10 years and still struggling...

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Bethan Taylor

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Relationship to Diabetes
Type 1
I was diagnosed in 2006, through having ketoacidosis and nearly losing my life. 10 years later, at 19 years old I am struggling with T1D more than ever...
I need help. I do every bedtime insulin, maybe 1 daytime insulin and NO BG tests...I don't even know where my machine is. Ask you can imagine I feel knackered, drained and just completely awful ALL the time. I'm now getting trouble with my feet and legs and I'm panicking...
I don't have support at home or around me, so I am turning to the internet.
I would greatly appreciate some help, strength and guidance. - B x
 
Hi Bethan, Im not an expert when it comes to anythig T1, but i'm sorry to hear that you are struggling.
 
I have twin daughters your age. Life is tough without this. Don't be hard on yourself.

At least you are doing something.

Take some small steps each day.

Tell everyone on this forum what frustrates you.

Next step, test your blood, even if it is only once in a day. You can build it back up once you are ready.
 
Owen said:
I have twin daughters your age. Life is tough without this. Don't be hard on yourself.

At least you are doing something.

Take some small steps each day.

Tell everyone on this forum what frustrates you.

Next step, test your blood, even if it is only once in a day. You can build it back up once you are ready.
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Diabetes frustrates me. The one thing I was told when I was diagnosed is "this won't stop you from living a normal life, this won't change anything." Yet it has! It has changed everything...I was left from a young age with very little support and I just don't know where to start or how to carry on. It's almost like I don't want to. But I do, because I am barely functioning now. But thank you for my message, I think I need to find myself a daily mentor haha
 
Hello Bethan and welcome to the forum. The fact that you've posted suggests to me that you've got the motivation to get back on track, now to put it into practice. First step. Find your meter! And check the strips are still in date. Then as Owen suggests, start by testing once a day. Promise yourself that you will look at the reading and see it as a number. Just a number. Something that you can make calculations from. Do not see it ( if it is high) as a chastisement for your neglect. Then calculate your insulin for the next meal taking that number into account. Rinse and repeat every day for a week. Then add in a test at another time of day, and build up from there.Tell yourself that you won't get it right every time, nobody does, just aim for more good days than bad.Then suddenly you'll find you're in a routine of testing and adjusting. If you need a refresher course, have a look at the stickies at the Newbies section, there's a lot of useful stuff there.
 
Robin said:
Hello Bethan and welcome to the forum. The fact that you've posted suggests to me that you've got the motivation to get back on track, now to put it into practice. First step. Find your meter! And check the strips are still in date. Then as Owen suggests, start by testing once a day. Promise yourself that you will look at the reading and see it as a number. Just a number. Something that you can make calculations from. Do not see it ( if it is high) as a chastisement for your neglect. Then calculate your insulin for the next meal taking that number into account. Rinse and repeat every day for a week. Then add in a test at another time of day, and build up from there.Tell yourself that you won't get it right every time, nobody does, just aim for more good days than bad.Then suddenly you'll find you're in a routine of testing and adjusting. If you need a refresher course, have a look at the stickies at the Newbies section, there's a lot of useful stuff there.
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Thank you. This message has been a massive help! I just felt like all the times I've tried getting back on track and doing everything by the book, my blood tests are always high and all over the place anyway! It is very frustrating. I need more patience.
 
Bethan Taylor said:
Diabetes frustrates me. The one thing I was told when I was diagnosed is "this won't stop you from living a normal life, this won't change anything." Yet it has! It has changed everything...I was left from a young age with very little support and I just don't know where to start or how to carry on. It's almost like I don't want to. But I do, because I am barely functioning now. But thank you for my message, I think I need to find myself a daily mentor haha
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You just got yourself a whole lot of mentors.

Seriously s Robin says, one step at a time. Your mood will soon improve. It's like going for a run, the hardest part is tying the laces.
 
Hi Bethan and welcome from a type 2 🙂
It sounds like you've had a bad start and not really had the support that's essential to learn to live with diabetes. But it's never too late and there really is a lot of help out there and on here.
The fact that you've bothered to come on here and say hi shows that you're ready to try to come to terms with things and hopefully help yourself feel much better and in control.
You'll get lots of expert answers from any questions you ask from people who know. Watch this space! And good luck 🙂
 
Owen said:
You just got yourself a whole lot of mentors.

Seriously s Robin says, one step at a time. Your mood will soon improve. It's like going for a run, the hardest part is tying the laces.
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I've never done well with like "therapy" and "talking about it" but professionals don't seem to be helping out much, neither is people close to me so I'm kind of on my own here.
 
Bethan Taylor said:
Thank you. This message has been a massive help! I just felt like all the times I've tried getting back on track and doing everything by the book, my blood tests are always high and all over the place anyway! It is very frustrating. I need more patience.
Click to expand...
Looking at your age at diagnosis, your whole 'diabetic life' has been during the time of the greatest hormonal upheaval in anyone's life, growth spurts. pubity, etc. It's no wonder you have been wrestling with numbers.
 
Bethan Taylor said:
I've never done well with like "therapy" and "talking about it" but professionals don't seem to be helping out much, neither is people close to me so I'm kind of on my own here.
Click to expand...
Not any more. Stick in there. Is there anything that can help improve your life. What don't you like about D. I went through a denial period that posted nearly a year, lost my meter, gave up on most things. You can come back and improve your life. Call DUK helpline, they are brilliant and helped me.
 
Hi Bethan welcome to forum. I've been diabetic since I was 2. When I was a teenager if you tested and your blood sugar was high you weren't allowed to inject insulin to reduce it - this was because of the type of insulin that was around then, so there didn't seem much point in testing. However over time things changed with the insulin and I found that I could now make corrections. That made a huge difference to my life. I've done some fantastic things over the years and, ironically, the diabetes is the least of my problems. You can get it under control but it will take a while and a lot of baby steps. as has been suggested find your meter and just test once a day to begin with us then correct as necessary. Post your results on here and ask for any help that you need. Also use the forum to scream, shout and rant. Do you have a diabetic specialist nurse because you are certainly entitled to one to support you.
 
Bethan Taylor said:
I was diagnosed in 2006, through having ketoacidosis and nearly losing my life. 10 years later, at 19 years old I am struggling with T1D more than ever...
I need help. I do every bedtime insulin, maybe 1 daytime insulin and NO BG tests...I don't even know where my machine is. Ask you can imagine I feel knackered, drained and just completely awful ALL the time. I'm now getting trouble with my feet and legs and I'm panicking...
I don't have support at home or around me, so I am turning to the internet.
I would greatly appreciate some help, strength and guidance. - B x
Click to expand...
Hi Bethan..can't offer any advice re: insulin and T1D...I'm type 2...what I can say is this forum was such a help when I was told I was diabetic...stunned and that was just under two months ago...and you have been struggling on your own for ten years...must have been so difficult for you...especially since childhood...as others have said you have come to the right place...lots of support and advice here...i feel for you...I am not close to the majority of my family...often you will receive better...more honest advice from friends...even strangers...so please don't feel you cannot reach out to others...there is a lot of help...you just need to find it and you've a great start coming here...since joining I've had so many positive responses...when 'm having a good day...when I'm ranting...throwing a strop...with no judgment or disapproval...keep posting...would love to know how you are doing...Barbara
 
Hi Bethan,
And welcome to this wonderful forum full of amazing, helpful and kind people.
Some great advice has been given already, but I just wanted to say, I've been in the denial stage, I didn't test for a long time, and when I did, I was upset by the high numbers and what I considered to be failure on my part. Of course, high numbers are not a sign of failure, they are there merely to give you something to act upon.
My own dad has had diabetes since he was 9, he is now in his 60s, and doing really well, and has led a completely normal life (he did want to be a fighter pilot as a child, which is obviously one of the jobs diabetes stops you doing, but these are few and far between!) so taking the steps now to look after yourself will mean you will stay healthier for longer. There's no reason a person with diabetes can't live a normal life, and we are often healthier than people with a functioning pancreas, as we generally take extra good care of ourselves!
So, take baby steps. Remember you are absolutely not in this alone, you are not in any way a failure/disappointment or whatever other negative word you may think about yourself, you are a are a wonderful person, with a lot on your plate right now, but you'll get through it. This forum most definitely has your back.
 
Hi Bethan and welcome🙂

Have you got a Diabetes Specialist Nurse and consultant who you see at the moment? If not then ask your GP to refer you to a clinic. There are some great young adults clinics at some of the hospitals and they are really switched on to coping with all that diabetes and life can throw at you, it would be worth asking if there is a centre near you. Tell them what a struggle you are having and what injections you are taking or missing. They have seen and heard it all before and will be happy to help you get good control whilst you are young and before things start to get damaged. It is a hard move to talk about problems but from experience it was the best thing I ever did.

Baby steps are the way. Dust off your meter or if it's old ring up the company who make it and ask for a new meter. Like the others have said just start taking a reading when you wake up and write it down, it might not be a number you're happy with but it's a starting point to know where you are. Likewise with insulin, if you don't know your blood sugar and just dial up a random amount because you're eating that's a stab in the dark ( no pun intended) and a fast way to hypo or hyper territory. Ask to go on a carb counting course so you can meet some other T1's and things will become less guesswork and more normal.

Please don't despair over where to start. I was in turmoil for years with my control and didn't know what to do for the best. It takes time but it's doable and every small thing you can do towards getting better control helps to make you feel safer and less worried. I've managed a U turn with my control with help from my diabetes team and with the fabulous support and help on here. I never thought I could control my diabetes and thought everyone else was doing a fantastic job whilst I was making the biggest mess possible. It isn't like that, there's no definitive right way to control things as we are all so different and diabetes just likes to throw a spanner in the works somedays but reading others experiences and solutions is a great help. Aiming for more in range numbers once you get into the swing of testing is a good way to start and I found taking control was like a snowball, the better control I managed, the better I started to feel and the more I wanted to keep going.

I wish you well, please let us know how things go. We all 'get it' on here and I really hope things start to improve for you 🙂
 
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Hi Bethan, just to let you know that you are not alone
 
I was also wondering if you had a Diabetes Specialist Nurse too. My DSN is amazing, and I can ask her anything. Mine gives me blood meters that she feels will suit me so you may get a nice new freebie too that you could give you a bit of motivation to test more regularly. Diabetes isn't an easy ride and I still get times when I 'let myself go', we all do and it is normal, but getting the support you need is an important first step to helping you manage your condition. My brother was diagnosed at 10 and he didn't look after himself for a long time, very hard time of life for any child to be diagnosed, but got himself back on track in his 20s and is doing really well and he is now in his 40s. You will get there.
 
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