a plot on weight and an ending of woe

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*Most of this is word for word from a twitter babble from this morning but I have added more information as it came to me. You can follow my twitter for diabetes and lots of other garbage @Endo_Gremlin

 

Something that has been on my mind a while just got pointed out to me again. Talking about weight in front of children. It should not happen. It causes trauma. That is proven. It absolutely traumatised me. As a child with diabetes I was subjected to being weighed at every clinic appointment. Technically I still am but I refuse to be weighed given the trauma it causes me and how it triggers panic attacks and my body dysmorphia.

 

As a child my weight was taken in a side corridor surrounded my green walls and stick on cartoon characters and then stated to me in a clinic room and put on a plotted graph. Children did not get the privacy and dignity afforded to adults at clinic. Given weight is a huge subject of bullying in children this is appalling. I hope it has changed. I don’t know any kids with diabetes or parents of kids with diabetes to check though. Anyway, back to my horrors. This graph had a line on it that showed where my weight was expected to be. For my age. It didn’t account for my height as far as I remember. So from a young age (6) it was constantly drilled into me that I had either hit or missed weight targets. I was ok, too thin or fat. As a child. How is that acceptable?

 

I still have nightmares of the white paper within a green folder being slid across the table with the graph on it and the pen hovering over where my weight was. Too low. Too high. Pen tips tapping the graph. Hums and awws while looking at the graph. Developing a fear of a Doctor so bad I refused to be seen by her and would wait an extra hour to see another.  I had ketoacidosis as a child and was clearly deeply mentally disturbed by my diabetes but where did my Doctor get to put that star on the graph? What was my HBA1C? Could I be tucked into the ‘good’ or ‘bad’ patient folder. That is what it felt like.

 

I was told to gain weight but given the choice of whether to see a dietician which looking back was a bad idea. I feel a dietician should have been present when they started the weight discussion if they had it at all. Perhaps then I would have had a healthier relationship with food. Instead I just ate crap and then went above the line and wondered why they were now so angry with me. I was now above the line? I did what they wanted? I avoided all the terrible complications they said would happen if I was an underweight diabetic? All confronting me with my weight did was create paranoia. I went against my mum and ate when I shouldn’t have because I feared what would happen if I was underweight. I mean I took the insulin and it didn’t impact my HBA1C so…what did they want from me? Only to find the stigma and anger of my Doctors was worse when I was then deemed ‘overweight’. The thing is; I was only ever a size 12 for years. I had a big heavy chest. I’ve weighed them. I carry a stone on my tatas alone. But the BMI!

I now have body dysmorphia. I AM big now. I’m fat. I know and accept this. My diabetes is stable like this. But sometimes I see a far smaller lady in the mirror and sometimes I see a far larger person. I feel sick when I see mirrors.

I have disordered eating. I have a terrible relationship with food. I cannot take on a diet without becoming obsessed and anxious and breaking down. And it all started with showing a child a graph about their weight. Something I should never have seen. Show the parent. Not a child. Never a child.

relaxing while anxious

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I am an anxious critter. Two disorders and a phobia. Lots of therapy and tablets each night. But alone that is not enough.

 

I have tried turning everything off within a set time period before going to bed. It doesn’t work. I’ve tried breathing exercises. It doesn’t work. I’e tried whale music…no. It took me a while but what I found DOES work is…AGE OF games. Mostly I play age of empires II or age of mythology because on Steam you get stickers for achieving various things. Play as the god Odin for 10 times and you get a stamp. Play a certain scenario for ten times…stamp.

 

The thing is…I completed these games with my Father years ago. The hard scenario parts. I know the games in and out. I know how to win. So a scenario of any sort now is not stressful but simply fun.

 

So most nights I wrap up my evening with a quick game of Age of Empires/Mythology. The goal of earning all the stamps on Steam is great. I have to say though I hate that I will never earn them all because I do NOT do online multiplayer games. That sends my anxiety UP. I just faff on my own. So it saddens me to know that I will never do it all.

 

I wish there was a setting for personal play or something.

 

But yes…video games get a bad name but they do have a good purpose. As with anything in life it is about moderation. It is about knowing your limits and the limits of those around you.

 

 

wordless wednesdays

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Ok so that is not wordless but. My diabetes hates this weather. The humidity is causing so many problems. I am exhausted. I don’t enjoy the weather; I fear what it will do to me next. I’ve had times when I have stopped insulin altogether and had none on board and still gone hypo.

 

And my job is physical and the aircon is not strong enough for this bullshit to be honest.

 

My thyroid could kick in at any moment and make my body feel like its colder than it really is. No really. Please?

imagine sam vs diabetes for real.

me: hey betes could you explain wh-

betes: I DO WHAT I WAAAAAAAAANT

me: ok. cool. that makes sense. I’ll just libre more and te-

betes: THAT IS RIGHT. RAWAAAWR.

me: whelp.

me: you’re rude.

betes: i’m rude? i came to kill you 20 years ago and yet HERE YOU ARE, still FUCKING BREATHING.

me:…. betes: yeah. so shut it.

me: lulz. waves new tech.

betes…..’you’re a dick’.

 

how to words work again?

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This week I have had two hypos that have not had badly low numbers but have left me unable to talk or use my limbs properly. I have only ever had one of those in my diabetic life. So one in 20 years then two in 2 days.

 

Saying calm is hard. It is scary. I want to go through every fraction of my life for what changed. I feel I have to find a fix. 

 

But the reality is sometimes bad things happen and there is not a cause or a change and there is not a fix. Even the ‘best’ diabetic will go hypo and there will be a chance it is one that has you staring at your dog unable to make his name leave your lips. There is every chance any diabetic could end up with their tongue pressed between their lips as they stare at their smartphone and try get their fingers to stay still enough to type out a message to their mother saying ‘you have to phone my work cause I can’t talk…or do much of anything.’

 

I just have to move on. As Grump would say I need to ‘live long and bolus’. The Grumpy Pumper is a wonderful blog and twitter to follow. Listening to him taught me a lot about not getting down on myself when bad things happen; especially when they are completely out of my control. He tweets more often than he blogs but is absolutely worth a follow if you have somehow not heard of him yet.

 

I mean, the closest I can get to reasoning is the horrendous humidity but I can’t predict or control the weather. So sometimes you have to just try not panic and sometimes you have to just keep going and sometimes that means eating cereal with your hands cause you keep dropping the spoon and that is fine. Tomorrow will still be there.

I May not like her but

….attacking her this way is not ok.

 

Officially in the twilight zone defending Theresa May.

 

She wore her libre last night. That is the white circle you see on her left arm in the pictures. That circle has a sensor which monitors her blood sugar control and aids her in better controlling her disability. I have one too. So do many diabetics I know. There have been horrendous comments saying it is her on off switch, her command receiver, that she’s a cyborg ect.

They say that is where she gets injected with her command drugs. That she is a lizard person. It isn’t natural. She should not wear it when it will be seen. It is not ‘right’ for a PM to show ‘weakness’.

Would you say all that to ME too? Should I only appear this way when YOU deem it fit? This sort of talk is ableism.

 

It is attacking her for her disability. It is WRONG. There are plenty of reasons to have a go at May but her being seen in public with a tool that helps manage her disability is NOT one of them. How many diabetics will see that sort of abuse and go ‘well I can never show mine in public.’. ‘I won’t wear one’.

 

Also, plenty of commentary talks of how it is not available on the NHS. WRONG. NHS Scotland provide the Libre and its sensors. It is being rolled out across all health boards. There is access in other parts of the UK but yes it comes with some costs. So report that right.

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When I started this blog I talked about Nico. Sometimes I still mention him and I don’t always remember to clarify that he is my 5 nearly 6 year old lhasa apso. I often just say he is my boy, my chief, my wee man. My son. I’m his mum and that is how it feels. The picture I’ve linked to is him as a 1 year old sort of adult being aloud to wander off lead in a local wild area for a bit before I got too afraid and put him back on his lead for the next decade. Or I hope decade.

 

Nico’s legs stopped working properly tonight. I don’t know when he got hurt and I don’t know how. I just know that when his ‘gran’ (my mum) got home from work he went to try greet her and he barked and was enthusiastic and his back legs just didn’t work. They dragged down the stairs in a ‘thump thump thump’ as I watched in horror. One sort of did, but the other just dragged behind. I phoned the vet at once who booked us in for an hour and a half later. I carefully picked up my boy (my life, my child, my light in the dark) and placed him on our bed where he had lain all day appearing fine as can be. He is a lhasa and he’s lazy as they said he would be. For him to lie there all day snoring is not abnormal but now I’m tormented with questions of why didn’t I see it before? When was before? What hurt him? Will I lose him?

 

The vet did not help in the way I hoped. She looked him over and his legs appeared weaker than before in the house. He clung to me and didn’t try to fight them off; a sign of problems as his usual state at the vet is to fight and one she had readied herself for after seeing his notes. The vet who saw him asked for the other vet in the building to consult. They confirmed neurological damage and immediately referred my pup to Edinburgh’s animal hospital. Normally he hates the car but he went without protest. Then he went from my arms to a nurses and that was the last I saw of him. 7.10pm 5/7/18. Just to note.

 

They confirm it is neurological. While I sit here at 4am pouring my hear out my son is in a cage of some sort in Edinburgh. I hope he is sleeping and content. I know the med student who is going to do the overnight with the animals was cheerful and said Nico had taken to him and seemed nice but…well it isn’t me is it? That student will have other things to do. Nico will wonder where his family is. Where is his maw? Where are his grandparents? Where are Senna and Doug, the other pups. It is a horrible thought.

 

Tomorrow Nico will be given an MRI…that is unless he deteriorates overnight but frankly it is 4am and my phone has not rung so I am hoping he’s dozing in a corner. It sounds horrendous to think this way but GOOD news would be that he has had some sort of stroke. A blood clot. That way will be rehab and painkillers and taking it easy. The bill will be half. We would get him HOME sooner.

 

The other outcome is he has something pressing on his spinal cord. That means surgery. It means risk of infection. It means more weeks of him trying to stand. More weeks of him in hospital away from his family. More stress on him. If he needs surgery they say he won’t be let home until he shows he can stand and pee..  All the current situations give him a 90% recovery rate but nothing is certain yet.

 

But those are good notions. It could be a tumor and then there is nothing they can do. It could be something else and I’m confronted again with prices and is it worth it for him and is he in pain. At the moment money is an issue I will deal with later. Nico’s grandparents love and support him fully.  I will gladly pay each penny of a payment until he dies of old age if it means I get him another ten years and he’s an old grumpy guard of a lhasa still going ‘hey! oi! dog on my street!’.  I would happily give up holidays anywhere for a week hanging over the back of the recliner with my bud surveying the world.

 

But for my bud, my chief, my lad, my wee man, my Nico, it would be best if it all goes the easiest and cheapest way tomorrow. He’d be happier and healthier. But if it doesn’t boy, maw’s here 150% as long as it won’t hurt you and you have quality of life. I’ll do all the shifts. I’ll break my back to fix yours. Maw loves ya boy.

 

 

 

(1 hypo and 2 hypers from emotions so far. I dare anyone to hold it against me)