Diagnosed with retinopathy

[AT-90]

Hi all, new here, but after being encouraged by my diabetic nurse I have decided to join up to a forum in order to relate experiences with other diabetics in order to gain some insight. I am sure that there have been numerous other posts like this so if I am repeating what others have previously stated I apologise.

So here is my story: I was diagnosed with type 1 at the age of 19 whilst in my first year at university (right at the end which was a pain). I wasn't too bothered initially, in fact I chuckled to myself as it was a running joke between my friend and I that one of us would get it due to our endulgant lunch times at school. I had no real symptoms outside of drinking a lot of water but I was getting through enough to alert me into seeing my doctor. I was informed that I was generally healthy and I had caught it early enough to have no real damage done to my body.

Fast forward to now and I am really struggling to deal with the condition. I have been diagnosed with retinopathy and am only 21. My optician said that I wouldn't have it when I told him at my eye exam which alarmed me, but I assured him I did so he examined my retina. He said that he could see no real signs of it and that it will be at the background stage.

I struggle with diet massively. I am on the second year of my degree, working in design, so obviously my sight is how I make my money as well as carry out my favourite hobby and am worried. I have read horror stories around the Internet and try as I might I just can't manage my sugars as closely as I should.

I attend university 3 times a week and then work at a magazine the other 2 days which leaves me with a disjointed schedule. I have no routine and their is no way of avoiding it. Luckily, I do have a great girlfriend who I have been with for about 5 years and does her best to encourage me.

I am just basically here to ask how you deal with a hectic schedule? Looking for advice on slowing the progression of my retinopathy.

Sorry to babble on but am at a bit of a dead end and growing more and more frustrated.

Many thanks

 

[Northerner]

Hi AT-90, welcome to the forum 🙂 Sorry to hear about the retinopathy, but have they told you what stage it is? If not, it is worth finding out. I am guessing (from the fact that your optician can't really see anything) that they have found some 'background retinopathy'. Have you been told when you will need your next scan? It's quite common to be diagnosed with background retinopathy, and there's every chance that it will not progress or may even disappear if you can keep your levels decent and aslo keep an eye on your blood pressure. I've had excellent control but still have BR, but it doesn't need any treatment.

What insulin regime are you on? Have you been taught to carb count? What sort of levels do you get on waking and pre/post meals? What have your HbA1c readings been like? I'd recommend getting hold of Type 1 Diabetes in Children, Adolescents and Young People by Ragnar Hanas - it covers everything to do with Type 1 and just having a browse through might help you to idenbtify areas where you might be able to improve things.

Do you record your tests? If not, then you should start doing this and start keeping a comprehensive food and drink diary so that you can start to spot patterns - this would also be useful for you to take to a DSN of dietician to see if there are any areas where changes might be beneficial.

Please feel free to ask any questions you have - don't worry if you think they've been covered before as everyone is different, so we are interested in hearing your particular experiences 🙂

 

[everydayupsanddowns]

Hi AT-90

I was diagnosed in the third year of my degree (also in design!) and that was 20-odd years ago.

Sorry to hear that you have been struggling with control, and that you may have some diabetic changes to your eyes. Were they picked up during annual screening? Were you referred for anything else or did you just get a letter saying 'some background changes'.

I've had one of those myself, but after putting quite a bit of effort into managing my D the last screening I had came back clear. Either the initial changes are there and no worse, or whatever the spotted that time has gone away (I've been told by opthamologist that this can't happen though).

I think you are right in that diabetes does seem to respond well to routine... but you are quite early on in your D. If you live in similar chaos regularly it should be possible to develop some strategies for the various situations.

Tell us a bit more about how you manage your diabetes. How many injections a day you are on, what insulins, any particular problem times of day and maybe someone around here will have some light to shine on it.

 

[HOBIE]

Hi at90, i love some of the names people call themselves (is it anything to do with Joe 90 ?or is it me). The best i can say is good control & keep at it ! Your nurse has pointed you in right dirrection. 🙂

 

[Ellie Jones]

Hiya

Firstly don't get too anxious about the retinopathy as it doesn't mean automatic blindness, it means that you've got to look after yourself and maintain control etc... Sound a big ask when you have a demanding lifestyle but it can be done, the key to good control is knowledge..

You don't say what regime you'll on, I assume that you are on a multi injections a day (1 long acting, 3 quick to cover meals) what you need to compliment this is Carb Counting, so that you match your quick acting dose to your carb intake..

You also need to learn, how different exercise, stress levels, illness and insulin resisdence (this can change throughout the day) etc effect you, so that you can adjust your dose according to these factors with your carb intake..

A little note here, often you will be told that the basal/bolus regime enables you not only flexibility but enables you to eat what you want... This isn't strictly true... The higher amount of carbs you have in your meal, the more insulin you require to counter react, the higher dose of insulin used the more it can be unpredictable in it's adsorption, you find that most well controlled diabetic will also be on a moderate carb intake per meal...

I would suggest an investment in a book by John Walsh called 'using insulin' as explains the bolus/basal regime inside out, how to work out different factors involved in dose and gathering the data needed..

Plus have a look around here, ask plenty of question and we all help to guide you and explain many different things..

 

[AT-90]

Thanks for being so welcoming guys.

Hobie, the name is just my initals and date of birth haha.

I'll try to cover all of your questions so bare with me.

I am very happy to hear that my Retinopathy can improve and upon revisiting the letter it states that it is indeed background so that is definitely something to celebrate.

In terms of my medication, I am on Novo rapid before meals. I usually go from around 5 units up to about 14. I take about 1 unit per 15 grams of carb . At night I take 5 units of Levimir every night.

My diet is less than admirable and my willpower is questionable. I will often endulge with my family at meal time although I try to eat as healthy as I can at lunch and breakfast. I eat a lot of lentils and pulses in soups along with vegetables and I have noticed that I feel healthier after a month or so of doing this.

I recently started tracking my sugar levels using a diabetes app which provided me with graphs etc but have recently let it slide. I think a lot of my trouble is that I spend 4 hours a day travelling and so I am constantly rushing to catch my next bus. It's bad I know but this means I will not test my sugars on occasion. I know I am not helping myself and I almost feel guilty coming here when I am not giving it all of my effort but I believe that posting here will motivate me.

Thanks you very much for the book recommendation and I will pick it up. 🙂

I am sure I will have a few questions later so prepare to be inundated with annoying questions haha 😛

Thank you very much for all your help, it is truly appreciated.

 

[everydayupsanddowns]

Great to hear you sounding so positive already. And great to hear that you want to fix some of the problems you can see in your control. The whole D thing is a marathon, not a sprint - but you will be amazed how you can transform your control in 6 months or so with a bit of work. Then just keep on chipping away at it.

As for questions - Ask away!

Eating a varied diet (with a few treats etc sprinkled in) should be no problem long term, but it *might* pay you to 'eat boring' for a while while you take another look at some of your systems/approaches. Reducing the variables can help with pattern spotting. For a 'functional' meal like breakfast sticking to one 'low GI' choice for a few months can help reduce guesswork of what is happening and why.

Northerner's suggestion of keeping good records is a very good one, and a phone app (I use DiabetesDiary for a popular fruit-based device) can help you to record results on the go. BGs, doses, estimated g of carbs eaten, exercise/activity, stress/deadlines, illness, alcohol/nights out are all worth jotting down. Then when you look back over your BG results you can spot which days are more 'like for like', which time periods seem to play havoc/misbehave and which are just down to life getting in the way.

Look forward to seeing how you get on in the weeks ahead 🙂

 

[everydayupsanddowns]

One other thing... Your Levemir dose seems fairly modest (though it might be absolutely right) - have you come across the concept of 'Basal Testing'? - making sure your basal insulin is doing what it is supposed to be.

I find meal doses and corrections work far less reliably when my basal is out - even if only out by a small amount.

There's a good writeup about basal and a suggestion of how to test your basal activity here: http://www.diabetes-support.org.uk/info/?page_id=120