# Mam to type 1 son to



## J7BLE (Mar 16, 2019)

Hi, my name is Julie and I’m a Mam to Matthew who is 11 and was diagnosed Type 1 in September 18. It was a massive shock to us all and we are still struggling to get our heads around it.
Matthew has been amazing and had just got on with everything from day 1....he has amazed us with his attitude and acceptance of everything he has to do every day. We are so very proud of him.
As his mam I’m really struggling with it all. I try not to think about it too much, if I let it I feel it would take over my life. I could cry all the time but I try every day to get on with things and I tell myself that things could be worse.
People ask how things are and if everything is ok now.....they don’t understand that things will never be better, things won’t settle down and we won’t get used to it. This is our life now and it’s not just about “making little changes to our life” I hold my hands up and admit that before Matthews diagnosis I totally underestimated the impact of diabetes on peoples lives so I do understand that other people can’t begin to know what I’m feeling now. 
I know people on here will totally understand I guess that’s why I’m posting this today.
Thank you for reading x


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## SB2015 (Mar 16, 2019)

J7BLE said:


> Hi, my name is Julie and I’m a Mam to Matthew who is 11 and was diagnosed Type 1 in September 18. It was a massive shock to us all and we are still struggling to get our heads around it.
> Matthew has been amazing and had just got on with everything from day 1....he has amazed us with his attitude and acceptance of everything he has to do every day. We are so very proud of him.
> As his mam I’m really struggling with it all. I try not to think about it too much, if I let it I feel it would take over my life. I could cry all the time but I try every day to get on with things and I tell myself that things could be worse.
> People ask how things are and if everything is ok now.....they don’t understand that things will never be better, things won’t settle down and we won’t get used to it. This is our life now and it’s not just about “making little changes to our life” I hold my hands up and admit that before Matthews diagnosis I totally underestimated the impact of diabetes on peoples lives so I do understand that other people can’t begin to know what I’m feeling now.
> ...



We all have to live with a ‘new normal’ life.
So much to learn at the start, and then as you say it goes on.  
However it does gradually get easier to manage, and the technology is improving all the time.  
Keep in touch as we do understand.

Have you come across the book Type 1 Diabetes in Children Adolescents and Young Adults by Ragnar Hanas?  I still look back at it 11 years on.  It is regularly updated and includes clear explanations and is a good reference book.


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## stephknits (Mar 16, 2019)

Hi Julie and welcome to the forum.  I totally get your frustration, I too find it irritating when people say to me, oh you must have it all under control now - but like you say, I didn't have a clue before diagnosis.  This place is great cos people get it


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## Matt Cycle (Mar 16, 2019)

Hi Julie and welcome to the forum.   Sorry you are feeling like this.  I was a bit older than your son at diagnosis but as a parent myself now I know how my Mum must have felt at the time.  She still worries about me now.  It sounds like Matthew is coping well and I was probably like your son and just got on with it and my Mum did all the worrying.  There will be ups and downs along the way but please believe me though that things will get easier.  Other people will never understand what it's like to live with it but having T1 hasn't stopped me doing anything.  There are T1 pro footballers, rugby players, cyclists, actors, rock stars etc.  Absolutely anything is possible.


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## HOBIE (Mar 16, 2019)

Please tell him WE are proud of him too. A positive kid, well done whole family. Keep at it


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## Flower (Mar 16, 2019)

Hello and welcome Julie, glad you've found us 

It is a huge shock to be handed the running of your own insulin supply, a huge shock for everyone concerned with no time to gently adapt to the new situation.

There is excellent help and support at the various diabetes clinics, paediatric, young adult etc and great tech in the meters, pumps etc to help blood sugar management plus excellent support and advice on here. Your son sounds as if he is doing really well accepting it and doing what he needs to do and you are quite right to feel very proud of him. I can remember people saying 'all better now' after getting out of hospital when I was diagnosed as if it was a short bout of something that was quickly solved. If you don't have to deal with it there's no way you can know what it means to live with it but we certainly do 'get it' on here.

As the others have said things do start to fall into place and become the new routine but it is one very steep learning curve to start with. I wish you all well


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## J7BLE (Mar 16, 2019)

Thank you all so much for your replies and support.....it really means a lot that I know you all understand. I have low times, then I pick up a bit and just get on with things. 
I totally agree with you about the support available to us....everyone has been amazing. I work in healthcare so I know there is so much technology out there and I’m sure more is yet to come in Matthews lifetime. We have recently started using the Libre sensor which we now find invaluable. Matthew is now gathering information around pumps and deciding if this might be a transition he wants to make.
I really don’t think anyone can understand what type 1 is all about unless you live with it.
Matthew is an absolute star and has never once complained about things....puts me and my husband to shame if I’m honest, but being a parent you just want your kids to be fit and healthy. 
I will look into that book.
Thank you again for your support x


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## SB2015 (Mar 17, 2019)

Having just read the Diabetes Udate for health care professionals I read of a website called Digibete which is specifically designed for children, their families and their careers.  I spent some time looking at this and following some of their routes through.  I was impressed by the positive approach and info from pupils at different key stages.  There is also a specific section for parents.  I think that it is worth a look.

I hope that this might be of some help to you.


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## J7BLE (Mar 18, 2019)

Thank you very much for that I will have a look at it. I was recommended that site by Matthews nurse but never actually looked at it. 
I’ve also ordered the Ragnar Hanas book which should be coming today.
I totally underestimated how this diagnosis would affect me and thought I wouldn’t need all theses websites and books. 6 month on and I’m still struggling so much I’m looking at any advice/help and support I can get. I think only people going through this can totally understand the impact it has on your life which I have joined this group.
Thank you all so much it really means a lot to me xx


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## SB2015 (Mar 18, 2019)

J7BLE said:


> Thank you very much for that I will have a look at it. I was recommended that site by Matthews nurse but never actually looked at it.
> I’ve also ordered the Ragnar Hanas book which should be coming today.
> I totally underestimated how this diagnosis would affect me and thought I wouldn’t need all theses websites and books. 6 month on and I’m still struggling so much I’m looking at any advice/help and support I can get. I think only people going through this can totally understand the impact it has on your life which I have joined this group.
> Thank you all so much it really means a lot to me xx


We are here to help.
Keep in touch and keep asking any questions you have.


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## kaye watson (Mar 18, 2019)

Hi. My son was diagnosed when he was 14 he’s now 25. I guess with diabetes you are always learning. It’s not an easy journey. I also have that book it’s really good and easy to read. When I look back I wish I had asked for more help and advice instead of soldiering on, so don’t be worried about asking for advice there is always someone who will help xx


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## J7BLE (Mar 19, 2019)

kaye watson said:


> Hi. My son was diagnosed when he was 14 he’s now 25. I guess with diabetes you are always learning. It’s not an easy journey. I also have that book it’s really good and easy to read. When I look back I wish I had asked for more help and advice instead of soldiering on, so don’t be worried about asking for advice there is always someone who will help xx


Thank you for your kind words. I’m a bit of a control freak and I’m finding it difficult that I can’t control this.....every day is different. I kind of thought “get this ratio right and that peak sorted then its good” then something else haopens. Six month in and I’ve joined this group as I thought I was doing something wrong or feeling down when I shouldn’t be, but already I’ve learned that you are all going through the same thing and what I’m feeling is “normal”.
I started reading the book last night....all info greatly received.
Thanks again x


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## trophywench (Mar 19, 2019)

Mate - I've had diabetes for over 46 years  - not as long as some members here - and I still learn something or another I didn't know before virtually every day!  I'm by no means stupid either, and I make a point of reading whatever it is just in case I need to know.

I'm certainly no expert !!  But I do know quite a bit about MY diabetes and also know which bits either do apply to other people or some of what might work for them because I've read of it helping a fair few others.  That's all.  Sometimes a hug is needed as much as anything technical or medical - just have to use your own judgment - and above all whether you're the one that needs help or the one trying to provide it - LISTENING is a prerequisite!


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## Pumper_Sue (Mar 19, 2019)

Hello and welcome,
As a mum you will always worry about your kids  My mum still worries about me and I've been type1 for 54 years with no complications from it and have always led a full and active life. The active life included running xcountry  for my county owning/riding and breeding horses plus working full time. So in short diabetes wont stop your son achieving what he wants to achieve in life.

My main advice to you is just treat his numbers as that just a number no post-mortem needed (resentment sets in if you do) and always involve your son in everything to do with his diabetes.

Have a (((((((((((((hug))))))))))


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## J7BLE (Mar 19, 2019)

Pumper_Sue said:


> Hello and welcome,
> As a mum you will always worry about your kids  My mum still worries about me and I've been type1 for 54 years with no complications from it and have always led a full and active life. The active life included running xcountry  for my county owning/riding and breeding horses plus working full time. So in short diabetes wont stop your son achieving what he wants to achieve in life.
> 
> My main advice to you is just treat his numbers as that just a number no post-mortem needed (resentment sets in if you do) and always involve your son in everything to do with his diabetes.
> ...


That’s really great to hear, thank you! No complications after 54 years is amazing.....One of Matthews biggest worries is the complications he’s been told about, I will certainly be telling him about you. 
Sound advice too as I do tend to overthink the numbers x


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## Pumper_Sue (Mar 19, 2019)

J7BLE said:


> That’s really great to hear, thank you! No complications after 54 years is amazing.....One of Matthews biggest worries is the complications he’s been told about, I will certainly be telling him about you.
> Sound advice too as I do tend to overthink the numbers x


My Uncle is 85 and has had type1 the same length of time as me and he hasn't got any complications either 
In this day and age with all the technology available complications if any should be minimal anyway.

Tell Mathew diabetes lives with him and not him with diabetes. If Mathew likes Rugby tell him Henry Slade who plays for England has type1 diabetes as well.


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## Bronco Billy (Mar 19, 2019)

Hi J7BLE, welcome to the forum. Sorry, I’m a bit late to the party.

I have two children with type 1, they were diagnosed a few months apart. There was a time when we thought we would never get used to it; the testing, the insulin calculations, the corrections etc etc. We did, though, and you will too, Scouts honour. You will settle into what will be a normal life. It will be far from ‘normal’ as most people know it, but it will be normal to you and your son. What seems like a struggle now will soon become routine and second nature.

You might need to let go of the ‘control freak’ part of your personality, type 1 will have other ideas. A couple of weekends ago, we really struggled to get our son out of the teens for two or three days. On Monday AND Tuesday, he forgot to take his insulin at school at lunchtime, yet somehow had great numbers when he tested when he got home and realised he had forgotten. ‘Er indoors and I are still at a loss to work that one out, and he’s had it for nine years.

Easier said than done I know but try not to worry about complications. Focus on doing the best you can day to day and the future will take care of itself. What’s important right now is your son doesn’t let it hold him back or stop him from doing anything he wants. It sounds like he has no intention of letting this happen and is on top of things. What a superstar!

Good luck and remember, no question is too silly, so ask anything you want. We’ll have the answer.


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## trophywench (Mar 20, 2019)

Billy - I forgot I was diabetic until a few hours after I'd eaten a large and excellent Sunday lunch - with a dozen friends some of which we hadn't seen for 2 years, hence I was sidetracked and that's my excuse.  The aide memoire device I married was also more interested in his dinner and the conversation with the recently bereaved husband sitting at his side.

This stuff happens on odd occasions Billy for the simple reason we are humans - not supermen/women!

There's always an explanation for most things and the person who has diabetes and also knows exactly what they did. didn't do - can work out why 99% of the time.  The pesky 1% though ….. but my view of that for me, is that as long as it is 'very rare' I'm not going to sit puzzling over it for all that much longer than I have to the other 99%.


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## J7BLE (Mar 20, 2019)

Pumper_Sue said:


> My Uncle is 85 and has had type1 the same length of time as me and he hasn't got any complications either
> In this day and age with all the technology available complications if any should be minimal anyway.
> 
> Tell Mathew diabetes lives with him and not him with diabetes. If Mathew likes Rugby tell him Henry Slade who plays for England has type1 diabetes as well.


That’s really great to hear x


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## J7BLE (Mar 20, 2019)

Bronco Billy said:


> Hi J7BLE, welcome to the forum. Sorry, I’m a bit late to the party.
> 
> I have two children with type 1, they were diagnosed a few months apart. There was a time when we thought we would never get used to it; the testing, the insulin calculations, the corrections etc etc. We did, though, and you will too, Scouts honour. You will settle into what will be a normal life. It will be far from ‘normal’ as most people know it, but it will be normal to you and your son. What seems like a struggle now will soon become routine and second nature.
> 
> ...


Good Morning! Thank you for your comments. Wow two children.....that’s mind blowing! I joined a Facebook forum page too and there are also parents on there who have two type 1 children. Matthew is a twin so that has been a concern to me since he was diagnosed. We are obviously watching Oliver like a hawk and smelling his breath regularly for “fruity keyones” bless him.

Matthew is so good at dealing with all aspects of his diabetes although we do have to remind him to scan his Libre from time to time. We are so proud of him. He actually missed his first 2 weeks staring comp as he was diagnosed the day before he was supposed to start. He is doing so well academically and socially, nothing is a bother to him. Obviously this might change when teenage hormones kick in!

Yes the control freak in me is quickly learning it’s not going to happen .
We are still struggling with running high at night and are trying different things to see if we can get things a bit smoother. He’s always peaked about 1am but he seems to run high all night some nights then perfect other nights. He’s always back down to 5/6 by morning so I’m reluctant to increase his levemir.
The hospital are talking to him about pumps but he’s quite set on staying on injections. He will be 12 in July so they’ve said that after that it may be more difficult to secure funding.

Are you children on pumps or MDI ?

I’m currently reading the Ragnar Hanas book that was recommended to me and I’m finding that very informative. My husband and myself are pharmacists so we already know a lot about the medication and physiology of diabetes but the actual day to day living and the emotional aspect of it all have totally floored us.

I’m so grateful to you all for your help and comments. I was feeling very down the day I posted on here and reading everyone’s replies really did help me.

Thank you to you all x


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## Pumper_Sue (Mar 20, 2019)

J7BLE said:


> The hospital are talking to him about pumps but he’s quite set on staying on injections. He will be 12 in July so they’ve said that after that it may be more difficult to secure funding.


Can you ask Mathew what his worries are regarding a pump? Hopefully we can answer his questions and also reassure him.

Perhaps his hospital team will be good enough to let him trial a pump for a week so he can see what it's like.


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## J7BLE (Mar 20, 2019)

Pumper_Sue said:


> Can you ask Mathew what his worries are regarding a pump? Hopefully we can answer his questions and also reassure him.
> 
> Perhaps his hospital team will be good enough to let him trial a pump for a week so he can see what it's like.


He just doesn’t like the idea of something being attached to him all the time. We know a couple of people who do have a pump so we are planning to meet up with them so he can see what they are like and talk to them.
To be honest, like I’ve said to him, a pump isn’t always better than MDI. It would obviously give him more freedom to tweak things a bit and hopefully better control over highs.
Originally he was dead against a Libre but he came round to the idea and now wouldn’t be without it


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## Pumper_Sue (Mar 20, 2019)

J7BLE said:


> He just doesn’t like the idea of something being attached to him all the time



I can assure Mathew in that dept that after a few hours he will look to see if the pump is still there  I did this for quite awhile after starting to pump and that was after 42 years on injections.
There is the omnipod which is tubeless https://www.myomnipod.com/en-gb/home so just like the sensor he is wearing.


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## J7BLE (Mar 20, 2019)

Pumper_Sue said:


> I can assure Mathew in that dept that after a few hours he will look to see if the pump is still there  I did this for quite awhile after starting to pump and that was after 42 years on injections.
> There is the omnipod which is tubeless https://www.myomnipod.com/en-gb/home so just like the sensor he is wearing.


Thank you for that. His nurse did come out a while ago with 3 different pumps and that was the one he said he wouldn’t mind trying. Pump therapy is another minefield that I need to look into. Everyone she showed us had different good features but there wasn’t one that combined them all. He is managing well at the minute on MDI but he is 12 soon and we are aware of the funding issues after time.
Once again thanks for your advice


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## Bronco Billy (Mar 20, 2019)

J7BLE said:


> Good Morning! Thank you for your comments. Wow two children.....that’s mind blowing! I joined a Facebook forum page too and there are also parents on there who have two type 1 children. Matthew is a twin so that has been a concern to me since he was diagnosed. We are obviously watching Oliver like a hawk and smelling his breath regularly for “fruity keyones” bless him.
> 
> Matthew is so good at dealing with all aspects of his diabetes although we do have to remind him to scan his Libre from time to time. We are so proud of him. He actually missed his first 2 weeks staring comp as he was diagnosed the day before he was supposed to start. He is doing so well academically and socially, nothing is a bother to him. Obviously this might change when teenage hormones kick in!
> 
> ...





Mind blowing is a pretty good way of describing it. We are very used to it now, but it was just as big a shock the second time as it had been the first time. On the plus side, we saw it coming a long way off, so our son wasn’t as ill as our daughter was when she was diagnosed. She was in severe DKA and we nearly lost her! We have another, younger daughter who we keep a close eye on. So far so good, but she has had a few finger prick tests over the years.

Both of mine are on a pump. Our son was put on it first because his honeymoon period meant his numbers, especially at night, were very unpredictable. One of the advantages of the pump was that he was on a zero dose overnight as his pancreas would ‘wake up’ and do its job. I wouldn’t be surprised if your son is still in his honeymoon period, given what you say about his night-time levels. Our daughter was put on a pump as she became very needle phobic and it became very difficult to give her injections. They both have the Medtronic 640G

I understand your son’s concerns about having a pump, but there is no harm in trialling it, he won’t be forced to keep it. In a beautiful sense of timing, my daughter just entered the room, so I asked her if she feels the pump is there. Her firm answer was (after a face pull) “no, I don’t notice it.” It has become a part of her now and I’ve no doubt my son would say the same. The big advantage of a pump is the flexibility it offers. If your son fancies a snack, he only has to press a few buttons to deliver his insulin rather than go through the process of an injection. Background insulin can be adjusted to suit needs at different time of the day. My children have about eight different background rates. A pump doesn’t suit everyone, but when people try one, they realise that it’s not as bad as they feared.


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## Pumper_Sue (Mar 21, 2019)

J7BLE said:


> Thank you for that. His nurse did come out a while ago with 3 different pumps and that was the one he said he wouldn’t mind trying. Pump therapy is another minefield that I need to look into. Everyone she showed us had different good features but there wasn’t one that combined them all. He is managing well at the minute on MDI but he is 12 soon and we are aware of the funding issues after time.
> Once again thanks for your advice



It sounds to me as if Mathew has the same condition as most of us pre-pump  It's called fear of the unknown. Very understandable imho he has also had an awful lot take in within a very short period of time.

As to pumps and their different features, basically they all do the same thing regarding delivery and if you don't have another pump yo compare to ie it's a first pump, you haven't missed out on anything you might think you want. Omnipod has a handset and no tubes which your son will probably like better that's about it really.


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## J7BLE (Mar 21, 2019)

Bronco Billy said:


> Mind blowing is a pretty good way of describing it. We are very used to it now, but it was just as big a shock the second time as it had been the first time. On the plus side, we saw it coming a long way off, so our son wasn’t as ill as our daughter was when she was diagnosed. She was in severe DKA and we nearly lost her! We have another, younger daughter who we keep a close eye on. So far so good, but she has had a few finger prick tests over the years.
> 
> Both of mine are on a pump. Our son was put on it first because his honeymoon period meant his numbers, especially at night, were very unpredictable. One of the advantages of the pump was that he was on a zero dose overnight as his pancreas would ‘wake up’ and do its job. I wouldn’t be surprised if your son is still in his honeymoon period, given what you say about his night-time levels. Our daughter was put on a pump as she became very needle phobic and it became very difficult to give her injections. They both have the Medtronic 640G
> 
> I understand your son’s concerns about having a pump, but there is no harm in trialling it, he won’t be forced to keep it. In a beautiful sense of timing, my daughter just entered the room, so I asked her if she feels the pump is there. Her firm answer was (after a face pull) “no, I don’t notice it.” It has become a part of her now and I’ve no doubt my son would say the same. The big advantage of a pump is the flexibility it offers. If your son fancies a snack, he only has to press a few buttons to deliver his insulin rather than go through the process of an injection. Background insulin can be adjusted to suit needs at different time of the day. My children have about eight different background rates. A pump doesn’t suit everyone, but when people try one, they realise that it’s not as bad as they feared.


It changes your life totally in a way that others can not understand.
I think Matthew might actually be coming to the end of his honeymoon. He used to be quite stable over night but recently he’s been flying high. I had a total melt down last night when I uploaded his readings to Diasend and saw the sea of red later in the day!! I’ve changed his lunch ratio as his tea readings are starting to creep up and it doesn’t really drop much between lunch and tea. He actually had a perfect night last night so I’m assuming his basal levels are ok. See if that helps. We are at hospital next week so I’ll see what they say about trialing a pump


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## J7BLE (Mar 21, 2019)

Pumper_Sue said:


> It sounds to me as if Mathew has the same condition as most of us pre-pump  It's called fear of the unknown. Very understandable imho he has also had an awful lot take in within a very short period of time.
> 
> As to pumps and their different features, basically they all do the same thing regarding delivery and if you don't have another pump yo compare to ie it's a first pump, you haven't missed out on anything you might think you want. Omnipod has a handset and no tubes which your son will probably like better that's about it really.


Yes that’s exactly right.....he’s just got his head around injecting and now they are asking if he wants a pump! We are at hospital next week for HbA1c so see what they say.


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## trophywench (Mar 21, 2019)

Have a look at the profiles of various long acting insulins - unless your son's bodily needs for it match the insulin's action - so you can time the dose(s) correctly to match the bodily needs - you'll never get it right no matter how many times you adjust it.  Even with a pump it isn't easy.

Roche have an algorithm which enables clinics to start people off at rates Roche think should be near enough correct for them.  Not for me and my body !  LOL


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## Bronco Billy (Mar 21, 2019)

It sounds like you are really on top of it and being very pro-active. When you see all the highs, it can be demoralising and feel as if you aren’t doing anything right, but it’s important to remember that success can’t always be measured in the BG numbers. It’s sometimes about how you are managing them and how you react to what is happening. If you keep doing your bit, you will get your reward. This won’t always happen immediately, but it will happen. The ending of the honeymoon period will make management easier as you have more certainty about what you are dealing with.


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