I think Ds should get 3 year driving renewals for them and everyone else.

Drivers are in general a category of people I have little trust for. Speed limits seem like vague notions and the highway code something that occurs occasionally.Sure most of the time the country ticks on with no accidents but I can see what speed my parents and friends are going at and I can work out others from it. I can see where rules are broken and I can see when even the police ignores the rules. Get off your phone. Wear your seatbelt. Strap in your kids. I am sick of being thrown forward in buses, cars and whatever else. Personally, I do not drive. My anxiety is too much of an issue for me to cope and when I did take lessons I felt like I was a child in an adult swimming pool. Everything was just too big and too far away.

Half of drivers are horrific. They speed, they don’t indicate, they cut people off, they park in the wrong places, they park in ways that take up multiple spaces, they don’t drive in the right gear, they forget zebra crossings are not a damn choice here and let’s not get started on motorways. Paranoia about petrol consumption has half going too fast and half going too slow and cars making horrific noises as they are driven incorrectly to make up the balance. Too many passed their driving tests eons ago and seem oblivious to the change in the rules never mind anything else. Seeing old people driving sends me into a state of panic.

Then we bring diabetes into the equation. Diabetes have to get their licence renewed way more often than non diabetics. Our licences will only last three years while the majority of people will have theirs for a decade. Many diabetics feel this is unfair but I don’t. I think it is important to keep a closer eye on many health conditions and type one is absolutely one of them.

There are enough bellends on the roads without adding diabetics that can’t read road signs.

I mean, we all know a clinic visit could result in drops in our eyes and that our eye clinic tests could be even more likely. How many of you still drive there? Are you really planning to leave your car there overnight and get someone to pick it up are you working on the ‘it is the only way I can’ so will just be careful driving home? If that is how so many treat official visits then how are we truly treating driving?

If anything our sorts of checks need to come into place for more conditions. Could someone with epilepsy take a fit? Could someone without anxiety take a panic attack? Could someone with migraines become suddenly unable to control their car? Checks don’t happen for no reason. It costs the government money too.

You could be driving at 70mph in a machine that weighs how much exactly and oh, could explode. Making sure you are safe to be driving said machine is pretty important in my book. Site can deteriorate in anyone and not be noticed. That is why we test our eyes every year if we wear glasses in Scotland and don’t get charged. Most people I know who get a new prescription never even realised that they needed it. How much were they not seeing before that test?

I remember when my hba1c was high. I could never fully concentrate. The whole world was in a sort of haze. That happened within a year. A YEAR. SO people want us to wait TEN to see if diabetics are safe? It just sounds crazy to me. Then there were the years where my hba1c was fine but I swing from hyper to hypo and slept 18 hours a day. I had no business behind a wheel. I don’t think we can honestly rely on diabetics to be honest and even beyond that I don’t think people are always aware of how much their condition has deteriorated and what that means. I also don’t think it is fair for the Drs to be lumped with making sure a person can drive on top of everything else. Sure, a diabetic could lie on the forms but I’d like to think we would not stoop that low at least.

It isn’t just about ‘us’. It is also about everyone around us too. It is the passengers we have in cars, the people crossing roads we drive on and the other cars around us all across the country. In some conditions licences are revoked too late. In some cases people should have a licence that they should have. Those are pathetic and horrific ways of deflecting from the topic at hand. Basically you are saying ‘well he could be dangerous too’. Yeah but so could we. So let’s check that we are not. Drop the price of a type ones’s licence to a third of a regular one because we renew it three times as often. If you are safe to drive you will get your licence back. If you are not safe to drive yes you will lose your licence and the majority of the time that is for a good reason. Just because someone else that shouldn’t have their licence keeps theirs does not mean someone who is diabetic and shouldn’t have theirs gets to keep it too.

Yes to Students

Students in practical situations. When it comes to health it will mostly be awkward. Unless you are me and just don’t give a …well. It will never be fun or cool but the fact is those with health issues will not get more professionals if they do not let students in to look in on appointments. I understand that some friends have faced three or four students and that feels crowded and too much but most are asked if they would mind one.

It is important to say yes.

Students need to see the best and yes the worst of diabetic patients. They need to see diabetics with good results and dairies and they need to see those who turn up because they are asked and do nothing and have already lost a limb. They need to see a Dr encouraging a patient to do things and yes they need to see the Dr crumble once the patient leave the room.

I have never said no. The idea has always boggled my mind. This person wants to be my Doctor or nurse and I have always been aware of how understaffed my departments are. If anything bothers me about having students in my appointments it is how uncomfortable and apologetic they look. Students will not tell anyone. The most exposure we get is them maybe talking in their classes without naming us.

I would never kick a student out of my appointment. Personally I have always found that they sit quietly and just take notes. A few times a Dr has asked if I would mind if the student asked questions. Again. I always say yes. They rarely ask one or two. They look guilty doing so. I hate that. I would love students to ask me more questions. I’d happy spend another half hour with them being questioned if they would like to do so.

Think about if we didn’t let students in. Doctors would rock up to clinic with no idea how to make patients feel at ease, no idea how to have banter. They would basically be robots. They would parrot what their textbooks told them. They would be no use to anyone.

Students need to see all sort of diabetics. They need to see good results, bad results, nerve damage, eye damage and those who have lost limbs. They need to see how to talk to these people, how to help those people and yes how to be hard on these people.

Where else will they learn?

They cannot and will not graduate without enough time watching and learning. We complain, as diabetics, that we lack help. We only hurt ourselves by not letting the next generation learn.

My diabetic HCPs are epic and I hate that they get attacked for doing their best.

Diabetic Health Care Professionals get bashed left right and centre and I am sick and tired of it. I’m sick of type one diabetics screaming for all the newest tech that appears to be so easy to get in the United States while failing to realise that is because they work on an insurance system and said diabetics are probably paying an arm and a leg to get stuff. While one is happy with their GCM the diabetic down the block is crying down the phone pleading for more insulin that their insurance company insist they don’t need until date X of the month. Diabetics eat up a huge part of the NHS budget and there is no point denying that. We are big part of the population but still, we munch those numbers. Constant hormone replacement therapy to make up for organ failure is an expensive business and we pay very little in National Insurance for what we get in return. Our Health Care professionals are working damn hard to get the best for us.

I have not always liked my Doctors. In fact as a child there was one I utterly despised. She had a terrible habit of talking to my parents about my diabetes while I sat there thinking ‘…but I’m the diabetic’. When my dawn phenomenon kicked in she accused me of lying about test results because on paper she could not work out why the rise was happening. However, for the most part the Doctors have been awesome. Other than the one they have been very happy to accept that all diabetics are different and just because something is happening to me that they have not seen before does not mean that I am lying about anything or not trying hard enough. If I am particularly struggling I tend to ask to see the same Doctor, as in my clinic you don’t see ‘your’ Endo. Once you are weighed and had your bloods taken your file is placed in a pile and you get whichever Doctor picks it up. However, if you wish for a specific Doctor a sticky note can be put on it and your file put to the side. You have to accept that may mean others behind you in the pile jump you for an appointment. When these appointments take an average of four hours that can be irksome.

As a youngster I loved a South African doctor because he would always listen to me and understood me when I was coming out of my rebel stage of not doing tests or taking injections. I was ten years old and my mum was depressed. She stared at walls for most of the day and didn’t answer my questions about what insulin I should take. I decided I’d do it all myself and got myself into a right faff. He understood when I said that after nearly of year of not following a routine it was hard to remember to do it again and harder still when my results never felt good enough. My parents couldn’t be there every second of the day. Doctors never said that but when you are getting a weight chart put under your nose and seeing you’re still under it and the Doctor wants you to see a nutritionist you can tell they are disappointed you’re not doing better. He listened and made sure that every ‘we still need to do this’ was accompanied with a ‘well done for doing that’. I was gutted when he returned to South Africa. I can still remember his warm smile. I would love to remember his name and send him an email or something to let him know how vital he was for me getting my head back in the game.

As a teen the new team of Doctors were fantastic. They believed me when I said I was trying and set me mini-goals. They didn’t ask me to turn around a HBA1c of 13 to a 7 in 6 months. They hoped for 11. I know I was frustrating. I had protein in my urine before they realised that most teens do and they feared another organ was giving up. I went through test upon test and they shared notes and looked baffled. I was the first teen in my clinic to be put on lantus because they believed in my ability to do it, enter a whole new way of doing MDI. Slowly I turned into a diabetic with the perfect HBA1c and apart from the dawn phenomenon I was content. The DP was not nearly as bad as it is now and the Doctors settled for a number under 13 at breakfast because every other number was fine. That is why I worry when I see diabetics frantically trying to get a number of 4.0 upon waking. That is far too low for my doctors. I was never asked to produce numbers that would occur in a non-diabetic cause my team understand I AM diabetic.

My team always value my opinion. As a fourteen year old I went to them and said ‘I want a different sort of snack at break time and my novorapid isn’t working long enough to cope. Is there something else?’. Humulin appeared and it took a lot of tweaking but nurses were always on the other end of the line. My team are patient and understanding when I used to be terrified at the idea of ‘cut my insulin by HOW MUCH?!’. They reassured me, don’t think of the number. It is a %. We would rather you higher than hypo. Call every day if you need to. My team are always happy when I say ‘yeah I see that pattern. I know what to do. No carb meal/overnight test ect.’ They also trust that I know how much I need to alter my levels in different seasons. They respect the fact the specialist in my diabetes is me in regards to high my body reacts to certain things.

Getting a diagnosis of the dawn phenomenon and hypothyroidism was hard and difficult and if there was any moment I would have turned on my team it was then. They had no answers and I was bursting with questions. I am glad they were honest and said ‘I don’t know’ when the tests came back negative for problems, when my THS levels were still lower to be diagnosed, when lantus by the bucket load wasn’t pinning my dawn phenomenon back anymore. They wrote letters to help me leave university and to get benefits. Nurse answered emails after emails if only to reassure me that I was doing the best that I could. I had Doctors say to phone back in two days. They were going to gather all the Doctors together to look at my notes. Finally they said insulin pump and then they said 2 years. I was devastated.

My team went to the parliament and demanded my hospital get more funding. They threw their toys out of the pram in the most professional way and cut my wait to 18 months. They had the money but they needed the nurses. They sat and carefully weighed up whether to pull the nurses from more day to day care to run pump clinics and if the nurses could even cope with that many new pumpers asking questions and decided the diabetics were more important.

My team always look worn out and exhausted and more often than not they face diabetics demanding they ‘fix’ them while the diabetic does very little to help themselves. Those hard working diabetics on twitter and on forums are not the majority. They must be so damn frustrated with the diabetics that don’t test, don’t carb count, don’t try. But they tell the Doctors it is their fault when the pain starts in their finger tips and toes. I salute the nurses who are on call for 24 hours a day in those first days of pumping. I salute the Drs who rush to A&E and Intensive Care to try and save a diabetic’s life. I salute the Drs who are part of the teen clinic in Livingstone so drive from Sick Kid’s in Edinburgh once a week to hold clinics alongside the adult Drs. I salute every member of staff that can see that they are slowly but surely losing a patient and fight tooth and nail to bring them back while the paper pushers tell them no no no no and no when they need new life saving tech.

My test results did not say hypothyroidism. My body did. It was my endo that I went to see, out of clinic hours, making them leave their offices in the hospital to come down to the clinic area. They diagnosed me after looking at my blood’s and symptoms and despite it not being diabetics they wrote the letter to my GP telling him that you WILL give this patient levothyroxin and test their levels in 6 weeks. I don’t think Endo’s write many prescriptions. Leaving with one was odd but it turned my life around. I know that if I need them I can speak to an Endo within 24 hours, not just a nurse. That is so reassuring.

I really salute those in diabetic care brave enough to appear on social media. Social media tends to be dominated by diabetics who are trying their very best. Many are frustrated at the lack of care they receive and that is understandable. We need more people getting into diabetic care. Seriously, feet checkers. They are always missing. Yet, five minutes on twitter and I would never ever want to do such a job. It doesn’t look rewarding. It looks like you will always be told you are not doing good enough, even if you prescribe the insulin that changes a life around or sign off on equipment that will change everything. ‘but you didn’t’ is a shadow that seems to loom over the profession and it needs to stop.

Sure, say ‘there was no nurse to do X’, I was frustrated my Dr said ‘Y’. But does it really take that long to say ‘Dr said I did a good job!’, ‘got through clinic quicker this time yaaas!’ or ‘so glad i got signed up for a pump by dr x’. Everything is politics. Drs are held back by rules but never for a second think they don’t do their hardest every damn day. People talk of lost limbs and shooting nerve pain. They don’t talk about healthy babies and bright cheeks on previously ill babies or happy children finally having their classmates understand because their nurse went into their school and explained. Our Drs and nurses are still students. Things change every day. They go on courses to learn what a new insulin does or how to work a new pump. They try their best to keep up. They try their best to save us.

Let’s try our best to remember that.

Karen. Emma. Eilidh. James. Anna. Maureen. Liz. Susan. The Doctors I can’t remember the names of and the girls who draw the blood.

Thanks. I am me because of you.

The NovoVirus and Death’s Latest Attempt to Snatch the Gremlin

my pump and my medicine

The illness post. I was off before with a sore throat and being sick but I thought it was just a twenty-four hour thing and brushed it off and returned to work. A few days later my boss went home early with the same symptoms. A day after that I started to feel off. If I ate I didn’t want as much as usual and was left feeling uncomfortable after a meal. My throat started to get sore too but I soldiered on. Then on Friday I woke up feeling horrendous. Luckily it was my day off so I was able to stay in bed until the last moment before getting up to prepare to go to a friend’s leaving do. Since starting work I have missed all the night’s out due to working the next day or other plans so with being off I was determined to at least go for a while and then come home to sleep before work the next day. My throat hurt and I felt sick but I soldiered on while having two horrendous hypos. I just could not get my blood sugars up at all so the amount of sugar I packed into myself to fix that had me feeling rotten and therefore I ignored all the other symptoms creeping up on me thinking it was just the hypos. I made sure to eat a decent meal but I had to force that down and I only had a couple of drinks with juice mixed in. It became obvious I was getting ill fast.

My first bus had the decency to just not bother turning up as does sometimes happen which made me feel anxious as it meant the next was bus the last. I got steadily sicker until I found myself sick at the bus stop. Thankfully there were no witnesses but I was determined no one find out. I knew what they would say – that I drank too much. I knew that was not the case. Three glasses of wine is not enough to put me anything past tipsy and they were spaced out with other drinks and food as I said. I knew I had to get home to bed as my throat was already feeling more swollen and sore. I explained to my parents that I had taken the large bottle of water from the fridge for that reason and climbed into bed and that is when the nightmare really began.

I threw up at half past 2 on the Saturday night and proceeded to throw up every couple of hours on average for the next 52. I tried to call for help to get a glass of water or something but the only help that came was in the form of my dogs who sat by my side and pressed their noses to my ribs when I eased up from the bowl. By this time my head was pounding and my face felt like it was in a vice. My muscles were starting to ache in my chest from throwing up and my knees were protesting the constant up and down on the linoleum floor. By the morning I was a right mess but I was met by the usual sceptical look that I was ill at all. I could literally cough a lung at my mother’s foot and she would still take a moment to decide if I was ‘at it’. A lingering legacy of my ill ridden teenage years and not being diagnosed is a constant distrust that I am as unwell as I say and not just ‘lazy’. Of course, that is never said anymore. It doesn’t have to be. I don’t even think she realises she does it anymore. The more I was sick the more my muscles hurt from the effort. Now my arms and shoulders were going and my bottom and legs and well just everything hurt really. So of course my mother decided this was the perfect time to clean the top floor of the house and my room. So, being sick every few hours, unable to eat and swimming in ketones I was kicked out of my bed and sent downstairs. I was now feverish and rolling around the sofa groaning while pressing a bottle of water to my head. Comfort never came.

What happened next is mostly a mystery. I know I was in my room at 2pm. I know I kept being sick and that I could hardly stand myself but I don’t remember anything else until 9pm when I was croaking for a glass of water and my dad appeared to give me one. I was confused that he was home and that he was in his pajamas. I knew that if I was going to keep being sick I had to at least drink so that there was something to come up. If there was nothing, bile came or I just retched and that hurt more than being sick as my innards scrambled for something to get rid of. My blood sugars climbed the whole time and though I did not realise it at the time my constant wriggling around to try and find some sort of relief on my muscles meant I managed to kink the cannula inserted in my side that controls my insulin pump. It had been working fine for 2 days. I became utterly delirious by midnight. I kept babbling about towels and water. My blood sugars were too high to measure and I was unable to work my pump myself in that state. At the time we thought it was working but my parents took the decision to manually inject me with insulin rather than attempt to use the pump with me. Three times I was given a glass of water and three times I spilled it all over myself. I was mortified and my parents worried I thought I had peed myself. No, I at least knew that much. In my attempts to sort my pump I exposed myself to my parents so that was lovely too.

This was the first time my parents considered the hospital and the reality that I probably had the dreaded novovirus. It is known for the winter but I always have to be awkward. We were now fighting a dangerous battle with the virus and my disease. A diabetic will dehydrate at a quicker rate than a non diabetic person will and given how sick I was being I was losing fluid fast. My attempts to keep myself hydrate probably made me more sick but I had to try and fight off the ketones, poisonous toxins the body release when blood sugars are high and not enough insulin is present to break down energy. Ketoacidosis could kill me if it set in so overnight was a joint effort of the family getting up and doing injections. While I could just about inject myself I could not hold my hands steady enough to test my blood sugars. They were terrifyingly unsteady. It did not help that in her efforts mum had turned the depth of the pricker down so it was barely getting through the scar tissue of my fingers never mind getting blood out. Overnight we injected and injected, all the while never realising the pump had kinked and wasn’t giving the background I needed. Those injections of novorapid were sure doing a hell of a job to keep me above water, just enough to mask the failure of the pump.

Sunday was mostly a haze. The only thing to really galvanize me out of my stupor was my friend Steph urgently needing my help. I stumbled my way downstairs, water in hand, hit the wall several times on the way down and fell onto the couch sideways asking my mum to get her laptop out. Txting Steph the information she needed was a herculean feat. My fingers felt like they were connected to someone else. They just didn’t go where I wanted. I settled for explaining I was ill and hoping my approximation of words made sense to her. I felt useless and cursed my immune system for yet again falling victim to something. I now recognised my previous day off as my body’s heroic stand against the virus but my health has done too much damage. It will never stand up to much, not for long. At least it tried.

I returned to by sickbed with a tea biscuit. A single tea biscuit. The best way to drive ketones from the body is to obviously lower the blood sugar but also to get food into the system. I had high hopes for my tea biscuit. It took me nearly half an hour to eat it and less than an hour after that to throw it up again. So much for my tea biscuit. I lay in bed and the hours passed as I writhed and moaned and wished the pain would just end. My heart felt like it was going to explode out of my chest. I could feel the skin moving, I could hear it in my ears. My coughing and vomiting meant I had red bruises across my chest and ribs from the force of it all. Bumps covered my joints. I hated going to the toilet because sitting was just agony and getting up even worse. My blood sugar soared again and again we thought of the hospital. I was in so much pain and I couldn’t see a way out. My parents nipped out to the shops for essentials and I carefully tried to change my insulin pump so it was fresh in hospital and found my dad was right, all my wriggling had upset the connection. I set up a new one and set myself flooding with insulin. Then I set my trembling hands to my phone to google the virus. I used my left hand to hold my right index finger as steady as I could and poked in enough letters for google to work out my request. It quickly cancelled my hope for hospital help. Patients with the novovirus are advised to avoid everyone and anyone in case they cause an outbreak. So much for my hydrating drip. Imagine wanting a drip? It would be unlikely I would be admitted unless my ketoacidosis went proper off the rails. That would probably mean a direct route to intensive care and I had no intensions of going back there. I had already told mum I would only go it straight to a ward because I didn’t want to sit and infect people in A&E…or sit and be sick there for that matter but that plan was up in dust. It was up to us.

All the time my mum’s type one diabetes and her impending holiday loomed in my mind. I dreaded giving it to her and ruining everything. I shoved her away when really I wanted her the most.

As my pump came back online my bloods dropped. I’m still battling to keep them in the teens with ridiculous amounts of insulin but so far it is working. Around this time I also, thankfully, stopped being sick. A bath suddenly seemed like a possible idea. It was a scary idea. What if I was sick and had to spew over the side? Ew. What if I could not get out because I was in so much pain? Mortifying. What if the hot water just made things hurt more? Oh. I decided I had already flashed my breasts at everyone so if I could at least cover my privates then I was ok. The first hurdle was the realisation that there was just no way I was going to be able to bend into the bath, put the plunger in and turn the wee thing that holds it down for a bath. Dad was called. It took me far longer than should have been required to remove an old football top, the pump from around my neck and some bottoms. I was still not sure. I had towels all over the floor in case I was sick. One of the dogs kept peering in to make sure I was ok and then trotting off again. I felt about eighty getting into the bath. Every movement was calculated and came with a wince. Now, I have endometriosis which is agonising. It takes a lot to make me hurt. Despite my fears the water was instant relief. My muscles eased up as did my headache and the nausea. I felt not too bad for the fifteen minutes I was in but I could already feel myself start to seize up again so getting out became another saga but luckily one that remained confined to me and another of the dogs. They appeared to be on a rota while I was sick.

I continued to not eat and squirm my way uncomfortably into Monday but the sickness was clearly gone for good and the ketones left with it. Now I was officially ‘just’ sick. Test strips ran out and I ended up sharing mum’s meter and her strips. Not her pricker though because it is evil and horrific and I have no idea why she still uses it. She headed off to the Drs early on to demand emergency supplies while I spluttered my way through an order to animas for more pump supplies quicker than previously predicted too. I attempted and gave up on soup and dozed away my day. By the evening I was able to read some of a book. Before that words would blur and not make sense. My vision was impaired the whole time. Still cannot see the TV in the living room correctly. I barked and I spluttered and I felt sick and then I couldn’t sleep.

Overnight however my cough got even worse. It was so painful to cough I can’t really describe it but I was bringing up the dreaded green gunk so that green lighted me to phone the Dr and hope they would be able to give me something. For understandable reasons they were alarmed and demanded I go the surgery for more inclusive urine tests and stuff. I was not impressed. I just wanted a prescription over the phone. In my huff I declined to get dressed and put a hoodie on over my jammies and sulked down with a snood on so that all my germs were kept to me. Of course all the elderly people glowered at me for this. It was THEM I wanted to protect. This virus is dangerous enough in people my age, never mind people with other conditions, never mind nosey old goats like them.

The doctor confirmed I had a nasty version of the novo virus and an infected respiratory tract as well. Ketones home monitors would not be able to detect lingered as I wasn’t eating and there were a couple of other ‘unwell’ boxes that lit up on the big strip thing. I was praised for keeping control of my diabetes despite how close to the wire it went. My throat was not even looked at which I was miffed at but my chest was listened to and I got amoxicillin so I was happy. As many know, people are becoming far too reliant on anti-biotics and demanding them when they won’t even work. Worse, Drs were handing them over for years. As a result my personal surgery is like the pentagon. Getting anything off them is serious business so I clutched my pills proudly. I then managed to eat a bowl of soup and a roll. A whole roll. Ok it took me forty minutes but I was deliriously happy and my blood sugars were in single figures. That night was terrible because the medicine was working. I know that sounds strange. All the crap sitting in my lungs was being broken up by the amoxicillin and it wanted up and out. As previously discussed my breasts are heavy and large and prevent me lying on my back anyway but now it felt I had yet another large weight sitting there, like a unwanted third tit. Every roll from side to side was like a dull weight shifting with me. At one point I moved in an angle that meant I literally smacked myself in the face with my own boob then I had a coughing fit. I felt utterly miserable.

I’m off work, clearly and still struggling on what is day 7 of the virius. Al the guidelines say it goes after 3 max but the joys of being diabetic. I am still waddling around with tissues, hardly eating, hacking up organs and testing my blood every two hours. My fingers are utterly killing me. I’m very lucky the way I type means the pressure points don’t hit because I’m relying on the internet and my xbox for entertainment as my brain tries to peer through the fog. It is weird to think how close I came to ending up in hospital and how close it all came to spiralling out of control. It is horrible to think that something most would beat in days is going to take me into weeks. This virus has stripped me to my bones. It turned me into a helpless child. It is easily the most ill I have been in over a decade but still the idea of flirting with death as I did (delirium, bloods that high, being sick, let’s not beat around the bush) alarms those around me. It does not alarm me. I am used to it. I have stared death in the face a few times. Now, at no point did I truly go ‘I’m dying’ but my family and I had many moments of ‘we’re on the brink’, knowing that if we toppled over only lightening reflexes from the hospital and dumb luck would pull me back. It is just what diabetes is and how quickly the coin can turn. I don’t like the series but I can’t think of a better way to finish this blog.

There is only one thing we say to Death. ‘Not Today’