Insulin Pumps, and what its like to wear one, by Grainne Flynn

The personal story this month comes from Grainne Flynn...........
Insulin Pumps and what its like to wear one.

Living with an Insulin Pump.

I did a trial period on the insulin pump before going “live”. This means that I would practice attaching it but not using insulin just yet. I used a saline and water solution instead of insulin. The purpose of this was to become less afraid of it and to become familiar with the button pressing and more importantly to figure out where and how I was going to wear it.....
You can read on here:

http://diabetespeopleire.blogspot.com/2015/04/insulin-pump-what-is-it-like-to-wear-one.html?spref=fb

The #Type1Diabetes See-Saw, All we need to get High is Healthy Food !

The Type 1 Diabetes See-Saw, All we need to get High is Healthy Food !

#Type1Diabetics can get #High without #Drugs.

Iv wanted to put this into words for quite a while now in the hope that others might just understand a bit more, but we are all so very different.

Our routines, our ratios, our insulin type, some people pump, some on insulin pens, then there are others mixing insulin and using a syringe.

For blood glucose monitoring & testing there are people using, a The Dexcom, The Libra, The Guardian and various other types and makes of blood glucose meters. Apple are even going to get into this apparently, it seems nowadays Blood Glucose Testing is #trending but it makes a change from "Cinnamon & other stuff curing us & reversing us lol.

I'm going to write strictly from my point of view here, experienced but not professional !

Ok before we start lets just say getting #high is real easy and inexpensive if you have #Type1Diabetes, all it takes is nice healthy food that has #Carbohydrate in it. Without insulin this carbohydrate (of any kind) has the ability to make us real sick and even hospitalise us. 

The High, if left un-noticed & untreated is closely followed by Ketones, and then we're in big trouble. 

We basically have an intolerance to carbohydrate, we can't process it and move it on. All because our autoimmune system has gone into overdrive and has killed off the insulin producing islets in our pancreas, so anytime we eat carbohydrate we must inject insulin.

FYI the foods without those carbs are (fish, meat, eggs, cheese, diet or sugar free drinks & water) O Ye and lettuce. So called "Diabetic" foods are a NO GO ! They are expensive and more importantly they are a laxative that comes complete with tummy cramping and urgency (if you get my meaning) .........

When it comes to my "Highs" I don't know which part is worse.

• The absolutely awful taste in my mouth, that I call  "candy floss mouth".
• The dreadful headache, that paracetamol won't touch.
• The severe lack of focus my eyes have, like someone's changed the lens when I wasn't looking.
• Wet irritated eyes, that stream water.
• A runny nose.
• Feeling really unwell
• The cramps in my tummy and then of course the diarrhoea.
• That "I need space" I'm irritated feeling. 
• The backed into a corner feeling, that makes me want to come out fighting.

Luckily those who know me, don't fuss me, I just inject insulin, drink water, and then sleep, I normally set an alarm to check again an hour later to make sure my BG is coming down. If not ? Then more insulin.

No I'm not saying these are the actual symptoms of #Hyperglycemia. I'm saying that this is what happens to me. I would suffer from what I call "Dumping" anytime my system is not happy because of (high BG, some foods, some medications etc) my insides go into fight or flight mode and get rid of it real fast.

I find my Highs a little bit of a snake in the grass, it sort of slithers up on me with no warning and most times for no obvious reason. Unlike its pall on the other end of the #Type1 #SeeSaw, (the #Hypo) 

With a #Hypo, visibly seeming drunk and the fairly instant feeling that goes with it generally prevents an emergency, unless I sleep through the initial stages and wake very very low, but getting high is a bit different, and I could be very high before I realise it. Don't know about you but getting it down is a slow process. For all these reasons I went on a CGM to help with a more proactive way of managing my #Type1

I'm told if we did a breathalyser test when very high, we would fail it and it would show up as over the limit. Iv never tried it but I suppose it makes sense, that much glucose / sugar just 

Floating around in our blood.

The other really scary thing I discovered is, when blood sugar is high, the lens of the eye swells, even after getting your BG back to normal it can take weeks for the swelling to go down fully.

It was only as I began to struggle hearing, that I found out it effects the delicate hearing organs too.

High blood sugar effects every single part of our bodies,  doing damage to delicate nerves, organs, extremities, & skin all of which suffer when you have prolonged periods of blood glucose that is higher than recommended.

It's important to know that it's not just eating and then not injecting insulin for the food we'v eaten that causes us to get a high BG (Blood Glucose) 

Very often it's my high BG that lets me know I'm not well, or at least I'm not going to be well, but let me explain this.

Any kind of infection can rise my BG, before I know exactly what's wrong. 

I'd know a day or so before, Iv a kidney infection, a cold, ear ache, chest infection, etc as the onset of an illness / infection will be effecting my BG before I actually feel ill. These are thing it's best not to ignore. 

I suppose what I'm saying is. Be strict when it comes to managing your blood glucose. Get to know yourself very well, if you keep a physical record of your daily BG, you won't be long about knowing when something is not right.

I'm going to leave you with Some Diabetes Language you may find useful when trying to understand what people in the diabetes community are talking about, and yes Diabetes has a language 

• DSM ( diabetes self management )
• MDI ( Multiple Daily Injections ) 
• Pumping ( wearing an insulin pump )
• CGM ( continuous glucose meter )
• High ( Blood Sugar above the required limit )
• Hypo ( blood sugar below the required limit )
• Basel ( background insulin only )
• Bolus ( fast acting insulin we inject with food )
• Testing ( finger pricking to test blood glucose )
• BG ( blood glucose )
• Sensor ( is attached to the skin for use with a CGM )
• Site ( this is a term usually used by pumpers when using  an insulin pump) referring to the place on their body they put their "set" their insulin comes from their pump, through very fine tubing, attached to the set thats attached to their body.

• Correction ( this is the ratio for correcting a high BG)
• Hypo kit ( is GlucoGen injection for emergencies when unconscious, glucose tablets or drink, Jelly sweets, full sugar drink. Stuff we carry to treat a Hypo )

• Ratio ( every diabetic has a different ratio for their Bolus insulin, 

example : for every 5 grams carbs / 1 unit of insulin, a small plain scone without jam, might have 30gms carbs, this would need 6 units of insulin.  (30 gms carbs ➗ 5 insulin /carb  = 6 units of insulin needed)

Davina 

Gemma's Type 1 Diabetes Diagnosis, told by Dad, Sid

Gemma's Type 1 Diabetes Diagnosis, 

told by Dad "Sid"

Gemma had just won a local Irish Dancing  Feis and we were so proud of her. Weeks before that her Irish dancing teachers were concerned she was lacking energy and we noticed she was drinking more. In hindsight she was suffering and the effort she put in to win that competition must have been huge. 

The matter of fact tone from an elderly doctor, who had done this too many times, echoed in our ears but never registered fully. 

What was he saying? Injections? Life? No Cure! 

We rushed out of that room to cuddle our daughter and from that moment our lives changed direction.

We were taught in the hospital how to use needles, (no pens then) that we had to push into the beautiful skin of our innocent little daughter? At first it was terrifying, would we harm her if we did not get all the air bubbles out, how could we do this day in day out? but our child needed us to be strong and so you learn and you learn fast. 

You become experts to the extent you are educating young doctors on the monthly diabetic check ups. You can read about it but life is the real tutor. But it was Gemma's courage, and not ours, that to this day fills me with wonder and pride. Not once did our little Gem cry or moan, she knew this had to be done and her strength gave us ours.

She progressed through her schooling years. The ratio of diabetics then, ( much higher now) was 600/1. Gemma was the only diabetic in her school of 600, cruel odds to favour us. By the time she was 12 she felt ready to take on the injections herself. Her teenage years were quite eventful, we were warned to look out for the rebellious period when teenagers just want to be like their peers. Who could blame her. Even a sleepover was fraught with anxiety. 

On one such occasion I got an early morning call from a hysterical mother that Gemma had collapsed. I rushed over to find her covered in blood. She'd had a hypo and on waking up, she fell out of bed hitting her head on the floor.

 I used an emergency injection of glucose that I carried to bring her round. We discovered Gem had not been keeping to her strict regime but after that incident she never wavered. The rest is beautiful history. 

She found in Evan the perfect partner, an understanding, strong, calm man who complimented her and she him. They gave us another Gemma, a minimee angel called Chloe.

Gemma's devoted Dad

Sid x

Gemma and Chloe

This picture is of Gemma's family unit when Gemma was same age 

as her daughter Chloe is now !

Type 1 Diabetes & The Golden Prick Award

Type 1 Diabetes & The Golden Prick award !

Living with type 1 or type 2 diabetes in isolation from others who live the same mathematical, clock watching, tightrope as we do, it's easy to just let things slip, and before you realise whats going on your sitting in your endo's office explaining how your HBA1C is so high, to someone with their head slightly tipped to one side and trying to wear their best sympathetic smile while nodding in acknowledgement of what we are saying, as they listen to the endless supply of lies we feed them. The chest infection we had, the steroids that our stupid GP prescribed, the dog eat my meter and I didn't have a spare ( yes Iv heard that one ), the flu shot made me as high as a kite ...... For weeks ! ( Iv used this one ). 

The truth is that sometimes we just get sick of it all. Sometimes when your the only one in a group of non diabetics it's hard to do what we're supposed to do. We all need to fit in, however,  constantly fitting in, will leave us "long term" in trouble because of the diabetes complications that lifestyle can lead to. 

Sitting with non type1 friends, and whipping out the meter, the strips, and the finger pricker as we proceed to do a blood test there and then, so we know what insulin is needed for the food we'r about to eat, can be met with gasps, awkward silences or disapproving looks. It's not like we can do it all under the table. It's a fiddley business.

For this very reason it's good to mix with others who have the same lifestyle as you, TOTAL understanding, comfort, support, information and help, all serve to make living with any type of diabetes just a bit more bearable.

There's not a week goes by without someone in one group or another, either totally excited with a HBA1C result, or in other cases totally floored by their result. No matter what the BG meter result says on the many occasions through the day that we test, it's the big exam that's all important and a decent result feels like recognition of a job well done. I seriously think a little trophy or reward should be standard at a diabetes clinic. 

I actually stood in my garden one day in spring, after cutting myself on a Rose thorn, to save myself from yet another finger prick I grabbed my meter and tested my BG. I hear you, I hear you, relax, hygiene etc, but at that moment i was going low, I saw an opportunity not to have to prick my finger and I took it.

Most people would wash it, disinfect it and plaster it, all I could think of was "free & effortless blood" all ready for use. In my world any blood is a potential test.

My well pricked fingers don't always donate and a good squeeze is sometimes necessary. One day there I was wearing very pale pink, all dressed up and ready to leave the house, one quick check I thought. What I got was a shower or blood that shot across the kitchen and all down my clothes.

So it's off with the dress, and out with the disinfectant to clean the floor, the counter top, the tiles and anything else that got it. Quick check ? Ye right ! The joys of well used fingers.....

Lick or wipe ? Are you kidding me ? Think of this. Your out, all dressed up and you need to check your BG because you don't feel right. 

Your low, now honestly do you fiddle around looking for tissue, getting blood on clothes ? 

Or do you lick and desperately search for something sugary before it's too late ? 

Remember when you answer the above questions "low & thought" rarely happens, unlike "low, instinct & automatic" when survival is all that matters.

That was life before my CGM so now it's testing every 12 hours to calibrate my medtronic guardian, finally my finger tips are beginning to feel a bit more like normal, and the alarm goes before I get to the brain dead stage.

For all that my poor fingers have been through Id like to win or at least be nominated for the "golden prick" award. 

Davina 

More than a Mum, A day in the life of Stacy and her child with Type 1 Diabetes

More than a Mum

These are  Stacey's feelings,

Stacy is Mum to a child with Type 1 Diabetes.

A Day in their Life.

T1D is a 24/7 job ... and everyday is like studying for the most important test in your life then the next day it all changes and all that you studied no longer matters because the questions on the test are no longer the same material that you studied for ...

It is gaining a medical degree in a matter of days and then being left to make life altering medical decisions constantly...

Its injecting medicine into your child that they need to save and keep life, but that very same medicine has the ability to, god forbid take there life in the blink of an eye ...

It is living in a constant fear that you cannot show to the outside world ...

It is dealing with ignorance on a daily basis and judgment from people who don't have a clue..

Its about trying to get people to understand just about everything has carbohydrate in it, so unless you want my child to survive on only water yes I have to test, measure and calculate everything IN FRONT of you ....

It is dealing with strange looks from people who do not understand and don't see why you may be watching and hovering over your child at any given time and why you cannot relax because you are trying to let them act like a regular kid but you know what the number on that little machine reads ..

its about truly never sleeping again....

its about holding your child while they sob because they don't wanna have diabetes anymore, they don't wanna be poked and prodded they don't wanna watch the other kids do whatever they want, they don't wanna sit out of the birthday cupcake that came to school, and watch everyone enjoy it while they eat a cheese stick cause their blood sugar is over 300 and no one ever bothered to let you know they would be celebrating a birthday that day...

Its about dealing with school issues and what occurs with your child after a low or a  high Blood Sugar and how it takes longer for their brain to clear and focus afterwards ....

As a parent it is about losing a small piece of yourself daily because you are giving every piece of yourself to your child and this disease, all while trying to function normally as a person and be there for the rest of your family ...

Its about constant worry, about all the other health issues and risks that go along with this disease that can also god forbid take their life ...

 its about learning who is truly there for you and who isn't ..

it is packing for a small trip everywhere you go making sure you have ALL your supplies and food for lows and food for highs and drinks for both....

 it is also about holding your head up high at the end of the day and saying to yourself I DID IT.

I tackled all these things again today and I kept my child healthy..

This is NOT a pity party it is a request to Please don't ever judge others.

You don't know what their daily struggles are.

Stacy......