# A not new newbie



## Sarah JW (Jun 17, 2018)

Hi
I have posted a little while ago, I am not new to diabetes having been diagnosed in 1980, however I am relatively new to this site. I am really struggling at the moment with a variety of things in my life and a bit worried about disclosing all of which to one of these sites. My diabetes is all over the place, HBA1C the highest it has been for a while and I feel out of control with it. I feel scared of going back to see practice nurse or even the diabetes nurses as I feel that I should know what I am doing. I have such a busy life both at work and at home and just feel so helpless at the moment to make changes, then feeling guilty about not making changes. I just do not know what to do, I feel so empty


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## Ljc (Jun 17, 2018)

Hello @Sarah JW . I am sorry to hear you are so low.
It sounds like you have an awful lot going on in your life right now that may be pulling you down and it’s well known that stress affects diabetes in a negative way.

Please don’t be wary or afraid of contacting your  diabetic team esp your DSN,  to be honest I think you should do this  ASAP!   You see they won’t have a right go at you , they are there to help you not to make you feel worse in any way.  You certainly won’t be the first person they have seen who is wobbling, nor will you be the last. They do understand that life can be darned tough at times and that we are mere humans  not saints.

XXX


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## SB2015 (Jun 17, 2018)

Hi Sarah
I am sorry to hear that you are having such a hard time at present, and it sounds like you are having to juggle a lot things, on top of keeping on top of your Diabetes.  In addition stress and worries will also impact on your BG.

I would echo what Ljc says about contacting your DSN.  They are there to help you, and will understand how hard it can be to keep everything on track.  I had a big wobble last year, and didn’t ask for help straight away as I thought I ought to be able to cope.  They were wonderful when I finally explained how I was feeling.  If you think it would help I can direct you to a thread on here where I shared the support that Inreceived and the strategies that I used to get back on track.

 Is there a specific aspect of your diabetes management that you feel you want to tackle?  It can seem a big thing to manage, but if you can focus on one small part of it that may help.


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## Bloden (Jun 17, 2018)

Hiya Sarah. Sorry to hear you’re struggling at the mo - I think we can all appreciate how you’re feeling. You don’t have to give us all your personal info, just let us support you thru a tough time. Welcome!


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## stephknits (Jun 17, 2018)

Hi Sarah, sorry to hear you are struggling.  Lots of good advice already.  I agree it might be good to start with one small thing, like testing before and after breakfast, writing it down and then seeing what the numbers are like after a few days.  
Have you ever gone on a DAFNE course?  I found this invaluable and there were people on the course who had had diabetes for 40 years and still learned loads.  I knikit is a lot of time to take out of a busy life, but sometimes we need to focus on us for a bit.


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## Flower (Jun 17, 2018)

Hello Sarah and welcome 

I'm sorry you are having such a tough time at present but glad you found us , Diabetes doesn't care what else is happening and it is really tough to keep juggling everything you need to- however many years you've been dealing with it

I'll echo what the others have said, please ask your team for help , it isn't your fault, diabetes is;relentlessly challenging and we can't do it all on our own. They will want to help you get to a happier place with it The diabetes UK helpline is very helpful if you want to talk to someone about issues you are having. I have spoken to them a few times and they are very good. https://www.diabetes.org.uk/how_we_help/helpline

I hope things start to settle down for you soon. Please let us know if there is anything we can help with, there's years and tears of collective experience with the lovely people on here.

I wish you well.


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## Ralph-YK (Jun 17, 2018)

Welcome to the forum Sarah.
You don't have to share anything other than what you are comfortable with.


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## CathyB (Jun 17, 2018)

Welcome Sarah, you have a lot going on but please feel safe here, no one will expect you to share anything you don’t want to.  Let us know what aspect of your diabetes you are struggling with and an idea of how you manage it and we will all do our best to support you


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## HOBIE (Jun 17, 2018)

Sarah JW said:


> Hi
> I have posted a little while ago, I am not new to diabetes having been diagnosed in 1980, however I am relatively new to this site. I am really struggling at the moment with a variety of things in my life and a bit worried about disclosing all of which to one of these sites. My diabetes is all over the place, HBA1C the highest it has been for a while and I feel out of control with it. I feel scared of going back to see practice nurse or even the diabetes nurses as I feel that I should know what I am doing. I have such a busy life both at work and at home and just feel so helpless at the moment to make changes, then feeling guilty about not making changes. I just do not know what to do, I feel so empty


First thing !  Well done for being at Work ! Pat on the back big style. It is hard at times. Some days are just wrong & being active has always been a positive thing to me.


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## Matt Cycle (Jun 17, 2018)

Hi Sarah

Sorry to hear you're feeling this way.  Are you seen at the hospital clinic or through the GP?  Either way there's no need to feel guilty about anything and the DSN or practice nurse will be more than willing to help.  T1 can be very difficult to manage no matter how long you have been diagnosed and lonely as even those closest to us don't really know what it's like to live with it.  The nurses will be able to help and there's loads of support on here from people who 'get it'. Keep in contact and let us know how you're getting on.


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## Sarah JW (Jun 18, 2018)

I am seen at the gp surgery by the practice nurse, but havnt been in a while, I have completed a course which was similar to the daphne course which makes me feel worse as I should know what I am doing and ow to look after myself, but I just feel unable to at the moment. My bloods are so high most of the time, im then going hypo, had bad hypo at work on friday, which brought attention to me which I hated. Thank you for you replies I need some motivation to change what I am doing and at the moment I cant seem to find any


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## Sarah JW (Jun 20, 2018)

SB2015 said:


> Hi Sarah
> I am sorry to hear that you are having such a hard time at present, and it sounds like you are having to juggle a lot things, on top of keeping on top of your Diabetes.  In addition stress and worries will also impact on your BG.
> 
> I would echo what Ljc says about contacting your DSN.  They are there to help you, and will understand how hard it can be to keep everything on track.  I had a big wobble last year, and didn’t ask for help straight away as I thought I ought to be able to cope.  They were wonderful when I finally explained how I was feeling.  If you think it would help I can direct you to a thread on here where I shared the support that Inreceived and the strategies that I used to get back on track.
> ...


Its all of it really, Idont know where to start


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## SB2015 (Jun 21, 2018)

Hi Sarah

There is no should or shouldn’t know this or that.  You are where you are and you need some help to get things back on track.  My own experience would suggest that it is difficult to get appropriate support at a GP practice, so the first I would suggest is to ask for a referral to the specialist team at the hospital.  They are focused on dealing with people with T 1 and may be able to give you more specialist advice than at the GPs.

Can you pick a specific part of your management like making sure that you test before your meals, and do your background insuiln leach day.  If you were able to keep records of that and then get some speciaist advice they would have some information to work on with you.

Keep in touch and keep asking and we will try to help in any way we can.


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## HOBIE (Jun 21, 2018)

Sarah JW said:


> I am seen at the gp surgery by the practice nurse, but havnt been in a while, I have completed a course which was similar to the daphne course which makes me feel worse as I should know what I am doing and ow to look after myself, but I just feel unable to at the moment. My bloods are so high most of the time, im then going hypo, had bad hypo at work on friday, which brought attention to me which I hated. Thank you for you replies I need some motivation to change what I am doing and at the moment I cant seem to find any


Those courses are very good for anyone. There is no You passed etc. I did mine about 5 yrs ago & picked up info after 40 odd yrs of T1.


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## Sarah JW (Jun 21, 2018)

SB2015 said:


> Hi Sarah
> 
> There is no should or shouldn’t know this or that.  You are where you are and you need some help to get things back on track.  My own experience would suggest that it is difficult to get appropriate support at a GP practice, so the first I would suggest is to ask for a referral to the specialist team at the hospital.  They are focused on dealing with people with T 1 and may be able to give you more specialist advice than at the GPs.
> 
> ...


Thank you, 
I have had another hypo at work again today,  got really scared, felt so vulnerable and ended up crying I then over treated and now my bloods are sky high. I m scared of correcting now in case I go hypo in the night. My background insulin I do twice a day and isprobably the only thing I am doing without fail everyday


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## Carolg (Jun 22, 2018)

Hi Sarah SW
One appointment I went to, I just blubbered all the way through. That’s why they should have tissues on desk. Share as much as you want here, but it’s yours so as private as you wish. Take care and be kind to yourself


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## New-journey (Jun 22, 2018)

Sarah JW said:


> Thank you,
> I have had another hypo at work again today,  got really scared, felt so vulnerable and ended up crying I then over treated and now my bloods are sky high. I m scared of correcting now in case I go hypo in the night. My background insulin I do twice a day and isprobably the only thing I am doing without fail everyday


Welcome and so glad you posted here. I echo all that has been said and want to congrat you on taking your background insulin every day. That is a big achievement and from there you can take baby steps with your rapid insulin. You are doing well, juggling so much and doesn't sound like you have the support you deserve. Hypos are scary and easy to over treat. Sending loads of support.


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## Sarah JW (Jun 24, 2018)

Everyone is being so kind, thank you so much. I do not feel like I deserve any of it. I saw the practice nurse a while ago who said she would refer me back to specialist nurse, however I havnt heard anything. Everytime I request a repeat prescription the receptionist is reminding me to re book in with the practice nurse. I feel under pressure to do it, I know what she is going to say with out going to see her. The surgery have changed the way they offer diabetic reviews and I dont like that either, it wastes so much of my time, I am so fed up of being diabetic, I just want it to go away


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## Northerner (Jun 24, 2018)

Sarah JW said:


> Everyone is being so kind, thank you so much. I do not feel like I deserve any of it. I saw the practice nurse a while ago who said she would refer me back to specialist nurse, however I havnt heard anything. Everytime I request a repeat prescription the receptionist is reminding me to re book in with the practice nurse. I feel under pressure to do it, I know what she is going to say with out going to see her. The surgery have changed the way they offer diabetic reviews and I dont like that either, it wastes so much of my time, I am so fed up of being diabetic, I just want it to go away


Sarah, you must keep badgering the surgery to be referred to a specialist. Even though you are struggling at the moment you know far more about your diabetes than the practice nurse, and only someone specially-trained can help with difficult situations like yours. Sometimes these 'referrals' can get lost in the system, so you need to be proactive  You'd already made a big start in trying to improve your situation by joining here, so now take it further and keep pushing until you get that specialist appointment! I'm not a particularly assertive person, but I learned early on that you have to look after Number 1 sometimes and make sure you are getting the help you need and are entitled to.

My first suspicion is that you may need to do a basal test in order to check that your basal doses are set correctly - once your basal is right the meal doses will make more sense (the link is for a pump basal test, but the same principles apply on injections. If you are not confident about doing it on your own then wait until you see the specialist).

I also suspect you would be a very good candidate for an insulin pump - again, this is something you would need to discuss with a specialist, but it should give you much better control in the longer term  If you don't know much about pumps, have a browse of the INPUT website.

Good luck, you can do this and we are all here to support you to get where you need to be


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## Sarah JW (Jun 24, 2018)

Thank you, I will contact the surgery in the morning and also start the basal testing process, the problem I have is that  the advice it gives about things to do when basal testing, for example not being stressed I am going to struggle with because I am so stressed at the moment, so I am unsure whether it will be accurate or not?


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## Radders (Jun 24, 2018)

Sarah JW said:


> Thank you, I will contact the surgery in the morning and also start the basal testing process, the problem I have is that  the advice it gives about things to do when basal testing, for example not being stressed I am going to struggle with because I am so stressed at the moment, so I am unsure whether it will be accurate or not?


Hi Sarah.

It will be accurate for times when you’re stressed, which is a start. The thing is to start somewhere and take things one at a time. My priority would be to work out if you can what caused the hypos at work and try to prevent those as they obviously distress you. Do you have any idea what might have caused them? Or any thoughts about something straightforward you could change?


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## Sarah JW (Jun 24, 2018)

Radders said:


> Hi Sarah.
> 
> It will be accurate for times when you’re stressed, which is a start. The thing is to start somewhere and take things one at a time. My priority would be to work out if you can what caused the hypos at work and try to prevent those as they obviously distress you. Do you have any idea what might have caused them? Or any thoughts about something straightforward you could change?


I think that some of the problem at work is because I am so busy I dont get chance to eat all my lunch and then went hypo because I had already jabbed for it, Iv tried jabbing afterwards, but that is worse because I forget and then am hi. I am ging to try and do a basal test starting tonight. I hate`the attention that hypos bring


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## Northerner (Jun 25, 2018)

Sarah JW said:


> I think that some of the problem at work is because I am so busy I dont get chance to eat all my lunch and then went hypo because I had already jabbed for it, Iv tried jabbing afterwards, but that is worse because I forget and then am hi. I am ging to try and do a basal test starting tonight. I hate`the attention that hypos bring


Sarah, start putting your foot down. I've worked in very busy environments too, but when you have diabetes you must take time to think of yourself, inject and eat properly - the job can wait, your well-being is far too important!  Everyone is fully entitled to a proper lunch break, so make sure people know you intend to have yours and whatever it is can wait


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## SB2015 (Jun 25, 2018)

Sarah JW said:


> I think that some of the problem at work is because I am so busy I dont get chance to eat all my lunch and then went hypo because I had already jabbed for it, Iv tried jabbing afterwards, but that is worse because I forget and then am hi. I am ging to try and do a basal test starting tonight. I hate`the attention that hypos bring


Hi Sarah

I understand ‘not wanting to make a fuss’ but we can’t ignore things like eating to go along injections. Do you have a good line manager?  Can you talk to them about this.  Although that may seem very difficult it may make less of a fuss as if you can get time to eat lunch and inject. (I was amazed at the very unexpected level of support I got having missed a meeting due to having a hypo 1 week into a new job).  The spike that you may get if you inject as you start eating may for now be less of a problem than a hypo if you split the injection and food.  However busy your job is they need to allow you to take care of yourself.  I wasn’t sure what help to ask for at the start as I was only a couple of months into it and had no idea how to manage what I was doing.  We gradually worked out a way of working round potential problems.

As others have said, it is very unlikely that a practice nurse will know anywhere as much as you do about T1.  Keep pressing for the referral to the specialist team.  They are there to help us and very familiar with the difficulties that we all have at times with managing all that we have to do.  They will no doubt be impressed with your wanting to get this sorted and will be able to help you.


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## HOBIE (Jun 25, 2018)

Power to you Sarah JW. It is hard work at times being T1. Stress all ways makes me go low because your head is doing overtime. You are surviving . Good luck


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## Sarah JW (Jun 25, 2018)

I will try to speak with my line manager about it, they are aware and there is a big focus at the moment about staff well being and everyone making sure they have lunch, I think the problem is me, and the expectations I put on myself to make sure everything is completed and everyone is happy. It also has an impact on my evening meal as I stay late most days which then has an impact on my tea, I get hungry then snack and then dont jab for it and end up sky high. I dont want diabetes to stop me being good at my job, I hate everything about diabetes and the fact that it has so much control and power over my life. I hate going for check ups, I hate and have such bad memories of going to out pt clinics in the hospital as a child.
I tried the basal rate testing last night, but had to stop as was hypo at 2am, again over treated and sky high this morning. I used to be pretty good at not over treating a third of a bottle of lucozade was great, but the reduced sugar has now thrown me and Im not sure how much to have


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## Radders (Jun 25, 2018)

The usual recommended hypo treatment is 15g carbs. It’s quite straightforward (when you’re not hypo!) to work out how much that is from the info on the label. Give a shout if you need help to do that. Alternatively I normally use Dextrosol tablets which are 3G carbs each, others swear by jelly babies. There’s a simple thing you can do straight away to help you take control: work out in advance exactly what you are going to do next time hypos strike. That way you don’t need to worry about it when you’re actually hypo.


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## Sarah JW (Jun 25, 2018)

Radders said:


> The usual recommended hypo treatment is 15g carbs. It’s quite straightforward (when you’re not hypo!) to work out how much that is from the info on the label. Give a shout if you need help to do that. Alternatively I normally use Dextrosol tablets which are 3G carbs each, others swear by jelly babies. There’s a simple thing you can do straight away to help you take control: work out in advance exactly what you are going to do next time hypos strike. That way you don’t need to worry about it when you’re actually hypo.


Thank you, I have always used lucozade and had it sorted as when I was younger would over treat so was quite proud of myself as an adult to train myself to a third of a bottle. I will have a look at what I can use, I cant stand dextrose tablets so will work out the jelly babies, or another sugary drink


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## SB2015 (Jun 25, 2018)

Sarah JW said:


> Thank you, I have always used lucozade and had it sorted as when I was younger would over treat so was quite proud of myself as an adult to train myself to a third of a bottle. I will have a look at what I can use, I cant stand dextrose tablets so will work out the jelly babies, or another sugary drink


It must be hard having had a regime that worked and now having to adapt it again. I think others have found the changes in the sugar content in drinks has been a hassle. 

If your basal rate test left you hypo in the night that could mean that your background insulin is too high over night.  Are you on a split background?  Some have found switching to Levemir and then splitting that gives them more flexibility to make changes

One thing that helped me to avoid overtreating a hypo is that I have set a 15 min reminder to retest on my handset.  I used to have it set at 10 min and too often I was not back in range, but that extra 5 min has helped and I do get back up in general.


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## Radders (Jun 26, 2018)

SB2015 said:


> It must be hard having had a regime that worked and now having to adapt it again. I think others have found the changes in the sugar content in drinks has been a hassle.
> 
> If your basal rate test left you hypo in the night that could mean that your background insulin is too high over night.  Are you on a split background?  Some have found switching to Levemir and then splitting that gives them more flexibility to make changes
> 
> One thing that helped me to avoid overtreating a hypo is that I have set a 15 min reminder to retest on my handset.  I used to have it set at 10 min and too often I was not back in range, but that extra 5 min has helped and I do get back up in general.


I have to wait 20 minutes.


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## Sarah JW (Jun 26, 2018)

SB2015 said:


> It must be hard having had a regime that worked and now having to adapt it again. I think others have found the changes in the sugar content in drinks has been a hassle.
> 
> If your basal rate test left you hypo in the night that could mean that your background insulin is too high over night.  Are you on a split background?  Some have found switching to Levemir and then splitting that gives them more flexibility to make changes
> 
> One thing that helped me to avoid overtreating a hypo is that I have set a 15 min reminder to retest on my handset.  I used to have it set at 10 min and too often I was not back in range, but that extra 5 min has helped and I do get back up in general.


Yes I am on split Levemir,  I have done 2 basal rate tests over night now and am absolutely shattered, I have gone hypo in the night both times, so will look at reducing evening levemir. 
It is the immediate panic when hypo,  that is causing me to have far more than I need, so found that the lucozade wasnt making me feel better and so am eating half a packet of biscuits


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## SB2015 (Jun 27, 2018)

Sarah JW said:


> Yes I am on split Levemir,  I have done 2 basal rate tests over night now and am absolutely shattered, I have gone hypo in the night both times, so will look at reducing evening levemir.
> It is the immediate panic when hypo,  that is causing me to have far more than I need, so found that the lucozade wasnt making me feel better and so am eating half a packet of biscuits



Well done for managing the overnight basal tests, especially as it is so exhausting having to wake to test regularly through the night.  I hope that the night time reduction in Levemir sorts the night hypos out.  I remember being told to get the nights sorted first as you can then start the day well and work on other things.

It is very hard not to panic when having a hypo, especially if you have had a bad experience with one.  Certainly quick acting glucose should bring you back up more quickly than biscuits, but if that is not working you could ask for a prescription of hypostop which is simply liquid glucose.  Sickly but effective.  I was told that on a pump I no longer needed my biscuit after treating a hypo.  I kind of missed that so sometimes just have one (with a bit of insuiln) anyway.

You are dinog the right things and just need to keep giong one step at a time.


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## Sarah JW (Jun 27, 2018)

SB2015 said:


> Well done for managing the overnight basal tests, especially as it is so exhausting having to wake to test regularly through the night.  I hope that the night time reduction in Levemir sorts the night hypos out.  I remember being told to get the nights sorted first as you can then start the day well and work on other things.
> 
> It is very hard not to panic when having a hypo, especially if you have had a bad experience with one.  Certainly quick acting glucose should bring you back up more quickly than biscuits, but if that is not working you could ask for a prescription of hypostop which is simply liquid glucose.  Sickly but effective.  I was told that on a pump I no longer needed my biscuit after treating a hypo.  I kind of missed that so sometimes just have one (with a bit of insuiln) anyway.
> 
> You are dinog the right things and just need to keep giong one step at a time.


Thank you so much everyone for the support, I really appreciate it. Last night was hypo free (I think) but woke up with BM of 27.3,so maybe was hypo, also had hypo this evening, Im not sure whether the weather maybe affecting me. Does this happen to anyone else?
I have not done my insulin for my tea this evening and am going to correct at bedtime because I was so scared of going hypo again


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## SB2015 (Jun 28, 2018)

Good morning Sarah.

Can you think of other reasons why you were high yesterday morning? 
As you say it could be that you had a hypo and still need to drop your night time Levemir
Did you do your bolus injection the night before?  
Was the meal you ate particularly large, did it have a lot of fat in it, was it a curry or pizza (notoriously difficult to manage)

With the evening meal and corrections, I have found it helpful to eat no later than 6:30 (where possible) to give my body time to process the food before I go to bed, and then I know that I can also correct if needed as I may we’ll have got my carbs out a bit.  It is a bit restrictive but I have found it worth it.

With all that you are dealing with, it certainly sounds like you would benefit from getting a referral to the specialist Diabetes team at your hospital.  The only T1s that I am aware of who *happily* rely on the services of their GP surgery are ones that are very balanced.  I would never want to be without the support of the DSN and Consultant.  I know that they are there to help and that when I am getting in a muddle they will respond to emails or I can phone them.  I would encourage you to get a referral.  I know it may be difficult to find time for this but I think that it could help you to get things back on track.

You are already taking steps to sort out your levels.  Stick to the two Levemir injections, adjusting them as necessary, and always inject for any food you eat.  Then gradually work on each of your different ratios for injections, just as you have started to do.  A DSN could help by looking at your results with you.  They do not judge, they are there to help you sort things out.


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## Sarah JW (Jul 9, 2018)

SB2015 said:


> Good morning Sarah.
> 
> Can you think of other reasons why you were high yesterday morning?
> As you say it could be that you had a hypo and still need to drop your night time Levemir
> ...


Thank you so much for the advice, I have been on to the gp nurse asking for referral over to DSN
I find it really hard not to eat late because by the time I have finished work and sorted my grandma who has dementia, I rarely get home before 8pm


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## SB2015 (Jul 9, 2018)

Ideal meal times are not always practical, so we have to make the best fit we can for the Diabetes to work with our lives. Just tackle things step and by step.

If you can’t ge the Pratice nurse to give you a referral can you go back to your GP.  I am sure you would benefit from some specialist advice, and the Practiec will struggle to help you alter ratios etc.


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## Sarah JW (Jul 22, 2018)

The practice nurse is getting annoyed with me, I have contacted her several times to check whether she referred me. I know she hasnt because I ahve spoken to the SDN and they havnt received a referral, I have now given up, the nurse just keeps trying to get me to change my machine when she knows full well I dont want to. I phoned and requested a gp call back on fri, so I am hoping that they get back to me monday. My friend has suggested I just go in and see the gp, but I am so fed up of wasting my life with all these apointments I just want to be normal


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## SB2015 (Jul 22, 2018)

It may be that the referral would have to be done by the GP, rather than the nurse,  so it is good that you are arranging for a call back. Are you able to book appointments online?  As a back up you could book an appointment with the GP, so that if they have not phoned you back there is that in place.

The only T1s that should be managed by the GP surgery are those that are stable and self managing, but they should always be able to refer back to the specialists. The nurse getting annoyed is not your problem, although I know it must be irritating and tiring, and just adds to the stress.  Once you are in the hands of the specialists they will be able to support you appropriately.  Stick at this phase as in the long run once you have the help to get things should get easier.


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## Ruby/London (Jul 22, 2018)

Sarah JW said:


> Hi
> I have posted a little while ago, I am not new to diabetes having been diagnosed in 1980, however I am relatively new to this site. I am really struggling at the moment with a variety of things in my life and a bit worried about disclosing all of which to one of these sites. My diabetes is all over the place, HBA1C the highest it has been for a while and I feel out of control with it. I feel scared of going back to see practice nurse or even the diabetes nurses as I feel that I should know what I am doing. I have such a busy life both at work and at home and just feel so helpless at the moment to make changes, then feeling guilty about not making changes. I just do not know what to do, I feel so empty



Personally, I'd ditch the guilt, take a deep breath and make an appointment.  I think it is important that your support team know how much you are struggling and would want to support you.  It might also be useful to ask for a referral for some counselling, talking therapies can be a great help and it sounds like you might also be struggling with exhaustion/depression, which wouldn't be at all surprising from what you have described.

Sending you a virtual hug - sounds like you need one.  Don't worry about sorting it all out - a step at a time...

Good luck, Sarah and it would be good to hear how you are getting on - even if you don't feel ready to make changes.

Update...
Glad to hear you have taken the plunge and contacted the practice but sorry to hear that the practice nurse is not being helpful.  Persevere . Personally, I'd make an appointment to see the GP to discuss your options and see if he can hurry this referral along.    It might also be worth asking if there is any help for carers,  even a coffee with a local carers group  can make a difference. You need a support network, online and offline, by the sounds of it.


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## HOBIE (Jul 22, 2018)

Please look after yourself & your grandma. Have you thought about a Pump ? I am self-employed & never know if I am up ladders or scaffold. I put a temp basal on when it suits. Good luck


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## Sarah JW (Jul 24, 2018)

Ruby/London said:


> Personally, I'd ditch the guilt, take a deep breath and make an appointment.  I think it is important that your support team know how much you are struggling and would want to support you.  It might also be useful to ask for a referral for some counselling, talking therapies can be a great help and it sounds like you might also be struggling with exhaustion/depression, which wouldn't be at all surprising from what you have described.
> 
> Sending you a virtual hug - sounds like you need one.  Don't worry about sorting it all out - a step at a time...
> 
> ...


Thanks  for the advice, I have looked at carers stuff, but unfortunately it is in work hours. I did phone the dementia help line, last week when I was in tears hysterical, they were lovely and really helped, they must have thought I was crazy, I just cudnt stop crying. It was good tho to get some advice and be listened to


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## Ruby/London (Jul 27, 2018)

Hi Sarah, lots of good advice on managing your highs and hypos - I hope you are making progress.

The Dementia helpline was an inspired choice and available when you need it. You are taking steps to build your support network  I am hoping you have managed to see your GP, they are the gateway to services and might also be able to help with support for your grandma.  

One of the tools we use at work is a wellness at work plan.  The process can apply to any condition/situation and the focus is on self care.  I know you don't need me to tell you that you can't care for anyone else if you are not looking after yourself.

https://www.mind.org.uk/workplace/m...oyer-resources/wellness-action-plan-download/

Keep going Sarah, you cn get this under control.  You have made a positive start and can build from there - and if you need support/coaching buddies - here we are.


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## Martin9 (Jul 27, 2018)

Hi Sarah, I can't offer much advice, as there's a lot of good advice here, but I'm saddened to hear of your treatment at the hands of your GP Surgery, it certainly wouldn't help, and may exacerbate your low mood, I would just like to say, try keep faith, it's them who are in the wrong, be quiet but insistent that you receive the treatment you deserve..


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## Sarah JW (Jul 29, 2018)

Martin9 said:


> Hi Sarah, I can't offer much advice, as there's a lot of good advice here, but I'm saddened to hear of your treatment at the hands of your GP Surgery, it certainly wouldn't help, and may exacerbate your low mood, I would just like to say, try keep faith, it's them who are in the wrong, be quiet but insistent that you receive the treatment you deserve..


Thanks Martin
I have eventually got re referred hooray!!!!
I gave up on quiet and insistent and ended up shouting and crying and being demanding whilst in the middle of a hypo, which one of the gp's I dont know managed quite well actually (the hypo I mean). He did agree to refer me to specialist nurse and said he couldnt understand why it has taken so long. He is now on my list as the gp to go and see in future. Im now just worried about seeing the specialist nurse, I dont know whether it is just me but im scared that they think I should already know everything having been diagnosed so long and then come out thinking I did know that but just didnt do it


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## SB2015 (Jul 29, 2018)

Sarah JW said:


> Thanks Martin
> I have eventually got re referred hooray!!!!
> I gave up on quiet and insistent and ended up shouting and crying and being demanding whilst in the middle of a hypo, which one of the gp's I dont know managed quite well actually (the hypo I mean). He did agree to refer me to specialist nurse and said he couldnt understand why it has taken so long. He is now on my list as the gp to go and see in future. Im now just worried about seeing the specialist nurse, I dont know whether it is just me but im scared that they think I should already know everything having been diagnosed so long and then come out thinking I did know that but just didnt do it



Sarah, great to hear that you have finally got a referral, and a GP that sounds a lot more sensible.  Phew.
I can understand why your first DSN appointment is a bit of a worry, but they are there to help you.  If there is anything you don’t understand just ask them.  They will also probably be very used to people who have not been able to get any sense out of a GP or Practice nurse!  The fact that you are wanting to improve your control and also dealing with so much other stuff will be all that they need to know. I am sure that they will be there for you.  Another good thing that I find is we get a full 30 minute appointment, but adapt as necessary.  My first ever one was 45 minutes.

It might be useful to write a list of questions.  I also take someone with me to any hospital appointment about which I am concerned.  They have a copy of my questions and can prompt me if I forget to ask anything, and jot down notes as I chat with the HCP.  Would that be possible for you?

Let us know how you get on.


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## Martin9 (Jul 29, 2018)

Sarah JW said:


> Thanks Martin
> I have eventually got re referred hooray!!!!
> I gave up on quiet and insistent and ended up shouting and crying and being demanding whilst in the middle of a hypo, which one of the gp's I dont know managed quite well actually (the hypo I mean). He did agree to refer me to specialist nurse and said he couldnt understand why it has taken so long. He is now on my list as the gp to go and see in future. Im now just worried about seeing the specialist nurse, I dont know whether it is just me but im scared that they think I should already know everything having been diagnosed so long and then come out thinking I did know that but just didnt do it


Well if screaming and crying worked, all ok, but no way you should have to go there, to get some decent healthcare xx


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## Sarah JW (Aug 12, 2018)

Hi All

Just wondering, what are peoples experience in length of time to wait for the DSN to be in touch???


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## SB2015 (Aug 12, 2018)

Hi Sarah

If you are still waiting for your first appointment, ask for the Practice to chase this up, or ask the ‘good’ GP that you saw. They should be able to hasten things.  Are you able to take up a cancellation at short notice.  I realise that with your caring role as well that that may be more difficult.  If  it is possible that can help both you and them as it fills a space that would otherwise be wasted. 

After the first appointment, you should be able to access them with questions in between appointments.  At ours we can email and we get a reply within a couple of days.  For more urgent enquiries we can phone the office and ask for a call back.


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## Sarah JW (Aug 19, 2018)

I will give it a try as still no contact, I rang the DSN up, however had received no referral.


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