New Phase

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Grace Greenaway

Grace Greenaway

Member
Relationship to Diabetes
Type 1
Hello!

I've never been on a forum before, let alone posted, so I'm not sure how this goes but:

I've been Type 1 for 21 years now (diagnosed at the age of 5) and I think I spent the majority of my teenage years and early 20's pretending to myself that I wasn't diabetic and feeling surprisingly invincible, despite being a regular in hospital for DKA. For all the care and attention I get from my consultant and DSN, it's very rare that I stumble across someone who actually has diabetes - especially Type 1 - and can compare war stories, - it's usually 'oh, my Grandma's diabetic' or 'is that the good type or the bad type?'

I'm entering a new phase of my life (and therefore so is my diabetes). My Husband and I are preparing to try for a baby and I've never wanted anything so badly in my life. I know the facts, I know (mostly) what I need to do to to get myself ready but with a HbA1c that's been so high for so long (last HbA1c was 75 in April 2017 - the fact that I don't have one more recent speaks volumes I think), it feels like an impossible and draining task.

I'm looking forward to hearing other people's stories and getting advice and maybe some support. I haven't really thought too deeply about it before, but I guess being diabetic can be pretty lonely sometimes, even with the strongest support system.

Appreciate you reading, if you got this far 🙂
Grace x
 
Welcome Grace.... I guess that I'm one of those with the "good D".... Oh how that irritates me, what ever type it's an incurable life threatening chronic condition...

Best of luck in starting your family; I'm so happy that you are recognizing that you need to change your life (regarding D)
 
Grace Greenaway said:
Hello!

I've never been on a forum before, let alone posted, so I'm not sure how this goes but:

I've been Type 1 for 21 years now (diagnosed at the age of 5) and I think I spent the majority of my teenage years and early 20's pretending to myself that I wasn't diabetic and feeling surprisingly invincible, despite being a regular in hospital for DKA. For all the care and attention I get from my consultant and DSN, it's very rare that I stumble across someone who actually has diabetes - especially Type 1 - and can compare war stories, - it's usually 'oh, my Grandma's diabetic' or 'is that the good type or the bad type?'

I'm entering a new phase of my life (and therefore so is my diabetes). My Husband and I are preparing to try for a baby and I've never wanted anything so badly in my life. I know the facts, I know (mostly) what I need to do to to get myself ready but with a HbA1c that's been so high for so long (last HbA1c was 75 in April 2017 - the fact that I don't have one more recent speaks volumes I think), it feels like an impossible and draining task.

I'm looking forward to hearing other people's stories and getting advice and maybe some support. I haven't really thought too deeply about it before, but I guess being diabetic can be pretty lonely sometimes, even with the strongest support system.

Appreciate you reading, if you got this far 🙂
Grace x
Click to expand...
Hi Grace, welcome to the forum 🙂 It's not uncommon, I think, for people to rebel in their younger years against their diagnosis - it's a tough enough time for anyone growing into adulthood, but when you have a chronic condition like diabetes it can be even harder. However, you can't change the past, only look to the future, and hopefully a happy future that contains some little people not too far away! 🙂

I think it's probably appropriate to suggest that you take 'baby steps' to begin with. Don't try and change everything at once, but do take steps to improve your diabetes management each day. You probably don't want to reduce your HbA1c too quickly, because this can cause problems as your body can find it difficult to cope with rapid changes. What insulin regime are you on? Do you carb count? I'd suggest starting a food diary, writing down the carbs in everything you eat and drink each day, whilst recording your before and after meal readings and insulin doses. Be patient and methodical and hopefully you will get into the swing of things and be able to spot problem areas where you can then improve things 🙂

This forum was started by a lady who was diagnosed in early childhood - she was in her 30s when she decided to create the forum because she had never known another Type 1 in all those years. It's pretty rare in the population as a whole. There's lots of us here though! Practically any question or concern you may have should be able to be answered by our members, so don't feel as though you should 'know everything', and no question is considered silly 🙂
 
Hello Grace, welcome along.

I'd never been on a forum before this one (still my only one), but is nice to feel part of a group that "gets" what you go through, whether it's good or not so good. Everyone around me is very supportive, but it's still just me, who has to deal with the condition and everything that it entails...which is where I guess we can feel a bit our own.

Anyway, as @Northerner says, you can't change the past, so it's a matter of putting that behind you closing that door and moving forward with a new plan. It's good that you have such a positive goal to work towards...this will definitely keep you focused. As you make small changes they will just become second nature.

Do you have a good DSN that you get along with? Maybe it's worth starting with a phone call, an up to date HbA1c, an appointment and a chat with them regarding your new goals. They are definitely there to help and support you.

Plenty of our members will have been through the same things as you...that's one of the great things about the forum..someone's nearly always been there, done that, got the tshirt.🙂
 
Hi Grace

Like you this was my first and only forum that I have joined. I am delighted that I did so and have learnt so much from others on here. I recognise the isolation that you describe. I knew just one other person with T 1 so getting info from people on here who have so much experience was great.

Good news to hear that you are planning to take back the control of your Diabetes. As @Northerner said it is probably bes5 to take small steps and change one thing at a time. That way you will also see the impact of the changes to make and will be able to make adjustments bit by bit.

It may be a good idea to involve your consultant and DSN in your plans as from what you have said they will no doubt be delighted to hear of the desire you have to improve your management, and can then support you.

What will be your first step?
Do you need to do a basal rate test to get that sorted?
Do you need to do more testing?

What will nit be? Let us know and we will help in any way that we can.
 
Hi Grace how are you,🙂 not much to add if anything but welcome to the forum.
 
Welcome Grace, you will get tons of support and help here to get your bg under control, I look forward to celebrating with you :D
 
Hi Grace, you’re in the right place for support and sharing of experiences. I know there are members on here who have experience of trying to conceive and type 1.
If you fell like it, please tell us a bit more about your meds and your plans to bring your levels under control.
What are you seeing as the biggest obstacle at the moment?
Good luck!
 
Northerner said:
Hi Grace, welcome to the forum 🙂 It's not uncommon, I think, for people to rebel in their younger years against their diagnosis - it's a tough enough time for anyone growing into adulthood, but when you have a chronic condition like diabetes it can be even harder. However, you can't change the past, only look to the future, and hopefully a happy future that contains some little people not too far away! 🙂

I think it's probably appropriate to suggest that you take 'baby steps' to begin with. Don't try and change everything at once, but do take steps to improve your diabetes management each day. You probably don't want to reduce your HbA1c too quickly, because this can cause problems as your body can find it difficult to cope with rapid changes. What insulin regime are you on? Do you carb count? I'd suggest starting a food diary, writing down the carbs in everything you eat and drink each day, whilst recording your before and after meal readings and insulin doses. Be patient and methodical and hopefully you will get into the swing of things and be able to spot problem areas where you can then improve things 🙂

This forum was started by a lady who was diagnosed in early childhood - she was in her 30s when she decided to create the forum because she had never known another Type 1 in all those years. It's pretty rare in the population as a whole. There's lots of us here though! Practically any question or concern you may have should be able to be answered by our members, so don't feel as though you should 'know everything', and no question is considered silly 🙂
Click to expand...
Hi, thank you for responding. I have an Accu-Chek Aviva Insight Pump System and I carb count.

I've been keeping a food diary for the last 6 weeks now... My blood sugars have gradually come down under close observation. I can be a bit obsessive once I start a project so I've been keeping the world's most detailed Excel spreadsheet logging my blood, insulin doses, carb/food intake, water intake and sleep. It's colour-coded and has line graphs and everything. I can really see the trends during he course of the day and it's spurring me on to keep close control. 🙂 I've been making daily averages of by BMs, turning them into weekly averages and then comparing those figures to a HbA1c conversion chart. It's all moving in the right direction so I'm feeling really positive for the first time! Grace
 
Lisa66 said:
Hello Grace, welcome along.

I'd never been on a forum before this one (still my only one), but is nice to feel part of a group that "gets" what you go through, whether it's good or not so good. Everyone around me is very supportive, but it's still just me, who has to deal with the condition and everything that it entails...which is where I guess we can feel a bit our own.

Anyway, as @Northerner says, you can't change the past, so it's a matter of putting that behind you closing that door and moving forward with a new plan. It's good that you have such a positive goal to work towards...this will definitely keep you focused. As you make small changes they will just become second nature.

Do you have a good DSN that you get along with? Maybe it's worth starting with a phone call, an up to date HbA1c, an appointment and a chat with them regarding your new goals. They are definitely there to help and support you.

Plenty of our members will have been through the same things as you...that's one of the great things about the forum..someone's nearly always been there, done that, got the tshirt.🙂
Click to expand...
Hi Lisa,

Thanks for commenting - I have to say I'm very glad I joined, it makes a big difference to know that I have access to people who 'get it' if/when I need advice or support.

I did have a good DSN who I get on really well with but I'm being bounced around a bit between other, less familiar members of the DSN team at the moment - I get the feeling they're not sure who's specialist category I fall under (Pump, Pre-Conception etc.). I have an appointment with one of them coming up next week so that's a good start and seeing my Consultant (who I always get on well with and have been seeing since I became an adult) in November. I did a HbA1c blood test last Thursday so hoping to get results this week. I've put in a lot of effort to keep control for a few weeks now so - while I'm certainly not expecting perfection - I'm hoping it will at least be under 75! 🙂
 
SB2015 said:
Hi Grace

Like you this was my first and only forum that I have joined. I am delighted that I did so and have learnt so much from others on here. I recognise the isolation that you describe. I knew just one other person with T 1 so getting info from people on here who have so much experience was great.

Good news to hear that you are planning to take back the control of your Diabetes. As @Northerner said it is probably bes5 to take small steps and change one thing at a time. That way you will also see the impact of the changes to make and will be able to make adjustments bit by bit.

It may be a good idea to involve your consultant and DSN in your plans as from what you have said they will no doubt be delighted to hear of the desire you have to improve your management, and can then support you.

What will be your first step?
Do you need to do a basal rate test to get that sorted?
Do you need to do more testing?

What will nit be? Let us know and we will help in any way that we can.
Click to expand...
Hi!

Everyone's so nice on here - I'm so glad I signed up 🙂

Replied to a couple of other posts already but the start up process has basically been blood tests every 30 mins for the past 6 weeks and logged everything on a detailed Excel spreadsheet. It's probably not something I'll be able to sustain in the long run but it has given me a lot of useful data on what's working for me and what's not. I can see general trends which have enabled me to make some small changes to be basal rate and I'm a lot more confident on carb-counting than I've ever been before. I get my latest HbA1c result later this week, hoping it'll at least be below 75, and I have appointments booked with my DSNs, Consultant and Retinopathy Dept.

Tried to start with small steps but got too excited when i started to see some positive changes and now it's all go!
 
Radders said:
Hi Grace, you’re in the right place for support and sharing of experiences. I know there are members on here who have experience of trying to conceive and type 1.
If you fell like it, please tell us a bit more about your meds and your plans to bring your levels under control.
What are you seeing as the biggest obstacle at the moment?
Good luck!
Click to expand...
Hi!

Thanks 🙂 I think the biggest challenge at the moment is reaching an achievable HbA1c. 6 weeks ago when I found out my last result was 75 - and I realised what that result actually translated to in terms of an average BM (11.8!) - getting my HbA1c below felt like it would probably take years to get right and I was briefly crushed with disappointment because I had it in my head that becoming a mother was probably a bit of a pipe dream for someone like me. But then I joined here and started reading other people's stories about lowering their HbA1c's and it made me feel like it was achievable. And that has ultimately kick started some big changes. I'm definitely someone that likes to work towards a goal so the possibility of having a baby has ultimately been the catalyst for me taking control of my diabetes. I'm hoping that implementing these changes now with a goal in mind, will get me in the long-term habit and even after I've had a baby (finger's crossed!) I won't go back to how I've always been. I get my HbA1c results end of this week!
 
Welcome to the Forum Grace. Good luck with things. Pumps are one of the best ways up to now & its good you are on one 😉
 
Grace Greenaway said:
Hi, thank you for responding. I have an Accu-Chek Aviva Insight Pump System and I carb count.

I've been keeping a food diary for the last 6 weeks now... My blood sugars have gradually come down under close observation. I can be a bit obsessive once I start a project so I've been keeping the world's most detailed Excel spreadsheet logging my blood, insulin doses, carb/food intake, water intake and sleep. It's colour-coded and has line graphs and everything. I can really see the trends during he course of the day and it's spurring me on to keep close control. 🙂 I've been making daily averages of by BMs, turning them into weekly averages and then comparing those figures to a HbA1c conversion chart. It's all moving in the right direction so I'm feeling really positive for the first time! Grace
Click to expand...

Ha! I do pretty much the same thing, and ditto on the encouragement & sense of control from seeing yr charts and averages moving in the right direction.
 
Eddy Edson said:
Ha! I do pretty much the same thing, and ditto on the encouragement & sense of control from seeing yr charts and averages moving in the right direction.
Click to expand...
Well I'm glad it's not just me! It's definitely the most comprehensive way of doing it. I've used so many different log books and apps but I've never found one that gives me enough freedom to log the way I ran my life... Have you?
 
Grace Greenaway said:
Well I'm glad it's not just me! It's definitely the most comprehensive way of doing it. I've used so many different log books and apps but I've never found one that gives me enough freedom to log the way I ran my life... Have you?
Click to expand...

Nope. Actually, I've never really tried that hard, but I suspect that each one of us nerds is a unique & special snowflake 🙂
 
Grace Greenaway said:
Quick update on my HbA1c result: 58!

That's apparently the lowest I've ever been in my life! :D Two more months and I'll hopefully be below 48!
Click to expand...


Hey Grace

That's great, well done. You must be happy with that and deservedly so...sounds you've worked really hard for it. Onwards and downwards🙂.

I bet you can't wait to catch up with your DSN and consultant now to work through a plan to your goal...you will be your own expert in no time at all! 🙂
 
S
Grace Greenaway said:
Quick update on my HbA1c result: 58!

That's apparently the lowest I've ever been in my life! :D Two more months and I'll hopefully be below 48!
Click to expand...
uch good news Grace. It must feel so good when the efforts you make pay off. I look fotward to hearing about your DSN and Consultant appointment. Away at present but just wanted to post this. Will catch up again in Oct. Well done.
 
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