# Struggling



## Katie Williams (May 29, 2018)

Hi all, 
Have been diagnosed with type 1, about a month after having my first son. He came a month early with complex health issues, and spent the first month of his life in intensive care at the hospital. He has a condition where he makes too much insulin, so is constantly at risk of having hypos. I have struggled getting my head around this and the fear surrounding it, but have been comforted by the fact that it shouldn’t last forever. 
After being home with him about a week, I was diagnosed with diabetes, it was all a big mess, being missed by the GP at an appointment, and then being sent to hospital by the doctors at 111. I was finally sent home once my ketones had started to go down (they were 6.8!), armed with insulin pens, needles, lancets, a new blood sugar machine (I had only just learnt how to use my sons new one!) and a few leaflets. That week I had a few appointments with nurses, dieticians, specialist nurses and consultants. Everyone was very helpful and seemed to know exactly what to do, the first week I felt amazing, having lost the ketones I suddenly fould so much energy and I had an appointment every couple of days with someone or other who could help me with any queries. Then it started to get harder to contact anyone from the clinic, the phones were often engaged, so I would leave 5-10 messages a day trying to get in touch with a nurse, even sometimes with the receptionist, but no one ever got back to me. All the while I had my partner, mum and dad on at me to try harder to contact someone for advise. In the midst of trying to look after a 2 month old baby, makking a phone call every hour just doesn’t work! 
So I started trying to alter my own insulin, after all, I was getting high blood sugar and hypos anyway so what was the harm.....
I had remembered the dietician tell me that most people have 1 unit for every 10grams of carbs, so I tried that; wasn’t enough. So I tried 1 unit for every 5 grams, sometimes it was enough, sometimes too much so I tried 1unit:7g and I started having hypos. 
I was completely confused but mostly scared. I had been caught a few times while I was out in the car with my son. I had to pull over in a car park and scramble for something to eat, I had been trying to keep a small carton of orange juice near me at all times but by the third or fourth time I hadn’t re stocked and so didn’t have anything, I used the glycogel I had in my kit. Then they say you have to wait 45 minutes to drive, and having a baby in the back I wanted to eir on the side of caution. By this time my sugar had dropped back down again. I couldn’t walk to the shop, I had my son in the back, and I couldn’t take him with me, I was so weak and shakey I wasn’t even sure I could walk let alone carry him! So I squeezed the last half of the tube of glucogel out and waited for it to kick in then drove straight home.
After that week, I think I subconsciously became afraid of the insulin. I kept forgetting to take it with my meals and some days I would get to bed time and have my first shot of insulin. A few days went by like this and it seemed to be working, I had massively high sugars at bedtime and sometimes a small amount of ketones but I was doing okay, at least I didn’t have any hypos right?! And that’s kind of where I am now, I’m scared of having hypos in the day (when I’m alone with my son) and so I’m mostly just having insulin at night. But I know this is not the way forward and my partner and parents have only just found out this is how I’m “managing” it, they’re all angry and worried. They are all very quick to judge that I’m not doing it properly and that I’m not trying hard enough, but I’m finding it all really hard and I don’t think they understand how it feels to be so vulnerable but need to be completely responsible for your child. 
I’m not really sure what my next move needs to be, but I’m hoping it starts to get easier as I can’t keep on like this.


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## christophe (May 29, 2018)

It does get easier, really it does. The insulin to carb thing is very personal and you will find you narrow it down until you know where you are, the reaction to insulin is also quite an individual thing too.. how long to take effect, how long it remains effective etc. As is your reaction to food, which is the reason for the insulin, which gives a kind of loop that you have to understand and alter to get a good balance..
Again, it gets easier. Each time you eat it is another piece of information that helps you tune the food to the insulin and vice versa. 
Easy to say it..but don't fear what is keeping you alive..a little too much insulin or a you eat a little too late. Yes it is a problem but something you can adjust.
And look, no one is angry with you. Worried and a bit frightened, yes. I think I can say we've all been there with type 1..
Talk.. type..  read what you can and ask your questions. That's your next move, then it gets a bit easier..

There will be someone reading your message who has been in your situation, I am relatively new to what diabetes is doing to me but even I know the fear and having people tell you what you should be doing without actually being there.. everyone reading your message has been there.. nobody found all the answers from a couple of leaflets. But we've all found a way, still finding it, welcome to where it gets easier.


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## Spireite72 (May 29, 2018)

Hello @Katie Williams welcome to the forum you will find lots of support from many very knowledgeable people here. Sorry to hear about your diagnosis and really hope things improve for you soon.


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## Northerner (May 29, 2018)

Katie Williams said:


> Hi all,
> Have been diagnosed with type 1, about a month after having my first son. He came a month early with complex health issues, and spent the first month of his life in intensive care at the hospital. He has a condition where he makes too much insulin, so is constantly at risk of having hypos. I have struggled getting my head around this and the fear surrounding it, but have been comforted by the fact that it shouldn’t last forever.
> After being home with him about a week, I was diagnosed with diabetes, it was all a big mess, being missed by the GP at an appointment, and then being sent to hospital by the doctors at 111. I was finally sent home once my ketones had started to go down (they were 6.8!), armed with insulin pens, needles, lancets, a new blood sugar machine (I had only just learnt how to use my sons new one!) and a few leaflets. That week I had a few appointments with nurses, dieticians, specialist nurses and consultants. Everyone was very helpful and seemed to know exactly what to do, the first week I felt amazing, having lost the ketones I suddenly fould so much energy and I had an appointment every couple of days with someone or other who could help me with any queries. Then it started to get harder to contact anyone from the clinic, the phones were often engaged, so I would leave 5-10 messages a day trying to get in touch with a nurse, even sometimes with the receptionist, but no one ever got back to me. All the while I had my partner, mum and dad on at me to try harder to contact someone for advise. In the midst of trying to look after a 2 month old baby, makking a phone call every hour just doesn’t work!
> So I started trying to alter my own insulin, after all, I was getting high blood sugar and hypos anyway so what was the harm.....
> ...


Hi Katie, welcome to the forum  Oh my goodness, what a lot you are having to deal with!  Your experience  sounds very similar to mine in many ways, except that I didn't have newborn with problems to manage at the same time. It sounds like you have done really well in the circumstances, so please don't beat yourself up about it if others appear to be judging you - often it can seem very straightforward to those without Type 1 - you just inject 'some' insulin and keep your levels somewhere between 5 and 8 mmol/l - but you and I know that it is far from easy, particularly when you are first having to learn how everything is affecting you.

The good thing is that you have recognised that you need to try and get things under good control, and to do that you need good, strong support. Please try and get a face-to-face appointment with your DSN as it's important to discuss how you are feeling with someone who is aware of the circumstances you are in. If you have any questions at all, please ask us as we may be able to offer suggestions for strategies for dealing with things, or provide answers to things that may be confusing or concerning you - no question is considered 'silly'!

I'd highly recommend getting a copy of Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas, which is the best available guide to living with Type 1 diabetes (everyone ought to be given a copy at diagnosis!). This may help clarify things for you.

It's clear that you have attempted matching your insulin doses to the amount of carbs in what you intend to eat, and you've made a very good stab at it. Whilst there are basic principles that always apply, there are other factors which may need to be considered, such as the amount of activity you intend to do. It's likely also that in these early weeks after diagnosis your insulin requirements may be changing, which does make it difficult to make those dose calculations accurately. For now, don't worry too much about getting 'perfect' numbers, but do keep taking your insulin, erring on the side of caution. In time you will gain experience of how you are affected by different meals and situations and things WILL become easier, so it's important at this stage to record the results of all your pre- and post-meal tests, and what you ate, in a Food diary, plus any other information you might feel is relevant, such as activity levels). Doing this should also help you to build up a record that you can discuss with your DSN in order to help you to make the necessary adjustments to your doses.

What insulin are you using, and what sort of blood sugar levels are you getting currently? Many people develop a fear of going low in the early weeks, but if you have good awareness that your levels are falling, and are always prepared with some hypo treatment to hand this can be overcome as you start to gain confidence. Again, it is experience that will help you to learn what your hypo symptoms are, especially the more subtle ones, and you will be able to act more quickly to head them off.

One thing that I think you would find immensely helpful is a Freestyle Libre. This consists of a small sensor that you stick to your upper arm, and a scanner (that also doubles up as a blood glucose monitor) that allows you to just swipe over the reader to tell you what your current blood sugar level is, and whether the trend is up, down or level. These are now available on the NHS, but tend to be restricted to special circumstances. Given your circumstances I think that you would most definitely qualify, so do discuss this with your GP and DSN. Details of the Libre are here:

https://www.freestylelibre.co.uk/libre/

As I said earlier, please do ask any questions you may have  There is a wealth of experience here and we will be more than happy to help in any way we can


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## SB2015 (May 29, 2018)

Welcome Katie.  You have certainly been through the mill and I am glad that you have found this forum.

First and foremost managing T1 does get easier.  It is very hard for people who do not have the condition to understand how much hard work it is to ‘just keeping your levels in target’.  It is great that you have support around you at home, and in time it will help to spend time explaining to them what you have to do and how they can help.  I was expecting my OH to mind read and know what help I needed and how hard I was finding it all at times.  A child I was working with showed me a card she wrote which she has in her test kit.  One of them is green and says, I am having a hypo. I can manage this one. I will join in again when I am ready.  

*Carbs ratios*
I am impressed by how you have already started to adjust you carbohydrate ratio.  We each have to find our ratios of insulin to carbs and this may change over the day.  You have already found That 1:10 is not enough and 1:7 is too much.  Keep working on this and adjusting it.  Having said that as Northerner has said I would encourage you to get in touch with your DSN and let them know how you feel.

*Hypos*
They are scary but manageable as you are aware that they are coming on.  Your account of your first one when driving show why they say to wait 45 min once your levels are back up.  I am glad that you had you hypostop gel with you.  We have a box in the car with jelly babies, biscuits and gluctabs in.  However it is easy to forget the top up, but I suspect you won’t forget for a while.   We have hypo treatments everywhere in our house, and I have them in every bag.

I am glad you have come looking for help and would thoroughly recommend the book by Ragnar Hanas that Northerner suggested.  Ig nore the age reference, I was 53 at diagnosis and have found it brilliant.

Keep in touch and keep asking questions.


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## Zillah (May 29, 2018)

Welcome Katie and sending a big hug. X


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## trophywench (May 29, 2018)

Ohhh - what a rotten introduction - it's always a massive shock whenever it happens - but so horrid in your own circumstances.

You know how you have suddenly had to become really organised with your new baby and always have to carry all his essentials in the ever present baby bag, which becomes like an extra body part?  Well! - you need a ME bag, madam!   Let's be logical though - if you and babe are constantly virtually joined at the hip - can the two of you share one bag? - they are usually capacious enough to contain a few mummy essentials too.

Ring PALS at the hospital concerned and ask for help.


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## CathyB (May 29, 2018)

Welcome Katie, sending you lots of hugs.  Sorry you have so much to deal with x


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## Lucy Honeychurch (May 29, 2018)

Wow, you've had so much to deal with all at once (((hugs))) x
You've been badly neglected by your team. Agree with all Jenny said, complain to PALS x


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## New-journey (May 30, 2018)

How are you this morning? It is huge all you are facing and please know you are doing your best. I think you could do with some emotional supoort, someone who understands your fears and works with you on different strategies. The experience with your baby in the car and having a serious hypo, terrified  you which is understandable, I would have found it so difficult too. Is there any medical professional who would listen to you and get you the help you need? 
I hope you are feeling better, sending loads of support.


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## Grannylorraine (May 30, 2018)

Welcome


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## TheClockworkDodo (May 31, 2018)

Hello @Katie Williams and welcome.  Sorry to hear you've had such a difficult time and so little support from your hospital diabetes team.  You say at the end of your post that you are not quite sure of your next move - I hope by the time you've read the replies here you will realise that you've already made your next move in coming here and having the courage to post your story and ask for help.  You will find lots of people here who've gone through similar things and no-one will blame you for finding it difficult - we will all help as much as we can.

I would definitely contact PALS, because although we can answer a lot of questions we can't give medical advice and you need the support of a diabetes specialist nurse (DSN) - you can use this search to find your nearest PALS.  At the very least, they should pass your complaint on to the diabetes department at your hospital.  Ask them to get you the email address for a DSN, as you should be able to contact one every time you have questions - it's their job to help you! - and as you've discovered, phone numbers never get the message to the right person.

A few things you might find helpful to know - firstly, you were obviously on the right lines adjusting your own insulin to work out the ratio of units of insulin to grams of carbs - but you may not have realised that the ratio you need can change throughout the day.  I'm on 1:10 at breakfast, but at lunch I'm on 1:22 and for my evening meal 1:17.  So it could be that you'd worked out (for instance) the ratio you needed for breakfast but it was far too much insulin at lunchtime, and that was why you had those really scary hypos.

The ratio you need can also change whenever the weather changes, and obviously lately the weather's been changing a lot, so you wouldn't be the only one who's been caught out having too much or too little insulin and having to change doses every couple of days - we all have.  Hopefully when the weather settles a bit it will be easier to work out your ratios and go from there, and then you just need to remember that you'll probably have to change them when it next gets hotter or colder.

The other thing is that you probably started aiming for perfect blood sugar, and the truth is hardly any of us have that!  Instead of aiming for a reading of 5 or 6 when you adjust your insulin, try to aim for one of 8 or 9, and that will give you a bit of leeway - if you have a bit too much you won't end up so scarily hypo, if you have a bit too little you won't end up so dangerously high.  But as you realise yourself, you can't manage without any insulin at all during the day.  So I'd try a tiny amount and build it up until you're regularly getting readings around 8 and then you can fine tune it later, when you are more confident about it.


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## grainger (May 31, 2018)

Hi,

Agree with all the others 

the only thing I’d add is that with a newborn you are doing the right thing trying to avoid hypos. So please don’t worry too much if you are not hit “ideal” levels. Aim for something that you feel comfortable with - after birth my diabetes team recommended 8-12 for the first few weeks as you have to remember your hormones are all over the shop too and your sleep patterns are probably wrecked etc. There are so many variables right now you just want to try and take things one step at a time plus you want to be able to enjoy your baby!! 

Oh, and if you are breastfeeding please be aware that your sugars may drop when feeding so it’s always a good idea to keep a snack near by - they are eating so you can too! 

Keep strong, sending you virtual hugs. You CAN do this and it will get easier xx


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