My Experience

[SamJermy87]

30th of November 2016 — I have never been good with dates but this is a date that will forever be etched in my mind. The day my whole life was rocked by the words “you have Type 1 diabetes”.

From about early October I had minor symptoms of not feeling refreshed, fatigue, blurred vision and a massive lack of concentration. It wasn’t until the last couple of weeks did the symptoms increase to such severity that I was struggling to just go about my daily life.

In the last two weeks, I lost 7.2kg. I was downing pint after pint of water yet feeling a constant thirst (not just feeling thirsty — but gasping thirst). I was struggling to focus my eyes on what was right in front of me. My brain just didn’t seem to be functioning how it used to. I felt like ****.

I went to the walk-in at my Drs at 07:00 to beat the big line that always forms before 08:00 when the doors open. I went to the walk-in mainly because I couldn’t wait the 3 weeks for an appointment the receptionist gave me on the phone a week earlier (even after explaining that I suspected I had diabetes - so it couldn't have been that serious otherwise they'd have rushed me in.... right?). At this poin, I had come to the conclusion that it was likely going to be Type 2 diabetes due to my high sugar intake (even though I am a fairly slim guy), my lack of exercise and general lack of self care. I suspected I would be in store for a change in diet and some exercise and in a year I will have reversed it (clearly I hadn’t read too much about diabetes at this point — still an element of denial).

Reasons I was in denial and took so long to see a Dr:

• I had always been quite healthy (rarely got ill) and these things never happened to me
• I have an 18 month old son at home and wanted him to only see his strong flawless father (oxymoron I know — stay strong by not seeking medical help!)
• The worry that I could have something that would pass to my child (ignorance really was bliss)
• Fear. My knowledge of diabetes was limited and based on the media stories about increased obesity related diabetes, I didn’t want to accept my legs would drop off, I would get overly fat or just die early!
• Up until this point I had spent my life with an anxiety of needles. No way was I going to accept or even consider I might have a condition that requires multiple needles a day. Nope. Not happening! *shudder*

08:30 I had a finger prick for blood sugar (24mmol/L after 14 hours of un-intentional fasting from the night before), blood tests, urine tested for ketones ( was at ++++) and asked a bunch of questions about my medical history. No auto immune history on my mums side, didn't know my biological fathers die.

09:00 I was being told by my GP that I have diabetes and that she suspected Type 1 based on my results and answers to her questions. She wanted me to go to the hospital to get sorted straight away. I wasn’t even allowed to pop into work round the corner and charge my battery on my phone! It was only on 7%, come on Dr… priorities!

Between 10:00 and 17:45 I was in the Acute Diagnostic Wing at St James Hospital.

This day was a blur (probably due to high blood sugar, fear and exhaustion) but there are a few points I remember quite clearly during this my time at the hospital:

• Being REALLY hungry but terrified to eat a yogurt at 11:00 because I didn’t know what was going to happen if I did. I was still undergoing tests and multiple times waiting long periods in the waiting room for test results to come back. A nice nurse said I was allowed to have something to snack on, I was feeling pretty weak. No yogurt ever tasted as good as that one!
• Sitting in the waiting room nearly in tears a couple of times through the day. I had been told I had Type 1 and what they were testing for ketoacidosis to find out whether I needed to go to a ward with IV drip, or be sent home with insulin. But nobody had yet spent the time to explain what this diagnosis meant for me, for my family, my work, my way of life or anything. The thing that was upsetting me the most was when I thought about my son and the life he would see me lead. A father who couldn’t walk due to massive sores over feet and legs. A father who would die early and not be there for him to buy his first home, get married or have his own children. Looking back it was silly, but these were things I thought would happen as I didn’t know any better.
• SO MANY NEEDLES! I had 3 vials of blood taken while at Drs. I had 8 vials taken while at hospital. My god did I hate needles!
• Meeting my diabetes nurse Claire towards the end of the day who sat down and went through everything with me. She was fantastic. By the end of our long sit down I understood the difference between Type 1 and Type 2. I understood what had happened to my pancreas. I understood what I had to do each day to manage this diagnosis. I understood what it meant to be a ‘good diabetic’ compared to a ‘bad diabetic’. I understood that this was not a death sentence, but a life sentence. Because I still had a life and a way to continue as I always had done (within reason). I actually left that discussion feeling alright about what had happened to me and that I would be ok.

Cue the next day, me standing in the bathroom of my house jumping up and down on the spot grunting loudly to pump myself up mentally to be able to inject my first dose of insulin myself in my FREAKING STOMACH! For the guy with the needle anxiety, this was literally the worst thing ever for me. I would rather have gone through 6 months of severe life threatening illness and come out the other side than this life long FOREVER condition.

Diabetes Type 1 is a condition of definitives.

• I will inject myself FOREVER
• I can NEVER get drunk
• I will ALWAYS have to monitor my levels closely

I wasn’t used to definitives that related to me. I always had choices, always in control and always made the decisions in my life. This felt like this had been taken away from me.

My life now:
I have a pack that I carry with me 24/7, it consists of:

• 1 pen of NovoRapid insulin
• 1 pen of Abasaglar insulin
• 8 needle heads
• 1 finger lancer/pricker
• 2 lancet drum heads
• 1 blood sugar meter
• 1 pot of testing strips
• 1 pack of Dextrose

This was fine for the cold months as the leather case fits in my coat pocket. The summer has been harder. How have you got over this?

9 Months Later
I am a pro at injecting now (but blood tests still have the needle anxiety)
I monitor VERY carefully my sugars with a Freestyle Libre sensor (it's fantastic - finger pricks are so archaic)
I have mostly good/ok days and the occasional bad days
I have accepted and feel like I got this


This was the first 24hrs. Was this different to your experience when you found out?

 

[miahara]

A superbly written article @SamJermy87 - it deserves a wider audience.

I can't comment really as I'm T2, but a pal of mine was diagnosed T1 shortly after my diagnosis however he had to admit himself to A&E as the local quack didn't recognise his symptoms. As it was, after blood tests he was instantly admitted and put on all sorts of drips and tests for about three or four days. He's sorted and stable now and reckons he's got an easier time than I have as he just watches what he eats and injects accordingly.
It was very, very fortunate he was diagnosed when he was as he and I and a couple of other chaps were within 5 days of setting off to a small and very remote Scottish island for a few days and had he become ill rescue would have involved either medevac by 'copter or lifeboat if seas had allowed.

Good to see that you are taking things in your stride so relatively quickly and I hope things continue to become easier.

Best wishes.
Dave

 

[SamJermy87]

A superbly written article @SamJermy87 - it deserves a wider audience.

I can't comment really as I'm T2, but a pal of mine was diagnosed T1 shortly after my diagnosis however he had to admit himself to A&E as the local quack didn't recognise his symptoms. As it was, after blood tests he was instantly admitted and put on all sorts of drips and tests for about three or four days. He's sorted and stable now and reckons he's got an easier time than I have as he just watches what he eats and injects accordingly.
It was very, very fortunate he was diagnosed when he was as he and I and a couple of other chaps were within 5 days of setting off to a small and very remote Scottish island for a few days and had he become ill rescue would have involved either medevac by 'copter or lifeboat if seas had allowed.

Good to see that you are taking things in your stride so relatively quickly and I hope things continue to become easier.

Best wishes.
Dave

Wow, your friend was lucky! I cannot imagine how bad that could have been had he been out somewhere isolated like that!

I have to admit, I don't know too much about Type 2. Your comment about he has it easy compared to you, maybe for him, but for me that's far from the truth. With a million things that impact me, my blood sugars and my insulin sensitivity I find myself dedicating a huge chunk of my time, energy and thoughts into the calculations and reasons behind sudden blood sugar changes. The biggest factor for me is heat and direct sunlight. I walk from my office to the bus stop in the Winter..... all good. I do the exact same in the middle of summer and I'm hypoing 6-7 minutes in and having to stop to eat a bag of haribo!

Where is a good place to find out more about Type 2? I find it so different to what I go through from how people describe it. Makes me wonder why they both have the same name when it seems like they are so different.

 

[miahara]

Wow, your friend was lucky! I cannot imagine how bad that could have been had he been out somewhere isolated like that!

I have to admit, I don't know too much about Type 2. Your comment about he has it easy compared to you, maybe for him, but for me that's far from the truth. With a million things that impact me, my blood sugars and my insulin sensitivity I find myself dedicating a huge chunk of my time, energy and thoughts into the calculations and reasons behind sudden blood sugar changes. The biggest factor for me is heat and direct sunlight. I walk from my office to the bus stop in the Winter..... all good. I do the exact same in the middle of summer and I'm hypoing 6-7 minutes in and having to stop to eat a bag of haribo!

Where is a good place to find out more about Type 2? I find it so different to what I go through from how people describe it. Makes me wonder why they both have the same name when it seems like they are so different.

Well, I really wouldn't agree completely with my friend. He does have good control but has to keep a very close eye on what he eats, but reckons he can eat more or less anything sensible provided he balances it with his insulin injections. In my case I have to take a lot of care in what I eat and avoid high carbs/sugars or my blood sugar level will rise, or due to the fact that I take a sulphonylurea drug can fall to 'hypo' level. Luckily I've only had one 'hypo' in the past year and have now got a pretty good idea as to how and what I eat affects my BG level.
There's a good comparison and explanation of T1/T2 here: http://www.diabetes.co.uk/difference-between-type1-and-type2-diabetes.html
BTW - I'm an underweight T2D

 

[Mike d]

Where is a good place to find out more about Type 2?

Online or here, but can't think of why you'd want to given you're T1. That's enough to take in. If you're a T2 and not insulin dependent, it's an entirely different regime controlled (in the main), by weight. diet and (if necessary) medication. There are other factors of course and common themes between all versions of the condition

 

[SamJermy87]

Where is a good place to find out more about Type 2?

Online or here, but can't think of why you'd want to given you're T1. That's enough to take in. If you're a T2 and not insulin dependent, it's an entirely different regime controlled (in the main), by weight. diet and (if necessary) medication. There are other factors of course and common themes between all versions of the condition

I guess mainly because if I am going to be interacting with other diabetics in the forum T1 & T2 it'd be good to know the difference. I don't know which is easier, harder, what the differences are or even why they have the same name when clearly they are very different. Before my diagnosis my ignorance to both was huge.

 

[Mike d]

Understood @SamJermy87

The argument that all types get lumped in under the general term "diabetes" has been a bone of contention with many insisting they not be separated and others suggesting they should. I don't especially care but I read what's relevant to me but gravitate to reading all members comments irrespective of type. As you're new to it, just read and do what I did. Stick to your type (in the main) but pick up the T2 postings and you'll discern the differences.

This is just my opinion, but T2 is an easier path if one had a choice. Success stories abound on both "sides" and the tips are valuable, regardless of type

 

[mark4785]

I was age 14 when I was diagnosed as a Type 1 Diabetic by my GP. in 2004 Like you, the GP did not explain what T1 was to me before admitting me to hospital so the interim period between the surgery and hospital was filled with anxiety. It did cross my mind that I had perhaps been diagnosed with something that would kill me, especially given that the GP had banged his head on a cupboard he was crouched under at the point that the blood sugar meter registered my reading of 30 m/mol.

Having reached the hospital I was directed to a ward with my Dad and I immediately had blood taken from my arm and was injected with insulin. My Mum joined us shortly thereafter who was crying heavily. Several hours went by and still there had been no explanation as to what T1 was. The medical staff just seemed to be monitoring me and debating whether I could go home or not. Eventually I was given Mixtard insulin (now defunct; equivalent medication is called Humulin presently) which is a mix of fast and slow acting insulin and was told how much to inject and when. This was followed up by numerous home visits by a Nurse from the hospital who explained what T1 was and helped my parents to physically manage my condition; for several years my mum and dad took it in turns to administer the insulin injections and finger pricking as I had had a needle phobia from birth. I could not and still cannot under any circumstances inject into my stomach but eventually got the courage to inject into my thigh and take blood sugar readings from my calf.

Due to an unrelenting needle phobia, NICE permitted my use of a Medtronic insulin pump in 2009 and I self-fund the Libre system so I no longer have to jab/prick myself with the exception of the pump cannula replacement regime.

So like the OP I transitioned from being scared and uninformed but this transitioned to a more positive outlook.

 

[nomoredonuts]

An absorbing and honest ( and hopefully cathartic) account of your journey so far, @SamJermy87 . For what it's worth, I get the impression that you will tackle this head-on, and put your T1 in it's place. It's part of your life, not your whole life. As a T2, I really haven't tried to understand "the other side" as I have enough to do managing my own condition. I don't win everyday, and you won't either. I just win most of the time. That's enough. All the very best.

 

[SamJermy87]

Thanks guys (apologies for the slow reply - been a hectic few weeks).

Yeah, it feels good to talk about experiences. It's been super reassuring reading often that other people are going through the same stuff I am though!

 

[Freema]

30th of November 2016 — I have never been good with dates but this is a date that will forever be etched in my mind. The day my whole life was rocked by the words “you have Type 1 diabetes”.

From about early October I had minor symptoms of not feeling refreshed, fatigue, blurred vision and a massive lack of concentration. It wasn’t until the last couple of weeks did the symptoms increase to such severity that I was struggling to just go about my daily life.

In the last two weeks, I lost 7.2kg. I was downing pint after pint of water yet feeling a constant thirst (not just feeling thirsty — but gasping thirst). I was struggling to focus my eyes on what was right in front of me. My brain just didn’t seem to be functioning how it used to. I felt like ****.

I went to the walk-in at my Drs at 07:00 to beat the big line that always forms before 08:00 when the doors open. I went to the walk-in mainly because I couldn’t wait the 3 weeks for an appointment the receptionist gave me on the phone a week earlier (even after explaining that I suspected I had diabetes - so it couldn't have been that serious otherwise they'd have rushed me in.... right?). At this poin, I had come to the conclusion that it was likely going to be Type 2 diabetes due to my high sugar intake (even though I am a fairly slim guy), my lack of exercise and general lack of self care. I suspected I would be in store for a change in diet and some exercise and in a year I will have reversed it (clearly I hadn’t read too much about diabetes at this point — still an element of denial).

Reasons I was in denial and took so long to see a Dr:

• I had always been quite healthy (rarely got ill) and these things never happened to me
• I have an 18 month old son at home and wanted him to only see his strong flawless father (oxymoron I know — stay strong by not seeking medical help!)
• The worry that I could have something that would pass to my child (ignorance really was bliss)
• Fear. My knowledge of diabetes was limited and based on the media stories about increased obesity related diabetes, I didn’t want to accept my legs would drop off, I would get overly fat or just die early!
• Up until this point I had spent my life with an anxiety of needles. No way was I going to accept or even consider I might have a condition that requires multiple needles a day. Nope. Not happening! *shudder*

08:30 I had a finger prick for blood sugar (24mmol/L after 14 hours of un-intentional fasting from the night before), blood tests, urine tested for ketones ( was at ++++) and asked a bunch of questions about my medical history. No auto immune history on my mums side, didn't know my biological fathers die.

09:00 I was being told by my GP that I have diabetes and that she suspected Type 1 based on my results and answers to her questions. She wanted me to go to the hospital to get sorted straight away. I wasn’t even allowed to pop into work round the corner and charge my battery on my phone! It was only on 7%, come on Dr… priorities!

Between 10:00 and 17:45 I was in the Acute Diagnostic Wing at St James Hospital.

This day was a blur (probably due to high blood sugar, fear and exhaustion) but there are a few points I remember quite clearly during this my time at the hospital:

• Being REALLY hungry but terrified to eat a yogurt at 11:00 because I didn’t know what was going to happen if I did. I was still undergoing tests and multiple times waiting long periods in the waiting room for test results to come back. A nice nurse said I was allowed to have something to snack on, I was feeling pretty weak. No yogurt ever tasted as good as that one!
• Sitting in the waiting room nearly in tears a couple of times through the day. I had been told I had Type 1 and what they were testing for ketoacidosis to find out whether I needed to go to a ward with IV drip, or be sent home with insulin. But nobody had yet spent the time to explain what this diagnosis meant for me, for my family, my work, my way of life or anything. The thing that was upsetting me the most was when I thought about my son and the life he would see me lead. A father who couldn’t walk due to massive sores over feet and legs. A father who would die early and not be there for him to buy his first home, get married or have his own children. Looking back it was silly, but these were things I thought would happen as I didn’t know any better.
• SO MANY NEEDLES! I had 3 vials of blood taken while at Drs. I had 8 vials taken while at hospital. My god did I hate needles!
• Meeting my diabetes nurse Claire towards the end of the day who sat down and went through everything with me. She was fantastic. By the end of our long sit down I understood the difference between Type 1 and Type 2. I understood what had happened to my pancreas. I understood what I had to do each day to manage this diagnosis. I understood what it meant to be a ‘good diabetic’ compared to a ‘bad diabetic’. I understood that this was not a death sentence, but a life sentence. Because I still had a life and a way to continue as I always had done (within reason). I actually left that discussion feeling alright about what had happened to me and that I would be ok.

Cue the next day, me standing in the bathroom of my house jumping up and down on the spot grunting loudly to pump myself up mentally to be able to inject my first dose of insulin myself in my FREAKING STOMACH! For the guy with the needle anxiety, this was literally the worst thing ever for me. I would rather have gone through 6 months of severe life threatening illness and come out the other side than this life long FOREVER condition.

Diabetes Type 1 is a condition of definitives.

• I will inject myself FOREVER
• I can NEVER get drunk
• I will ALWAYS have to monitor my levels closely

I wasn’t used to definitives that related to me. I always had choices, always in control and always made the decisions in my life. This felt like this had been taken away from me.

My life now:
I have a pack that I carry with me 24/7, it consists of:

• 1 pen of NovoRapid insulin
• 1 pen of Abasaglar insulin
• 8 needle heads
• 1 finger lancer/pricker
• 2 lancet drum heads
• 1 blood sugar meter
• 1 pot of testing strips
• 1 pack of Dextrose

This was fine for the cold months as the leather case fits in my coat pocket. The summer has been harder. How have you got over this?

9 Months Later
I am a pro at injecting now (but blood tests still have the needle anxiety)
I monitor VERY carefully my sugars with a Freestyle Libre sensor (it's fantastic - finger pricks are so archaic)
I have mostly good/ok days and the occasional bad days
I have accepted and feel like I got this


This was the first 24hrs. Was this different to your experience when you found out?

Thanks for sharing I could really feel your chok and the impact This disaster had On you , But really inspirering and must say you are doing amazingly congratulations remember to be proud of yourself managing This life sentence so well

 

[SamJermy87]

Thanks for sharing I could really feel your chok and the impact This disaster had On you , But really inspirering and must say you are doing amazingly congratulations remember to be proud of yourself managing This life sentence so well

Thanks! I have a good support network around me. But there are still days I struggle with the depth of it all (even with these amazing people around me).

Couple weekends ago I went to a Diabetes UK organised "away day" where a bunch of T1 got together in Leeds. It was fantastic. Was really good to speak to people going through the same stuff (albeit at different stages and ages). I massively recommend checking it out - Link

 

[Snapsy]

What a terrific post, @SamJermy87 - thank you for sharing your story. Beautifully written, and it sounds like you're armed with the right tools for dealing with it!