New Type 1 Diabetic

[MisplacedIdentity]

Hi!
I was feeling rubbish with hot and cold sweats and thought I was starting menopause so after a couple of weeks of feeling rubbish, eating chocolate and drinking lucozade to keep my energy levels up I finally booked myself a doctors appointment and was asked to attend hospital for a blood test.

I decided the blood test could wait, there was no rush so I got it done 2 days after being advised. Then everything went crazy!

Monday Doctor appointment

Tuesday slept all day on the sofa, I had no energy aand only went out to fetch my Daughter from college.

Wednesday my eyes were foggy this was a new experience, my Hubby came home from night shift and took me to get my bloods done, I wasn't going to take the chance and drive.

Thursday my vision was ok .... not great but I had to work, I had an event planned which only I could run. The Doctors surgery called me at 10am telling me I must get to the surgery asap. I told them I was working until 4pm, so carried on with my day, after all I had lucozade and chocolate to keep me going.
I then went to the surgery and sat waiting for over an hour, becoming more anxious ..... what was so important? The BANG .... I was told I was dangerously dehydrated, my blood was acidic and I was type 1 diabetic. I was instructed to go straight to hospital.
I drove home in tears, slammed the car door, slammed the house door, threw my phone, keys and bag into the lounge and sobbed my heart out on the stairs (new lounge carpet no shoes allowed).
Then my Hubby drove me to hospital where I sat in majors for 2 hours, once on a bed my blood pressure was low, a saline drip was put in place then I went all weak and woozy to rushed through to resuss. I had a lot of people around me, another canula was put in and a Doctor was squeezing a bag to get it in me quicker. I sent my Hubby home to our children.
By 3am I had 3 bags of saline and insulin was now being pushed in me, I then got moved to a ward with hourly obs done.

Why me? noone in my family had type 1, what did I do to myself? There is no way I had dehydrated myself, I was drinking 12 x 500ml a day! I was fit, active, lost 3 stone to keep myself healthy (still overwieght) was at the gym 3 times a week and swam twice a week as well as an active job!

8 bags of saline and 3 bags of insulin later I was broken hearted, couldn't control my anger, frustration, it felt like I had lost something and I was grieving. my level was 32! no idea what that meant!

Friday evening the drips were removed and injections started. What was I allowed to eat? I had no idea and the menu lady couldn't advise me as she was new. So I had cornflakes, BIG MISTAKE. My level was 14 then after eating it was 22 so no cornflakes for me. I had no idea what they meant by levels but I knew it was bad so again I felt guilty, I had made myself worse by eating!

Saturday - so now I've started to calm down, the ward staff were amazing, had no sleep due to hourly obs. The Diabetic team came to see me, this made my heart brake even more. I was told I'll be insulin dependant for life! She didn't leave me with anything as I was a wreck. I cried myself to sleep that night. The ward staff told me that the mental health team would visit me on monday, they never came.

Sunday - I've been moved to another ward to be with other diabetics. Three ladies were discussing which toes they were having removed, how was this supposed to help me? I sobbed, I'm going to lose my toes too? one lady was having her whole foot off! Will I lose my foot too? My Parents drove 3 hours to visit me, this was the hardest part, I felt that I had let them down, I couldn't be home with my children, my Hubby was running around trying to work, run the house, do the childcare, visit me, he was exhausted and it was all my fault. When my Parents left I cried myself to sleep again.

Monday I was informed I could go home at 10:30am after the diabetic team had been to see me. I had no idea how to look after myself, how was I going to cope? the team came to see me and said I was ready to go. I asked them .... how do I get my insulin? do I need to come back every 4 hours? they were confused as my notes stated that I had been shown how to use my pen. I saw my pen on friday night then it was lost with my folder. Staff were injecting me with syringes I didn't know what to do, how to set it up I just knew that I needed it.

2 hours later I was trained and then could leave but had to wait for the mental health team, the dietitian and 3 canulas to be removed. by 6pm the nurses asked why I hadn't gone home yet!!!!!! So I told them who I was told to wait for, the dietitian had gone home. There was noone available from the metal health team. So canualas were removed and I was discharged.

The drive home was scary, it was like being on a roller coaster, my eyes were blurry, nothing made sense. I got home and hugged my children then fell apart again. Had a nice relaxing bath and sobbed myself to sleep.

Tuesday - day one at home with very poor vision, feeling wobbly, having to sit a lot, still asking myself why me, what did I do wrong to make myself ill? how can I lose weight, get fit and still end up being a diabetic? how was I going to work? I'm self employed, I have to work there is no sick pay. I spent the day in tears, making a cup of tea for myself was hard as I couldn't see the rim of the cup, I had to feel which caused me to pour boiling water on my finger but no burns luckily.

Wednesday - my Hubby had to go to work, this was really scary, a friend came and spent most of the day with me.
Thursday - my first offical day on my own - my vision was still bad but by now my Hubby had bought me some tesco 3.5 reading glasses, I'm wearing these over the top of pound shop 1.5 reading glasses so now I can see, read, use my laptop.

As the week went on I woke every day and felt gutted as I couldn't see the clock, who knew what time it was! Double glasses to read a well lit clock!

Today is day 17 since being diagnosed. I'm no longer tearful. I'm still wearing double glasses though can't walk with them on as I get motion sickness. I've not been out of my home for 6 days as it's scary to step out, I'm safe in my home.

Monday I have a consultant appointment as 12 in one hospital followed by an appointment with my diabetic nurse as 2pm at another hospital.
Tuesday is bag packing day to visit family for Christmas.
Wednesday foot check and flu jab then venture out of the house for a 3 hour journey as a passenger in my Hubby's car which I'm dreading.

To top this all off my Mother in Law was rushed into hospital and she's awaiting an operation today for a ruptured aneurysm. My Hubby has been torn, leave me to go to his Mom or stay and carry on as his sibblings are there. This had made me feel even more guilty and very low in myself BUT I'm not tearful.

I've now learnt how to make a cup of tea and feed myself with blurry vision and have been advised to give my eyes at least another 2 weeks before seeking advice from the opticians.

Prescriptions have cost me a fortune, I've chased up my doctors surgery to find out when my exemption card will come, they haven't processed it yet so will be paying for me next prescription too.

There is an 8 month wait for retinal screening so I might find out how much it will cost if I go private.

Christmas will be strange this year and I know I've refered to my children a lot but they are 17 and 18 now. My Daughter is 100% reliant on me due to her anxiety issues and lack of confidence but she's starting to become independent, she's learning how to get herself too and from college. My Son is amazing, he is dyspraxic and has suddenly grown up, he seeked help from college to change his journey to and from as I was dropping him half way so he only had one bus to deal with. My Hubby has done his best to fully support them both whilst working and visiting me.

I'm very lucky to have an amazing family and I'm no longer angry with my condition. We are learning to deal with is as a family.

This was supposed to be a short post so I totally understand anyone who chooses not to read it. I'm also hoping that it will help anyone else out who have gone through the same process.

Thanks for reading. Onwards and Upwards to 2019!

 

[Circuspony]

Hang on in there! I was diagnosed 18 months ago at the age of 43 and the chaos of the first few weeks does get better. You get into a routine with injections, work out what you can / cannot eat and your eyes slowly settle.

It is really hard for anyone on the outside to really understand what a new T1 diagnosis means. It changes your life. But you will learn to adapt and so will your family.

Do you have a local optician? Mine has a look at the back if my eyes while I was waiting for the hospital appointment. Just made me feelbetter there was no obvious damage.

No history of T1 in my family either. Flippin unfair!

 

[NicoleC1971]

Just wanted to wish you (and your MiL ) best of luck with your health.
You have had a really bumpy trip into type 1 land so give yourself time to adapt to the shock of this as well as the physical consequences of having ketoacidosis (acidic blood caused by lack of insulin).
I have a load of type 1 friends and those of us who got diagnosed when children seemed to find it easier to get used to the idea (no fear of the future at age 10?) compared to adults.
Re why???? Type 1 is only weakly linked to genetics (my kids have a 2% chance of getting it because I have it). Neither of my parents are type 1 although my dad is type 2 much to his misplaced chagrin. It is an autoimmune condition so a recent virus may have triggered an overeaction by your immune system o r a patch of stress? Nobody truly knows why.
Being fit and active will certainly help you going forward conversely being unfit and sedentary does not cause type 1 and nor does eating doughnuts all day long.
Diabetes complications such as the ones you saw in hospital are likely to be suffered by type 2s with a long history of diabetes and higher bgs. Not sayig it won't happen to you.
Vision Express gave me an eye check for free because I am type 1. They did the same things as I had had done in my hospital eye check by Virgin Healthcare. You will need a lift home though because they will put drops in to take retiinal photos from which they can then detect changes further down the line. You are entitled to 1 check a year and I was only asked for my GP and surgery name to confirm my type 1 status and the whole thing took an hour. If changes get detected at a subsequent check then early treatment can be given which is largely effective.
Prescriptions - I have never shown a pharmacy by exemption certificate and just tick Medically Exempt; it is fairly obvious from what I am prescribed that I am type 1 though the pharmacist can confirm this by ringing the surgery. At least you will get ALL prescriptions free from this point forward.

This forum loves to help newbies so pop in whenever you have a question or just need a virtual hug! Hope you can enjoy Christmas in spite of this.

 

[Jaylee]

Hi @MisplacedIdentity ,

Welcome to the forum.

Wow, I made it to the end of the post.

I was diagnosed as a kid & have the memory of the hospital admission.. I was driven round like the "Sweeney" by my dad.

Just keep asking questions as you go..

All the best!

 

[NicoleC1971]

Just to add I would love it if the clinicians read your post. Clearly some get the emotional implications better than others....

 

[MisplacedIdentity]

Hang on in there! I was diagnosed 18 months ago at the age of 43 and the chaos of the first few weeks does get better. You get into a routine with injections, work out what you can / cannot eat and your eyes slowly settle.

It is really hard for anyone on the outside to really understand what a new T1 diagnosis means. It changes your life. But you will learn to adapt and so will your family.

Do you have a local optician? Mine has a look at the back if my eyes while I was waiting for the hospital appointment. Just made me feelbetter there was no obvious damage.

No history of T1 in my family either. Flippin unfair!

I use specsavers as had headaches a couple of years ago and now use reading glasses only so will visit them after Christmas hoping the blurry vision has improved by them.
Thank you for your encouraging reply.

 

[MisplacedIdentity]

Just wanted to wish you (and your MiL ) best of luck with your health.
You have had a really bumpy trip into type 1 land so give yourself time to adapt to the shock of this as well as the physical consequences of having ketoacidosis (acidic blood caused by lack of insulin).
I have a load of type 1 friends and those of us who got diagnosed when children seemed to find it easier to get used to the idea (no fear of the future at age 10?) compared to adults.
Re why???? Type 1 is only weakly linked to genetics (my kids have a 2% chance of getting it because I have it). Neither of my parents are type 1 although my dad is type 2 much to his misplaced chagrin. It is an autoimmune condition so a recent virus may have triggered an overeaction by your immune system o r a patch of stress? Nobody truly knows why.
Being fit and active will certainly help you going forward conversely being unfit and sedentary does not cause type 1 and nor does eating doughnuts all day long.
Diabetes complications such as the ones you saw in hospital are likely to be suffered by type 2s with a long history of diabetes and higher bgs. Not sayig it won't happen to you.
Vision Express gave me an eye check for free because I am type 1. They did the same things as I had had done in my hospital eye check by Virgin Healthcare. You will need a lift home though because they will put drops in to take retiinal photos from which they can then detect changes further down the line. You are entitled to 1 check a year and I was only asked for my GP and surgery name to confirm my type 1 status and the whole thing took an hour. If changes get detected at a subsequent check then early treatment can be given which is largely effective.
Prescriptions - I have never shown a pharmacy by exemption certificate and just tick Medically Exempt; it is fairly obvious from what I am prescribed that I am type 1 though the pharmacist can confirm this by ringing the surgery. At least you will get ALL prescriptions free from this point forward.

This forum loves to help newbies so pop in whenever you have a question or just need a virtual hug! Hope you can enjoy Christmas in spite of this.

My Hubby will come with me for the retinal screening and when I go to specsavers as it's too far to walk, I'm not driving for now and find walking outside tricky so making use of enjoying time at home getting jobs done that I've ignored for a while when I can.

My local pharmacist wouldn't take my word for it but they did give my Hubby a letter so once the exemption card comes through we should be able to claim some if not all of it back. Thank you for your response and the virtual hug too, it's very much appreciated.

 

[MisplacedIdentity]

Hi @MisplacedIdentity ,

Welcome to the forum.

Wow, I made it to the end of the post.

I was diagnosed as a kid & have the memory of the hospital admission.. I was driven round like the "Sweeney" by my dad.

Just keep asking questions as you go..

All the best!

Thank you, the porters were very good when moving me around, my bed was my rolls royce!

 

[Scott-C]

Hi, @MisplacedIdentity , I see from your post that you're self employed.

In the link below, there's mention of a tax break which allows employers to write off the cost of cgm against tax.

https://www.inputdiabetes.org.uk/tax-break/

It's meant to encourage employers to provide a variety of aids to assist people with "disabilities" which T1 technically is (although you'll soon learn there ain't much we can't do when we put our minds to it!).

I don't know what your business and tax set up is, that's your business, but I wonder whether it would be worthwhile having a chat with your accountant to see if you can use the break. Tax law isn't my gig, but I wouldn't have though being self employed would rule it out - you employ yourself.

If it turns out to be applicable, it's obviously better to be forking out a bit of cash for something useful like cgm instead of giving it to the taxman.

Some areas are prescribing a type of cgm called libre, some freely, some with restrictions, but there's some optimism that it'll loosen up a time goes by, fingers crossed.

If you can't get it prescribed, or on the tax break, it's about £100 per month.

Cgm is continuous glucose monitoring. A small plastic sensor on your arm/stomach with a tiny flexible sensing filament a few mm under your skin senses glucose continuously, so when you scan the libre reader over it, it shows the current reading and a graph of where it's been over the last few hours. Other systems (dexcom, or libre with a blucon or miaomiao transmitter) automatically ping a reading every 5 mins to your phone.

Why is this useful? Say you blood test at 5.5. Fine and dandy, but without testing a lot over the previous hour, you'll not have much of an idea whether that's a stable 5.5 or just passing through on the way to a hypo low or a hyper high, neither of which are good.

With cgm, though, because you can look at the graph, you have a much clearer idea of how it is moving. Say it reads 5.5, but was 7 20 mins ago and looks like it's going to carry on plummeting. You can then make a judgment call (thinking about how much insulin you've got on board - cgm lets you track that too - and whether you're still digesting food) on whether it's going to steady out on its own or whether it needs a nudge up with a dextrotab or two or a biscuit to tail it off before it drops too low.

It's very difficult to do that with strips. Very often, the first you'll know about a hypo is after it's happened. With cgm, you can see situations starting to develop and then proactively stop them.

We're having to deal with a moving target, balancing insulin, food and exercise. It's only fair that we get to see it - cgm gives us that insight, strips alone don't.

If you look around the site, there's lots of us enthusing about cgm. It's a real game-changer, makes it much fairer.

That sense of being more involved with what's happening and being able to gently steer it, co-operating with it, instead of fighting it, gives many of us huge peace of mind. And it's not just me saying that - see pic below, a tweet by a doc from a hospital in my area where libre is freely prescribed.

Good luck, after you get over the initial shock, you'll go through a series of small steps where you start to experiment, see what works for you and what doesn't, push a few boundaries, and it all starts to make more sense.

You've brought up two kids, so think of it as another thing which you need to nurture, care for (even though it needs to go on the naughty step now and then!).

PS: have a healthy respect for complications, but don't be consumed by them. There are no guarantees, but as a general rule, many who get serious complications haven't helped their situation by running around for extended periods, days, weeks, with bg in the 20s. Provided you make a decent effort to stay more or less in range, and don't sweat the occasional short visit to the low teens if you miscalc a bolus, you improve your chances by orders of magnitude.

I'm in Scotland and the national audit results show a mere 1.1%, 350 people ever since records began having a lower limb amputation. There's only 17 recorded instances of blind T1s out of a current population of 31,000. The numbers are in our favour.

 

[JAT1]

Welcome ! I am also type 1 and no one in my family has diabetes of any kind. The first few weeks are hard and there is much to learn but it will all settle into a routine and when you have your blood glucose levels consistently in a healthy range all of your other symptoms will diminish or go away. Keep up the spirit and best of luck !

 

[NicoleC1971]

My Hubby will come with me for the retinal screening and when I go to specsavers as it's too far to walk, I'm not driving for now and find walking outside tricky so making use of enjoying time at home getting jobs done that I've ignored for a while when I can.

My local pharmacist wouldn't take my word for it but they did give my Hubby a letter so once the exemption card comes through we should be able to claim some if not all of it back. Thank you for your response and the virtual hug too, it's very much appreciated.

I think those guys are being put under pressure to check eligibility but if he/she can't be bothered to call a surgery then perhaps you need to change your pharmacist!

 

[KK123]

Hi there misplacedidentity, wow, what an introduction to diabetes eh! I know EXACTLY what you mean because your story is the same as mine (I was 56). I was in a better position because my Mum had been type 1 so at least I knew something about it. Your story is a perfect example of how you can feel perfectly well (yeah, drinking more but not realising that was because your body was constantly trying to flush glucose out of your system via urine meaning an unquenchable thirst), losing weight (yep,you think it's down to the gym). I truly think there is a grieving process to go through, all the things you used to do without a second thought now has to involve a PLAN. All I would say is please give it time, learn as much as you can, go slowly, start to venture out again. I booked off work for a month, was always worried about being out of the house for more than an hour as I kept going low, learnt about the honeymoon period, adjusted my food and insulin, etc, etc....and now, 18 months later it has for the moment calmed down, I do what I please when I please, I grab my pens, my glucose tablets, my meter and an energy bar (in case of emergencies of course) and off I go. YOU will do the same, the very best of luck to you. Oh, and my eyes were blurry for 3 months and then went back to normal, it could take a lot less than that for you. x

 

[Geoffno6]

Hi!
I was feeling rubbish with hot and cold sweats and thought I was starting menopause so after a couple of weeks of feeling rubbish, eating chocolate and drinking lucozade to keep my energy levels up I finally booked myself a doctors appointment and was asked to attend hospital for a blood test.

I decided the blood test could wait, there was no rush so I got it done 2 days after being advised. Then everything went crazy!

Monday Doctor appointment

Tuesday slept all day on the sofa, I had no energy aand only went out to fetch my Daughter from college.

Wednesday my eyes were foggy this was a new experience, my Hubby came home from night shift and took me to get my bloods done, I wasn't going to take the chance and drive.

Thursday my vision was ok .... not great but I had to work, I had an event planned which only I could run. The Doctors surgery called me at 10am telling me I must get to the surgery asap. I told them I was working until 4pm, so carried on with my day, after all I had lucozade and chocolate to keep me going.
I then went to the surgery and sat waiting for over an hour, becoming more anxious ..... what was so important? The BANG .... I was told I was dangerously dehydrated, my blood was acidic and I was type 1 diabetic. I was instructed to go straight to hospital.
I drove home in tears, slammed the car door, slammed the house door, threw my phone, keys and bag into the lounge and sobbed my heart out on the stairs (new lounge carpet no shoes allowed).
Then my Hubby drove me to hospital where I sat in majors for 2 hours, once on a bed my blood pressure was low, a saline drip was put in place then I went all weak and woozy to rushed through to resuss. I had a lot of people around me, another canula was put in and a Doctor was squeezing a bag to get it in me quicker. I sent my Hubby home to our children.
By 3am I had 3 bags of saline and insulin was now being pushed in me, I then got moved to a ward with hourly obs done.

Why me? noone in my family had type 1, what did I do to myself? There is no way I had dehydrated myself, I was drinking 12 x 500ml a day! I was fit, active, lost 3 stone to keep myself healthy (still overwieght) was at the gym 3 times a week and swam twice a week as well as an active job!

8 bags of saline and 3 bags of insulin later I was broken hearted, couldn't control my anger, frustration, it felt like I had lost something and I was grieving. my level was 32! no idea what that meant!

Friday evening the drips were removed and injections started. What was I allowed to eat? I had no idea and the menu lady couldn't advise me as she was new. So I had cornflakes, BIG MISTAKE. My level was 14 then after eating it was 22 so no cornflakes for me. I had no idea what they meant by levels but I knew it was bad so again I felt guilty, I had made myself worse by eating!

Saturday - so now I've started to calm down, the ward staff were amazing, had no sleep due to hourly obs. The Diabetic team came to see me, this made my heart brake even more. I was told I'll be insulin dependant for life! She didn't leave me with anything as I was a wreck. I cried myself to sleep that night. The ward staff told me that the mental health team would visit me on monday, they never came.

Sunday - I've been moved to another ward to be with other diabetics. Three ladies were discussing which toes they were having removed, how was this supposed to help me? I sobbed, I'm going to lose my toes too? one lady was having her whole foot off! Will I lose my foot too? My Parents drove 3 hours to visit me, this was the hardest part, I felt that I had let them down, I couldn't be home with my children, my Hubby was running around trying to work, run the house, do the childcare, visit me, he was exhausted and it was all my fault. When my Parents left I cried myself to sleep again.

Monday I was informed I could go home at 10:30am after the diabetic team had been to see me. I had no idea how to look after myself, how was I going to cope? the team came to see me and said I was ready to go. I asked them .... how do I get my insulin? do I need to come back every 4 hours? they were confused as my notes stated that I had been shown how to use my pen. I saw my pen on friday night then it was lost with my folder. Staff were injecting me with syringes I didn't know what to do, how to set it up I just knew that I needed it.

2 hours later I was trained and then could leave but had to wait for the mental health team, the dietitian and 3 canulas to be removed. by 6pm the nurses asked why I hadn't gone home yet!!!!!! So I told them who I was told to wait for, the dietitian had gone home. There was noone available from the metal health team. So canualas were removed and I was discharged.

The drive home was scary, it was like being on a roller coaster, my eyes were blurry, nothing made sense. I got home and hugged my children then fell apart again. Had a nice relaxing bath and sobbed myself to sleep.

Tuesday - day one at home with very poor vision, feeling wobbly, having to sit a lot, still asking myself why me, what did I do wrong to make myself ill? how can I lose weight, get fit and still end up being a diabetic? how was I going to work? I'm self employed, I have to work there is no sick pay. I spent the day in tears, making a cup of tea for myself was hard as I couldn't see the rim of the cup, I had to feel which caused me to pour boiling water on my finger but no burns luckily.

Wednesday - my Hubby had to go to work, this was really scary, a friend came and spent most of the day with me.
Thursday - my first offical day on my own - my vision was still bad but by now my Hubby had bought me some tesco 3.5 reading glasses, I'm wearing these over the top of pound shop 1.5 reading glasses so now I can see, read, use my laptop.

As the week went on I woke every day and felt gutted as I couldn't see the clock, who knew what time it was! Double glasses to read a well lit clock!

Today is day 17 since being diagnosed. I'm no longer tearful. I'm still wearing double glasses though can't walk with them on as I get motion sickness. I've not been out of my home for 6 days as it's scary to step out, I'm safe in my home.

Monday I have a consultant appointment as 12 in one hospital followed by an appointment with my diabetic nurse as 2pm at another hospital.
Tuesday is bag packing day to visit family for Christmas.
Wednesday foot check and flu jab then venture out of the house for a 3 hour journey as a passenger in my Hubby's car which I'm dreading.

To top this all off my Mother in Law was rushed into hospital and she's awaiting an operation today for a ruptured aneurysm. My Hubby has been torn, leave me to go to his Mom or stay and carry on as his sibblings are there. This had made me feel even more guilty and very low in myself BUT I'm not tearful.

I've now learnt how to make a cup of tea and feed myself with blurry vision and have been advised to give my eyes at least another 2 weeks before seeking advice from the opticians.

Prescriptions have cost me a fortune, I've chased up my doctors surgery to find out when my exemption card will come, they haven't processed it yet so will be paying for me next prescription too.

There is an 8 month wait for retinal screening so I might find out how much it will cost if I go private.

Christmas will be strange this year and I know I've refered to my children a lot but they are 17 and 18 now. My Daughter is 100% reliant on me due to her anxiety issues and lack of confidence but she's starting to become independent, she's learning how to get herself too and from college. My Son is amazing, he is dyspraxic and has suddenly grown up, he seeked help from college to change his journey to and from as I was dropping him half way so he only had one bus to deal with. My Hubby has done his best to fully support them both whilst working and visiting me.

I'm very lucky to have an amazing family and I'm no longer angry with my condition. We are learning to deal with is as a family.

This was supposed to be a short post so I totally understand anyone who chooses not to read it. I'm also hoping that it will help anyone else out who have gone through the same process.

Thanks for reading. Onwards and Upwards to 2019!

What a tale, so scary! At least you’re in the right place here. I’m not T1 so won’t advise but it’s all very manageable so good luck and I’m sure it’ll all seem so much easier and clearer in a week or two.

 

[Juicyj]

Hello @MisplacedIdentity and welcome to the forum

Yes it is a massive roller coaster at diagnosis, I was away skiing when I fell ill and lost a lot of weight, I also managed to ski my first black run but only because I was so exhausted I didn't put up a fight and I also didn't fall over either as I was too knackered to get back I again and then drank a full fat coke afterwards..

No one in my family has type 1 and I spent ages trying to analyse the reasons behind it, the best stage I got to was acceptance through my grieving process because it was at this stage I realised it was down to me and I had to become an expert in my condition. Ultimately we are all unique so your t1 is as unique as you, knowledge is your best tool in looking after yourself, I'd recommend reading 'think like a pancreas' and to take it one day at a time, it does get a lot easier just keep talking to those around you and at some point you will get to the stage when you forget you have it and it all becomes intuitive so it really is manageable

 

[messy]

Hi,

I was diagnosed type 1 six weeks ago, need to change type on my avator. Was diagnosed type 2 four years ago, followed lchf diet all to no avail, then developed dka.

All I can say is, six weeks or so on, you will start to feel better soon, it's a slow start, but your blood sugar will start to go down week by week. Your does will be adjusted, and you'll learn to carb count.

I started on 5 units of nova rapide per meal and 8 units of levimar twice a day. Now 1 unit of nova rapide per 10g of carb per meal and 15 units of levimar in morning and 20 units per evening, a hypo or two down the road , on the right road

What I trying to say is diabetes has to be controlled, it doesn't have to control you. There is light at the end of the tunnel, it's frightening but we are here for you.

I had an advantage, my hubby has been type1 for nearly 40 year, he's only 49 now.

Have faith, ask questions. You'll be fair

 

[MisplacedIdentity]

Hi, @MisplacedIdentity , I see from your post that you're self employed.

In the link below, there's mention of a tax break which allows employers to write off the cost of cgm against tax.

https://www.inputdiabetes.org.uk/tax-break/

It's meant to encourage employers to provide a variety of aids to assist people with "disabilities" which T1 technically is (although you'll soon learn there ain't much we can't do when we put our minds to it!).

I don't know what your business and tax set up is, that's your business, but I wonder whether it would be worthwhile having a chat with your accountant to see if you can use the break. Tax law isn't my gig, but I wouldn't have though being self employed would rule it out - you employ yourself.

If it turns out to be applicable, it's obviously better to be forking out a bit of cash for something useful like cgm instead of giving it to the taxman.

Some areas are prescribing a type of cgm called libre, some freely, some with restrictions, but there's some optimism that it'll loosen up a time goes by, fingers crossed.

If you can't get it prescribed, or on the tax break, it's about £100 per month.

Cgm is continuous glucose monitoring. A small plastic sensor on your arm/stomach with a tiny flexible sensing filament a few mm under your skin senses glucose continuously, so when you scan the libre reader over it, it shows the current reading and a graph of where it's been over the last few hours. Other systems (dexcom, or libre with a blucon or miaomiao transmitter) automatically ping a reading every 5 mins to your phone.

Why is this useful? Say you blood test at 5.5. Fine and dandy, but without testing a lot over the previous hour, you'll not have much of an idea whether that's a stable 5.5 or just passing through on the way to a hypo low or a hyper high, neither of which are good.

With cgm, though, because you can look at the graph, you have a much clearer idea of how it is moving. Say it reads 5.5, but was 7 20 mins ago and looks like it's going to carry on plummeting. You can then make a judgment call (thinking about how much insulin you've got on board - cgm lets you track that too - and whether you're still digesting food) on whether it's going to steady out on its own or whether it needs a nudge up with a dextrotab or two or a biscuit to tail it off before it drops too low.

It's very difficult to do that with strips. Very often, the first you'll know about a hypo is after it's happened. With cgm, you can see situations starting to develop and then proactively stop them.

We're having to deal with a moving target, balancing insulin, food and exercise. It's only fair that we get to see it - cgm gives us that insight, strips alone don't.

If you look around the site, there's lots of us enthusing about cgm. It's a real game-changer, makes it much fairer.

That sense of being more involved with what's happening and being able to gently steer it, co-operating with it, instead of fighting it, gives many of us huge peace of mind. And it's not just me saying that - see pic below, a tweet by a doc from a hospital in my area where libre is freely prescribed.

Good luck, after you get over the initial shock, you'll go through a series of small steps where you start to experiment, see what works for you and what doesn't, push a few boundaries, and it all starts to make more sense.

You've brought up two kids, so think of it as another thing which you need to nurture, care for (even though it needs to go on the naughty step now and then!).

PS: have a healthy respect for complications, but don't be consumed by them. There are no guarantees, but as a general rule, many who get serious complications haven't helped their situation by running around for extended periods, days, weeks, with bg in the 20s. Provided you make a decent effort to stay more or less in range, and don't sweat the occasional short visit to the low teens if you miscalc a bolus, you improve your chances by orders of magnitude.

I'm in Scotland and the national audit results show a mere 1.1%, 350 people ever since records began having a lower limb amputation. There's only 17 recorded instances of blind T1s out of a current population of 31,000. The numbers are in our favour.

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Thank you so much for your very informative response. I've not looked at HMRC yet to see if I'm able to get tax relief, I'm presuming if I can't work I don't get paid so no earnings to declare but will check this out with my accountant and will ping her an email first thing tomorrow morning.

The CGM's - I'll ask the consultant about them, I'm sensitive to metal so this could be huge help to reduce the finger prick testing. I'll hunt around the forum to see how others are getting on when I can use the laptop more without eye strain.

 

[MisplacedIdentity]

Hi there misplacedidentity, wow, what an introduction to diabetes eh! I know EXACTLY what you mean because your story is the same as mine (I was 56). I was in a better position because my Mum had been type 1 so at least I knew something about it. Your story is a perfect example of how you can feel perfectly well (yeah, drinking more but not realising that was because your body was constantly trying to flush glucose out of your system via urine meaning an unquenchable thirst), losing weight (yep,you think it's down to the gym). I truly think there is a grieving process to go through, all the things you used to do without a second thought now has to involve a PLAN. All I would say is please give it time, learn as much as you can, go slowly, start to venture out again. I booked off work for a month, was always worried about being out of the house for more than an hour as I kept going low, learnt about the honeymoon period, adjusted my food and insulin, etc, etc....and now, 18 months later it has for the moment calmed down, I do what I please when I please, I grab my pens, my glucose tablets, my meter and an energy bar (in case of emergencies of course) and off I go. YOU will do the same, the very best of luck to you. Oh, and my eyes were blurry for 3 months and then went back to normal, it could take a lot less than that for you. x

Thank you for sharing, I really so hope it's less than 3 months but will have to let my body do it's own thing in it's own time. I've had 4 days indoors as can't get out and go for a walk on my own but my Hubby is off work for the next 10 days starting tomorrow so will be using him to guide me and he's my personal taxi to get to appointments too for now. I have a 2nd meter under the christmas tree to keep in my handbag so I haven't to to think about packing it each time, atleast my Hubby knew what to buy this year!

 

[MisplacedIdentity]

Hello @MisplacedIdentity and welcome to the forum

Yes it is a massive roller coaster at diagnosis, I was away skiing when I fell ill and lost a lot of weight, I also managed to ski my first black run but only because I was so exhausted I didn't put up a fight and I also didn't fall over either as I was too knackered to get back I again and then drank a full fat coke afterwards..

No one in my family has type 1 and I spent ages trying to analyse the reasons behind it, the best stage I got to was acceptance through my grieving process because it was at this stage I realised it was down to me and I had to become an expert in my condition. Ultimately we are all unique so your t1 is as unique as you, knowledge is your best tool in looking after yourself, I'd recommend reading 'think like a pancreas' and to take it one day at a time, it does get a lot easier just keep talking to those around you and at some point you will get to the stage when you forget you have it and it all becomes intuitive so it really is manageable

Thank you I'll have a read of that. thank you for sharing your experience, well don with the skiing it's not something I fancy. I hope you are a back on the slopes and it's not put you off!

 

[MisplacedIdentity]

Hi,

I was diagnosed type 1 six weeks ago, need to change type on my avator. Was diagnosed type 2 four years ago, followed lchf diet all to no avail, then developed dka.

All I can say is, six weeks or so on, you will start to feel better soon, it's a slow start, but your blood sugar will start to go down week by week. Your does will be adjusted, and you'll learn to carb count.

I started on 5 units of nova rapide per meal and 8 units of levimar twice a day. Now 1 unit of nova rapide per 10g of carb per meal and 15 units of levimar in morning and 20 units per evening, a hypo or two down the road , on the right road

What I trying to say is diabetes has to be controlled, it doesn't have to control you. There is light at the end of the tunnel, it's frightening but we are here for you.

I had an advantage, my hubby has been type1 for nearly 40 year, he's only 49 now.

Have faith, ask questions. You'll be fair

Thank you, I'm on 5ml novarapid 3 times a day with food and low carbs but not counting just following instructions and 13ml levemar at night.

 

[Juicyj]

Thank you I'll have a read of that. thank you for sharing your experience, well don with the skiing it's not something I fancy. I hope you are a back on the slopes and it's not put you off!

Your welcome I took the decision to never let diabetes affect my life so have carried on skiing since, there's a way round everything and although takes some planning and preparation it's never got in the way. I have also taken up running since being diagnosed too, regular exercise has helped with my glucose management and controlling levels. There's lots of very inspiring type 1's all around us so it's good to see how others manage and teach us that regardless of this condition we can still achieve the impossible