Newly diagnosed type 1 saying hello!

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Lenni

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Relationship to Diabetes
Type 1
Hello everyone.

Just a message to say hello and tell my story if you've got time to read 🙂

I was on holiday in Tenerife with my dad beginning of July when I realised things had got a bit strange..I was drinking ALL the time, peeing ALL the time, getting lethargic for no reason when I'm a very active 23 year old. I put it down to being in a hot country and having sunburnt on the first day (classic!). My vision had got blurry before I went away and I'd put that down to too much work on a computer screen. There always was a reason for things! The lethargy and blurry vision seemed to come and go in waves. I tried to be logical - I thought to myself, if I go to the doctors and complain about blurry vision they will ask if I've been for an eye test, so I'll go for one of those first. I booked that in for the Monday after I got back from holiday.

I got back off holiday Friday night at 1am. Went to a festival on Saturday all day. Recovered on Sunday! I did feel I had lost weight and I saw a friend on Sunday who told me I'd lost more weight. I weighed myself and I had nearly lost a stone in a couple of weeks when I'd still be eating totally normally. That made me kick myself into action to get to the doctors.

Monday I went to my eye test and I was so physically exhausted I was walking a few metres and needing to stop and take a breath. But this was coming and going throughout the day which was strange. Had eye test - apparently I needed glasses - so I thought ah well, that explains that then!

Tuesday morning I had my doctors appointment, again I felt physically exhausted and close to fainting first thing in the morning but it was coming in waves. I was SO glad to get an appointment as they had nearly all gone. I told her all my symptoms, she asked "any history of diabetes in the family?" ... "Nope, none". She did my blood sugar, ketones, and sent me out for unine sample and called me back in 10 minutes later. I walked through the door and she said, "So you have type 1 diabetes and I want to send you for blood tests at the hospital if that's okay". She then picked up the phone and started to phone them to book me in. Meanwhile I'm sitting there, no explanation given and told completely out the blue. She gave me my notes and asked me to go to reception to book in and then go to the AMU (Acute Medical Unit) and I would get given blood tests. Still no explanation of what diabetes was or anything. I guess my appointment time had overrun too much!!

Left the doctors in a bit of a state of disbelief. Went home first to chill out, change from my work clothes and dry my confused tears before driving on down to the hospital. I registered at reception and they asked me to see the triage nurses who would show me where to go. I gave the nurses my notes where they looked at each other confused and started speaking between themselves. They asked to take my blood sugars again, starting asking how long I've been on treatment, when I was diagnosed etc. I told them I've literally been told about 30 minutes ago by my doctor and explained the story. She sat me down and told me I was in in a state called DKA and I needed to be taken straight to resus and I would need to be kept in hospital overnight. I was totally confused as I didn't know what any of this meant. Within 20 minutes I was hooked up to all sorts of drips and couldn't stop crying in disbelief. All the nurses were amazed that at my levels (BM 29 and ketones 3.7) I was still functioning normally (ish).

I got out of hospital the following day at about 9pm. I felt like I'd come home from the hospital with a newborn baby that I suddenly had to look after all my myself and I was supposed to 'know' what I was doing! Monitors, strips, needles, insulin - such a foreign language, but not to worry, a bag full of a million leaflets to read that would explain everything! eek!

3 and half weeks down the line I'm still trying to get to grips with it all. After the first 2 weeks I thought I'd cracked it (naively!) but in the last week I've been struggling with having random sudden drops in my sugars an hour or so after I've eaten where my pancreas is clearly deciding to contribute to the party. I've found that difficult to deal with mentally as I feel like I don't have control of it at all when it does that and it's not logical - I like logic to get my head around things!

I've also struggled mentally with putting the weight back on that I'd lost (was 9st 4lbs down to 8st 3lbs). I know it was unhealthy weight that I lost, it wasn't 'real' so to speak, but I have really struggled seeing the scales go back up that much in such a short space of time (now at 9st 1lbs) and has made me unhappy with my body which I know is totally ridiculous but still difficult.

I appreciate any words of wisdom or experience that might help me in these early stages. I know it'll 'get easier' of course, that's not quite what I want to hear - at the moment I'm enjoying feeling sorry for myself! haha! 🙂

Thanks for reading!!
 
Hello Lenni, and welcome to the club nobody wanted to join. There's a lot to get to grips with when you're first diagnosed, but it does all get part of the routine eventually. Have a look at the book by Ragnar Hannas, (Type one in children and adolescents, I think it's called) it's often recommended as being the clearest explanation for people with Type 1 of any age. Then any queries you have, ask away on here, there's normally someone who's been there, got the Tshirt, etc, and can offer good advice.
I remember when I was diagnosed, one of the nurses commented 'goodness, I'm amazed you were still walking round!'
 
Welcome to the forum, but sorry you have to be here. In order to give some more personalised advice / encouragement, can you tell us what's important in your life eg work (type), sports, hobbies etc. I was diagnosed 20 years ago as a 30 year old woman while working overseas, so have been forced to make a few changes to life, but your career and interests might be less extreme than mine.
 
Hello! Well done for finding us. This site didn't exist when I was diagnosed, I think it would have been very useful, with hindsite.

I think the best advice a friend (who had had T1 for 10 years) gave me when I got it aged 26 was "It doesn't change a thing. Just put your pen and your sweets in your handbag and away you go". Obviously there is a bit more to it than that at timnes, but I like to follow this philiosophy when possible. Some helpful advice from my consultant was also that the "foreverness" of the condition would hit me at some point, and not to feel bad about being upset and to get some help. It certainly did hit me, a few months later, which was tough. Trying to keep doing normal things I liked helped, like going swimming and playing in my band. Then I took up running, which was great.

One of the best things I did early on was go to a group run at my clinic for newly diagnosed people. I thought it would be all kids, but no, it was people like me. We all shared experiences and they went through what diabetes is, what causes it, how it's treated, food types and how to read labels etc. What insulin regime are you on? At first I was put on a bi-daily mixed dose but at the classes I found out about MDI (multiple daily injections) and carb counting, which can enable you to eat pretty much what you want and adjust your insulin for this. So after 4 months I changed onto this regime, which also helped a lot with the weight gain etc as now I didn't have to snack before bed, eat to match the insulin etc. Also, and I imagine your life is similar, at the time I was constantly going to people's weddings and christenings etc and you never knew when you'd eat or what it would be, so I found knowing how to adjust my doses for food meant I could join in more and wasn't feeling self conscious stuffing in sweets in churches etc.

Following your fairly dramatic diagnosis, are you under the care of a diabetes clinic at the hospital? If you've been left under the care of your GP I'd strongly recommend you ask to be referred to a consultant, who will be able to offer you support and look at the bigger picture- you need help from specialist nurses and dieticians as well as just the meds and testing strips.

Hope that helps- I can relate to many of your feelings- I also started with the symptoms while on holiday, but I delayed seeking help for 6 months! Think it must have been slow onset for me but I lost over a stone eventually, which prompted me to go to the doctor. Then I got blood test results by letter on Easter Monday saying "your test results indicate diabetes, do not eat or drink anything sweet until you seek medical advice". I'd been away all Easter weekend with family scoffing Easter eggs, so I started to panic at that point! At the time it felt like my life had been ruined- but 10 years on things are just fine! So feel free to rant and have sad days, we have all been there and we are here for you. But it really honestly does get better in the end- educate yourself as much as you can and ask for help when you need it and you'd get there.
 
Hello! My boyfriend suffers with Type 1 and he was the exact same! in Tenerife having fun, drinking lots, not aware of what was happening. Had the exact same symptoms as you but he was only 16! When he came back had to go into hospital! Just keep going strong and keep a good group of people who will support you through the hard times around you! We're always here x
 
Welcome...its alot to take on in a short space of time...i'm 5 wks in ... my wee boy was diagnosed aged 8.. i've got to say our hospital experience was somewhat better than yours sounds.
This is a great site, i've picked up alot from it and everyone is happy to help.
download carbs and cals onto your phone and i also like my sugr monster app... gives you a good visual of where your numbers are.
 
Hi Lenni and welcome to the forum.
 
Lenni said:
Hello everyone.

Just a message to say hello and tell my story if you've got time to read 🙂

I was on holiday in Tenerife with my dad beginning of July when I realised things had got a bit strange..I was drinking ALL the time, peeing ALL the time, getting lethargic for no reason when I'm a very active 23 year old. I put it down to being in a hot country and having sunburnt on the first day (classic!). My vision had got blurry before I went away and I'd put that down to too much work on a computer screen. There always was a reason for things! The lethargy and blurry vision seemed to come and go in waves. I tried to be logical - I thought to myself, if I go to the doctors and complain about blurry vision they will ask if I've been for an eye test, so I'll go for one of those first. I booked that in for the Monday after I got back from holiday.

I got back off holiday Friday night at 1am. Went to a festival on Saturday all day. Recovered on Sunday! I did feel I had lost weight and I saw a friend on Sunday who told me I'd lost more weight. I weighed myself and I had nearly lost a stone in a couple of weeks when I'd still be eating totally normally. That made me kick myself into action to get to the doctors.

Monday I went to my eye test and I was so physically exhausted I was walking a few metres and needing to stop and take a breath. But this was coming and going throughout the day which was strange. Had eye test - apparently I needed glasses - so I thought ah well, that explains that then!

Tuesday morning I had my doctors appointment, again I felt physically exhausted and close to fainting first thing in the morning but it was coming in waves. I was SO glad to get an appointment as they had nearly all gone. I told her all my symptoms, she asked "any history of diabetes in the family?" ... "Nope, none". She did my blood sugar, ketones, and sent me out for unine sample and called me back in 10 minutes later. I walked through the door and she said, "So you have type 1 diabetes and I want to send you for blood tests at the hospital if that's okay". She then picked up the phone and started to phone them to book me in. Meanwhile I'm sitting there, no explanation given and told completely out the blue. She gave me my notes and asked me to go to reception to book in and then go to the AMU (Acute Medical Unit) and I would get given blood tests. Still no explanation of what diabetes was or anything. I guess my appointment time had overrun too much!!

Left the doctors in a bit of a state of disbelief. Went home first to chill out, change from my work clothes and dry my confused tears before driving on down to the hospital. I registered at reception and they asked me to see the triage nurses who would show me where to go. I gave the nurses my notes where they looked at each other confused and started speaking between themselves. They asked to take my blood sugars again, starting asking how long I've been on treatment, when I was diagnosed etc. I told them I've literally been told about 30 minutes ago by my doctor and explained the story. She sat me down and told me I was in in a state called DKA and I needed to be taken straight to resus and I would need to be kept in hospital overnight. I was totally confused as I didn't know what any of this meant. Within 20 minutes I was hooked up to all sorts of drips and couldn't stop crying in disbelief. All the nurses were amazed that at my levels (BM 29 and ketones 3.7) I was still functioning normally (ish).

I got out of hospital the following day at about 9pm. I felt like I'd come home from the hospital with a newborn baby that I suddenly had to look after all my myself and I was supposed to 'know' what I was doing! Monitors, strips, needles, insulin - such a foreign language, but not to worry, a bag full of a million leaflets to read that would explain everything! eek!

3 and half weeks down the line I'm still trying to get to grips with it all. After the first 2 weeks I thought I'd cracked it (naively!) but in the last week I've been struggling with having random sudden drops in my sugars an hour or so after I've eaten where my pancreas is clearly deciding to contribute to the party. I've found that difficult to deal with mentally as I feel like I don't have control of it at all when it does that and it's not logical - I like logic to get my head around things!

I've also struggled mentally with putting the weight back on that I'd lost (was 9st 4lbs down to 8st 3lbs). I know it was unhealthy weight that I lost, it wasn't 'real' so to speak, but I have really struggled seeing the scales go back up that much in such a short space of time (now at 9st 1lbs) and has made me unhappy with my body which I know is totally ridiculous but still difficult.

I appreciate any words of wisdom or experience that might help me in these early stages. I know it'll 'get easier' of course, that's not quite what I want to hear - at the moment I'm enjoying feeling sorry for myself! haha! 🙂

Thanks for reading!!
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Hi Lenni, Yes, I know exactly how you feel as I was diagnosed with late Diabetes 1 approx 5 years ago. It's such a shock to the system and as you say nothing is very logical. I also lost a lot of weight which is quite normal but I kept a strict control not to gain too much weight again. However, you will slowly find how best to cope with your blood sugar levels as we are all individuals but do have patience, as it does take time to find out of things. If it is possible for you, do try and keep your weight down as too much weight needs more insulin etc. You might need to change your diet to more lean meat, fish, salads etc. I also changed semi skimmed milk to soya milk and buy cheese with reduced fat to cut down on saturates. Food with a low GI (glychemic index) will help to lower your risk of low blood sugar drop, i.e. like oat bisquits, rye bread etc. Collins gem GI handbook is very useful.

Keep as positive as possible and ensure your friends know your situation as that is very important as well. Margarita
 
Hi Lenni (and again, welcome to the club you don't want to be in)
As a seasoned veteran of 3 whole months since diagnosis I can certainly associate with many of the comments you make. I found this site absolutely invaluable and for the first few weeks was simply looking through the forums. It really helped me realise the following things:
a) I'm not on my own
b) the people on here have all pretty much gone through the same which means
c) I'm not on my own
d) and If I have any questions about D (even if I feel I should know the answer but don't) the lovely people on here are always willing to help which means
e) I'm not on my own
f) because with the best will in the world, I can't really talk to someone who hasn't got D about it simply because they don't know what it's like.

When my honeymoon period ended (I had a month when my pancreas was still sort of working) I was scared witless of injecting myself, and getting it wrong, and causing hypos, but nothing like that ever happened and I'm now getting used to my new life with D.
I'm eating far more healthily, got more energy, and feel considerably better than I did before.
Get yourself a copy of "Carbs and Cals" - it will be your best friend as you can actually work out how much to inject which means you are (within reason) free to eat as you want.

So look around and if you've got any questions ask away
Regards
zx
 
Welcome aboard. Its a ateep learning curve, but you can do it.🙂
 
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