New to diabetes

[Lisabezodis]

Hi.
Just after some advice. I have just been diagnosed with Type 1. I'm really struggling to get.my head round things. Finding it hard to out out by
myself. Did anyone else struggle?

 

[rebrascora]

Hi and welcome.

It takes time to build up an understanding or how it all works and gain confidence in what you are doing so it is perfectly normal to feel both overwhelmed and vulnerable in the beginning but I can assure your it does get better. I happily go out at all times of the day and night on my own without any concern and I live on my own. Really it is just time and experience which will give you the confidence to get back to your normal self. I am nearly 2.5 years down the line with it having been diagnosed in later life like yourself, so I can relate to what you are saying.... particularly during and after my first few hypos.... which seemed so scary, but now I know that I can manage them well and I understand how to manage my insulin and sense when they are coming on and of course I always carry all my gear with me and they are just a bit of an inconvenience ow rather than being scary events.
Which insulins have they started you off on and how did your diagnosis come about?
Do you have Freestyle Libre to scan for your readings or are you just finger pricking to test? There is so much amazing technology now to help us manage our levels better and keep us safe, we are incredibly fortunate to be able to access some of them through the NHS and the forum is a fantastic resource of knowledge and experience to help improve your understanding so feel free to ask anything you don't understand. The members here have very kindly helped me enormously since my diagnosis so I hope you will visit regularly and learn from people who have been there and got the T-shirt before you.

 

[Bruce Stephens]

Did anyone else struggle?

Did anyone not struggle?!

It's hard, and it's rare enough that you probably didn't know much (if anything) about it. So it's all new, and the only people you have to talk to are doctors and nurses (who you don't see that often).

So struggling is completely normal.

 

[Ali11782]

There are some amazing forum members on here who have helped me and I'm certain they will support you.
I am only coming to terms with my type 1 diagnosis, two years later. It's a lot to take in

 

[Lisabezodis]

Hi thanks for the reassurance. I'm on novomix 30 twice a day. I finger prick. I was on metformin but my reacted to this. So they took me off the medication.

 

[Lisabezodis]

They only reason I found out was by massive weight lose

 

[rebrascora]

Hi thanks for the reassurance. I'm on novomix 30 twice a day. I finger prick. I was on metformin but my reacted to this. So they took me off the medication.

The weight loss is quite shocking isn't it! I kept looking down at my arms and legs and thinking they didn't look like they belonged to me. So much muscle wastage and even my wrists looked scrawny! Hopefully you will soon put as much of it back on as you want to and feel better now you have insulin to enable your body to access fuel from your food rather than burning itself.
Bit disappointing that they have started you on a mixed insulin although I appreciate it may be easier for you and your Health Care Professionals to manage in the short term. Most Type 1s are on what is called a basal/bolus insulin regime. This means 2 separate insulin pens... a slow release (basal) insulin to cope with the glucose that your liver trickles out when you haven't been eating (through the night and between meals) to keep your vital organs supplied with fuel) and a quick acting (Bolus) insulin which copes with the glucose digested from the food you eat.
Your current Novomix30 is a mixture of these 2 types of insulin but it means that you need to eat fairly fixed carbohydrate meals at regular times of the day which can be quite inflexible. By keeping those insulins separate, you can inject as much or as little quick acting insulin as you need to cover when and what you want to eat. It means that you can skip a meal when you want to or have a snack when you feel like it and just inject whatever insulin you need to deal with it.

Have they referred you to a consultant of specialist diabetes clinic. Hopefully they would then offer you a basal/bolus insulin regime and give you some training in how to use it.

What are your levels like at the moment and how are you managing with the injections and blood testing. It is a huge amount to get your head around, so perfectly normal to feel overwhelmed by it all, but it does slowly start to make sense.

 

[SB2015]

Welcome to the forum @Lisabezodis from another late starter with T1 (53 at diagnosis)

It is a lot to take in at the start and a steep learning curve. As @rebrascora has said it does get easier As you get to understand more about what is happening and get used to the testing and injecting.

It is often the rapid weight loss that prompts a diagnosis of T1, as we often put down the other symptoms (tiredness, thirst, and regular toilet visits) to other things. When I lost 1 1/2 stone in a week they tested and I ended up in hospital with Diabetic Keto Acidosis.

I am wondering whether you were diagnosed by your GP as you have been put on a mixed insulin, which can be quite restrictive as you have to match your meals to the injections. It would be worth getting a referral to the specialist team at your local hospital, which should be quite speedy for a newly diagnosed person. They can work with you to switch to a Basal (background) / Bolus (quick acting for meals) insulin regime, which is a lot more flexible. It means a few more injections but you can then eat what you want when you want.

I found the book T1 Diabetes in Children, adolescents and young adults by Ragnar Hanas very useful.
Ignore the age reference, T1 is T1, just perhaps miss out the chapter on starting school. It is clear and regularly up dated with the latest technology, such as the Libre which @rebrascora mentioned.

There is a wealth of experience to tap into on here. No questions are considered silly on here. Just ask.

 

[SB2015]

Snap @rebrascora

 

[rebrascora]

I have responded to your other post. Hopefully @everydayupsanddowns or @Cherrelle DUK can combine both threads to avoid confusion.
One of the most important functions of this forum is to allow us to connect with other people who have been through similar experiences and gain reassurance that the thoughts and feelings we are going though is understandable and normal and to know that things will get better and to learn from each other. You have come to the right place and we will do our best to support and guide you during the times when you don't have access to those medical professionals. It does feel very lonely at first being left to cope with it yourself but with the help of the forum you will soon feel part of a community.

 

[Ellie Jones]

When you first diagnosed you go through a grieving process, all those emotions, coming to terms with your diagnoses is natural.

We all have a perception to where our lives are going, then all of a sudden the carpet is pulled from under our feet, life isn't going to be what we thought it was going to be. And it takes time for us to process all the changes ect

Thankfully groups like this one, will help to enable you to come to terms, sort yourself out and prove that yes life will does go on, and with management then your world is still your oyster

 

[Inka]

Hi thanks for the reassurance. I'm on novomix 30 twice a day. I finger prick. I was on metformin but my reacted to this. So they took me off the medication.

How are you finding the Novomix? It’s quite inflexible, isn’t it? I was on mixed insulin very briefly but was then changed to a more flexible regime of separate insulins. The separate insulins regime (MDI) is what’s recommended for Type 1s. Did they think you were Type 2 initially?

Yes, the weight loss is shocking. I lost weight everywhere, even off my face which was so weird. You’ll gradually put that weight back on and re-settle at a more normal weight for you.

Is there anything in particular that’s confusing you or worrying you?

 

[Flower]

Hi @Lisabezodis and welcome

I'm sorry to hear about your diagnosis, it is a big shock to the system and there is so much to learn about something that just used to happen unnoticed. You will get there but it is a big change and can feel quite overwhelming at the start. It does take a while to see how your body reacts to food, exercise, work, housework, shopping - just about anything! but in time you will start to feel safer doing things on your own.

As said above mixed insulin is quite inflexible as you need to feed the insulin to coincide with the peak insulin action, to feel safer always carry your testing kit and glucose/sweets to treat a low. The first line choice of insulin therapy for adults with Type 1 in the UK according to NICE is MDI- multiple daily injections of basal and bolus insulin which gives you the control & flexibilty to inject varying doses of quick acting insulin to cover the carbohydrate you choose to eat rather than having to eat a set amount of carbohydrate to feed the insulin in a mixed insulin regime.

I hope you are able to get a referral to a diabetes clinic that can help you further.

 

[Paulbreen]

When you first diagnosed you go through a grieving process, all those emotions, coming to terms with your diagnoses is natural.

We all have a perception to where our lives are going, then all of a sudden the carpet is pulled from under our feet, life isn't going to be what we thought it was going to be. And it takes time for us to process all the changes ect

Thankfully groups like this one, will help to enable you to come to terms, sort yourself out and prove that yes life will does go on, and with management then your world is still your oyster

It's an interesting opinion regarding grieving about being diagnosed as a T1, is that how people who are diagnosed later in life feel? I was a child and to be honest I dont ever remember feeling like I had lost something, and growing up it was never a thought I had T1 Diabetes and I just got on with it lol.

On to welcome a new member to the club no one ever wants to join, Lisa you will be on the steepest learning curve in your life right now and many people here will agree I'm sure, in the beginning it is a struggle but the great part is, very quickly you will become an expert and will become very in tune with your body.

I wish you the best of luck on your new journey and best piece of advice I ever got is ask ask and ask again there is a lot of great people will help you here.

 

[Amity Island]

Hi.
Just after some advice. I have just been diagnosed with Type 1. I'm really struggling to get.my head round things. Finding it hard to out out by
myself. Did anyone else struggle?

Hi Lisabezodis,

It really depends on the person. It's always challenging, lots to learn and it is a considerable change in ones way of life. I think it really depends on how accepting one is, what your current lifestyle is like, what your expectations are, your aspirations. It shouldn't stop you doing anything, just needs a bit more planning.

As you are new to diabetes, I've put some basic info together below which you might find helpful.

Keeping this as short as possible for you, here are just a few things I can think of that are worth keeping to the back your mind over the coming weeks and months, which will hopefully be of help.

1. INSULIN TERMINOLOGY

"Basal" Insulin (e.g Levemir) and "Bolus" Insulin (e.g Novorapid).

Basal Insulin is often taken with an insulin pen (or pump), once (or twice) a day to keep background blood sugars ticking over steady. In theory, background blood sugar should be level (not rising or droppng) and the same 24hrs a day. The hospital will help you work this dose out.

Bolus Insulin is usually taken before each and every meal or snack to "use up" the carbs (and to an extent, proteins and fats too) from a meal. This is on a very individual need, again hospital (and you) will help you adjust this over time.

NOTE: By using a combination (trying to replicate the pancreas) of both basal insulin and bolus insulin each day, the aim is to keep blood sugars in range as much of the time as possible.

2. BLOOD SUGAR RANGE

"Ideally" blood sugar should remain between 4 and 10mmol each and every day. It's not always that easy, but will likely become easier to achieve with practice and time. The average of one's blood sugar is given by (typically) a 6 monthly or yearly blood test and is given as a HbA1c.

3. BLOOD SUGAR SPIKES

These can be a challenge to prevent and are best avoided if at all possible. These can often be avoided with careful timing of meal time (Bolus) insulin. Sometimes, particularly in the morning for me, I have to take my breakfast bolus insulin 20mins before I eat to avoid a spike up in blood sugar. Best to try and keep blood sugars in range.

4. INSULIN RATIOS AND INSULIN SENSITIVITY

Many T1's carb count and many diabetics find they are more insulin resistant upon waking. This usually means more insulin is needed for carbs in the morning than for carbs later in the day. For example, I will require more insulin for the same meal in the morning as I will for that same meal if eaten in the evening. My current ratios are 2 units of bolus insulin for every 10g worth of carbs upon waking (typically 8units for 40g of carbs at breakfast), 1.5 units of bolus insulin for every 10g of carbs at lunch and 1:10g for tea. Most ready made food has the carbs written on the label, harder to work out when eating out, but just practice and research.

5. DAWN PHENOMENON

Many diabetics get a rise in blood sugar upon waking (not every day; it can be random). I usually add in an extra unit of bolus insulin with my breakfast to help counteract this.

6. HYPO's

What some don't realise is, it can take more than one lot of glucose tablets or jelly babies to treat a hypo (low blood sugar (below 4mmol). One dose of glucose can usually work if the hypo has been brought on by sudden unplanned exercise, but if it's caused by too much insulin (over estimating bolus), it can take many more attempts to keep blood sugar within range. Generally, we are advised to wait 15mins after first intake of glucose before taking more glucose, need to check blood sugar regularly after a hypo.

7. EXERCISE

Heavy and moderate exercise usually affects insulin sensitivity. Insulin ratios and basal insulin doses can be affected for anything up to 48hrs, depending on the individuals response. Exercise and T1 need to be carefully managed, but nothing stops me from exercising, just got to take it slow and steady and build some experience using blood tests and adjustments.

8. FREESTYLE LIBRE

Absolutley fantastic. Finger prickless glucose monitor worn on the arm which gives 24hr readouts! Brilliant, fantastic, amazing, superb.

 

[Lisabezodis]

Thank you for all your lovely messages. I lost 4 stone over 3 months. Spoke to the doctor 4pm on a Thursday. Was in doctors surgery by 6pm. In hospital by 8pm. Its a bit of a shock at the moment. I have been signed off work with anxiety which I suffer anyway. But this has heightened it even more. At the moment I feel the diabetes is controlling me. Not me controlling it. I have an appointment on 28th July with consultant. I'm going to ask about the Leibra. I got a 14 day trial and found it so useful. I work in a school I find finger pricking really hard as I have to leave the room. As you can imagine I can't leave students unsupervised

 

[everydayupsanddowns]

Thank you for all your lovely messages. I lost 4 stone over 3 months. Spoke to the doctor 4pm on a Thursday. Was in doctors surgery by 6pm. In hospital by 8pm. Its a bit of a shock at the moment. I have been signed off work with anxiety which I suffer anyway. But this has heightened it even more. At the moment I feel the diabetes is controlling me. Not me controlling it. I have an appointment on 28th July with consultant. I'm going to ask about the Leibra. I got a 14 day trial and found it so useful. I work in a school I find finger pricking really hard as I have to leave the room. As you can imagine I can't leave students unsupervised

Welcome to the forum @Lisabezodis

Goodness what a whirlwind diagnosis you had!

Sorry to hear you have been feeling a bit overwhelmed - but this is quite a common experience, and as others have said you will quickly begin to adapt and to fit diabetes into life - @SB2015 sometimes likens it to learning to drive, where initially the need to concentrate on every driving action is all consuming… but as you become more experienced it becomes largely automatic, and while you need to stay alert to it, it takes up less head space, and you can far more easily carry on conversations etc. And there are even moments when it is actually enjoyable(!). Like absolutely nailing your doses while eating delicious party food, a big slice of cake, or takeaway blowout 🙂

Hope you get access to Libre, and hopefully you will be able to move to a more flexible Basal:Bolus system soon too.

There are some things about living with diabetes that you won’t be able to fully control - but as you learn, and gain experience of your own diabetes management and the strategies that work best for you, you’ll soon find you are able to life alongside your diabetes and incorporate it into a full, enjoyable, active and satisfying life 🙂

 

[SB2015]

I work in a school I find finger pricking really hard as I have to leave the room. As you can imagine I can't leave students unsupervised

Welcome to the forum Lisa. I was also in school when diagnosed (a little while ago now)

Things that I found useful were to:

Have hypo treatment everywhere. In my bag, staff room, offices at each end of the school.
I was in a secondary school and got caught out once doing cover, however students soon
offered up their stash of sweets!!

Tell my students about T1,and explained about hypos. They sometimes picked these up before I did, when my explanations were making no sense!! I had an arrangement that if I was hypo I could get cover whilst I recovered. In the early days my levels were higher rather than low but this did occur later.

I did my tests in lessons with no problems arising. I taught Maths so we did start to use my Bg readings and carb ratios to good use.

I found it was very difficult at the start, and I did a phased return, but the school were very supportive.
it definitely got easier. Any questions fire away.