Panic before bed

Tonight at 10.20pm I checked my blood glucose level before walking the apples and pears towards my nice comfy bed that was calling. Result on screen is 20.1 mmol/L High Blood Sugar flashes on the screen of my meter. Something is not right (no kidding Sherlock). My CGM sensor was showing 8.9 mmol/L so how has this happened? Have I knocked my sensor without realising? I haven’t felt great the last few days with a head cold brewing so I’m guessing this is the result of that plus a ‘not playing ball’ sensor as readings between my sensor and blood glucose meter are for some reason way out! Or is it my insulin pump cannula? Or could a frightful abscess be brewing. Which culprit is responsible alongside diabetes itself? First things first, re test blood glucose level , hands washed a second time and different finger used then test for ketones. Blood glucose meter shows identical reading to the first showing but to soften the blow the ketone meter reads 0.0. Alas there is a silver lining to this nasty dark grey cloud looming over my bedtime.
Now I have to calmly decide how to best react. No Kate running round the kitchen like a headless chicken won’t solve this. If I over correct I’ll encourage (with a great big push) for my blood sugar levels to drop to the nether regions. Do I set a temporary higher basal rate ? Do I do both? I decide to give a correction dose and check in an hour if by which time my blood sugar hasn’t budged then I’ll programme a temporary basal rate (TBR) into my insulin pump. An hour, tick tock tick tock it’s no good I can’t wait I feel the need for speed to check again….19.5 phew my correction dose is working. Double figures you will disappear!
I remove my sensor i decide I need a new one. If I put in a new sensor now and my blood glucose levels decide to play merry hell will it affect the sensor warm up?? What to do what to do. I’ll set my alarm for every two hours to check and insert a new sensor in the morning. But what if I drop too low too quick I have no hypo awareness. New sensor goes in with warm up commenced plus I change my pump infusion set and set alarms also better safe than sorry.
Another sleepless night to look forward to. Oh the joys. Ducking Fiabetes! Ok it’s been an hour as I test again 17.9 I smile and slightly relax as I know my blood sugar levels are dropping gently. Not too quick not too slow. It’s working. The initial panic subsides. Please Father Christmas can I have a magic wand for Christmas ? I wish. Nothing wrong with wishing. I wish more though that tonight I’ll be alright. I’ll be able to float off ‘scary heights’ and fall gracefully into a soft successful landing without any bumps. One hour and twenty minutes till new sensor starts reading blood glucose levels again plus I have my blood glucose meter to check too so time will tell…….
I wrote the above last night at 23.36 pm to be precise while waiting to see what would enfold.
Now it is morning. It was a bumpy ride. My new sensor woke me bleeping to warn of a hypo proceeding. I got up and treated this. Then at around 4.30am my sensor bleeped to warn of a predicted high. I got up and treated this. I then managed a few hours sleep subconsciously awake the whole time though. I’m now back in single figures. It’s not like that every night but when it happens it has a knock on effect. Feeling yuk but hopefully today will be a better day…. Seems like The Kingdom of Mellitus that I wrote about in my last blog became real last night but I wasn’t dreaming……

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The Kingdom of Mellitus

The Ketonians had been summoned to the Kingdom of Mellitus by the wicked forces that lurked in the underground. Untamed they remained always hidden, preparing for battle and ready to pounce with acidic bites. Sir Lancet drew back his arm and swiftly plunged his sword forward into the chosen one. He was famous for his unique battle movement that he repeated daily upon request. Age and time were working against him though and he knew that his dependable sword was turning blunt from all it’s action. Soon he would need to be replaced by a sharper and newer model, one that shinned brightly.
The High Priestess and her brother The Lowly Priest lived on opposite sides of the kingdom from each other in great castles that overshadowed everything. They manipulated Sir Lancet whom they cruelly engineered into repeat performances of battle to combat their ongoing and conflicting curses. The Knights of Medtronic and of Dexcom worked alongside The Knights of Nordisk. Together helping Sir Lancet as effectively as they could. Aided by enlightenment at times. Always governed by King Insulin.
The Gluconian magic that crept through the kingdom was notorious. Rearing it’s ugly head at forbidden times and on unwanted occasions. The war on Melitus was fierce and strong. It had resided in the land for decades but the protective Knights and their helpers stood bold and forceful preventing disaster wherever possible. United together in their efforts towards the ongoing and relentless battle that took hold of their kingdom.
For joyful and peaceful times they looked towards and hoped. To the ultimate freedom of the curse and their long awaited release from battle. To a time when all swords could be laid down and the chosen ones could rest.

The Nurse

Apparently I looked at my mum
As she went quite numb
While she was handed a glass syringe
When I was aged 3 back in 1981

Your going to have to inject your daughter
Yes every single day
This is Type1 diabetes
Your unexpected new life way

Nervous and unsure mum looked at my skin
How could she possibly press this thing in?
The nurse offered her arm for a practise shot
The orange was abandoned but not forgot

Afraid of doing the nurse harm
She unwillingly took hold of her arm
Teaching my mum a new way to protect
The nurse her arm she let

Ever grateful yet feeling dumb
As the nurses arm turned the colour of a plum
Health and safety now would have a field day
But back then the nurse had the say

So thank you to that nurse
Your valued more than the richest purse
For helping and for sharing
But most importantly for caring.

Mogwai eyes

Today I had a few thoughts about my eyes which I’ve decided to share. These thoughts are my own and are not by any means ‘normal’ but then I rarely care to reminisce on normality. From previous blogs I’ve written you may be aware that for the past fourteen plus years I have suffered with diabetic retinopathy. I’ve written about the various treatments and operations that I’ve undergone. But I haven’t mentioned one significant ongoing result from all of this. I’m usually reminded of this when it’s very sunny outside or when I’m rushed into hospital due to an emergency. The result of all the trauma to both my eyes means that the pupils in my eyes are now ‘fixed’. They refuse to react to any form of bright light.
This fixed factor makes me feel like ….a mogwai ( from the film Gremlins). Told you I’m not going to write about your bog standard normal thoughts! Ok so your probably wondering why a mogwai? I’m not saying I’m furry, fluffy and cute well I’d like to hope I’m still cute but certainly not furry or fluffy! My resemblance to a mogwai is purely the fact that both the mogwai and myself flip out when put in direct bright light. We both need to be kept away from such lights or blaring sunshine. However I do have the upper hand as I can walk outdoors in such sunshine providing I wear sunglasses. More importantly I don’t turn into a gremlin either (honest). I do find it uncomfortable and difficult to keep my eyes open in bright light situations as my pupils no longer react by getting smaller to protect my eyes from the brightness. Fixed pupils mean naked eyes for me.
On occasions when I’ve been rushed into hospital I’m checked, as is every other patient for ‘PEARL’ an assessment to determine if the persons ‘pupils are equal and reactive to light’. The bewildered and sometimes horrified look on the faces of medical staff examining my eyes is striking. Many a stir has been caused on many an occasion. I always say “it’s ok I am alive my pupils don’t want to play anymore and are fixed and therefore non reactive to the light your shinning in my eyes”. The sigh and expression of relief at the explanation is reassuring to both them and myself.
The lyrics from the song ‘Bright Eyes’ always gets me as my eyes don’t feel bright anymore after the past decade and half. They are still blue, the colour was never been damaged but the plastic lens implants and loss of peripheral vision has taken its toll. A quote from Shakespeare, ” The eyes are the window to your soul”. Well I guess my windows are steamy windows now. Thanks Tina Turner.
But despite my misgivings about my ‘worked on’ eyes I do stand by the following concept. Since undergoing all the operations, all the laser burns and countless drops my eyes are not wide shut. I’ll quote Shakespeare once more ” I have no way and therefore want no eyes. I stumbled when I saw. Full oft ’tis seen. Our means secure us and our mere defects prove our commodities” courtesy of King Lear. My eyes may be clothed in defects both inside and out but I can see clearly now the rain has gone…..

Can you turn it off please?…….

A few months ago I went to my GP surgery because I was feeling unwell and needed antibiotics. I knew I needed antibiotics because of the many previous times of feeling unwell which was embodied by a raging angry abscess and high blood glucose levels to accompany them.
I sat on the chair opposite the GP. He wasn’t my usual GP that I like to see as this was a short notice emergency appointment. I explained how the abscess had sprung into life the evening before and was now hell bent on meddling with my blood sugars. The area around it was sore, swollen and red, the lump was visible. He started to prescribe a course of antibiotics when all of a sudden my insulin pump bleeped. It was warning me of an impending high blood sugar level. The GP asked me what ‘that’ noise was. So I explained it was my insulin pump communicating a warning with me. He appeared irritated by the bleeping noise and then uttered the words ” can you turn it off please?”….
I sat there in utter disbelief, dumbfounded in dismay by the suggestion. The only ‘positive’ I could retrieve from those words was the polite use of the word please! If the noise had come from my mobile singing a tune then I would have understood his irritation of the noise. I always turn my mobile on silent or off when in an appointment. But turn my insulin pump off ?!?!? No way! Absurd! Insane! An abomination for myself a Type1 diabetic insulin pumper. If the bleep hadn’t sounded then my blood sugar level would have continued to increase at an alarming rate due to the infection hijacking my body. The CGM sensor I wore enabled my pump to warn me. If I turned the sound off I would have been completely unaware. If I turned my pump off I would be turning off my life line and throwing myself into some seriously hot water. The insulin needs to be pumped when wearing an insulin pump (hence the name) and the warning sound needs to be heard.
I immediately without hesitation argued my case for the bleep. I defended my pump with pride. I explained everything calmly and concisely whilst feeling saddened that I was forced to explain and defend my bleep to the GP.
Hopefully he learnt something that day. I know I learnt something. I learnt that sometimes some people regardless of profession, status, or intelligence need a helping hand and educating. So I hope in the future where necessary I can turn off the ignorance of others whoever and wherever they may be in a positive way. When ignorance is a poison let us be the antidotes.

Can Get Maddening

An interesting tweet I was able to relate to yesterday from @Colonelblighty got me thinking about the CGM (Continuous Glucose Monitoring) line that appears on my insulin pump screen graph whilst connected to a sensor. This line shows the direction of blood sugars in real time except for the time lag between the CGM reading and the actual blood glucose reading as the CGM is five minutes behind.
There are many types of lines, thin lines, thick lines, railway lines, blurred lines and then there is that ever waiting ever watched CGM line that we compulsively view when wearing a CGM sensor. It can become extremely stressful and frustrating waiting for that line to move in the right direction after an insulin dose correction or a hypo treatment. That line at those particular times ‘can get maddening’ to watch. Especially when it becomes flatlined at a high or low reading and refuses to budge despite all efforts made. Both insulin and blood sugars can misbehave at times and when they do emotions of impatience and irritation can join you for an absolute age it seems. Until it flickers. Until it moves. That line. In a correct relieving and satisfying direction. A smiles bursts into fruition but that can be quickly shadowed by a sour and vexed face if the expected and hoped for direction of that line doesn’t follow your plan.
Despite these turbulent emotions which sometimes are a daily occurrence I will say that for me this ‘can get maddening’ visual line is a godsend as it shows me what my blood sugars are doing and when. I have no hypo awareness. I lost it a few years ago and now without a CGM I wouldn’t know a hypo is happening until I’ve been revived after it. I also suffer with Hidradenitis Suppurativa disease and the infections caused play havoc with my blood sugars for weeks on end. The line is my safety net, my reassurance. Our latest hot weather has an impact on my blood sugars even a common cold, stress and hormones can fluctuate them and therefore that line incessantly! I may not particularly like or expect the journey it shows me but I’d sure miss it if I didn’t have it. They say we take things out on the ones we love so when that line doesn’t play straight it does receive a mouthful of infuriating thoughts! It can be a ‘love hate’ relationship watching that line as it roams through my life with diabetes. But it’s a journey I’m grateful to view. That inside knowledge that the line gives is invaluable.
I do however look forward to the day the CGM and insulin pump are integrated and reactions to blood glucose levels occur instantly and proactively without fingers pressing buttons. Mind you if we are on the road of wishes then above all I wish that cure would move in a super fast straight line direction right to me and all of us touched by diabetes……

What and where to wear…..

Ok today has arrived in style with a blood glucose reading of 5.8. This evening I’m going to a wedding party. I’ve taken an age to choose my dress and shoes after careful debate over colour, style and where do I wear my insulin pump! I find myself in a dilemma whilst choosing clothing as to where I can wear my pump with whatever clothing I’m wearing. It’s a fitted dress so do I go with my pump protruding through this dress on my hip? That’s impractical as I need to get access to my pump during the evening for the delightfully ‘carbatrocious’ counting and working out of insulin requirements for the buffet food. Not to mention the foreseeable correction doses that will be required.
I think my best option is to clip my pump to my good old dependable bra where it won’t be noticed, won’t miss-shape my dress and I can get access to it. Oh how I wish I had a Harry Potter invisibility cloak for my pump at times like these! I do have a remote control for my pump but I’m the sort of person that likes to see and be in control of what I’m doing especially while programming my pump. So even though I have the ability to bolus insulin for food via this remote I rarely use it as I find I trust myself more than a remote control device. I often wonder if other people use these remotes?
I wore my pump attached to my bra in my sisters wedding when I was Maid of Honour and it worked out well with my bridesmaid dress. I partied, I danced, I ate and enjoyed a beverage or two while being able to access my pump when I needed too. It’s a truth universally acknowledged or at least with my family and friends that I even did a wedding toast to my sister and brother in law starting with a spoken speech from the introduction to Pride and Prejudice and finishing with singing Billy Idols ‘White Wedding’ with my own unique adapted wording to accommodate my sister, after all it was a nice day for a white wedding and she is my little sister…..
Yes that’s me decided on where to wear my pump this evening. My pump accompanies me everywhere I go regardless of the clothes I wear. And if the light on it starts flashing through my dress well I’ll fit in nicely on the dance floor with the other flashing disco lights then won’t I. And if it starts to vibrate in my bra then at least it will open up a topic of conversation if I got lost for words which rarely happens. A conversation starter indeed! Now what colour and more importantly size handbag do I take? Now that’s another blog for carrying diabetes supplies around with me as well everywhere I go…..

Fundraising

For this years Diabetes UK Big Collection weekend 13th-15th June I took part at a local Tesco store. My daughter and two of her friends joined me wearing blue crazy hair, standing for three hours with collection buckets in hand! Yes I managed to get three teenagers to participate alongside me and their mobile phones appeared once or twice but the buckets became too heavy to hold to check mobile notifications at the same time!
The first few minutes were a little daunting but we soon got into the swing of things. I was astounded by the friendliness, generosity and willing participation of the customers and staff at the store. People of all ages got involved. They asked questions about diabetes and shared their own personal stories about themselves and family members living with diabetes. One lady even bought us all a drink from inside the store as well as donating to the bucket I held! I also talked freely, shared my stories and enjoyed every second ( my feet may disagree there though! ) it’s quite a thing standing there but the people there were great. We were raising money and awareness and people were openly talking about diabetes.
The buckets grew heavier and heavier as the hours passed. It was a wonderful experience knowing I was helping to make a difference by raising money for diabetes.
I received a wonderfully informative email from the coordinator a few days after the event had finished stating that a total of £1200.35 had been raised at that Tesco store during that weekend! Apparently that total was £200 more than last time there! I felt proud to have taken part in helping raise that amount. I felt proud of all the generous people that contributed to those buckets with coins and even notes and of everyone else that took part in fundraising that weekend all over the country!
Making a difference is quite an achievement! Raising both money and awareness is vitally important for everyone touched by diabetes. It will help to change our future and if collections such as these and of all the other charities and organisations involved continue to increase and prosper then maybe just maybe the repetitive 10 year cure will come sooner! For me personally a cure is the ultimate goal.

Artificially Alive???

Take away my insulin supply and basically I’m a dead woman walking/writing….so does that make me artificially alive? Without it I wouldn’t be here would I. I googled the question ‘how long can a person with diabetes ( male or female the gender isn’t an issue for once! ) stay alive without insulin?’ A matter of a few days depending on the body and it’s capability to burn fat which leads to the production of ketones. The blood becomes acidic and once reaches a dangerous level it’s time to phone the funeral directors. I shudder at the thought and it makes me appreciate my insulin, my pump and injections. Reading the answers makes everything more real or surreal whatever way you choose to think about it. My insulin is my kryptonite.
Why would I think of this? Well it does creep into my mind from time to time. It’s a real enough thought to have. I mean what if I suddenly crawled out of a plane wreckage and found myself on a ‘Lost’ Island ? Would I be grateful to have survived .. Yes I would until I realise I only have one spare insulin vial with me and then think hang on where’s my bag gone…Or what if I was kidnapped or held in a hostage situation at for example the Nakatomi building. What if a character off the film ‘Crank’ took my insulin pump away to fuel his adrenaline need ! Series and films such as Lost, 24 and Die Hard make me wonder about this. Also I wonder where the Diabetic character is ? Guess the writer presumed the actor/actress wouldn’t want a short part! I do recall the part in Patriot Games where Harrison Fords wife is performing a vitrectomy operation on a patient so guess that patient character was diabetic and had diabetic retinopathy although this was never stated but it was a short part…
In and out when I was using multiple daily injections I accidentally left my insulin at home but was lucky enough to be able to return for it. I’ve even showered and left the house and not reconnected my insulin pump due to rushing and while walking to the bus stop I realise oh my god Kate your pump!! Fast sprint back home! Yippee ki-yay indeed! (That happened once but only once! so far anyway….) There have been occasions where my pump cannula has become blocked or kinked and within seconds there is no insulin delivery. That’s a horror film moment I know!
After 33 years of Diabetes I can guarantee every time I go somewhere with my mum she still checks I have my insulin with me! This will never change as she cares loves and worries about me and I’m secretly gratefully annoyed with a smile that she never fails to ask. I don’t admit that much so if your reading this mum please ignore the last sentence 🙂
So everyday of my life I make sure my insulin is with me and I always have spares. There are spares in my handbag and in fridges at family members houses, basically anywhere I can leave a spare I do. Be prepared for any event and if by some exceptional bad luck a kidnapping or hostage situation occurs hopefully Spielberg will sort the ending. Or maybe Superman, Indiana Jones, Flash Gordon, Jack Bauer or some such hero will save the day! Or if I was locked in a panic room then I hope Jodie Foster is locked in with me! But out of preference I would prefer Kiefer Sutherland with events In real time…

Ouch!!

Today I tested my blood sugar and it bloody well hurt! Literally bloody and painful. Usually when I test I don’t feel anything or at least don’t take any notice of it anymore. My fingertips have become almost immune to the precise and calculating action of the finger pricking device that draws blood from them. Numb fingertips jacketed in hard coarse skin after decades of testing my blood sugars. To manage my diabetes I have to test my blood sugars everyday. Every time before I eat something, two hours after I eat, before and after exercise, during illness…all the time!
Today I used my little finger on my left hand. It’s pretty used to sacrificing itself for a blood test but it did quiver slightly while wishing for a different finger to takes its place instead. I decided and insisted that it was this littles fingers turn this time. Shhh it will only take a second it won’t hurt …click! I froze as the plunger clicked and I suddenly felt the pain. I actually held my breath and stamped my poor foot in exasperation screaming “ouch” in my head. A little fountain appeared on the tip of my finger. I hadn’t wanted to paint the ceiling today! I smothered it with a tissue and waited for the blood to stop. The pain had vanished by now. I pressed it to check but still it bled so I smothered it with more tissue again until it ceased oozing.
Nice I thought I only wanted a small amount of blood to put on the test strip but the result on the tissue was enough to feed a baby vampires thirst! Thankfully I hadn’t used my thumb or Count Dracula may have paid me a visit! I use tissue after testing to wipe away the blood but I will admit I do have my KFC moments (finger licking good) well if I haven’t got a tissue handy …
Sometimes my fingertips bleed excessively sometimes I have to click the plunger twice and squeeze real hard to get any blood out. It amazes me how I achieved Grade 8 violin during my school years with fingers covered in tiny holes from testing my blood sugars. Pressing my fingers onto those violin strings really did hurt in and out from this and performing pizzicato whilst plucking the strings became a ‘painintheartzo’ at times!
How many blood sugar tests have my fingers and thumbs endured I wonder? How many holes are there ? If I estimate 6 tests a day over 33 years that’s 72,270 clicks of the device! However I know the real true total is higher as if I’m ill I test more frequently, I test after highs and lows and keep testing till I’m sure my blood sugar has stabilised. When I think back to the time I was pregnant I was testing neurotically. A bleeding pain in the fingers but a necessary and vital one at that!
It always stuns me when it hurts though because I’m so used to doing it. For now my little finger on my left hand can relax as it’s turn is over and the other fingers and thumbs get to take their turn. That is until the next time it’s the little left fingers turn again…….