AOT1 – by Helen May


Share
Wow! Wasn’t Diabetes Week great? Although I don’t Twitter, I followed the events and publicity through the news, email and Facebook. One thing that was hard to miss was the great video the two big UK diabetes charities, JDRF and Diabetes UK, put together to raise awareness of the symptoms.

Most of the Facebookers loved the video. However, as it only showed children, there were some dissenters. Like me, they were diagnosed with Type 1 diabetes as adults. Personally, I think children are much cuter than 30-somethings (or older) and are likely to get higher profile in the media so I’m all for it. On the other hand, I don’t think people with AOT1 (Adult Onset Type 1) should be ignored because there are some differences. I believe, there is no physical difference between type 1 onset as a child and type 1 onset as an adult. But emotionally, there is a difference because people with AOT1 have experienced independent, adult life without diabetes.

Let me give some examples:

• I have had a driving license for over ten years with no limitations. So, when this is replaced by a license which on only valid for three years, I feel type 1 is taking something away.

• I have learnt and habitualised the social etiquette of eating in front of people I don’t know. Now I have to teach myself how to behave in a business meeting when the sandwiches come out: whether to inject in front of my customer (who may be from any country around the world) or not.

• As an independent adult, when I need to get of the house in a hurry, I no longer need my Mum to remind me what I must take: I am used to picking up money and keys. With AOT1, I have to remember to pick up my diabetes kit as well.

• I have packed for many holidays and have a mental list of things to remember the night before. Now I have to think about the time difference a few days earlier and make sure I have enough supplies in my hand luggage.

• I knew how alcohol affects me and how much I can comfortably drink .With AOT1, I need to ensure I remain in control.

• Despite my Mum’s best efforts, my eating habits are not three square meals a day. I eat what I want when I want (and I know, I am lucky that my food desires and physical activity balance themselves out so I do not put on weight). When you have to inject insulin every time you eat, grazing is not ideal so I have tried to retrain my eating habits.

• Until I had AOT1, I had never experienced a condition which made me go from ok to shaky, blurred vision, unable to concentrate, … the symptoms of a hypo … in a number of minutes. With AOT1, I had to learn to recognise these, to react to them and not be afraid that they could happen at any time.

In short, I had to unlearn and relearn many habits that, for over thirty years, I had taken for granted. And I did not have my parents on hand every day to help me in the brilliant ways I read about Olly and others helping their children. I had not grown up with diabetes. Perhaps this is the reason why I am less inclined to tell new people (such as potential new partners) about diabetes: because after 8 years, it does not feel normal for me.

So, I’m not a typical type 1. However, as a result of paying more attention to people with diabetes through these blogs, I realised there is no such thing as a typical type 1. And, I’ve realised there are other AOT1s out there: I am not alone.

You might also like

It is has been great for me to discover this site, has kind of re-instilled my faith so to speak. I was diagnosed as a type 1 diabetic two weeks after my 18th birthday and now at the age of 25 i can be honest and say it has been no easy ride.

I agree with what you say in your post, i found the actual tasks of injecting and testing to be quite simple but the mental and physicological aspects that came with it was the real struggle for me, the constant thought in the back of your mind no matter what activity that you do is “how will what i do today affect my diabetes…?” and “what do i need to do to prevent it…?” Life changed from just being able to get up and go…. Silver lining though i am now a much better organiser and honestly i would advise every person to find out where they can complete the DAFNE course because that should be the standard treatment for all diabetics, literally changed my life!

Keep posting looking forward to reading some more.

I was diagnosed with diabetes at 55 years. Always slim, athletic, full of energy. Thought I should have an eye test and my optician said he thought I might be diabetic and go to the doctor. Very high blood sugars and given tablets which proved to be no use at all. Ended up hardly able to walk and unable to get my blood sugars down. Insisted something done. One more blood test and the Hospital phoned for me to go in straight away. Ended up put on insulin which certainly changed my life for the better. Might be down points to taking insulin but at least I am almost as good as normal again, after going on carbohydrate counting course which means I am in control of how much carbs I take and how much and often I need to take insulin. As for being type 2 or type 1 it all depends on who you see. I truly object to being I am type2 when I can only keep my blood sugars right if I take insulin. Surely its about time it was realised if tablets do not work and you need insulin to counteract any carbs you have then you are type 1. Not if you are a child its type 1 and if you are an adult its type 2. Wake up the medical profession. A lot depends on this diagnosis. I was told I could not go on a Carbohydrate Counting (type of DAFNE) course unless I was type 1. Personally I think it was only because I was a pain in the neck to my diabetes team that I was allowed on the course, probably just to keep me quiet. Why is it that one has to become almost objectionable to get anywhere. Having said that most of my diabetes team are a great help and I am very indebted to them for the help they have given me. Even if I have a assertive me act now and again.

Firstly thanks to Helen for her excellent blog.
I was diagnosed with diabetes at the age of 41. At the time I was told I had insulin dependent diabetes. I was given booklets to read about diabetes but I didn’t know if I was type I or type 2. I didn’t fit into either category described in the booklets which made me feel very unsure and like a freek. I had to ask which type of diabetes I had and only several months after diagnosis was I told I had type 1.
I wish there was more information about type 1 diagnosis in later life. All the booklets I received spoke of type 1 as something children and young adults have. Even the pictures showed small children and teenagers not anyone in middle age. I feel there is a gap in the information available for older people diagnosed with type 1.
We may have the same condition as younger people but our needs and information requirements are different.

I was 43 when I was diagnosed in 2009. I have always been slim and active and had a good diet, no-one in my family has ever been Diabetic, rheumatoid arthritis has been our family thing. However since returning from a holiday in Hong Kong in 2007 and catching flu I had started to become increasingly tired, to the point where I was sometimes too exhausted to go into work or to walk around town. I was losing weight, which I was actually quite pleased about as I have always liked being thin and I was always thirsty. I was eating for England! One of my friends suggested I may be Diabetic, but I laughed and said how could I be, I’ve never been fat. I deliberately didn’t go to the Doctors just in case, but I was ‘caught’ when I went for a well woman check and found to have a bg level of 28.6, I was then slung into hospital and put on a drip. I looked on the bright side, after all Diabetes can be controlled with diet and excercise. I was given some tablets before I left hospital and I promptly cut out anything interesting from my diet and did much more excercise. I was gutted when I went to see a consultant at the same hospital six weeks later and it was suggested I go on Insulin, I felt such a failure and I couldn’t lose my driving licence as I had to drive for work, so I refused. I was also very confused, they said it was possible that I had late onset type 1 so I asked to be tested, but at first they said there was no real point, however I needed to know. A few months later I agreed to go on Insulin and did feel better, and they agreed to do the tests. My GAD 65 came back as negative and I was told that as my body was still making some insulin I am classified as a type 2, I still do not feel certain and I am totally fed up with people who don’t even know me judging me as fat and unhealthy, ill through my own fault and a burden on the health service. But I am still alive and one day I may feel pleased, and also certain of and comfortable with my condition even if I am a bit of an anomaly.

It was refreshing to read your story. I was diagnosed AOT1 at 58. I started with a kidney infection and ended up in A&E one night. It all started the year before with pneumonia and I was tired continually and pee’d a lot. I just put it down to slow recovery with age.
It was difficult to adapt for one with a sweet tooth but with my wife’s help I managed it. I was told that having had a previous illness 20 years before, I should have been checked.
But hey I’ve learnt to live with it although my long suffering wife sometimes hasn’t due to occasional hypos. I learnt only recently that type 1 can strike at any age but not as often the older we get?? What happened to all of us!

Diagnosed with Type 1 at 38, now 40, I’m still a newbie. Great to read the blog, please keep it up and here are my thoughts:

– the later the better. T1 may well be a cause of complications in the future, better to live as long a life free of its clutches.
– certainly a shock to the system, I hid in the toilet sobbing on return from hospital, and boy is it a pain…but let’s look to the positives. Perhaps more care with my lifestyle…less chocolate, alcohol and fat will make a positive contribution to my health.
– I have a greater sense of mortality and therefore a greater urgency to live life to the full, cherish my children, my wife and the joys of life.

Good luck to all. Smile.

great blog…..some interesting comments from both sides ….
diagnosed at 23 with type 1 and enjoying my high lifestyle working away from home I found it very difficult to accept my condition…..I did eventually settle down and try to get my diabetes in order but still found it difficult to maintain good control….I am now 52 and sadly have several medical complications related to poor control of blood sugars….it is going to be difficult choose what age or type of diabetes is diagnosed ….

I was 41 and couldn’t see me making 51, or at least i didn’t want to carry on the way i felt. I didn’t know what to do with myself and eventually dragged myself of to the doctors. I went with a long list, just so that i didn’t forget to tell them anything, a list of ailments, aches and pains in my limbs, unsettled and restlessness, dry skin, exhausted, blurry vision, thirst – oh and tennis elbow. When i said i have a list the dr told me we only had a 5 minute slot so what did i want her to look at. Well being that i had had tennis elbow for several weeks and the pain was now reducing me to tears i settled for that. She told me i was probably anemic and prescribed iron tablets, not bothering to ask what the other problems were. I insisted that i felt terrible so she suggested i had a blood test. I think there are six main blood test and she sent me for four of them. If she had listened to my list she may well have sent me for the glucose one! It was a trip to my opticians, when i couldn’t see in front of my hand, who insisted that i needed to go for a blood sugar test straight away on her request, and even that was a battle to get the test done without going to see the dr again.

Helen i understand everything you describe, but unfortunately a lot of the people around me don’t, which makes me withdraw because they just don’t get it.

I was told i have type 2 and put on tablets, but when arriving at the clinic they said, no type 1 and put me on insulin. I had had lots of aches and pains for a while, i started having to go for a lay down in the afternoons, then it got to the point where i struggle to get out of bed in a morning, then my short sightedness became shorter to the point that i couldn’t even see a 40in tv screen without being literally on top of it, and then i lost about a lb every day for a nearly a fortnight, and then i was permanently stood in front of the fridge pouring water into pint glasses one after another. My head didn’t feel attached to my body. It felt like someone elses head on someone elses body, i just didn’t feel normal anymore. However the first time i injected a couple of units of insulin i stayed up all day! Wow that was amazing. But then my eyesight changed again, i became longsighted, (i’d been short sighted since being 16yrs old), i couldn’t cope with that, but the optician couldn’t tell me when my sight would settle down. Thankfully it did return, but i changes frequently with the rise and fall of my blood sugars.

I’m medically not type 1 or type 2 so i don’t feel that i fit in a box, but i know that i cant live without insulin!

My life has change dramatically. I agree with Dan S, I am thankful that i had the best years of my life with out Diabetes, although at 40 i wouldn’t like to think thats it, but i do also believe that maybe children are more resilient and when you have known no different you can not compare.

Hi,

I am currently a student at the LSE, and as part of a project I would like to understand how social media (Facebook, Youtube and Twitter) are able to communicate and deliver valuable health information to young patients in the UK.

Primarily, the aim is to get in touch with and talk to teenagers diagnosed with the condition here in London in order to understand if or not they find social media to be a reliable means for communicating and sharing health knowledge. I also want to find out how they interact and express themselves on the different social networking sites and if they are more willing to share information on one site when compared to another etc.

At the same time, I thought that it may be a good idea get an opinion from you (or any blogger at DUK), on the topic as well. I understand that you may be busy and will have other, more important, commitments, but I thought I might as well give this a try.
Since I found no way of contacting you other than this blog, let me know if you are interested and I will send you my email address from there.

Kind regards and hoping to receive a positive reply from you soon,

Swathi Selvaraj

Well it’s amazing how the onset of Diabetes never arrives at the right time! I too was an adult when diagnosed with Type 1 and I am grateful every day that I wasn’t a child or even worse a teenager when it struck! I am also so pleased that my two children were born in non diabetic days. It’s a pain but be positive about the late onset if you can, it does take a long time to accept this life changing condition but hopefully you will sooner rather than later. By the way Insulin Pumps are amazing, myself my brother and niece live many miles from each other but we all sport our pumps!

I become diabetic at 50 needless to say type 1 part of the struggle was getting medical professionals to believe me I was type 1. But it has got better and people are really understanding, If you have not been on a DAPNE course get on one it made a massive difference to how I live and eat. And on the plus side my liver has never been healthier I gave up drinking alcohol when out I was so worried about hypos, now I hardly drink at all

Another experience AOT1’s experience is the experience of being initially diagnosed with Type 2 diabetes, only to later find out that it is Type 1. This was very frustrating, although probably inevitable given the increasing high rates of Type 2 diabetes.

I know how you feel. My son became type 1 at 11, and imagine my surprise no shock when at the age of 52 i became a AOT1 . So I know how you feel. Now my son and I have reversed our roles, and I don’t like it one bit. Have to do all the diabetes things I used to remind my son about, now he reminds me!!! Must admit it was a bit of a shock so I totally agree with your points of view. Regards Ann AOT1

Well I think the important thing to remember is the grass is always greener on the other side. While I’m not in the slightest trying to say you had it easier, I think I would rather have had the taste of freedom rather than never having it. But then I’m sure if I did then I’d appreciate the fact I could adapt when I was younger rather than older. I would think it is equally difficult either way, and you have done really well to change your lifestyle as best you can. I’m not sure it will ever feel exactly normal but then who does feel normal.

I do agree also though that there should be a mix of ages portrayed through the promotion, not exactly raising the best awareness if people think it is only children that can get it.

Great blog that I can totally relate to. I was 27 when I woke up one day in hospital and was told I had type 1. Had no idea what it was or meant and it took a long time to adjust. Keep the blogs coming that don’t just pigeonhole us diabetics into young with type 1 and old with type 2. We are all individuals and our condition affects us all in different ways.

Great blog. I was diagnosed with T1 a couple of weeks before my 40th birthday and 3 weeks before the birth of our first child having thought I was just stressed for 18 months. It has made a huge change to my life, since diagnosis the best thing has been the DAFNE course I attended three years ago and the continued excellent advice and support from the DAFNE team in Cambridge (i travel 180 miles from Somerset to see them)……