This year Diabetes Art moves up from the

This year Diabetes Art moves up from the Wildcard choices as we all channel our creativity with art in the broadest sense. Do some “traditional” art like drawing, painting, collage or any other craft you enjoy. Or look to the literary arts and perhaps write a d-poem or share and discuss a favorite quote. Groove to some musical arts by sharing a song that inspires you diabetes-wise, reworking some song lyrics with a d-twist, or even writing your own song. Don’t forget dramatic arts too, perhaps you can create a diabetes reality show or play. These are just a starting point today – there are no right or wrong ways to get creative!

“As you get older you will gain a bit more control over everything. Don’t let anyone, even your parents, break you. Find good people who care about you and surround yourself with just them. If you can’t find them at first, find good music and fall into it, let it hold you until they come.” ~ Davey Havok

 

Freaky Friday but with Illnesses

Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions?

I don’t know, man. This question is weird. Diabetes is a terrible disease but it is what I know. I isn’t like I only have one chronic condition either or only one autoimmune disese. I guess I would say something like coeliac disease. I can eat everything now but I grew up having to avoid certain foods so that isn’t alien to me. I guess….it isn’t like it is a lesser illness. It is a horrible illness but avoiding gluten in return for no more injections, pricks, hypos, hypers and everything diabetes throws at me? I guess coeliac is a better deal all in. I won’t try and pretend I don’t think that it is. Diabetes is one of the hardest conditions to live with mentally and physically.

Achievements

We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you’ve made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small – think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.)

Going from  DKA and a HBA1C in the teens to a HBA1c of 7.0%. It took years but I did it and no matter how bad things are now I still have that achievement and it is a driving force in my life now. I know that with the right tools I can wrestle this disease into submission because I have done it before and I did it as a teenager which is when diabetes is arguably at its most volatile.
I left hospital at 10 a mess. I wasn’t taking all my injections. I wasn’t testing my blood. My mother was dealing with mental illness that meant she wasn’t watching me as closely as she had before and I had grown up with diabetes, I had lived with it for 4 years, I thought I could handle it myself.

They started watching me but I was at school and lunch times were all up to me. I didn’t test. I guessed insulin. I did it all wrong. I wanted to be better but I’d forget my blood kit trying to fit all my, ya know, school stuff into my bad and I had gone so long not testing that it really didn’t occur to me anymore. It took me years to drill testing back into my daily routine, for it to be natural again. I wanted to be like the other kids and not diabetic and at the same time I wanted to not feel sick all the time and it was a mental implosion. I should have seen a shrink but I didn’t and getting better took me a good four years by the end of things but I did it. I pushed my parents away and did it myself. The more they tried to tell me to do things the less I did them because I very much felt ‘what will I do when they are not here? I need to do this myself. Leave me alone I can do it’ ect. When I put my mind to it the knowing what insulin to take and when to take it was easy for me. I just had to pay attention. So my parents, after a couple of years of crying and arguments and watching me over my shoulder when they WERE around let me do it. I was fourteen and once left alone I felt I could do it for myself and I did. Within months I had my HBA1c down to 7% and felt awesome.

I will take my parent’s advice now and have since I was 14 or 15 but I’ve ignored a lot of it too and done just fine. At the end of the day it is my disease so I dealt with it. If my parents kept trying to control me I would probably have spent the last 10 years in and out of A&E.

Day 3 – Memorable Diabetes Day – Being Diagnosed.

day 3 – Today we’re going to share our most memorable diabetes day.

It has to be the day that I was diagnosed. The other big days diabetes wise were days in DKA so I don’t really remember them so they are not memorable to me if that makes sense. The day I was diagnosed was weird. I didn’t have a dramatic collapse and rush to hospital that many type 1 diabetics experience. My mother is diabetic and my grandmother raised two diabetics so they saw the signs of my drinking like a fish. I hadn’t actually lost all that much weight. The only symptom I was showing was the drinking drinking drinking drinking and drinking some more. I wasn’t worried when I was taken to the doctor’s. I didn’t understand why I was going cause I didn’t think I was sick. I was only six years old so the drinking didn’t seem like a big deal.

I went in and obviously my mum explained things but I don’t remember that. The first thing I remember is being told the doctor needed a urine sample and me not needing  a wee. I was taken to the corner shop for a drink and I wasn’t allowed normal ribena; it had to be sugar free and I remember it tasted utterly horrific. I can remember saying I didn’t like it, I didn’t want it, and crying and being told I had to drink it. My mum didn’t have a lot of money so she couldn’t get me something else. I remember a lot of being adamant I didn’t need a wee and getting strange looks from passers by and then I finally went to the toilet and there was more trauma of trying to pee into one of those cardboard cup things. Hauled back into the doctor’s and he did a stick in the pee thing and then demanded my mother take me to Sick Kids Children’s hospital in Edinburgh because he suspected I was diabetic. No one was in that great of a hurry. That is one thing that sticks out and reminds me how lucky I was. I wasn’t that deep into things because my mum caught on.

I remember being told we had to go to hospital because I might be diabetic but that we had to wait on my dad. That stood out a lot. My parents didn’t talk or get on well after their divorce. The fact that my mother would voluntarily deal with my dad was strange. He got the bus home from his work and then my mum drove us to hospital and it was during the journey I started to realise things must be serious because both parents were there and talking and not fighting and stuff.

I don’t remember arriving but I remember when the blood tests were to happen. Some genius decided to let a student nurse practice her needlework on a six year old. I was injected 6 times with her failing to find a vein. The needles were huge; I was scared. It sticks out vividly for the pain but also because my parents worked together for the only time I remember. They didn’t fight, were civil, and all their focus were on me as they pinned me to the bed for the nurse to stab m again. Eventually a more experienced nurse stepped in and took the blood first time. Now at all other times in hospital and all other times since nurses have had no issues getting blood out of my arm. Trauma for no reason I say.

I don’t remember being told I was diabetic. I don’t remember my first injection. I have vague memories of stabbing an orange but being very ‘yeah yeah mum does this she can show me’ and stuff. I thought it was kind of cool. I was going to be like mum and now I’d get a fancy compartment in the fridge all to myself for my diabetic stuff. My biggest upset upon diagnosis was when I realised I wasn’t going to be taking the same insulins as my mum. She had blue and yellow bottles (actrapid was yellow but I don’t know what the blue was anymore) and I was given green and red and I thought hers were cooler. (insulartard and something). A doctor came to explain diabetes to me and I spent a lot of time saying I know that and being told not be rude by my mother. So yeah, that is my most memorable diabetes day and though I still shudder at the memory of all those stabs I realise I was very lucky in the end to not actually end up in DKA before I was diagnosed. I think I was only in a couple of days cause obviously mum knew what she was doing. I was a rebel before we even left the hospital. Doc said I wasn’t allowed strawberry yogurts anymore as they were too sweet and mum said that was rubbish and we’d pick some up on the way home. 😛

Dblog 2 – Parents Out, Kids In for parts of appointments

Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) – get creative!! What are you trying to change and what have you experienced that makes you want this change?

This is kind of strange for me because I have written petitions and had them all fail I might add. They were all diabetes related and about getting my my insulin pump but NHS Scotland is getting a lot more funding these days. I know the NHS in the rest of the UK is being butchered but we’re protected from that by having a sensible (sometimes) government when it comes to health in Edinburgh. Don’t tell them I said that. They might get ideas.

It is hard to think. In many ways I’m luck with my diabetes care. If I tell my doctor I need more strips I get them. If I use more insulin in a month and go back for more he doesn’t question it. He is rather diabetes savvy so that helps and I don’t deal with one endo long enough to develop issue  with them.

Having a wee think, I think I shall get my radical side out. I would petition the NHS for teenage diabetics to have a time in their appointments where their parents are not present. I’ve brought up this subject in my blog before but teenagers have this tendency to lie a lot about sex, periods and their emotions in front of their parents yet all these things have huge impacts on their diabetes control. I’m not saying kick parents out all together once you are packed off to the teen clinics, I’m saying have five minutes at the end where the ‘what we’re doing now’ part is agreed that the doctor can ask the questions like ‘are your periods regular?’, ‘are you suffering form erectile dysfunction?’ and the one most teens are likely to lie about ‘are you sexually active?’ . Some say they are only children but they are children living with a very serious disease and omitting information has long lasting side effects.

I know because I liked myself blue about my periods and maybe if I hadn’t I would have had my endomitriosis discovered a lot sooner, and more importantly if I was honest about how I felt I would have got an earlier diagnosis of anxiety and depression thus getting the help I need. That help would have allowed me to better manage my diabetes in stressful situations like my exams. If a young diabetic already feels like a burden to their parents because of their illness or already resents the impact diabetes has on their lives they are less likely to admit to something else being abnormal or their feelings. It is hard enough to do such things without parents present. 

If something is found that the parent needs to know about then of course bring them back in and talk it out but just because a person is not of age doesn’t mean they are less of a person and less deserving of patient to doctor confidentiality in some situations.

Diabetic Blog Week 1

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see? 

I wish they could see the really bad days so they realise that yes they are that bad. I wish they could see the greasy haired, purple eyed, gaunt and exhausted me that can’t muster the energy to put clothes on because my stomach won’t stop churning and my head won’t stop spinning. I just wish they could observe normal every day things that are made harder because you’re that second slower, that wee bit sluggish. A blood sugar level can be great and a diabetic can still feel like shit and that is the sort of thing that I wish the health professionals could really see. Instead it feels like they very much think diabetics can do everything everyone else can ALL the time and we just need to do we as we’re told and trot off. It isn’t like that. Sometimes you can do everything and more and some-days you’re that bit sluggish.

I wish they could see the test strips that follow me around my life and constantly fill the bottom of bags and feel that embarrassed feeling that creeps up every time I see a used strip that has escaped the bin. I wish they could see me shipping and seeing beautiful bags and walking past because I would never be able to fit my purse and testing kit into it. I wish they could feel that bitter feeling. I wish they could see the arguments about taking up too much space with supplies, getting my stuff mixed up with mum’s and the policing I face every day over where I happen to have left a piece of my diabetes kit. I wish they could feel that shame and anger. I wish they could physically see me trying to fill in a blood glucose diary and being brought to tears at how helpless I feel at the numbers none of us can fix right now. I wish they could see me try and fail to read a book. I wish they could see me get confused at what is happening in a TV show.  I wish they could see me getting upset because I need to walk my dog but the rules say don’t move I’m too high. I wish they could see the abuse I take from family saying I’m too uptight when I’m just trying to do what I’m told.  I wish they could see just how much SPACE in my life is taking up diabetic STUFF like pens, kits, diaries, tablets, insulin, needles, lancets, strips for this and that and the next thing and then glucose tabs and lucozade and never ending trails of THINGS that have to be remembered.

I wish they could see that it isn’t always possible to have someone with you when you’re hypo and sometimes they just leave you anyway because they think you ‘should’ be able to handle it. Sometimes you’re not in a good enough mindset to stop eating after 20g of carbs. You can’t think, you can’t process, you can’t rationalise their rules. I wish they could see someone trying to function after a blood sugar of 27. I wish they could see someone trying to work after experiencing that.

As for what I don’t want them to see. I guess I don’t want them to see that I don’t change the needle on my pen every single time because even that bigger bag I bought aint big enough for everything I ‘should’ be carrying about. The rest is open. Sometimes I’m a diabetic mess. A lot of the time it stems from how health professionals have acted in the past and the mentality they imposed on their patients. I want them to see that. I want them to see the results of their own stupidity. I want them to see people freaking out over blood tests and thinking one high is the end of a leg because that is what they were told growing up. I want them to see people crying in doctor’s offices because the strain of being a diabetic has caused something in their mind to give and now they are anxious, depressed or something else. Health professionals like seeing where they did things right, blaming patients for not following their rules when it goes wrong, and frankly it is time for them to have to confront the consequences of THEIR fuck ups.

like a domino


it is weird how one thing can just set you off. it is the time of the year where university students hand in their dissertations and a lot of people i went to school with are doing so and posting pictures of them with said dissertations on facebook. i’m finding it really hard to deal with all of that. i’m proud of my friends and happy for them but it reminds me that if i wasn’t ill i would be finished with university by now too. it is a kick in the teeth i guess, a reminder of all the things i used to be able to do and everything my health is keeping me from. my friends reacted well to me mentioning this on fb and encouraged me that i will make it in my own time and it isn’t a race and such but it still hurts. i just hate being stuck in this continuous cycle of nausea and exhaustion and knowing there i is nothing i can do about it but hold on.