Since my eldest was diagnosed with type one diabetes in the Summer I’ve felt like I’ve had a newborn baby all over again, aged 15. When we brought him home 10 days after he was born we felt scared and clueless, every minute something new was realised. It is the same all over again with T1; it’s all new to us all.
Very much like when you have a newborn, they are your sole focus as they rely on you to survive. Same again with T1, I’ve had to back off from life and all the associated noise as I don’t have room in my head for much else, other than this constant T1. Do we have enough needles, insulin, hypo treatments, nighttime insulin, test strips, batteries, plus about another 25 things each day we need? What are his levels right now? And before and after breakfast/lunch/dinner/snack, sport/school/watching TV/wrestling with his brother/walking to the shops/car journey, or during illness/stress/teenage hormones/upset ? He needs to go to bed between blood sugar levels 8 and 10 to ensure good levels in the night, but what if he’s too low or high, will a correction bring him down or a snack bring him up OK? Which snack though? Getting up at 3am each night to ensure it’s gone to plan is now routine.
Every night I go to bed gripped by the fear he will slip into a hypo and become seriously ill. It’s 24 hrs air traffic control scanning, it won’t ever stop. Every other illness or condition he’s had has come and gone, this one is here to stay. It’s a bastard it’s hit during the teen years with hormones and GCSEs, take all the normal stuff Mums worry about with their kids and add on a life-threatening layer. I’ve been distraught and bereft but also laser focused and determined to deal with it all, in fact, I’ve checked his level mid-blog post (11.2 fyi) and I got a huge hug of my 6 foot 2 inches newborn baby! And I have three new divine handbags to use to keep all the shizz in which makes this all a bit better.
After such a crap hard and cold Winter, I recently wrote on my Facebook page I was pissed off at parents sending ill kids to school, not mentioning the school. This was after my 11yo came home saying a boy in his class did nothing but a cough all day in his ear and wipe dark green snot on the table, equipment and his trousers. I asked his teacher why an ill child like this was in school, but I was told it was fine and Y6 was important for attendance SATS blah blah blah. A few days later I was summoned into school by the head as this post from my Facebook page, had been shown to the head and most astonishingly this person wanted to remain anonymous and the head was happy to protect their identity. I refused to attend for a ‘telling off’ as the head made it clear a discussion was not an option. As my Facebook settings are set to ‘friends only’ and I only have IRL friends on my page, it is someone I know face to face. Why they chose to do this I will leave up to you to decide, for me I know all they wanted to do was cause trouble for me in a ‘Mean Girls’ kind of way. If they were so offended why didn’t they come talk to me before they went to school? I’m not interested in why they did this because I pity them and their need to feel big and clever. Now we are on a stage two complaint I’ve made against the school after the Chairman of Governors became involved in a somewhat odd way. If school want to spy on parents social media and take anonymous tips off, fine, just make this clear in the social media policy so parents know this ‘police state’ mentality exists. There is now a total school and parent shit-storm and all because someone was a tattle-tail, aged 40 something. I don’t give a fig about the outcome of the complaint, we leave in 3 months and I can’t wait to drop the mic on this utterly bitchy twisted cowardly spineless nonsense. And as this blog, by my choice, is public I suspect this post will be shown to school as well – waves hello!
I have two sons, the teenager about to be 16 and an 11-year-old. Of all the combinations of children and siblings, this seems to be viewed by society as the least favorable. Brothers are the devils work apparently and their only future is to end up like Liam and Noel, at each other’s throats and hating each other. I had an older brother growing up and I loathed him from the aged of about 12 to 20, he was mean to me and all my mates fancied him with enraged me. He once stuffed all my soft toys into drawers around the house, leaving their heads crushed and feet sticking out. Yes, they were soft toys and no real hard came to them but I was so upset. He also once gave me plaque disclosing tablets telling me they were sweets, oh he told me to tell my Grandma I’d hurt my ‘C U Next Tuesday’ as she would think it was hilarious. Of course, I did things to him, threw all of his drumsticks in a hedge, put face cream in his new trainers and told his girlfriend he was going out with someone else. Yes, all mean-shit we did to one another, so much fun! My poor parents – I’m sorry. I stopped loathing him when I was about 20 and we both moved to London. We have a ‘normal’ relationship now, we are both in our mid to late 40’s and have children and I no longer want to cause him shit. Point is all siblings fight, whatever age and sex, there is no one ideal perfect combo. Today my teen as helped his brother with his maths homework, they’ve played Fortnight together with some yelling and disagreement, the youngest got the eldest a loo roll from the cupboard as he’d been caught short on the loo, all whilst heaving into his hoodie saying it ‘smelt like dead toads’ All pleasant normal stuff, no alleged Gallagher feuding for today at least. Point is we all detest our siblings now and again, so we just all gotta roll with it.
With only 26 letters in the alphabet and being aged 47 I am still amazed there are any new words left that I’ve not heard of, but yes there are and they all relate to Type 1 Diabetes. CGM, MDI, bolus, MDL, units, clicker, test strips, HBaC1 and so the list goes on. It does nothing other than blow your mind. Add with different NHS healthcare providers and locations, who do things differently with different things in different ways and boom, mind blown again. I feel like I’ve been playing a game of The Crystal Maze with the clock counting down until I know EVERYTHING. But I’m still in the room with people yelling at me with half a clue as to what’s what and I’m about to be locked in the room. This Mum of a T1 always feels all the time like the room is going to close, I am stuffed full to the point of painful indigestion with knowledge but only some of it has been digested, while the rest just sits there causing acid reflux and anxiety. At present we are trying to sync the makes of a CG transmitter with a CG monitor with an app provided by another company. Three different companies, with three different products that should all work together, but we haven’t managed to get it all to work together, yet. If we do, it means I will be able to look at my phone in the middle of the night to see my sons blood sugar levels, not get out of bed in the cold and dark to try and find his arm to scan him for his level. Sounds simple enough, but I’m tired, worried and it disturbs us both. So again this afternoon we are trying to get all this tech to line up, these companies who provided all these amazing clever tech ways to manage type one are incredible. Some are big pharma giants whilst others are a bunch of people with the know-how to develop what’s needed to help manage T1. I am thankful and grateful to them all and this helps me manage my anxiety about always thinking about blood sugar levels 24/7.
Having a child diagnosed with type 1 is like being dragged out of bed at 3am and being shoved into a rally car as a navigator with no warning or training. The pedal is to the metal straight away and the first blind bend downhill is hurtling towards you before you’ve even opened the instructions, which are bouncing around in your hands like a scorching hot potato. All you can see is a cliff fast approaching as you desperately use your fear as traction to avoid flying off the edge into the deep unknown. Somehow, and you really don’t know how the car’s rear grips the corner and your driver miraculously guides the car round onto the straight, phew, saved. But there looms another bend, this time into dense trees with rocks either side, do I really have to do this again? Yes, yes we do over and over. Sometimes the route is not so treacherous and others it’s a 40mph motorway restriction for 200 miles. This is what T1 for me feels like, you just don’t know what is around the next bend or if you can see the next page of instructions. But you just inject right? Wrong. After three longs days of sugar highs and lows with no rhyme or reason, I just can’t be arsed to explain it all. I’m learning myself and I don’t have the energy to tell anyone else.
That is what the last few months have felt like. All my wind has been taken from my sails, my guts have been punched several times over and I’ve cried like a snot engorged breathless monster so many times. With the teenage years here never once did I ever imagine Type 1 Diabetes would enter our lives. Type 1 came in the summer, which we were just about getting our heads around then the teenager proper broke his leg playing football. Proper broken, as in a 2-hour operation and five metal pins inserted, like I said, proper. No bad tackle, just a combination of pitch, players and circumstance.
As he was playing in Manchester he was taken to Manchester Children’s Hospital, where him being Type 1 fast-tracked him to the top of the queue; which I am sure is just what it feels like with a Fast Pass at Alton Towers but without the fun or enjoyment, but I imagine much more adrenaline. All the staff there are just perfect in every way, just the best care possible he could have wanted. I even got a huge hug at 3am one morning when I’d left his bedside to get some air from another Mum who was doing the same. We held onto each other in the cold Manchester damp air hardly said a word, whimpered and sobbed and went out separate ways. No idea who she was, but we needed each other right there and then.
Some of my friends have been brilliant through all this, one even bringing me a Swearing coloring book and pencils, whereas others have not said one word to me about it all. That really hurt, especially those I have supported so much in the past with their crap. These people are now on my ‘fuck off and fuck you’ list.
Plaster is now off and rehab, physio, podiatry etc are all being done. He’s missed so much school but is doing his best, now his GCSE’s are a few weeks away. His head of year has been truly incredible with her support and care, not only for him but for me also. I can say the say for all the teachers and staff at his school, bar one, who send me a personalized letter detailing the STATS about poor attendance and results. No shit Sherlock, just let me tell his broken leg and pancreas about the STATS will ya?! What a piss-taking thoughtless doofus.
I’m trying really hard not to smack the face of the myriad of daft comments I get about everything that has happened from people, especially those in the medical profession such as his dentist ‘He shouldn’t be eating any more sugar then should he?’ I don’t expect people to have all the knowledge but I don’t expect them to be ignorant and stupid.
What next, who knows, and I don’t think I can take anything else for a while at least. Shit happens, we all know that, but those who have helped you in whatever way they can are worth their weight in everything under the sun, moon and universe.
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