9 years down the line and still not sorted

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hyper-Suze

hyper-Suze

Well-Known Member
Relationship to Diabetes
Type 1
Hi to everyone, this is all so new to me, writing to strangers yet with so much in common! I'm 28 and had type 1 for 9 years. I've never been settled with my sugars and running over 15 most days for all of the day. I,ve had a number of scares and close calls in hospital. I have a fantastic family and man who supports be yet I feel so alone! Started counselling yesterday to help heal the emotional side of things and to break my bad habits(like going to the shop and binging on sweets)
Does anyone else ever feel this lonely or has done but managed to overcome it? I can't keep going on like this or it'll be a bleak future! I'd appreciate any shouts back...
 
Hello & welcome first off, you've done well to look for help here, there's a big heart and community here, no question to silly, always someone else in a similar place.

Good to hear you have good support at home too.

I'm still new to this first 12 months, but feel you will get some help from this forum, good luck, and stay strong.
 
hi and a warm welcome suzie sorry to hear things aint sorted for you yet , i have been diagnosed 6 month now im type 2 and 26 yrs old , i found it really hard at first the family who live with me partner and son really have sweet tooths so at first it was really awkward for me to resist , but it happened and now i have my own little treat bag at the bottom of the fridge and i dip into that maybe twice a week it is only little bite size mars bars but still i get that little bit of a sweet kick , i could not live without none at all , its all about moderation , we dont need to cut everything out just have it in smaller portions/quantities

.I hope the counselling works out for you it is always of great comfort to get out what is getting us down in front of a councillor it works i think x
 
hyper-Suze said:
Hi to everyone, this is all so new to me, writing to strangers yet with so much in common! I'm 28 and had type 1 for 9 years. I've never been settled with my sugars and running over 15 most days for all of the day. I,ve had a number of scares and close calls in hospital. I have a fantastic family and man who supports be yet I feel so alone! Started counselling yesterday to help heal the emotional side of things and to break my bad habits(like going to the shop and binging on sweets)
Does anyone else ever feel this lonely or has done but managed to overcome it? I can't keep going on like this or it'll be a bleak future! I'd appreciate any shouts back...
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Hi Suze , Sorry you feel so alone , we do all get times like this ( most days ) you are certainly not alone in feeling like this , I get I hate Diabetes Days , quite often at the moment it seems , when no matter how hard I try my levels are all over the place , so I get the sod it attitude and eat sweets 😱 I think most people if honest would say the same. There is always someone here who knows how you feel as we live with Diabetes everyday of our lives too. I hope the counselling works for you and helps you to feel more able to cope with things . If you ever need to chat , rant or ask a question there is always someone here willing to listen.
 
Hi Suze!

Welcome! For me, the big thing was education...until I did a DAFNE course, I only had a hazy idea that I ought to know what carbs I was eating & that insulin requirements were related, but I had no "scientific" way of dealing with this, hypos, exercise, illness etc, & it often felt like bobbing for apples in a pirhana tank whilst blindfolded! 😱

I would really recommend the DAFNE course - it's not a panacea for all problems, but it's a darn good starting point & I know the more I feel capable of controlling this dam condition (or at least not falling off the tiger too ofter, as it were), the better I feel emotionally. Your DSN or consultant should be able to get you on a course, but if they are not supportive speak to your GP - don't accept poor support! (Can you tell I'm getting old & fractious?!)

All the best, nice to "meet" you! 🙂
 
Hi Suze, welcome to the forum!🙂 I think there are quite a few people who have been diagnosed a few years who perhaps are unaware of the up to date thinking on BG control. If your levels are 15 most days, then you really do need to bring them down as you've now realised. What regime are you on? (how many injections, what insulin, do you carb count?). Thos high levels for so long will also be affecting your moods, so that should improve as they start to come down. Do you do much exercise? Do you have much contact with your doctor or DSN?

Don't feel that any question you might have is 'silly' - I know there are poeple who feel that they ought to know the answer to things after several years, but there are people here with over 30 years of diabetes and they're still learning new things - so ask away!🙂
 
Hi Suze..

Welcome to the forum... the large extended family...🙂

Heidi
xx🙂
 
Wow! This is all so overwhelming and heartwarming to read all the replies that have come thru so so quickly! Thank you everyone! Yes I have had discussions with my dsn recently. It was the poor care from my docs which has allowed to go on like this for so long. I then complained direct to head diabetic consultant who has since got ball rolling! Apparently, there is no dafne course being run in my area! In answer to
'Northener' I'm on basal bolas regime, 4 times a day with solostar and novorapid but only taking solostar at the moment which isn't helping my levels I'm sure. Just far too many issues surrounding why I won't or can't take the novorapid! Yes I'm already being affected by the hi bg...eyesight blurry, drinking, foot cramps, disrupted sleep coz of needing to pee!!! As for moods, I think my irritated state has become the norm after 9 years! I wouldn't know how to be nice! Lol!
I am seriously thinking about having a pump fitted...any thoughts or experiences on them? Any good?
Does anyone know how you get this diabetes uk site on Facebook? I have tried but just getting USA sites which is useless as their care plans are so different!
Thanks again guys and gals!x
 
Hi Suze, quite a few new and experienced pumpers here, and they do seem to be very much appreciated by those that have them! There is a lot of initial hard work though to get everything worked out, so it's not an easy option, but can offer much better levels long term and greater flexibility in eating, activity etc.

Sorry to hear you've been so let down by your doctors in the past. Are you just taking your basal insulin then at the moment? Does novorapid give you an allergic reaction or is it a needle phobia? There are (as you no doubt know!) other insulins and regimes which might suit you better. This does sound like your greatest hurdle to overcome - I can't imagine not taking my novorapid.
 
Hi Suze and welcome to the site! I was diagnosed at age 21, about 5 years ago. I really struggled to get things under control for a long time, firstly ignoring the diabetes so not doing anything, then it was so out of control that even thought I wanted to get sorted it seemed far too difficult. The thing that turned it around for me was doing a dafne course, not only did it teach me to manage the condition but meeting the other people, and just having the space to focus on the diabetes alone was invaluable. I see it almost like pressing a reset button and starting afresh! It's a shame that they don't run dafne local to you. Have you asked if they do anything different, all PCTs should offer some sort of education provision for their diabetic patients so at the very least you should be able to get some 1:1 sessions with a DSN or dietician. The important obstacle for me was to stop feeling bad for what I'd done wrong before and to focus on doing things better in the future.
Are there any local support groups or anything similar where you can meet other diabetics?



hyper-Suze said:
Does anyone know how you get this diabetes uk site on Facebook?
Click to expand...

There is an official diabetes uk page on facebook, it's under causes rather than groups. I'll try to find the link and send it to you as a provate message if you like?
 
Thanks again! The pump does sound like my second option if I can't overcome my psychological issues with my counsellor and if I can't access this dafne course. I'm happy to travel to attend so will need to speak to my dsn! I don't have any reaction to novorapid nor a fear of needles(that was an issue which I have since worked on and sorted!) but yes just taking the basal! This is the third regime/type of insulin I have been put on, the one affected my moods really badly. But this current one is ok and the basal is probably what is only just keeping me from dka. It is a whole raft of things as to why I can't take my novo!
Hi aymes, I attended a support group a few years back but it isolated me further as it was ALL type 2 members, no one my age or type so felt like an alien! It was nice to read your comments that you've felt the same and diagnosed at a similar age and length! Are you all under control now, and all because of dafne? I need to get on that ASAP!
 
hyper-Suze said:
Hi aymes, I attended a support group a few years back but it isolated me further as it was ALL type 2 members, no one my age or type so felt like an alien! It was nice to read your comments that you've felt the same and diagnosed at a similar age and length! Are you all under control now, and all because of dafne? I need to get on that ASAP!
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I know what you mean, support groups can be quite tricky for that reason. I'm actually in the process of trying to set up a local 18-30 support group, I have a friend who runs a very successful one in Kent so looking at replicating something similar. Recently diabetes uk have been running some training called 3D to train 18-30 year olds to run support groups (I'm booked on the next one in November!) etc so maybe it'd be worth seeing if anything is in progress near to you...

As for control, I'm getting there. My last a1c about a month ago was 7 so going in the right direction, would like to get it a bit lower if possible though. I'm by no means a perfect diabetic though and do have my struggles with self discipline every now and then! Also having a run of hypos over the last few days which isn't good! But I think the difference now is that I have more confidence in what I'm doing and so can try to take a bit more control, before I adjusted myself to what my sugars were doing, now I, most of the time, can try to get them to where they need to be to fit in with me! I'd say a lot of that was due to doing dafne, not just the course content but the time it gave me to think things over.

Hope you can get on dafne or similar. Feel free to pm me if you want to talk.

A
 
Hello there!

I've been type one for thirteen years and have only really just began to sort out my levels. The thing that's helped me the most has been meeting people via this website and the carb counting course I'm on at the moment as there are a fair few people my age on it.

Tom
 
hyper-Suze said:
Thanks again! The pump does sound like my second option if I can't overcome my psychological issues with my counsellor and if I can't access this dafne course. I'm happy to travel to attend so will need to speak to my dsn! I don't have any reaction to novorapid nor a fear of needles(that was an issue which I have since worked on and sorted!) but yes just taking the basal! This is the third regime/type of insulin I have been put on, the one affected my moods really badly. But this current one is ok and the basal is probably what is only just keeping me from dka. It is a whole raft of things as to why I can't take my novo!
Hi aymes, I attended a support group a few years back but it isolated me further as it was ALL type 2 members, no one my age or type so felt like an alien! It was nice to read your comments that you've felt the same and diagnosed at a similar age and length! Are you all under control now, and all because of dafne? I need to get on that ASAP!
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If you cant /wont take Novo would you try Humalog ? I am using Humalog , I used to have Novo but changed from it last year. 🙂
 
Hi aymes, wow, how did you find out about the training for organising the support group? I was interested in doing that but worried that noone that age would want to attend and then I worried I'd be a failure! Lol!
Hi Tom, 'Eastbourne...gods waiting room' that's funny! I used to live in worthing and took my driving instructor exam in eastbourne...deffo a place filled with coffin dodgers! So have you had any complications from having unstable sugars for 13 years? I have a few bleeds in my eyes but that's about it. How old were you when diagnosed?
Hi insulin addict...yeah, I've tried humalog but that was a really bad insulin for me. Reacted bad to it. Someone has since told me it was a pig insulin and maybe the hormone didn't work well with me? Dunno how right that info was? Novorapid works for me as I have weight issues but by having high sugars that I try to control my weight, suppose its a type of eating disorder...just life threatening! Its also the embarrassment of hypos and losing my independence! Also, wanted to ask you...how does a low carb diet work with your diabetes? I presume you take a little less insulin but does that keeps your weight down? What sort of foods do you eat for dinners and snacks during the day? Sorry for all the questions folks!!
 
hyper-Suze;49538 Hi insulin addict...yeah said:
Hi Suze , As you know I Low Carb , I will say it is not for everyone and some people will be more suited to the diet than others, luckily for me I dont really like many Carbs so find it very easy to stick to. It has reduced my sugar levels and also the amount of Insulin I need daily. It is a very good way to lose weight and also to maintain a healthy weight, I am also never hungry, quite the oposite I sometimes forget to eat 😱 I eat chicken , steak , seafood , vegetables , fruit , nuts, seeds, cheese, eggs, bacon , etc . I would just say Suze you really need to start taking your Bolus Insulin , I wont patronise you , but you obviously know that it is not a healthy way to lose weight and is doing your body no favours , I know how easy it is to be trapped in a vicious cycle with an eating disorder and that is what this is. I have suffered with Anorexia in the past. :( If you want to chat anytime feel free to PM me .
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hyper-Suze said:
Hi Tom, 'Eastbourne...gods waiting room' that's funny! I used to live in worthing and took my driving instructor exam in eastbourne...deffo a place filled with coffin dodgers! So have you had any complications from having unstable sugars for 13 years? I have a few bleeds in my eyes but that's about it. How old were you when diagnosed?
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I was diagnosed in 1996, I guess I was either five or six. I'm eighteen now.The only thing I've had from years of unstable blood sugars broken up by patches of goood bloods is that I've got signs of early diabetic change in my eyes. This was picked up on by my retinopathy scanning a year ago. Eastbourne is most definitely filled with coffin dodgers!
 
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