the difference.  I am so thankful for them all.

I’m still on Cloud 9, I’ve told everyone I’ve come into contact with since. Shouting it from the rooftops gives me immense pleasure because he deserves this incredible feeling that fills every molecule of his body, it’s a fantastic triumph. We went to the tip to get rid of all his exercise books, papers and notes into the paper recycling.  Chucking each one into the skip was so much fun, he flung them up into the air and it was like watching a weight lift from him; the pressure, worry, the expectation all gone replaced by victory, vindication and confidence.

One Year On

InsulinSince diagnosis, a year ago today, my eldest son had injected himself over 2,500 times with a needle like this in his stomach or thighs.

Out of the blue over the course of four days he had a thirst that could not be satisfied, he went to the loo a lot and felt just exhausted. These were the only symptoms that after a blood test at the GP sent us straight to A&E.

As well as the numerous times when I’ve checked him in the night and he’s been too high or too low. Seeing his face when he tips into a low, sweats, goes cold and grey and sometimes can barely speak. Looking at every food, food packet and menu with a magnifying glass to see the carb content, weighing all carbs and working it out, making adjustments for everything, and I mean everything, he eats or drinks. Dealing with highs when he feels dreadful, exhausted and drained. Days off school because he’s just been too exhausted or it’s all been too much.

The stupid comments; did he get it from eating too much sugar? How did he catch that? Why is he eating that, is he allowed? Why doesn’t he manage it better? Cinnamon cures it you know!

The only people who really understand are those who live this every day, the T1 community both face to face & those online. I’ve met two awesome local T1 Mums Louise Adams & Victoria Farrar and sharing with each other this T1 journey has been essential and much needed for both sanity and solidarity, love and understanding.

As a Mum having a T1 child critically shifts everything and it is pretty much what we think about all of the time, we have to, it never stops. Me and other T1 Mums are, as my son would say, just ‘beast’ at it. Just when we think we’ve nothing left in the tank due to worry, anxiety, exhaustion, lack of sleep and frustrations, we carry on. And so do our children, it doesn’t stop them, they just factor everything which takes time, thought and effort every single day. Add on top all the other normal life stuff and it’s a lot.

Children with Type 1 Diabetes are incredibly brave and strong, they don’t sweat the small stuff and it gives them incredible drive and self-belief.

Sometimes I wonder how we all got through the last year but we all have.

https://www.nhs.uk/conditions/type-1-diabetes/symptoms-and-getting-diagnosed/

Photo shows the needles he uses and a drop of insulin.

Frazzled.

serentiyToday is Tuesday and I am frazzled.  This T1 stuff takes up a huge amount of my head, each and every day.

Four times (four frickin’ times!) I have been to the GP with my son for him to give me permission to order his prescriptions online, and I’m still not online and I have to go back again!  What makes my inner-banshee come out is the waste of our time on top of people not knowing what they are doing.  I know what I’m doing, I have too, dithering and incompetence are not options when your child needs his meds to stay alive.  Since he’s turned 16 he has to give me permission to access his online records, to be able to order all his meds he needs.  I get why he needs to give me permission, he’s 16, he can go to the doctors by himself if he wants but he is happy for me to access them now; this may change and that’s fine.  Remember the movie Terms of Endearment?  Shirley MacLaine screaming at hospital doctors ‘give me daughter her goddamn pills!’  I want to do that in the GP surgery TODAY ‘give me the online access FFS!”  It’s a good job I only work three days a week sorting all this stuff out takes at least half a day a week it not more.  Why on earth you can only order a months supply at a time is also backward, he’s a type 1 diabetic, a lifelong condition which is not going to change, he needs this stuff – helllooo??!! penny dropped yet!?  If you ask for more than one month’s supply you get accused of stockpiling.  No, not stockpiling, just trying to stop me and the NHS wasting time every month, doing the same thing every month (nurses, GP, pharmacists etc) – just so inefficient and a classic trap of ‘it’s always been done this way” mentality.  We can only have one small sharps box a month, we can’t throw any of the one-use needles in the regular bin, they have to go in a sharps box.  One box is not big enough, we can’t have a bigger one.  Why?  Because we can’t.  However,  we can order one and pay for it ourselves but the NHS won’t dispose of that one, we have to pay £34 for the privilege.   So I ‘CBA’ with this laborious tap-dance every time and I bend the tiny needle out of harm’s way and put them in the bin.

So, that’s all the practical shizz,  as well as on top of keeping the cupboard full of supplies stocked including hypo treatments in the kitchen, car, schoolbag, school, our bedside drawers.  And then monitoring levels before and after every meal, worrying when I go to bed he’s going to drop low, or be too high in the morning  Trying to find his CGM at 3am to test in a tangle of arms and duvet; then trying to correct or wake and treat and then try to get back to sleep if treatment has needed to be given, whilst a shit load of adrenaline shoots through my body.   After nine months of learning all about T1 I now know more than ever what it means and today, I’m frazzled.  I know I won’t always be but today 😦   I echo the words of George from Seinfeld ‘Serenity now!’.

Magpies – Big Mean B*****S & I hate them

 

PICA PICA
total bastard bird

With shoulder tendonitis hurting me like a git, being up in the night with high sugar levels with my son, work and GSCE revision my head is as fried as poss this week.  So I was welcoming a Saturday morning of plod and decompress, to ramp up again for the week ahead.  For the past three weeks, we’ve all be marvelling at a Mum and Dad blackbird working so hard to feed their babies, every 5-7 minutes one of them swoops in, beak full with worms, taking a moment to pause and look around before disappearing deep into our hedge to feed their hungry babies. Both boys have enjoyed seeing them also, counting how many times they flew in and out in an hour, 14 the last time we counted.  Cut to today and when I opened the blind this morning, and there were two magpies who had gone into the hedge and just eviscerated the babies as far as I could tell.  I can’t even put into words what I saw.  I raged out the back door and scared those evil magpie bastards off.  It just set me over the edge, tears came, my heart was so sad for those parents who had done nothing but all they could in their power to keep them, safe, warm, protected and fed.  All of which human parents do, and more so T1 parents who keep that 24/7 radar scan going, adjusting all the time.  Magpies are like the shit that comes with T1 diabetes, we do our best only to have an ‘evil magpie’ swoop on down and shit all over it for no reason eg: food, hormones, illness, stress, no fathomable reasons even – it can be anything at any time.   So I making it official, magpies are the evil mean bastards of the bird world because they remind me of T1 and battling blood sugar levels.  NEWSFLASH PEOPLE – getting better control is what we try and do all the time, it’s not that we are not ever doing that, we are doing this and if tickbox levels happen it’s great, but don’t think to do the same again has the same results.  Oh no, that would put the piss in piss-easy.  You just have to fight to bastard off with a big mental and physical stick, sometimes one swift hit will do others you have to bash the bones of it for hours.  I haven’t seen Mum or Dad blackbird since and I know it’s nature and all that, but fuck off nature for a bit yeah?!, and stop kicking us in the balls and beaks because I’m so totally done today.