Struggling

[Shaz88]

Hey All,

I became type 2 diabetic over 2 years ago, it's been a journey of different medication, diet and exercise.
I started as diet controlled with no advice as to what to eat, in fact no support at all, I practically begged for a dietician appointment to help which eventually I got after a year, at which point my HBa1c had now soared from 46 to 110 and they couldn't understand why! I had now got a diabetic nurse who was amazing and made things a little clearer.
I went into diabetic detressed and refused to take any meds and was basically prepared to just die from it, it was a hard time. Eventually started on Metformin, after a few months it became apparent something was wrong, I dropped 8 stone in weight which didn't seem to concern anyone, and I was unwell most of the time. Eventually I stopped half of my Metformin believing it was that and my health improved and weight loss slowed down. But bs started to rise again and was constantly running in ketosis in and out of hospital to bring Ketones down but yet still no intervention from any professionals. I had to beg for an appointment at the diabetes clinic at the hospital as I still hadn't seen anyone, I was placed on sigagliptin by diabetic nurse, 10 days later I collasped and was in hospital so I was put on gliclazide, which didn't do anything. Finally went to see a specialist who after testing my bloods immediately took me of remaining Metformin as this was wasting me away to now under 8 stone, and left me on gliclazide which didn't work.
I became unwell, Ketones high, HBa1c 111, blood sugars testing daily always running in 20,s and 30,s. I was finally sent to hopstial again in ketosis, all meds stopped and put on insulin, suggesting that I was not Tyoe 2 but adult onset Type 1.
This happened 2 months ago and I have just almost given up, I'm struggling with the whole idea of insulin, my diabetes is controlling me, I had my driving licence removed and now on 3 year medical licence, I have to test bs within 2 hours of driving, again while driving if its been two hours, testing at the usual times anyway. I take noromix 70 30, the fast acting is too strong, slow isn't strong enough, if I exercise I have hypos, if I up my dose I have hypos, if units are to low I go back to readings in the 20,s, my pens will soon change to one long acting and one for short, my job is affected, as it was shift work so only working earlies or all day, no evening as I don't get a meal to take insulin, I have really low days in mood where I feel I just struggle with it. I don't socialise anymore and become quite recluse as I used to party a fair bit but haven't had any alcohol for a year as it made me sick on Metformin and don't know that it will do me any favours, so I stopped going out, so friendships have become thin on the ground and not many people bother now. Even something as simple as going out for a meal is a bind, having to go to the toilet to inject before I eat.
I'm sure some of this is familiar, at least I'm hoping, does anyone struggle,? how does it affect work? Life?
I started a new job two days after I started insulin, I got the job in January when there didn't appear to be issues that would affect job, now the job isn't suitable so struggling with work.
I don't feel sorry for myself, it is what it is but I don't know any other diabetics to bounce Info off and for support and health professionals are not the best.
Hope this makes sense 🙂
Thanks. X

 

[Robin]

Hello, Shaz, and welcome to the forum. Reading your post, I'm not surprised you feel burnt out and distressed. A diagnosis of diabetes and getting used to the medication is bad enough once over, but you've been chopped and changed so much, I'm not surprised your head's in a spin.
Take things one step at a time. Once you are on one basal long acting insulin, and short acting for meals, it will become easier and you will start to feel better. Ask to go on a course to teach you to carb count and match your insulin to what you are eating, (normally called a Daphne course) You will learn how to deal with your insulin, and meet other people with Type 1 who are all in the same boat.
All the ins and outs of life on insulin will eventually become routine, although all of us find it a pain at times. All of us on insulin are in a three year licence, it's a nuisance, but it only means filling in a form once every three years,
Others will be along with recommendations for reading, etc, I won't overload you with stuff in this first reply, but don't forget, we are all here for you.

 

[Martin9]

Hi @Shaz88, I'm a fairly newly diagnosed Type 2, so won't be able to offer much advice to you on what sounds like a very complicated set of symptoms more in line with Type 1 or a.n. other, what I do know is my diabetes is a cake walk compared to yours, and if I keep on a low carb, healthy fat diet I'm generally ok .
Having said I can't offer you advice there are others here who probably can and will, but if you ever just need a general chat, please chat away ..!

 

[Shaz88]

Hey, thanks for reply. Yes this is why I have joined, to make sense of it all as at the moment I feel like a lonely diabetic, but not lonely in life, as you said about licence, that's a prime example of how it only seems me but yet everyone on Insulin is also on same licence but it just seemed just something else to deal with.
I have heard of the Daphne course, I think it's been mentioned, I did attend the Desmond course when it was presumed I was T2.
My head is completely mixed up and confused. I attend clinic again Friday to consider the two pens.

 

[Shaz88]

Hi @Shaz88, I'm a fairly newly diagnosed Type 2, so won't be able to offer much advice to you on what sounds like a very complicated set of symptoms more in line with Type 1 or a.n other, what I do know is my diabetes is a cake walk compared to yours, and if I keep on a low carb, healthy fat diet I'm generally ok .
Having said I can't offer you advice there are others here who probably can and will, but if you ever just need a general chat, please chat away ..!

Thank you. It is still difficult being T2, I struggled just knowing that, it still changed my life before T1 so I understand how you must feel. Have you come to terms with it? Managing ok?

 

[Martin9]

Thank you. It is still difficult being T2, I struggled just knowing that, it still changed my life before T1 so I understand how you must feel. Have you come to terms with it? Managing ok?

I seem to be doing ok at moment thanks, on a reducing diet to lose a bit of the 'beer belly' and hopefully the visceral fat surrounding my beleaguered liver and pancreas, lost about a stone so far, and mostly my waking bloods are within the 5. odds so things are ok I think ..?

 

[Martin Canty]

Sounds like you had a tough time of it, reading the post & seeing Ketosis I'm really surprised it took them so long to reach a T1 diagnosis..... Hope things are getting better.

 

[Shaz88]

I seem to be doing ok at moment thanks, on a reducing diet to lose a bit of the 'beer belly' and hopefully the visceral fat surrounding my beleaguered liver and pancreas, lost about a stone so far, and mostly my waking bloods are within the 5. odds so things are ok I think ..?

I was over weight but certainly not now, after becoming so ill and losing so much weight they fast tracked me for cancer! They didn't deal with the diabetes! Very little support.
I had a full body ct scan with dye and showed nothing sinister, in fact liver has never been abnormal or fatty and pancreas normal! So why I have become diabetic I don't know, something else which confuses as it is always presumed its weight related and losing weight miraculously reverses diabetes, which in my case, diet, exercise and weight loss has actually made me worse. Hope its all OK with you.

 

[Shaz88]

Sounds like you had a tough time of it, reading the post & seeing Ketosis I'm really surprised it took them so long to reach a T1 diagnosis..... Hope things are getting better.

You appear to be going in the right direction looking at your readings and discontinued meds

 

[Flower]

Hello Shaz, welcome to the forum 🙂

You've been through a tough time but hopefully things will start to improve from here on. Living with such high sugars due to all the problems you've had with diagnosis makes you feel so poorly and affects everything, physically and mentally. It is a shock to realise just how unwell you've been feeling with your body desperate for energy. Getting a proper insulin pattern up and running will make you feel so much better.

Once you get established on separate injections for long acting basal and quick acting bolus things will start to improve. Mixed insulin like you're on at present requires you to feed the insulin with the right amount of carbs which is very restrictive whereas with basal/bolus you choose your carbs and match the insulin dose to cover them. It will give you a lot more flexibility.

Type 1 or Late onset is an auto immune disease where your own body attacks and kills of the insulin producing cells in the pancreas, diet, exercise, weight loss won't make a jot of difference if your beta cells are failing. The only solution is to inject insulin.

Take it slowly, you've already been through the mill. It is a steep learning curve to get insulin and carbs sorted but achievable. I wish you well and hope you start to see improvements very soon. 🙂

 

[Robin]

I don't know, something else which confuses as it is always presumed its weight related and losing weight miraculously reverses diabetes, which in my case, diet, exercise and weight loss has actually made me worse

Blame the press! They are always banging on about 'diabetes' and failing to distinguish between Type 1, which is an auto-immune condition where your immune system attacks your insulin producing cells,(for reasons as yet largely unknown) and Type 2 which can be associated ( but by no means always) with weight gain and fatty liver.

 

[Martin9]

I was over weight but certainly not now, after becoming so ill and losing so much weight they fast tracked me for cancer! They didn't deal with the diabetes! Very little support.
I had a full body ct scan with dye and showed nothing sinister, in fact liver has never been abnormal or fatty and pancreas normal! So why I have become diabetic I don't know, something else which confuses as it is always presumed its weight related and losing weight miraculously reverses diabetes, which in my case, diet, exercise and weight loss has actually made me worse. Hope its all OK with you.

Again I can't offer much advice but losing weight helps T2, not T1 as your pancreas has somehow stopped making insulin, anyway I see the T1s are starting to comment now, they will have best advice .. I doubt your weight loss had anything to do with Metformin, but a symptom of uncontrolled T1

 

[Martin9]

Blame the press! They are always banging on about 'diabetes' and failing to distinguish between Type 1, which is an auto-immune condition where your immune system attacks your insulin producing cells,(for reasons as yet largely unknown) and Type 2 which can be associated ( but by no means always) with weight gain and fatty liver.

Good stuff, don't forget our T2 fatty pancreas too, great advice tho'

 

[AJLang]

Hi Shaz, welcome to the forum. I'm so sorry that it so long for them to diagnose you as Type 1. Life will be easier, I promise. I've been living with it for 47 years and have had a flipping good life. Carb counting, several finger prick blood tests a day and altering your doses as needed will make a massive difference to the quality of your life. Also, always make sure that you've always got fast acting hypo treatment within easy reach whatever you're doing, and even when you're in bed. You should hopefully find the hypos easier to manage and fewer but they do happen so it's always wise to have that hypo treatment close.

 

[CathyB]

Welcome Shaz, your journey certainly hasn’t been an easy one 😱

 

[Shaz88]

Hello Shaz, welcome to the forum 🙂

You've been through a tough time but hopefully things will start to improve from here on. Living with such high sugars due to all the problems you've had with diagnosis makes you feel so poorly and affects everything, physically and mentally. It is a shock to realise just how unwell you've been feeling with your body desperate for energy. Getting a proper insulin pattern up and running will make you feel so much better.

Once you get established on separate injections for long acting basal and quick acting bolus things will start to improve. Mixed insulin like you're on at present requires you to feed the insulin with the right amount of carbs which is very restrictive whereas with basal/bolus you choose your carbs and match the insulin dose to cover them. It will give you a lot more flexibility.

Type 1 or Late onset is an auto immune disease where your own body attacks and kills of the insulin producing cells in the pancreas, diet, exercise, weight loss won't make a jot of difference if your beta cells are failing. The only solution is to inject insulin.

Take it slowly, you've already been through the mill. It is a steep learning curve to get insulin and carbs sorted but achievable. I wish you well and hope you start to see improvements very soon. 🙂

Hi and thank you, not once have I ever been told its an auto immune issue, when I first became diabetic they just simply said I'm over weight, when the weight dropped off they didn't do anything, I questioned over and over as to why my bs was getting higher despite weight loss and nothing was explained hence the reason they went completely off track, sent me to gastroenterology and tested me for cancer! It was bizarre, they seem to forget about the diabetes completely, it wasn't until I met this wonderful specialist nurse who took one look at me and said I was desperate for insulin and was most definitely T1.
My health has definitely improved just being in insulin, I think my mind still hasn't caught up with the idea and the last 2 years of struggling.
People on here have told me more and spoke more sense than most health professionals I have been bounced around to for months.
Thank you

 

[Shaz88]

Hi Shaz, welcome to the forum. I'm so sorry that it so long for them to diagnose you as Type 1. Life will be easier, I promise. I've been living with it for 47 years and have had a flipping good life. Carb counting, several finger prick blood tests a day and altering your doses as needed will make a massive difference to the quality of your life. Also, always make sure that you've always got fast acting hypo treatment within easy reach whatever you're doing, and even when you're in bed. You should hopefully find the hypos easier to manage and fewer but they do happen so it's always wise to have that hypo treatment close.

Hi and thank you. I always carry glucose tablets and jelly babies, which I was I formed to eat head first of course But have found now that I am getting used to my bs getting lower I'm not having them as much.
I'm ok pleased you have had a good life I guess your diabetes is well under control. Thank you for your support

 

[Shaz88]

Thank you everyone for your support and messages, much appreciated x

 

[Martin9]

Thank you everyone for your support and messages, much appreciated x

Let us know how you doing in the next few weeks, you had a really hard time, hope it gets better soon !

 

[Maz2]

Welcome to the Forum Shaz88. I am sorry to hear what a terrible time you have had with this. I am shocked it took them so long to work out what the problem was. I am pre-diabetic at present, went back to normal,but back up pre-diabetic levels again.

I joined the Forum a couple of years back to get advice and found everyone enormously helpful. As a result of this I got about halfway through your post and worked out you had a good chance of being a Type I so it surprises me that nurses and doctors did not pick up on it. How awful it must have been for you but I hope now you get the help you need and start to feel better.