Feeling lost and scared

[MissZButler]

Hi all,
Its my first time posting in here - and probably the first time I'm being completely honest with myself about my feelings about my new diagnosis. I'm 24 years old.
At the beginning of February, I went on a skiing holiday to Bulgaria with my sister - and 2 days in began to feel lethargic, nauseous (vomiting when I ate), weight loss and excessively thirsty. I put this all down to me having never coped with altitude sickness - however I quickly became very unwell and ended up on the intensive care unit with DKA and a diagnosis of Type 1 diabetes. None of the care team spoke English so the language barrier made the diagnosis very difficult to understand and it was the most scary time of my life. I was told I was very lucky to be alive.

I have since been able to come back to the UK on Novarapid for meals and Lantus at nighttime. I have been referred to the local diabetes team and have been checked up on by my GP surgery.

In all honesty I'm really struggling to come to terms with it all - before my diagnosis I was always so busy and active - but at the moment it feels as though my world has come to a sudden stop. What's worse is that family members are avoiding me - I think because they too are struggling to come to terms with it - which has left me feeling very lonely whilst trying to process everything.

I wanted to ask everyone's advice about how you dealt with the diagnosis and what helped you get back to your normal lives afterwards. I'm finding at the moment even the slightest changes sent my blood sugars so erratic. I know I will need to take one step at a time - its just difficult to not get disheartened.
Thank you for your time

 

[Goonergal]

Hi @MissZButler and welcome to the forum

Type 2 here, so no specific advice, but tagging some friendly type1s who may be able to help @Diakat @Juicyj @Jaylee @Antje77 @urbanracer

 

[Jaylee]

Hi all,
Its my first time posting in here - and probably the first time I'm being completely honest with myself about my feelings about my new diagnosis. I'm 24 years old.
At the beginning of February, I went on a skiing holiday to Bulgaria with my sister - and 2 days in began to feel lethargic, nauseous (vomiting when I ate), weight loss and excessively thirsty. I put this all down to me having never coped with altitude sickness - however I quickly became very unwell and ended up on the intensive care unit with DKA and a diagnosis of Type 1 diabetes. None of the care team spoke English so the language barrier made the diagnosis very difficult to understand and it was the most scary time of my life. I was told I was very lucky to be alive.

I have since been able to come back to the UK on Novarapid for meals and Lantus at nighttime. I have been referred to the local diabetes team and have been checked up on by my GP surgery.

In all honesty I'm really struggling to come to terms with it all - before my diagnosis I was always so busy and active - but at the moment it feels as though my world has come to a sudden stop. What's worse is that family members are avoiding me - I think because they too are struggling to come to terms with it - which has left me feeling very lonely whilst trying to process everything.

I wanted to ask everyone's advice about how you dealt with the diagnosis and what helped you get back to your normal lives afterwards. I'm finding at the moment even the slightest changes sent my blood sugars so erratic. I know I will need to take one step at a time - its just difficult to not get disheartened.
Thank you for your time

Hi @MissZButler ,

Welcome to the forum.

I was diagnosed as a kid. & that was it. Lucky it was the start of the summer holiday & I was back "on it" come September.
I empathise that it's the last thing you'd expect when going on holiday..
Take the adjustment to diabetes in your own time..

There is a lot of great tech to be used these days to help fell free to ask regarding user experience. No question is too silly.

Oddly enough, one our T1 members is currently on a skiing holiday? @Juicyj .
I'm sure she will be only to happy to say hello when she picks this up.

Talking of "busy." I got to scoot off to work.

All the best!

J>

 

[Diakat]

Acceptance comes in stages. Diagnosis is a bit like a bereavement- you have lost your old life. So there is sorrow and anger and a feeling of why me?
Diabetes is not the worst disease out there, yes it is a pain and unfair but we can manage and work and live.
Your erratic numbers at the moment are probably due to your body still making some insulin. Known as the honeymoon phase. This will settle over time.
Keep talking here and ask your questions.

 

[JMoli]

Hi, I just wanted to send some hugs - I was diagnosed in January and it came as a massive shock. I don’t think I’ve fully accepted it myself, I didn’t know anything about diabetes when I was told (no history of it in the family, I’m in my 40s, slim, active etc) it just all felt unreal and my family were all a bit in denial. There are a few of us here that have been recently diagnosed too and there’s so much support so please don’t feel alone xx

 

[MissZButler]

Hi @MissZButler and welcome to the forum

Type 2 here, so no specific advice, but tagging some friendly type1s who may be able to help @Diakat @Juicyj @Jaylee @Antje77 @urbanracer

Thank you x

 

[MissZButler]

Hi @MissZButler ,

Welcome to the forum.

I was diagnosed as a kid. & that was it. Lucky it was the start of the summer holiday & I was back "on it" come September.
I empathise that it's the last thing you'd expect when going on holiday..
Take the adjustment to diabetes in your own time..

There is a lot of great tech to be used these days to help fell free to ask regarding user experience. No question is too silly.

Oddly enough, one our T1 members is currently on a skiing holiday? @Juicyj .
I'm sure she will be only to happy to say hello when she picks this up.

Talking of "busy." I got to scoot off to work.

All the best!

J>

Thank you very much for the advice.
Yes I have seen some of the great tech, as I have a friend who has had diabetes from the age of 3...and uses a pump and the free style glucose monitor.

I have asked about them, but I’ve been told not to run before I can walk, and that it will be sometime until I can go onto those.

I think it’s all going to be about being patient and positive.

 

[MissZButler]

Acceptance comes in stages. Diagnosis is a bit like a bereavement- you have lost your old life. So there is sorrow and anger and a feeling of why me?
Diabetes is not the worst disease out there, yes it is a pain and unfair but we can manage and work and live.
Your erratic numbers at the moment are probably due to your body still making some insulin. Known as the honeymoon phase. This will settle over time.
Keep talking here and ask your questions.

Yes I have definitely had a real rollercoaster of emotions- mostly so because I really wanted to start a family with my partner in the not so distant future, however I know at the moment for my own well-being I need to get my sugars under control first.

To say I’m gutted that there is now the complications of diabetes and pregnancy would be an understatement... I’ve had moments when I’ve thought why did it have to be now?

 

[MissZButler]

Hi, I just wanted to send some hugs - I was diagnosed in January and it came as a massive shock. I don’t think I’ve fully accepted it myself, I didn’t know anything about diabetes when I was told (no history of it in the family, I’m in my 40s, slim, active etc) it just all felt unreal and my family were all a bit in denial. There are a few of us here that have been recently diagnosed too and there’s so much support so please don’t feel alone xx

Thank you , it feels nice to know that I’m not alone - and I’m sorry to hear you’ve had a tough time too.
Yes that’s one thing that is bothering me, before being diagnosed I was so active and fit, but now I’m having to take everything slowly - I just want to get back to being fit.
Weight gain after going on insulin is not helping my mood!

 

[Diakat]

Hugs @MissZButler
Flag the intention for your team so they are aware. When things settle a little ask them about a1c targets for pregnancy and if there is a pre-conception clinic.
Remember plenty of diabetic women have healthy pregnancies and healthy babies.

Edited for hasty running together of words!

 

[KK123]

Hi @MissZButler, although many of us have type 1 our circumstances are all very different. I was diagnosed in my 50s but that is VERY different to being diagnosed in your 20s which is different again to when you're a toddler. A toddler for example, will grow up knowing no difference and an oldie like me may have a 'well at least the kids are out the way and my career is well established'.

I truly feel for you because it is a life changing condition and does require a whole lot of effort on your part to manage. At this stage as others have said, you are still coming to terms with it and this can take months/years. I am confident though that you WILL learn how to manage it and you WILL be able to live a normal life and be as active as you want to be. That might seem like a long way off but as the months go by you will realise that you DO have a lot of control over your body. I imagine the 'tech' will come a little later because at first your medical team will be wanting to see how your body is coping & reacting to the insulin (especially in the honeymoon period) and will want to help you get into a routine that allows you to manage your diabetes 'naturally' as it were until it settles down a bit and becomes more stable. At this point I am sure you will benefit massively from all the tech that is available.

We are all rooting for you but none of us can say 'don't worry, it'll all be fine, you can be normal' etc and expect you to be reassured instantly, because right now you are grieving for your old carefree life and it must seem insurmountable. It's true though!

I suspect that your friends/family are not avoiding you in a malicious way but they probably don't know what to say to you. It's like avoiding someone who has lost someone close, you're not sure what to say so you avoid them. Maybe YOU should get hold of them and be very open about what has happened, if they see you willing to talk about it, I am sure they will be very supportive.

Above all, be kind to yourself, try to stay as calm as you can, research as much as you can, be proactive when talking to your medical team and ask them (or us) as many questions as you can. I think we would all agree that a person who is interested in their diabetes is far more likely to remain healthy and active than someone in denial, and by posting here you are clearly in the former category and that will go far when you decide to have your beautiful babies. xx

 

[MissZButler]

Hi @MissZButler, although many of us have type 1 our circumstances are all very different. I was diagnosed in my 50s but that is VERY different to being diagnosed in your 20s which is different again to when you're a toddler. A toddler for example, will grow up knowing no difference and an oldie like me may have a 'well at least the kids are out the way and my career is well established'.

I truly feel for you because it is a life changing condition and does require a whole lot of effort on your part to manage. At this stage as others have said, you are still coming to terms with it and this can take months/years. I am confident though that you WILL learn how to manage it and you WILL be able to live a normal life and be as active as you want to be. That might seem like a long way off but as the months go by you will realise that you DO have a lot of control over your body. I imagine the 'tech' will come a little later because at first your medical team will be wanting to see how your body is coping & reacting to the insulin (especially in the honeymoon period) and will want to help you get into a routine that allows you to manage your diabetes 'naturally' as it were until it settles down a bit and becomes more stable. At this point I am sure you will benefit massively from all the tech that is available.

We are all rooting for you but none of us can say 'don't worry, it'll all be fine, you can be normal' etc and expect you to be reassured instantly, because right now you are grieving for your old carefree life and it must seem insurmountable. It's true though!

I suspect that your friends/family are not avoiding you in a malicious way but they probably don't know what to say to you. It's like avoiding someone who has lost someone close, you're not sure what to say so you avoid them. Maybe YOU should get hold of them and be very open about what has happened, if they see you willing to talk about it, I am sure they will be very supportive.

Above all, be kind to yourself, try to stay as calm as you can, research as much as you can, be proactive when talking to your medical team and ask them (or us) as many questions as you can. I think we would all agree that a person who is interested in their diabetes is far more likely to remain healthy and active than someone in denial, and by posting here you are clearly in the former category and that will go far when you decide to have your beautiful babies. xx

Thank you, this has really helped cheer me up.

I had a little victory today and went skiing for the first time since I’ve been diagnosed- my sugars jumped a bit but other than that it went really well

Keeping positive thoughts

 

[KK123]

Thank you, this has really helped cheer me up.

I had a little victory today and went skiing for the first time since I’ve been diagnosed- my sugars jumped a bit but other than that it went really well

Keeping positive thoughts

Well done you! Everybody's glucose levels rise during exercise so that's natural, just keep an eye out for any lows later. x

 

[Daibell]

Hi. You are one of many in the Diabetes club so not alone. You will rapidly come to terms with it as you learn what works for you and how to manage your insulin for a normal life. Diet-wise keep the carbs down to some extent to minimise blood sugar (BS) swings. Ensure you get some advice for controlling your Lantus from the nurse or come back here if you can't get that advice. You may currently be on fixed doses of the Novorapid for each meal which is common for Newbies. You may also have been started on a low (safe) dose. If so you should be started on carb-counting the Novo shortly which means adjusting the shots to suit the carbs in each meal. Do ask if the advice isn't given. Once balanced with carb-counting you should find you have good control and as long as you test often enough your worries should recede. Believe me you will soon become used to the insulin routine and it will hardly affect your life. Do make sure you test before and during driving though following DVLA guidelines; it does make sense.

 

[Sgathach]

Heya, I'm also newly diagnosed, early 30s and was fit and active before.
I can totally sympathize with the language barrier, I am not in the UK right now and had to get my diagnosis in very basic terms and without a lot of explanation. When I was told I needed insulin there was no care team to ask or even being shown how to use the needle - my friends had to go to the pharmacy with me as I had a complete breakdown upon finding out, and then explain and translate everything to me after.
Since then, I've basically had to self experiment with food and insulin doses and exercise, I'm checking my blood 10x or more a day to find what works and what doesn't, worry about if I need to eat more before bed, how low is my sugar likely to drop - it is scary but this forum is super helpful and supportive with a lot of information.

For now, I feel I'm accepting it sort of - my eyesight is changing a lot and I know if I can't control my sugars I can go blind. Or lose my foot. My exercise (martial art) is super important to me, so I am doing my best to manage it so I can do what I care about. Maybe there is something you really want to be able to achieve or do, and that helps, I find.
I also looked up people with diabetes 1 and actually found an athlete in my sport who is winning championships - so that was inspiring and showed me that diabetes doesn't need to hold me back.
Hope this helps a bit, one day at a time

 

[Resurgam]

The technology for testing and controlling insulin input has altered so much in the last few years and its availability is improving - the insulin has changed too, there are options and alternatives. Even the emergency treatment for a hypo has been made more accessible.
Whilst it is a blow to need it - it is there, and hopefully the improvements will continue into the foreseeable future.

 

[jenny707]

Yes I have definitely had a real rollercoaster of emotions- mostly so because I really wanted to start a family with my partner in the not so distant future, however I know at the moment for my own well-being I need to get my sugars under control first.

To say I’m gutted that there is now the complications of diabetes and pregnancy would be an understatement... I’ve had moments when I’ve thought why did it have to be now?

I am pre diabetic but had just tipped over into type 2 but with the help of the low carb program on this site I am back to pre diabetic I just wanted to say that my mum is 86 and her mum was a type 1 diabetic from her 20's and had my mum that long ago with type 1 diabetes so don't give up hope of having a family as things have greatly improved in 86 years

 

[Jaylee]

Thank you very much for the advice.
Yes I have seen some of the great tech, as I have a friend who has had diabetes from the age of 3...and uses a pump and the free style glucose monitor.

I have asked about them, but I’ve been told not to run before I can walk, and that it will be sometime until I can go onto those.

I think it’s all going to be about being patient and positive.

To a degree your HCPs have a point.. I've never personally been into the idea of a pump. (So can't help regarding the potential benefits there.)

Howevaaaaah. Some sort of CGM style set up as a monitor is a great idea whilst you find your own "running shoes."

Sounds like you already have yer ski boots back on. I'm confident you will get there.

It isn't "game over." Just a slightly different set of rules to play safe by!



.

 

[micksmixxx]

{{{{{Hugs}}}}} to you, MissZButler.

I may not know you personally, ma'am, but I'm truly sorry to 'hear' of your diagnosis. As others have already stated, though, it's NOT the end of the World. You WILL survive AND you will get used to the idea of dealing with your blood sugar (glucose) levels. It does take time before your knowledge and experience builds up, ma'am, but being so young, you've got plenty time on your hands.

I was diagnosed at the age of 21, shortly after I'd left the British Army. I knew a little bit about biology, so was aware that some of the symptoms I was experiencing were NOT 'normal'. (I lost almost 28 pounds in weight in the space of 4.5 days ... that was according to my doctor's scales. I was peeing like it was an Olympic event and I was representing my country (I was going about every 20 minutes or so, through both the day and the night. That got so bad that I was having 'accidents' in the bed, which I found extremely embarrassing.) With the amount I was drinking, it started me thinking along the lines of bladder infection, kidney infection, prostate problem and the like.)

I didn't mention to my doctor that I was peeing the bed so, initially, he was treating me for a urinary tract infection (UTI). He did carry out the usual sorts of tests/questioning that you get when you go to see a GP. (Blood pressure/weight/eyesight, etc.) (The test result came back indicating that I didn't actually have a UTI, which surprised me a little as I'd been treated for them repeatedly over previous years.)

It was on my second visit to see him that he noticed there'd been an obvious weight loss, or change in appearance. That's when he weighed me again to see how much I'd lost in just a few days. He asked me to get a receptacle from the surgery staff and to produce a sample of urine ... there was no such thing as home blood glucose meters in those days. On testing the urine with a dipstick it turned bright orange in appearance. This indicated that there was a high concentration of sugar (glucose) present. He started writing out a letter for me to take to the hospital, so I asked how urgent it was as I'd need to book time off work. He stated that I needed to go right now to my local hospital, where they kept me in. Blood tests were taken there and later that same afternoon I started on insulin injections. (That was a bit of a bind for me as I'd had an experience during my Army service where, if you're serving abroad, you are given various injections to cover you against various diseases. I had a needle break off in my arm due to lack of experience of the medic who was administering the injection. It had to be removed using artery forceps, which left me reluctant to receive injections thereafter.)

During my hospital stay, which was 6 or 7 days long, I was successfully able to inject myself, after being taught how, but I believe that was more down to bravado than me understanding the importance of taking injections. When I was discharged home, it used to take me an hour or hour and a half to get the damned needle into me. It was almost as though as I was pushing the syringe towards myself I was turning away from it.

I appreciate the language difficulties you must have experienced, ma'am, but my experience over here, with English-speaking nursing staff, wasn't much different. I had people, from all sorts of directions, trying to bombard me with so much information, I simply couldn't retain all that was being said.

I must say, I also found it very difficult to come to terms with. How could this be happening to me? I was, at that time, a 'super-athlete' ... used to run marathons, representing my Regiment, etc. and even on discharge I used to run marathons wearing a rucksack full of housebricks (a way of showing people how 'hard' I was. lol.), raising money for charities and the like. (It didn't help matters as my dad was continually trying to reassure me that I wasn't diabetic. He put it down to all the innoculations I'd received during my Army service. ;-))

Might I suggest that when you do get to see YOUR diabetes support team that you request your name to be put forward to attend a DAfNE course? (DAfNE is an acronym for Dose Adjustment for Normal Eating.) These are run by diabetes specialists ... doctors/endocrinologists/diabetes specialist nurses/certified diabetes educators/dietitians ... who will give you a fantastic range of knowledge in how to successfully deal with your diabetes, and what to do if things start to go awry. (Many diabetes support teams will often provide you with contact details, such as telephone numbers, email addresses, etc. where you can contact someone urgently ... if the need arises.)

I certainly appreciate that you feel that your world has "come to a sudden stop". That, psychologically, is very common. (In the days when I was diagnosed I was told by the diabetologist that I'd have to give up all that fitness lark. Obviously, thinking has progressed since those days, and exercise is deemed good for maintaining good blood glucose control. I, actually, didn't listen to his advice and ran the first Sandwell marathon (Sandwell is the area of the country where I live. It's in the West Midlands.) I need to 'prove to myself' that I could still do things.

Having met up with other diabetics, at my local diabetes clinic, based at my local hospital, I learned just how damaging diabetes can be on the body. I met a former work colleague, who had kept his diabetes hidden from our employer, who was sat in a wheelchair. I didn't know why he was sat in a wheelchair, but the next time I saw him he'd had one of his lower legs amputated. The time after that, when I saw him, he'd had all of his other leg amputated. Of course, I needed to ask him what had happened, and he told me that it was because he hadn't been taking care of his diabetes. That shocked me as I really had very little idea of the consequences of not taking care of it. It made me sit up and take notice of just what I was doing to myself.

I apologise to you, most profusely, if I've frightened you with the above. That was NEVER my intent. I was simply attempting to guide you to the importance of taking good care of yourself.

You mentioned that prior to your diagnosis you used to be "always so busy and active". Are you still busy and active? I ask this as when you get busy and/or exercise, this stimulates your adrenal glands ... tiny glands that sit above each kidney ... to produce a hormone called epinephrine (adrenaline). The production of this hormone pushes your blood sugar level up, primarily because your body is unsure of why there's a sudden change in your exercise pattern. i.e. you're in a 'fight or flight' situation. You're either preparing to stand and fight against an aggressor or you're preparing to run away so that you can fight another day. In someone that's not diabetic, these changes in blood sugar would stimulate the pancreas to either produce insulin, which allows glucose to pass from your bloodstream into your muscles, where it is used to create energy, or produce glucagon, which stimulates some of its stores of glycogen. Glycogen is easily converted back into glucose, in order to replenish what's been used from your bloodstream.

You are also likely to experience in blood glucose control if you're going through a period of anxiety/worry. Many many years ago it used to be believed that this raising of blood glucose, in terms of anxiety, only occured in life-threatening situations, such as if you'd been involved in a car accident, your house was on fire, you were involved in a 'fire-fight', etc. but it's been recognised that many types of anxiety/worry and the like can have a similar effect.

As others have stated, ma'am, you should mention to your diabetes support team of your intention to have a baby and they will advise, and support you, in maintaining good blood glucose control. Obviously, raised blood glucose levels would NOT be good for you, but they'd be even more dangerous for an unborn child that you'd be carrying.

Let me tell you, MissZButler, that compications do NOT appear overnight. You'd need to go for quite lengthy periods of time with poorly controlled blood glucose levels before anything untoward would happen.

You are so correct that you'll need to take things one step at a time, ma'am, but you'll find that there's an immense amount of knowledge AND support on here. People will always offer their opinion on what you need to do differently, or what needs to change to get your control back to how it should be.

I wish you well, MissZButler, and hope you'll let us all know when you become pregnant and how you're doing at any other time. SOME of us have a genuine interest.

Lots of Love and Light.

Mick
x x x x
x x x

P.S. Please don't be offended, or alarmed, at the 'x's'. It's merely a logo, of sorts, that I've used for the past 40-odd years.