Friday, 14 June 2013

diabetes week - research

i thought i'd write a bit about how research has helped me in honour of diabetes week. As most of my readers know i was diagnosed as a type 1 diabetic at the age of 2 in 1997. I was diagnosed before the basal insulins lantus (approved in 2000) and levemir (2004 from what i could find) had even been invented. I was on the free mixing regime with syringes but i was lucky to even have insulin thanks to the work and research of  many many scientists who spent much of the late 19th and early 20th century studying diabetes mellitus. Paul Langerhans found the islets of langerhans in 1869 , the cells that produced insulin but it wasn't until in 1901 Eugene Lindsay Opie discovered a clear link between the pancreas and blood glucose regulation then 20 years after this Banting , inspired by the work of Opie amongst others,  and Charles Best extracted and purified insulin as a medication. This was the fate of children diagnosed with diabetes before 1921... 



At best a child would survive a year on the starvation diet. it was inevitable the child would die from it. There is a remarkable story of when insulin was first discovered children diagnosed with diabetes were kept on wards of up to 50 most of them comatose and families waiting for their child to die, when insulin was first purified and extracted Banting, Best and Collip went round injecting children with the insulin as they got to the last children the first were waking up from a coma. this was the same child in the previous picture after insulin treatment.


Thanks to researchers our means of testing bloodsugar has gone from testing sugar by boiling urine and adding a few chemical and measuring it  against a colour chart, to urine strips to the 1990s when home bloodglucose meters became widespread that often took a minute or so to read which is the meters i started on , to the meters now that can work out your dose, remember carbs , insulin & bg and meters that bluetooth to pump or connect to smartphones.


our means of injecting insulin has gone from glass syringes where the needles had to be sharpened manually to disposable syringes to pens such as the novopen echo which remember doses.

even the method of insulin has changed from using animal extracts to using dna and bacteria which are able to be altered more to create the long acting or the rapid acting insulins.

pumps have gone from this in 1978- 

            

to this in 2012... pumps which give minute doses of insulin mimicking the pancreas. pumps that bluetooth. pumps that have lists of carbs and you just click on the food you're having and it works out doses. pumps that are waterproof. pumps that change lives. 


and this is what  pumps will hopefully do in the future.... https://www.myglu.org/articles/day_1_bionic_pancreas_study

a bionic pancreas is my hope eventually. Even if it means being connected to multiple infusion sets the bionic pancreas which is already in human trials will take away all the worry that we currently experience. the freedom of not having to plan ahead, not having to worry about hypos or hypers and not experiencing the symptoms and long term complications of these is something i can only dream about at the present time.

i have been lucky enough to hear the Diabetes uk head of research talk twice now. they spend £6,000,000 annually on diabetes research pretty much half and half on type 1 and type 2 . They were heavily involved in the invention of insulin pens. So to them, to JDRF to every scientist and health professional who are or were involved in research from the bottom of my heart, thank you! 

research gives me:



Monday, 10 June 2013

So a conversation on twitter sparked this blog post and its about should gp's treat all diabetes?

The conversation was triggered by Partha's blog post in which he recalled a meeting where gp's said they could treat all kinds of diabetes that 'there was no need for a diabetes base in hospital'. It kind of reminded me of this photo...


In my opinion we should be playing to the strengths of the GP and of the specialist. I want to start off by saying i like both my GP and my consultant. My GP has been my family's GP for over 30 years and mine for 18 years, he was the one who diagnosed my diabetes straight away. He's a great GP and oversees the management of all my chronic conditions and regularly asks how my diabetes is and is the one who thought outside the box and put me on the mini pill to stop the havoc my bg was going through monthly but he doesn't know the intricacies of dealing with type 1 especially a type 1 on the pump.

I'll give you one example of why i refuse to let my GP treat my diabetes and I why I hate QOF. Last December i got a phone call telling me to come into my GP. When i got there it was to be told my hba1c was 'very high' at 8.5 % and I had protein in my urine and he thought I should go on ACE inhibitors because of the protein and my blood pressure which was 120/80. My hba1c was actually that high cause I had hypounawareness and all 4 members of my team had said the priority was to get that back, when I'm the only type 1 in the practice my GP mainly deals with type 2's who would never really have the severe hypos i was having which were often 3 or 4 a day and in the ones. Plus it was Christmas and whose hba1c doesn't go a little higher at that time!  My consultant figured out the protein just by looking at the time it was taken which was just after a meal... it turns out it was a false positive and all 3 of my next tests came back as trace and also because my consultant is able to spend a lot more time with me than my GP does he knows how stressed i get by appointments which explains the slightly raised bp. 

I doubt my GP could give me the time i need in appointments to manage my diabetes or have the knowledge to figure out these bg...



or look at this graph and figure out whether i need to increase lunch ratio and decrease tea ratio or increase basal mid afternoon and reduce it in the evening where there's been a few hypos or were the hypos caused by chasing numbers in the afternoon or do i need a slight increase across the board to bring the average of 8 down slightly to get my hba1c below the 7.5 without causing too many hypos.



This is where my consultant and dsn come in. People who are trained specifically in type 1 diabetes who have years of experience (think they'll both kill me if I say how much...) and help me make the adjustments to achieve optimal control. Lets play to that strength of knowing type 1 and its regimes and equipment inside out. They know my case , they know me and they can give me the extra time I need to manage my condition which at the moment is fortnightly appointments with the nurse and monthly contacts with the consultant because lets face it :



and leave the GP to do what he does best for me overseeing all my treatment and diagnosing and treating the minor illnesses i have and leaves him free to deal with other patients who would get a lot more out of appointments than i would and who need the appointment a lot more than i do. This is why i refuse to do GP appointments about my diabetes cause it is a waste of their time and its a waste of mine.

Saturday, 18 May 2013

my birthday celebrations



My eighteenth birthday was on the 10th may and the way I celebrated? an 8:45 am appointment with my diabetes nurse and  i also woke up at 3.1 (55) .  Diabetes just never gives you a day off, it was a great start to my adult life. My DSN came in and was looking over my sugars and then broke the news that after talking to my consultant as well that they have decided to run a load of tests for coeliacs, hypothyroidism and on my autonomic nervous system because to put it simply my bloodsugar shouldn't be as crazy as it is. For the past 2 weeks for no apparent reason I've been in the 20s through the night despite massive temp basals and basal increases. Although it was nice to have my DSN and team believe that it wasn't me causing this and to have some confirmation that this wasn't my fault I can't put my feelings any way other than :

I am so scared.

I'm scared that this will be another serious condition. I am so scared about the possibilty it may be coeliacs , it is the one thing i have always dreaded but I suspect it isn't that as i have no symptoms of it. I am also scared what happens if all the tests come back negative. more tests? or a diagnosis of brittle diabetes?

I'm scared about the future, if one of these tests come back positive it will be my 8th chronic condition. i'm currently on 11 pills a day , my insulin pump and my inhalers occasionally . My body is scarred from itself ... pump cannulas , scars from cannulas from inpatient stays   lipohypertrophy . It has left scars you cannot see, the depression and the anxiety. It's been playing on my mind recently what guy is going to want a relationship with me when I have all these conditions? it's a massive burden for me and i don't have a choice about it. So who would willingly take this on as well, because these conditions will affect them no matter how much I don't want them too.  What if I fall in love with another diabetic later on? and will I be considered selfish for wanting a family knowing the risk of it being passed on.

After reading a friends post a few weeks ago part of it really struck a cord with me. He talked about , I think in reference to the poem Vitai Lampada (yes, i actually pay attention in English literature!), even in the worst times having something inside him that rallies him and keeps him going and its the same with me. Even when I'm facing another diagnosis i still have that fight in me, the anger at my body and the determination that whatever it is will never beat me. I  can never win this game but I sure as hell will not lose it


Monday, 13 May 2013

day 1 of dblog week

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?" 

my health care team are a big part of my support network. For the past 2 years they have provided endless support to me whenever i needed it. They have been on the end of an email or text whenever i've been having bad sugars or simply was worried . Thank you for not taking the easy way out and blaming my sugars on me, thank you for working with me to improve my bloodcount , for fighting for the pump, for looking for underlying conditions that may be causing the variability. Thank you for believing in me when so many people had given up on me. When so many people said i couldn't do it you never gave up on me and you always encouraged me, always protected me even when i wasn't aware of it. Thank you for being strong for me when i couldn't. When i didn't think i would come out the other side all of them were my rock. To my retired Dr especially, thank you for how much of a guiding role you've had in my life, you have had such a big influence on the person i've become, you taught me endless compassion for others, a huge influence in the qualities i've developed over the years and why i want to go into nursing. You probably also taught me stubborness and determination even when you didn't mean to. Thank you for being my hero when i was little , for being there for me no matter how badly i've screwed up, for all the very good advice you give and never judging and sorry for throwing so many tantrums when i was younger. i was hypo i swear.



I wish you could see the story behind the numbers. The nights i've woke up so thirsty i've had to drink out the bathroom tap and my bloodcount was in the 20s. The days i'm out with a friend and my bg has dropped to 2. The times i feel like a burden on my friend when i'm staying over at theirs because i've been having severe hypos whilst i've been sleeping for the past week. I wish you could understand that no i don't know why my bloodcount was that 8 weeks ago or what i'd had to eat. I barely remember that information from yesterday.

i wish i could show you the emotions i so often have. how i really struggle with diabetes. How it still hurts when you're testing for my 8th chronic condition and i'm still only 18.  I wish i could let my guard down but understand how difficult that is for me to do in a clinical setting with 4 or 5 health professionals in the room. It doesn't mean i don't trust you as i know some of you think at times, it doesn't mean you have failed me at all. I would open up but I can't bring myself to do that in a clinical setting with so many people I don't know well. Please understand that even after 16 years of having diabetes, clinic still scares me. that one number is the measure of how well i've done over the past 3 months. Even when i know my team won't i feel like i'm judged on that number. 


i wish i could show the non diabetic members of my team just one day of what it is like to live with diabetes as an 18 year old. The story behind the numbers.



Saturday, 20 April 2013

living in fear

i have never been scared of diabetes until these past few years. If I'm honest i had very little respect for how very dangerous it could be, i would go on 6 mile long walks with no bloodcount monitor or any hypo kit on me. these walks would take me two hours from the nearest road. In some ways i wish i could go back to the ignorance i had about how very deadly diabetes is. I wish i wasn't as as scared as i've been recently but with the hypos i've been having i am so very scared of just not waking up.


in the past couple of weeks i've been really struggling with my sugars. Clearly i tempted fate when  i was in clinic and I was like no , having no problems been stable for weeks. The next day after meeting up with my retired Dr for lunch my bloodsugar dropped to 1.9. I put it down to a fluke the next week i had another 1.9 and a 1.8 then my sugar was reaching 27 by mid afternoons and crashing over 20 mmol in just 2 hours for no apparent reason.

I really hoped that this time i would go the 3 months in between clinic with no more appointments sadly my body decided to prove this wrong and i'm back to an appointment every 1 - 2 weeks with my dsn until my bloodsugar settles down. I was also diagnosed with Vitamin B12 deficiency and have to see my gp over the neurological problems i've been having. i just want to be a normal teenager. is that really too much to ask? and i feel guilty for feeling like that, for feeling sorry for myself when i know it could be a lot worse.

the crashes i've been having are scaring me and i feel like a burden on my friends especially when i'm staying over at theirs because i know my most severe hypos happen when i'm sleeping. My dad found me the other week just staring at the stairs unable to figure out how to get down them because my sugar was 1.9. It's not fair on me and it's not fair on my family and friends that we are scared of these hypos but my family can't afford a cgm and there's no way i'll get one funded on the nhs. i'm scared that when i go to uni i'll have one of these hypos and the people around me won't know what to do.

then i saw this pop up on my newsfeed and i was reminded why it is perfectly justified to be scared of diabetes as Allison said diabetes is such a big deal. i watched this with tears streaming down my face. if you have any spare money please think about donating to this cause to raise money in memory of Emily , who lost her life to a hypo in her sleep.







Monday, 15 April 2013

guest post hawmc


“Face of my Disease”

Introduce my condition. Picture. My relationship with my health and condition. Few interesting facts about myself as a person AND as a patient






I’m sat in a local coffee shop, writing. I do this quite often, and it strikes me how much of a creature of habit I’ve become. How easily things have become to get used to.
It never used to be like this. Having an incurable, invisible illness changes you, it must, I believe. I haven’t always been since, nor have I always had my condition; in fact it’s only about 18 months old.

I have Crohn’s Disease, an Inflammatory Bowel Disease (IBD) which is a long term condition that inflammation of the lining of the digestive system; from mouth to anus. Common symptoms are diarrhoea, fatigue, abdominal pain and weight loss. Other symptoms (extra gastrointestinal) range from mouth ulcers, joint pain, eye infections and skin complaints. Crohn’s can affect any part of the digestive tract and can spread. Notice here that Ultraitive Colitis (UC, another IBD) is located to only the large bowel; Crohn’s can be more extensive and aggressive.

Luckily, for me so far, I’ve yet to see my Crohn’s spread further than it was when first diagnosed in Sept 2011. Despite being only located in my colon, my disease rapidly went from mild to severe within a couple months, meaning my medication doses and strength grew exponentially somewhat overnight. My last medication was a subcutaneous injection called Humira; an Anti TNF drug that helped control and vastly reduce the (then chronic) inflammation I had. I finished that in the New Year and have been on courses of Predniosolone (steroids) since to control the lingering inflammation.

Eight times out of ten, I manage my condition extremely well and am able to go to work and maintain a good lifestyle, despite my dietary restrictions. Acceptance of my condition was an extremely fraught process which took me into counselling to help me through the worst of it. I write my blog to help deal with the depression and anger I feel (and felt) as part of my diagnosis. I’m 24 and feel about 70 some days when my subsequent joint complain flares up. But I still keep going.

Despite the anger and depression, I would classify myself as a good patient. I have yet to refuse or dismiss a treatment course my GI (Gastroenterologist) advised me to take, or fail to turn up for a test or procedure. I trust my GI to do what is in my best interest, what is best for my disease at that point in time. I would rather try and fail at a medication that be too scared to take it. At some point, you have to live and let live, trust your doctor to treat you the best way they can.

I am a graduate but stuck in an unqualified job because my health problems have and still limit my body to move onwards. But, I am working. I am glad of my job for the most part; it keeps me sane when I need rescuing from the crap that my condition throws at me, at periodically inconvenient times. But I keep going.

I keep going.

If my condition has taught me anything, it is to know it will always get better. You might have to go through some pain and question life and yourself before you get there, but you will get better. Having some faith in another person to take care of you is important. As we go on with our conditions, as they grow and get older and we get more comfortable with them, as we learn more about them, we take back some of the control they have over us. It is a battle, I won’t lie, but it such a rewarding feeling knowing you are fighting against it and winning. And you will, you will win at some point down the line. Keep hold of that. 

Wednesday, 10 April 2013