partner of newly diagnosed 34 yr old male T1 diabetic

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partner of newly diagnosed 34 yr old male T1 diabetic

Postby g&d » Thu Oct 29, 2009 4:54 pm

Hi all,

My partner at the age of 34 has just been diagnosed with T1D. Just wondering if anyone out there has a bit more info as most websites are geared for people a lot younger. Also a little advice on how to be a good partner and not become a mental case about everything would be great!

Thanks Georgie
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Postby Jen (nli) » Thu Oct 29, 2009 6:16 pm

Hi Georgie,

Ah - welcome to being a T3 diabetic (T3 support T1s and T2s).

My brother was diagnosed T1D earlier this year at age 36, three months before his marriage. Its been a big period of adjustment for him and I daresay his partner. I was diagnosed at 19 / 20. Before my diagnosis, no one in our family had T1D. Shortly after my diagnosis in 1989, my uncle was diagnosed in his early 50s. Again, another big adjustment.

I don't think there is any one answer to your question. But I do think its really important for partners to listen to each other, to take a problem solving attitude and to respect the condition. It can be complex and difficult to manage, and to those who are new to the condition, it can seem as if it doesn't entirely make sense.

Since my diagnosis 20 years ago, I've had three partners (relationships of two years or more...), and what I love about my husband is that he doesn't blame me for things when they go wrong. He just listens, is interested, offers to come to certain appointments (not all obviously), and is open minded about things. He doesn't judge me.

If he started to tut tut over my reading of 20 - that would drive me insane. Honestly, I know 20 is not great, so I don't need someone else telling me that. Trust your partner to take care of themselves.

I like my partner to recognise that I have D, but at the end of the day, its my condition. He'll help out if I need help (hypos etc, again, not common at the moment), but usually I'm the one managing it on my own and that suits me fine. I have heard of some partners who "rescue" their T1D partner if they drop below 3.9... I guess that's up to you to decide, but personally if my partner did that I think I'd go ga-ga, and I'm sure he'd burn out! D is fully my responsibility. It only becomes his responsibility if I require assistance.

Let your partner eat cake and chocolate occasionally. As someone who spent 15 years of the last 20 years avoiding chocolate and sugar unnecessarily - to let a diabetic eat in peace is gold. Carb counting will sort out a lot of issues.

When I first met my husband (we were friends for years), he was trying to cure me. He now realises that its not going to cured by positive thinking or herbs or anything magical. He's accepted the fact that its staying. He's realistic about it.

You may want to attend some of the initial medical appointments with your partner, if your partner is in to that. I think this can show support. You may want to learn how to use a glucogon injection (when you are ready) as this may need to be used at some stage in the future. Personally, I was diabetic for 16 years before I needed a glucagon shot.

Try not to blame your partner or the diabetes for things. I had one partner who said to me "If only you weren't a diabetic...". Its a little like saying "If only you weren't you...". Its been great to have a partner that has said, time and time again "I love you for you...". He hates the diabetes, don't get me wrong, but we both respect it. I've heard of less positive situations where the partner has resented the diabetes ... and this is so hard. Its not like anyone can tell it to leave!

I could go on but I guess its just important to listen and be there, not to judge things and to take a problem solving attitude. Good luck. Seems as if you are on a good start by posting the question.
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Postby Jen (nli) » Thu Oct 29, 2009 6:26 pm

Also - the Starters Kit is really good if you are diagnosed as an adult...

http://www.realitycheck.org.au/starterkit/
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Postby ek » Thu Oct 29, 2009 6:55 pm

Hi Georgie, Welcome to reality check. I am 39 and was diagnosed t1 June this year. No family history, no gestational diabetes, no warning. The learning curve is steep but having someone supportive by your side makes the journey so much easier. I agree with Jen the JDRF kit has some great materials in it, it doesnt seem to matter how often you read through the material supplied there is always something you overlooked last time. As far as information which is aimed more towards adults with t1 i havent found anything better than reality check. Here you will learn from the real life experience of others. Here I have learnt that you CAN inject through clothes you CAN eat tim tams and that all the feelings that accompany life with t1 are normal. Hope things go well for you both it wont be easy at times but it is suprising just how quickly you learn to adapt.
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Postby Mel » Thu Oct 29, 2009 7:30 pm

THe Starter Kit is produced by Reality CHeck ek.
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Postby bj09 » Thu Oct 29, 2009 7:45 pm

Hi Mel,

The Starter Kit and the book "Straight to the Point (a guide for adults living with type 1 diabetes)" which is provided to recently diagnosed adult T1D's are similar in content. The book is produced by JDRF and is distributed in a shoulder bag along with a free meter and other literature.

I think this package of gear is refered to as a starter kit.
bj

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Postby artemis » Thu Oct 29, 2009 7:47 pm

I second everything jen(nli) said. My husband and I have been together now for over 35 years, and he's seen me through thick and thin, DKA, other illnesses (nothing to do with D) and assorted complications. He's not judgmental, and only occasionally asks 'did you bolus for that?' and that's usually when I'm bingeing on chocolate!

I think it'd be very hard to be the partner of a T1, but a good partner is worth their weight in gold. My husband knows almost as much about my D as I do, and I'm grateful for that.

I'd say be there when your partner needs you (and sometimes they won't know that they need you), but don't press it. It's a fine line, but you will learn.
Jane
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Postby Tony » Thu Oct 29, 2009 8:06 pm

Hi Georgie,

Jen's post (from my experiences) really says it all.

I like my partner to recognise that I have D, but at the end of the day, its my condition. He'll help out if I need help (hypos etc, again, not common at the moment), but usually I'm the one managing it on my own and that suits me fine. I have heard of some partners who "rescue" their T1D partner if they drop below 3.9... I guess that's up to you to decide, but personally if my partner did that I think I'd go ga-ga, and I'm sure he'd burn out! D is fully my responsibility. It only becomes his responsibility if I require assistance.


You've also made a great start yourself in trying to learn about life with T1D and supporting your partner. Hope we can help.
If you want something done, do it yourself. Make the effort and start the Change!
Tony
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Postby Mel » Thu Oct 29, 2009 8:20 pm

I think this package of gear is refered to as a starter kit.


BJ I was clarifying that the link Jen mentinoed/posted to was to the Reality Check Starter Kit

As an aside I suspect JDRF wouldn't use the treminology Starter Kit-you'd think they would use a name other than the one we've been using for the last 7 years or so. if we were a commercial organisation that'd amount to an infringement of copyright.
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Postby ali m » Thu Oct 29, 2009 8:36 pm

I've always resisted any input from friends and lovers with regard to my D, but then I've had it for 31+ years, and I'm a bossy b#$%h to boot.
Once the newness wears off, he may simply need for you to "be there" when things fall in a heap. And they will. It's hard playing a pancreas (ok, Islets of Langerhan for the purists). It isn't failure, it's just life.
As others have pointed out - your fella is a grown up, and doesn't need nagging about food or BSLs. He might need some initial help maybe working out carb contents of various favourite foods - that's not too invasive, and could be very helpful.
If you carry a handbag, then a container of glucose or jelly beans might come in handy if he uses up his own supply. My dear mum still does this, even though I left home nearly 20 years ago, and have lived either OS or interstate for much of that time.
Fussing, especially when I'm low, really really irritates me. I find it best if people quietly step away from the tim tams (ok, not ideal hypo food, but I like them) and don't talk. I can't eat and make polite conversation at the same time when I am low. I find I recover more quickly from a hypo if I don't have to worry about other people as well (ie alone is best for me).
Together you will find the right balance for those mood altering moments (highs and lows).
And remember, he isn't a poor invalid. He's just another bloke with a buggered pancreas. He can still do pretty much everything he did before D, and maybe better now he's diagnosed and feeling human again.
Best of luck to you both.
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Postby bj09 » Thu Oct 29, 2009 8:59 pm

Hi Mel,

Wasn't trying to cause issues. It just seemed that ek being so recently diagnosed was refering to the JDRF kit rather than the RC starters kit Jen provided the link to.

The people I have come across have refered to the JDRF pack as a "starters kit" or "starters pack" or similar but I don't think that means JDRF call it that.

The JDRF booklet acknowledges the various contributors and I suggest, but don't know for sure, that a lot of the info is in both. Certainly there are a lot of similarities

Sorry if I have caused confusion. Hope this clears it up.
bj

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Postby Kate » Thu Oct 29, 2009 10:59 pm

I assume you have had a hunt round our website already but there are a number of articles relevant - I was reminded of the following when I put 'partner' into the search button up above in white:

http://realitycheck.org.au/ten_commandments.htm

http://www.realitycheck.org.au/rcl_relationships.htm

http://realitycheck.org.au/punch.htm
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Postby ek » Fri Oct 30, 2009 9:49 am

oops my mistake sorry bj & Mel the kit I recieved when diagnosed was the JDRF kit which is referred to as the T1D Resource Kit. I didnt realise there was a starters kit.
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Postby seekay » Fri Oct 30, 2009 2:16 pm

This is the 2nd time i've come and looked at this discussion and each time i have bawled my eyes out.

Good luck g&d, you are awesome asking the question.

I suppose i am teary because it would be the last thing on my hubby's mind to ask for any help and maybe, just maybe, the journey so far could have been easier for me if he'd had the wisdom to be like you. Still love him lots though.

Perhaps (and more likely) i'm teary because i've suddenly realised our life is not all about me, and i'm starting to wander what life for him is really like because of my D. He's probably a quiet supporter who may very well have put a lot of thought and effort into his participation in my D and i'm too selfish to realise.

I really can't add any useful advice for you, but i wish you well.
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Postby Leah » Fri Oct 30, 2009 4:17 pm

Seekay, my husband is like yours, he has absolutely no involvement in my D. (well except to jab me in the butt once or twice after too much red wine) but in the 13 years we have been married I think he as walked into an appointment with me maybe 5 times.

I made him come to the dietitians with me a few weeks ago because I was sick of "if you ate more you wouldn't hypo so much". We actually made it though 2 weeks of him not dishing up seconds for me after that.

You are a good partner g&d to try to find out what you can. See if he wants you to go to the appointments and even if he says no, ask again. DE and dietitians are so helpful, and I'm guessing you are probably the chief cook so the more info you can arm yourself with the better.
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Postby ek » Fri Oct 30, 2009 8:13 pm

hi just to follow on Leahs post I have found the symply to good to be true range of cook books brilliant. The recipies are easy, tasty and the grams of carbs per serve have been calculated. Makes life much easier. Hope this helps.
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Thanks.

Postby g&d » Sat Oct 31, 2009 4:31 pm

Thank you all so much! We (and I know it is not all about me) are doing o.k. at the moment. I am trying not to be a nag but it's sometimes really hard beacuse everything is new and the only reason is the stress of the uncertainty. After 17days on insulin with average readings b/w 10-20 they have come down to b/w 3-13, why we aren't sure. Diet the same bit more excercise but what have come to discover is that you can do everything right and it still changes. We have been dealing with RMH and found it a little hard to get through and speak to someone(rang in 2 tuesdays ago with readings was told someone would call next day, still waiting) Gone back to local GP getting the DE to take us on there and hopefully get some continuity of service. This was all spurred on about the concern of a possible hypo overnight and we diddn't have the hypokit needle. I loved him before but know somehow I love him even more and want to be the best support person I can. There is so much to know and learn and it is so scary! Thanks again and I will be back on beacuse it seems like everyday there is a new question or idea both of us want to bounce of each other. Having people in the real world to talk to is a lifeline.
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Postby Anne » Sun Nov 01, 2009 9:54 am

Hi Georgie,
a difficult role, being partner and supporting someone with diabetes. In my experience, the best way to help is to ask your partner what he is finding helpful or not, from his perspective.

On my wedding day, I put glucose tablets in my husband pockets, my dad's, my mother's handbag and my sister's. Then I stopped talking about sugar as this day was not about diabetes but i just needed to make sure that it was catered for.
Hypos are times when I do need someone calm and matter of fact with sugary snack available quickly. I don't need the orange box, but sugar and possibly some guidance about what will bring my blood sugar up quickly may help as I can get confused and stubborn. No one has ever been trained to use the glucagon kit, though I have vaguely explained to my husband what it was and how to use it.

Maybe, having some sugary snack (hypo cure) in your bag and/or car/and bedside cabinet is already a big help. And just being there to be aware of what is going on, but not actually doing anything unless there is an emergency, just listening when your partner wants someone to 'know about it all', not necessarily becoming an expert or a nurse.

I am grateful for my husband to be aware that there is a lot more about me than just diabetes. Diabetes is part of the picture but not all is related to it. It drives me insane when people link everthing that happens to me to diabetes, but on the other hand if they completely ignore that diabetes is part of the picture, this does not help either. Not an easy job, being type 3 (partner or relative of someone with diabetes), it sounds like you are doing a great job already.

I asked my husband how he adjusted to my diabetes after we met (I had had diabetes for 9 years before we met): he informed me that he bought a generic book about diabetes in a shop to find out about diabetes in general, then 'just listened to me'. He normally lets me get on with it, but does support me if I am in trouble/hypo and struggling, otherwise diabetes is not really part of our discussion.

My main advice is that if he cannot persuade me to drink/eat some sugar when hypo, then the ambulance or hospital is the next step if I am unconscious or not recovering, and we have never used this option so far, but I am lucky that I can function with very low and very high blood sugars without needing much help. He would probably know how to use glucagon if needed but my old kit ran out of date and I have not had it replaced yet, oops. Which reminds me that keeping enough stock and supply before it all runs out is another good idea, but that's up to me to make sure I keep enoug insulin and supplies, nothing to do with my husband, unless we are just about to fly on holiday : 'passport? insulin? meter? strip? baby snacks? travel insurance?'

It is a steep learning curve but it does get sort of routine after a while, with its ups and downs.

And yes, it does not follow the books so doing the right thing day and night does not guaranty perfect blood sugars as diabetes has not read the same books, unfortunately. A lot of factors influence our blood sugars, not just food, insulin and exercise. Once insulin therapy starts the pancreas can feel a bit less under stress and it is quite normal to get lower blood sugars. Quite a lot of people go into honeymoon and they require only a little insulin or even none for some time. This period is very variable.

I think that in early days it is important to keep in close contact with the diabetes team and /or GP as things can seem very strange and difficult to predict and doses may need to be adjusted quite often initially. With time it gets easier to make sense of it, most of the times, anyway.

Good luck, just fire questions away if it helps.
Anne
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Postby freya » Sun Nov 01, 2009 2:46 pm

Hi Georgie,

I am a T3 too, my husband was diagnosed with T1 when he was 24... it was a major shock for us but it does get easier. I agree with the other posts, often the best way to support someone is to help with things like thinking of nice healthy food to eat, getting exercise together and sometimes giving them space when they are trying to find the best hypo cure.

We have never let it get in the way of life, we've travelled and lived overseas. It sure does make you appreciate life and each other a lot more though!

When you get used to things think about a pump, it made a big difference to our lives... more flexibility plus other advantages. That's if you can afford it and it is another change that takes time to get used to and is not for everyone.

All the best.
Anna
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Postby Cathyrob » Sun Nov 01, 2009 2:52 pm

My advise would be to learn to become "aware" of hypo's which may sound like diabetes 101 but as many of us know, the reality is it sometimes very hard to work it out both for the diabetic and the non-diabetic partner and sometimes it just catches you out.

My hubby fits in to the "save your partner" personality type and to be honest he has "saved me" or rather "saved us" more than once whilst I was driving in the early years of us dating. Good thing for you, you are both learning all about D together to some degree. For me, being the experienced D i forgot to mention hypos and it's effects and one time we were driving accross the harbour bridge (10years ago) around mid morning. I needed morning tea but hadn't quite gotten around to eating it so as my bsl dropped crossing from the city side to Nth Sydney side all I can remember is him grabbing the steering wheel and steering us to safety. Talk about creating a good impression! We laugh about it only because we survived all the honking and dirty looks everyone gave us - not that I remember 'cause I was all zoned out.

The other thing is to watch out for the effects of alcohol.
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Postby Jen (nli) » Sun Nov 01, 2009 3:56 pm

...all I can remember is him grabbing the steering wheel and steering us to safety.


Far out! That's pretty intense! And on a date too? OMG.
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Postby Jessie L » Sun Nov 01, 2009 10:46 pm

artemis wrote:I second everything jen(nli) said. My husband and I have been together now for over 35 years, and he's seen me through thick and thin, DKA, other illnesses (nothing to do with D) and assorted complications. He's not judgmental, and only occasionally asks 'did you bolus for that?' and that's usually when I'm bingeing on chocolate!

I think it'd be very hard to be the partner of a T1, but a good partner is worth their weight in gold. My husband knows almost as much about my D as I do, and I'm grateful for that.

I'd say be there when your partner needs you (and sometimes they won't know that they need you), but don't press it. It's a fine line, but you will learn.

Artemis, where on earth did you find such a man!!! - this guy is a keeper :o)
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Postby g&d » Sat Nov 14, 2009 5:23 pm

Hi All,

After just 4 weeks with no response from RMH we have taken things into our own hands. Wehave adjusted the novo b4 meals to 10-4-10 with 16 of leve at dinner as well. The past three days have been perfect no hypo's and readings between 4 and 8.5.( previously hypoing once or twice aday) Just interested what doseages other people are on. We know there is no normal but wondering!

We haven't spoken to anyone about a pump yet but have been reading on RC the pro's and cons. My partner is really anti the pump at present feeling that he dosen't want to be attached to something 24/7 but from my reading's it looks like it could be beneficial. Any advice?

Thanks
Georgie
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Re: Thanks.

Postby Kate » Mon Nov 16, 2009 7:07 pm

g&d wrote:found it a little hard to get through and speak to someone(rang in 2 tuesdays ago with readings was told someone would call next day, still waiting)


This is very worrying! I hate to say it, but some people (inc me) find you get better continuity of care going private - maybe try to hook up with a private endo and there are private diabetes nurse educators too. Sorry not great option cost-wise but an option if you can afford it - and the first 5 trips to nurse educator will be free if you get a 'Team Care Arrangement' from your GP - likely have to ask. We have a list of endos and educators who are good at Type 1 here www.d1.org.au/endos.htm if that helps. Getting some ongoing care and being able to get through to someone when you need some help is important.

Another option is to call the hospital and ask to speak with the endocrinologist on call - as a newly-diagnosed Type 1 (make sure you make it clear he is Type 1), you should (she says confidently) be able to get some help this way too. Good luck! Kate
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Postby Kate » Mon Nov 16, 2009 7:10 pm

And now I have just read your next post saying it was actually 4 weeks - I am horrified! I would really encourage you to pursue some other options to get some ongoing care and support from at the very least an endocrinologist, and a diabetes nurse educator as well in the early stages. I'm sorry you are having problems with the system - it is tricky to negotiate but I'd encourage you to persevere.

And re pump, here's an old discussion on same that might be a good place to start: http://realitycheck.org.au/RCforum/view ... light=pump
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Postby Kate » Tue Nov 17, 2009 9:15 am

And here's another pump discussion worth checking out - saved in the Solid Gold forum:

http://www.realitycheck.org.au/RCforum/ ... php?t=4074
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Postby g&d » Wed Dec 02, 2009 5:27 pm

Hi All!
Have recently seen the local DE who has adjusted my partner's insulin levels again. Dropped to 8-4-8 of novo and 14 of levemir. Since then there have been only a few hypo's (still no nypo's thank god! - not ready for that) and bsl's of around 4-10 . No reading over 13 for about 4weeks. We both have relaxed a little bit and enjoyed nites out for dinner and drinks with friends and family which has been good for both of us. Th DE was helpful and suggested he might be'honeymooning" which is good but possibly a little scary of what's to come. Reading on RC I see that things get a lot more complex with carb counting. We haven't been introduced to that yet, eating very healthly low gi low fat, just sticking to approx 80grams at breaky roughly 30 grams snack 60 grams lunch 30grams snack 80 grams dinner and another 20-30grams supper. It kinda feels like we have got a hold of this thing at the moment, but looking at post of how some of you guys are much more precise about your diet regime I am apprehensive of the fact that things are going to get harder.
My partner is dismissive of the honeymooning issue believing that we are just dealing with it better than some!
Any thoughts opinions tips or general chat is always greatly appreciated.
Ta
Georgie
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Postby Kate » Wed Dec 02, 2009 9:58 pm

Hi Georgie - Thanks for keeping in touch .... great to hear things are going ok and you are getting some help.

Carb counting actually gives you a lot of flexibility in my experience. It depends on what works for you though .... I love my food so knowing how to count it lets me eat anything - some people have pretty standard routines and eat pretty much same things every day so it's not such a big deal. I saw Kerryn Roem the first dietitican I have ever encountered who really "got" Type 1 and was smart, helpful, respectful and well organised ... can't speak highly enough of the carb countign session I did with her a few years ago. Cost a little but but she provided follow up on my stupid questions for nothing and if I'd had private health insurance i probably would have got half back ...

Good luck with it all .... a lot to take in but glad you are both doing ok ...

K
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Postby Jen (nli) » Wed Dec 02, 2009 11:52 pm

I agree with Kate in that carb counting can make things easier and more flexible. It has helped me enormously in leading a very normal life. Whilst I still have a predominantly low GI, low fat, high fibre diet - occasionally I want to break out and have something different! Carb counting is easy to do and enables me to be "normal" with food. So its well worth exploring that when the time is right.

Also, honeymoons differ a lot. My brother was diagnosed in January this year and by the sounds of it, didn't have much of a honeymoon at all. When I was diagnosed 20 years ago, I used tablets for six months, then was on a very low dose of insulin for about another six months, and over a two year period gradually increased to four injections. Everyone's journey is different. A lot is to do with how our bodies react to things. For example, my brother is genuinely having a tougher time with his D than I had initially. He's working very hard at it. There is no such thing as a "bad" or "good" diabetic, just individual differences in circumstances.

Re: whether your partner is honeymooning, your partner's endo may be able to test C-peptides to see if he is still producing any insulin. May give you some insight as to whether levels of insulin may change in the future?

Finally, I do hope things remain in control and manageable for you. Keeping bsls between 4 and 10 is fantastic. I genuinely hope it continues that way. If it does become a little harder to manage (as is the experience for a lot of us), just remember that sometimes its "simply" a matter of adjusting something. Options such as the pump, carb counting, doing something differently are always there. I'd hazard a guess that things will become harder at times in the future, but they also become a little easier over time because you get better at knowing what diabetes is. Keep asking for help, get a good team of professionals around you, try your hardest to keep a sense of humour about it, and most things are possible.
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