Can't take much more of this.

[Lee farrington]

I don't post very often but I do look around the forum quite a bit.
Well I don't really know where to start as there is so much going on at the moment. So here goes, I went to the doctor for a check up and blood tests a couple of weeks ago, I was with the nurse for 1 1/2 hours as I've been having a lot of issues with my diabetes. My hba1c is 133, my kidney disease has gone to stage 4 and they are talking about dialysis.my sugars are very rarely below 18. I wake up at least 7 times in the night for a wee and if I'm not doing that I'm laying awake with cramps. I've got bad nephropathy in my feet and the worst throbbing in my fingers. My vision is getting worse day by day. I've been waiting for an iron infusion since may. All of this is while im giving myself 48 units of levemir in the morning and 52 at night. Novoraoid is 18 breakfast 11 lunch and 39 with dinner and none of this is making any difference, I can go to bed and my sugars might be 17/18 and I can wake up in the morning and they can be 26+. I eat healthy and have an active job, which I'm slowly coming to an end with that due to the way my health is, as I'm running out of energy and being a roofer things could get complicated.
I've well and truly had enough I'm so depressed with it all, all I do is do what the doctors say and nothing is working, the insulin is clearly not working. The whole thing is really getting to me, I send my days feeling tired and in pain from the cramps. Also I'm scared about my hba1c (133) , my kidneys and my vision, stroke/ heart attack. I feel lost and alone , I'm married but don't want to worry my wife and I feel I can't talk to my mum and dad as my sister died 5 years ago at age 35 due to diabetes.
I've always be a fighter but I'm warn out physically and mentally

All the insulin units I give myself are what the diabetic nurse tells me to take, she puts them up every time I speak to her.

 

[Torres71]

Hi Lee. It's perfectly understandable you are feeling the way you do given your current situation. It's so important you are provided with the medical support you need, especially given your medication seems not be helping you at all. I just wondered if you've been under the care of a diabetic specialist nurse, which is completely different to the diabetes nurse at the GP's. If I was you I'd request a referral to an endocrinologist, for further investigation. I can relate to how your feeling, as I've have felt the same, shocked, devastated, lost, down in the dumps & scared when I was diagnosed as diabetic in April this year & each HBA1C goes up. For me it has been a long road & I have read this forum & found it helpful - a Lifeline. I eventually got referred to an endocrinologist & am having weekly support from my diabetes specialist nurse who phones weekly & am awaiting to find my antibody tests results out if I'm type 1 or 2. My medication (Gliclazide) isn't working too well & keeps being increased. I wanted to say hang in there, you're not alone & the members here will offer their knowledge & support to you. Take care.

 

[EllieM]

I'm so sorry, it sounds as though you are in a sad and scary place. Lots of virtual hugs.

I'm sorry that you feel you can't talk to your family about this at the moment but know that there will always be sympathetic ears on these forums for you.

Unfortunately poor diabetic control can lead to depression and depression can lead to poor diabetic control, so you sound as though you might be stuck in a vicious circle there. I realise you don't want to worry your family, but I know that if my loved one was in your place I'd rather know about their problems and offer some support rather than be left in the dark as to why they are unhappy (and ill).

All the insulin units I give myself are what the diabetic nurse tells me to take, she puts them up every time I speak to her.

Has the nurse taught you how to do correction doses? Has she checked that you haven't got lipohypertrophy in your injection sites? Are you carb counting your meals or eating roughly the same thing every day? Those levels are unfortunately very high but it should be possible to bring them down by adjusting your insulins appropriately. And it's never too late to improve your diabetic control.

I am also wondering if there is any T2 in your family as it sounds that you might be quite insulin resistant? (In which case it might be helpful to reduce your carbs. But honestly, people's insulin needs vary so massively that I shouldn't make assumptions about insulin resistance, as I don't know your weight and am guessing that with an active job you may eat a fairly carby diet.)

It's good that you are talking to the nurse, hopefully very frequently, as your insulin dose needs to be right for your needs. Are you getting input from a diabetic specialist at a hospital as well?

Good luck. I'm in New Zealand so it's day here, but you should get some more comments once the UK folk are back in day time.

 

[MeiChanski]

Hello there, I’m really sorry you are going through all of this. I think it’s time for you to say how you would like for your diabetes team at the hospital to help you. Start off by saying you’d like to see a dietitian to learn how to carb count or do a carb counting course. This is so you learn to adjust your insulin to whatever you are doing and eating and bring your hba1c down slowly. Also the hospital can refer you to see someone like a therapist to talk, again it’s the case of asking. If your hospital team are not helping you after all of this, you can ask your GP to refer you to another hospital. You are not alone, you still have energy inside to demand help from your hospital. (If you aren’t seeing a nurse or a consultant at a hospital, you need to ask your GP to refer you to one. That’s only if you don’t see a specialist.) I’m sending you lots of hugs, best of luck to you.

 

[MeiChanski]

You can join us at Type 1 stars R us forum post, we don’t bite if you fancy a chat.

 

[Jaylee]

I don't post very often but I do look around the forum quite a bit.
Well I don't really know where to start as there is so much going on at the moment. So here goes, I went to the doctor for a check up and blood tests a couple of weeks ago, I was with the nurse for 1 1/2 hours as I've been having a lot of issues with my diabetes. My hba1c is 133, my kidney disease has gone to stage 4 and they are talking about dialysis.my sugars are very rarely below 18. I wake up at least 7 times in the night for a wee and if I'm not doing that I'm laying awake with cramps. I've got bad nephropathy in my feet and the worst throbbing in my fingers. My vision is getting worse day by day. I've been waiting for an iron infusion since may. All of this is while im giving myself 48 units of levemir in the morning and 52 at night. Novoraoid is 18 breakfast 11 lunch and 39 with dinner and none of this is making any difference, I can go to bed and my sugars might be 17/18 and I can wake up in the morning and they can be 26+. I eat healthy and have an active job, which I'm slowly coming to an end with that due to the way my health is, as I'm running out of energy and being a roofer things could get complicated.
I've well and truly had enough I'm so depressed with it all, all I do is do what the doctors say and nothing is working, the insulin is clearly not working. The whole thing is really getting to me, I send my days feeling tired and in pain from the cramps. Also I'm scared about my hba1c (133) , my kidneys and my vision, stroke/ heart attack. I feel lost and alone , I'm married but don't want to worry my wife and I feel I can't talk to my mum and dad as my sister died 5 years ago at age 35 due to diabetes.
I've always be a fighter but I'm warn out physically and mentally

All the insulin units I give myself are what the diabetic nurse tells me to take, she puts them up every time I speak to her.

Hi,

You're a roofer. You keep the rain off people's heads, yet....

Your long acting basal insulin. (Levimir) do this whilst having your days off.. Have you tested your dosage first?
It the "foundation" the rest is built on... https://www.mysugr.com/en/blog/basal-rate-testing/

Yep, I sort of appreciate the job may cause an apetite. Hence looking at what the basal is doing on some days off.
Then look at what the Novorapid is doing regarding the diet...

Best wishes..

 

[Lamont D]

Hi, it's good to talk.
Bet you feel a little bit better for posting about your problems.
I know I did.
I have been recently diagnosed with severe depression and anxiety disorder because I was made redundant and several other things all to do with covid.
I like many diabetics have to watch what I eat. But due to everything going on at that time, I fell off the wagon and my physical health suffered even though I knew that I shouldn't.
I had a breakdown and I couldn't cope with the increasing number of stress related things in my brain.
I made the decision with support from my wife and children (all in their thirties) to seek help, so I made a phone appointment with my doctor.
She listened to me for about an hour, because it just tumbled out and after that she insisted that I attended the surgery to get a check up. Meanwhile my doctor got me an initial session with a counsellor.
I have attended a number of sessions, I am on antidepressants and I have got my health back.
The difference is talking to someone who understands what you are going through.
I like the others would recommend that you get a referral to a specialist endocrinologist.
I can't help with your diabetes control.
But from my experience, you can't bottle it up. You need to talk and get help.
My GP has been exceptionally brilliant. My counsellors are great.
That is what they are there for.
It is your health and responsibility to your family to get yourself sorted.
I have had experience of someone within my family that thought he was indestructible and he obviously didn't. If you have had dark thoughts, you need help.
Get it. It's good to talk!

Keep safe

 

[Robinredbreast]

I don't post very often but I do look around the forum quite a bit.
Well I don't really know where to start as there is so much going on at the moment. So here goes, I went to the doctor for a check up and blood tests a couple of weeks ago, I was with the nurse for 1 1/2 hours as I've been having a lot of issues with my diabetes. My hba1c is 133, my kidney disease has gone to stage 4 and they are talking about dialysis.my sugars are very rarely below 18. I wake up at least 7 times in the night for a wee and if I'm not doing that I'm laying awake with cramps. I've got bad nephropathy in my feet and the worst throbbing in my fingers. My vision is getting worse day by day. I've been waiting for an iron infusion since may. All of this is while im giving myself 48 units of levemir in the morning and 52 at night. Novoraoid is 18 breakfast 11 lunch and 39 with dinner and none of this is making any difference, I can go to bed and my sugars might be 17/18 and I can wake up in the morning and they can be 26+. I eat healthy and have an active job, which I'm slowly coming to an end with that due to the way my health is, as I'm running out of energy and being a roofer things could get complicated.
I've well and truly had enough I'm so depressed with it all, all I do is do what the doctors say and nothing is working, the insulin is clearly not working. The whole thing is really getting to me, I send my days feeling tired and in pain from the cramps. Also I'm scared about my hba1c (133) , my kidneys and my vision, stroke/ heart attack. I feel lost and alone , I'm married but don't want to worry my wife and I feel I can't talk to my mum and dad as my sister died 5 years ago at age 35 due to diabetes.
I've always be a fighter but I'm warn out physically and mentally

All the insulin units I give myself are what the diabetic nurse tells me to take, she puts them up every time I speak to her.

Please talk to your wife, you're a union, a team, friends as well, so you have to share, the good as well as the bad.
I'm saddened to read of your bereavement, you must be feeling anxious.

I really do think you need to speak to your GP asap and get it all out, your health is in jeopardy so you need help and support.
Take good care.

 

[JAT1]

Sorry about your troubles. Do you carb count? Do you follow a low-carb diet?

 

[sassycat]

Hi Lee

I'm so sorry you're going through such a tough time at the moment.

One thing I would like to say firstly is that I assume you're seeing a hospital specialist owing to your kidney disease? Possibly you saw your GP and practice nurse merely because they were the only medical people you could get to at the moment. To me it sounds as if you are in a situation you can't change by yourself, you must be able to access specialist help if you're not already.

I'm only too aware that the pandemic has left people unable to access the health care they need and are entitled to, but I feel you need to push really hard to get this. I sympathise with having reached the point where you feel you can't do anymore and I would say - ask your wife to help you. I'm pretty sure she's already worrying about you and would love to have something specific to do to help. I would suggest she first contacts your GP practice and demands an urgent referral to your local hospital based diabetes clinic - GPs aren't specialists how ever well informed they are. If this doesn't work I would suggest she contacts the hospital clinic directly and asks to speak to a DN (diabetes nurse) urgently. I don't imagine many DNs would turn away a person in your state, and would know how to cut corners and jump queues when necessary! In my experience diabetic nurses are the unsung heroes of diabetic clinics.

You mention kidney disease, I don't know how this would affect your blood sugar levels but any illness or infection will make your sugar go up so I imagine kidney disease will too. Also there may be other issues related to this which could be making it even harder to control your sugar.

Obviously I don't know how old you are or where you live, but you really shouldn't be left to try and sort this yourself. Whatever's going on around us you must get help now. I went through some pretty bad times when I moved from one area to another and slipped through the net for a while, but I'm doing much better now. I'm fortunate enough to be using an insulin pump (which was a huge improvement) and now the Libre blood glucose sensor which let's me check my sugar level in an instant - and with one hand, always important for a roofer!! I do sympathise!

Lastly I am so sorry to hear of the loss of your sister, that must make your current situation unbearably difficult. I lost my brother to a sudden heart attack some years ago and I'm paranoid that I may suffer the same fate. But thankfully I know that I'm very lucky in that I have all the support I need to try to prevent that. I truly wish you all the best as you fight for the help you need and deserve.

 

[Lee farrington]

Thank you all so much for your kind messages.. I will try and answer them in one message.
I am under the specialist diabetic team at the hospital and was getting weekly phone calls which went on for a few months, but I missed one call and she stopped calling. I rang the clinic and left voicemails but never heard anything back. I haven't seen them since December last year and that includes the kidney specialist..I seen to have fallen through the net as far as the hospital are concerned. When ever I do see my gp or nurse all I ever get is bad news, but nothing ever seems change. Like today for instance, the nurse from my gp surgery called today just to see how I'm feeling and also asked if the doctor had called me at the beginning of the week to talk about my kidneys and what they are planning to do i.e. Treat/medication.. I said no and all she said was, if they haven't rang by 4 on Monday, I've got to call them as it's urgent.well if it's urgent why didn't they call me. Also they are sending a letter to my kidney specialist.
So today I called the the diabetic team at the hospital and asked for an urgent phone call back ( still waiting ).
I've been offered the dapnie course for the last 4 years but nothing ever happens. I don't even know where to start with that.

When I do get to talk to someone ( the nurse today who I feel is the only one who cares ) it's all to much to take in, and when I get off the phone I'm so confused by it all, all I want to do is scream and cry.
I feel it's one step forward and three back.
I did feel a bit better once i put the post up.
I just feel so scared/lost/alone and let down.

My kidney specialist was also my sisters and he told me after she died that he promises me that he will do all can to help me. As he knew what a very slow and painful deaf she had and knew I was there to witness it and was scared that the same was going to happen to me.

Sorry to go on and once again thank you.

 

[MeiChanski]

Thank you all so much for your kind messages.. I will try and answer them in one message.
I am under the specialist diabetic team at the hospital and was getting weekly phone calls which went on for a few months, but I missed one call and she stopped calling. I rang the clinic and left voicemails but never heard anything back. I haven't seen them since December last year and that includes the kidney specialist..I seen to have fallen through the net as far as the hospital are concerned. When ever I do see my gp or nurse all I ever get is bad news, but nothing ever seems change. Like today for instance, the nurse from my gp surgery called today just to see how I'm feeling and also asked if the doctor had called me at the beginning of the week to talk about my kidneys and what they are planning to do i.e. Treat/medication.. I said no and all she said was, if they haven't rang by 4 on Monday, I've got to call them as it's urgent.well if it's urgent why didn't they call me. Also they are sending a letter to my kidney specialist.
So today I called the the diabetic team at the hospital and asked for an urgent phone call back ( still waiting ).
I've been offered the dapnie course for the last 4 years but nothing ever happens. I don't even know where to start with that.

When I do get to talk to someone ( the nurse today who I feel is the only one who cares ) it's all to much to take in, and when I get off the phone I'm so confused by it all, all I want to do is scream and cry.
I feel it's one step forward and three back.
I did feel a bit better once i put the post up.
I just feel so scared/lost/alone and let down.

My kidney specialist was also my sisters and he told me after she died that he promises me that he will do all can to help me. As he knew what a very slow and painful deaf she had and knew I was there to witness it and was scared that the same was going to happen to me.

Sorry to go on and once again thank you.

I know you are very tired from having to chase them, if you don’t chase, they won’t chase you so keep chasing up on everything. As for DAFNE, I don’t know how it is with COVID-19, again keep calling your hospital to ask when the next available time slot for it or you could ask to speak to a dietitian for a start or the basics of carb counting. Sometimes a dietitian can get you on DAFNE. I tend to find carb counting courses hard to get onto, because they do it twice a year. So if there is an opportunity, hop on! I’m sending you all the hugs during this difficult time, so keep us updated. You are not alone, we are in this storm together and I really do hope you get through to someone for help or at least put you in the right direction for help.

 

[Lamont D]

Hi and thanks for sharing your physical health problems and you do still need to keep persisting that your surgery helps you by getting the right treatment.
Do not forget that A&E are still open and they have to see you and if they should have someone on call to help you.

You never mentioned your mental health except the frustration of not getting seen.
I can tell by your post that you also need to look after your mindset.
There are good options out there, but you have to make the first step. Have a Google about depression and anxiety and the people who are there to help you, it will be local and only too pleased to listen and advise what you can do to get the proper treatment.

Always remember you are not alone and help is out there.
The sooner you do the better the future will look.

I know from experience what it's like to go through getting a proper diagnosis and battling mental illness. I'm still struggling myself and its horrible, but I have had a couple of better days this week and no really bad days.

Please, look after yourself.

Stay safe.

 

[ert]

I'm sorry you're having a tough time of it and I really hope you get the support you need soon. If changing your injection sites, your insulin still isn't working, it's likely to be a dosing issue. If you have insulin resistance, you need your DN to help solve this.
I recommend a course in the meantime: https://www.bertieonline.org.uk/

 

[Lee farrington]

Hi and thanks for sharing your physical health problems and you do still need to keep persisting that your surgery helps you by getting the right treatment.
Do not forget that A&E are still open and they have to see you and if they should have someone on call to help you.

You never mentioned your mental health except the frustration of not getting seen.
I can tell by your post that you also need to look after your mindset.
There are good options out there, but you have to make the first step. Have a Google about depression and anxiety and the people who are there to help you, it will be local and only too pleased to listen and advise what you can do to get the proper treatment.

Always remember you are not alone and help is out there.
The sooner you do the better the future will look.

I know from experience what it's like to go through getting a proper diagnosis and battling mental illness. I'm still struggling myself and its horrible, but I have had a couple of better days this week and no really bad days.

Please, look after yourself.

Stay safe.

My mental health isn't great, it hasn't been for a while and all the worry and uncertainty is not helping. If I'm honest there has been a few times when I've felt like giving up. Some times I feel it's not worth taking my insulin or my other medication for my heart and kidneys, because all I do is take them and nothing is helping. It's so draining and I guess there's people on here that has felt the same at some point. Every day it seems to harder to cope with.

 

[Lamont D]

About three months ago I was were you are now!
I had just been made redundant. There was a list of other things all more or less attributed to covid and I'm not exaggerating my brain couldn't cope and what is called a breakdown, my head just cracked and I closed down and it was the most awful moment in my life, I just sat down in the back garden and couldn't move, I couldn't think and I felt like I couldn't go on, I didn't want to face the next minute, I wanted the world to stop, to go back as if life hadn't done this to me. Why? What for? What did I do? Why me? I have an excellent work record. My dream job just dumped me.
I couldn't except what had happened. I couldn't comprehend the experience I was going through, I closed down.
I wanted everyone and every day problems would go away and leave me alone.
I was diagnosed with anxiety disorder because I couldn't stop thinking about how I was going to get through it, I was a failure, I let my family down, I was growing more introvert and on my own.
My anxiety was really bad, I was worried about everything and everyone, my family has a few who have had to shield because of age and underlying conditions, all my children are on the front line, and I have seven grandchildren and lots of cousins, nephews, nieces on both sides of the family, I'm an uncle to about fifteen, I have a large family, and we are close, as this virus continues, im becoming more isolated which is not helping.

So you see, my life ended as such as it was. I had two sides to my brain, my family and my sport. They took away my dream job in sport, and I had nothing to replace it.
One part of my conscious was void, I only had family, and because of covid I couldn't see them! I have struggled so much to get to a point, where now from the despair of not being useful, I now see the way ahead and I have to just hang in there a little while longer and, my life after covid is gonna be a lot better.

I do know what is going on with you and it does seem too much, but the alternative is worse not only for you but your family,.
You do really need to talk to your medical team and get the help like what I got which was unbelievable.
Just talking to someone will help.

Get your brain working, get your health sorted and move forward.
There are a lot of people out there who are worse off. There are a lot of people out there who have asked for help, why not you?

 

[Lee farrington]

About three months ago I was were you are now!
I had just been made redundant. There was a list of other things all more or less attributed to covid and I'm not exaggerating my brain couldn't cope and what is called a breakdown, my head just cracked and I closed down and it was the most awful moment in my life, I just sat down in the back garden and couldn't move, I couldn't think and I felt like I couldn't go on, I didn't want to face the next minute, I wanted the world to stop, to go back as if life hadn't done this to me. Why? What for? What did I do? Why me? I have an excellent work record. My dream job just dumped me.
I couldn't except what had happened. I couldn't comprehend the experience I was going through, I closed down.
I wanted everyone and every day problems would go away and leave me alone.
I was diagnosed with anxiety disorder because I couldn't stop thinking about how I was going to get through it, I was a failure, I let my family down, I was growing more introvert and on my own.
My anxiety was really bad, I was worried about everything and everyone, my family has a few who have had to shield because of age and underlying conditions, all my children are on the front line, and I have seven grandchildren and lots of cousins, nephews, nieces on both sides of the family, I'm an uncle to about fifteen, I have a large family, and we are close, as this virus continues, im becoming more isolated which is not helping.

So you see, my life ended as such as it was. I had two sides to my brain, my family and my sport. They took away my dream job in sport, and I had nothing to replace it.
One part of my conscious was void, I only had family, and because of covid I couldn't see them! I have struggled so much to get to a point, where now from the despair of not being useful, I now see the way ahead and I have to just hang in there a little while longer and, my life after covid is gonna be a lot better.

I do know what is going on with you and it does seem too much, but the alternative is worse not only for you but your family,.
You do really need to talk to your medical team and get the help like what I got which was unbelievable.
Just talking to someone will help.

Get your brain working, get your health sorted and move forward.
There are a lot of people out there who are worse off. There are a lot of people out there who have asked for help, why not you?

Thank you

 

[MissJenniferJones]

I don't post very often but I do look around the forum quite a bit.
Well I don't really know where to start as there is so much going on at the moment. So here goes, I went to the doctor for a check up and blood tests a couple of weeks ago, I was with the nurse for 1 1/2 hours as I've been having a lot of issues with my diabetes. My hba1c is 133, my kidney disease has gone to stage 4 and they are talking about dialysis.my sugars are very rarely below 18. I wake up at least 7 times in the night for a wee and if I'm not doing that I'm laying awake with cramps. I've got bad nephropathy in my feet and the worst throbbing in my fingers. My vision is getting worse day by day. I've been waiting for an iron infusion since may. All of this is while im giving myself 48 units of levemir in the morning and 52 at night. Novoraoid is 18 breakfast 11 lunch and 39 with dinner and none of this is making any difference, I can go to bed and my sugars might be 17/18 and I can wake up in the morning and they can be 26+. I eat healthy and have an active job, which I'm slowly coming to an end with that due to the way my health is, as I'm running out of energy and being a roofer things could get complicated.
I've well and truly had enough I'm so depressed with it all, all I do is do what the doctors say and nothing is working, the insulin is clearly not working. The whole thing is really getting to me, I send my days feeling tired and in pain from the cramps. Also I'm scared about my hba1c (133) , my kidneys and my vision, stroke/ heart attack. I feel lost and alone , I'm married but don't want to worry my wife and I feel I can't talk to my mum and dad as my sister died 5 years ago at age 35 due to diabetes.
I've always be a fighter but I'm warn out physically and mentally

It seems either you're not taking enough insulin or you're just eating to much carbs in relation to the dose. They have to balance. My advice is to ask about a DAFNE course (Dosage Adjustment For Normal Eating) which will help you to get the ratio right. Re the iron infusion, I'm assuming you've been told you're anaemic? That won't have any bearing on your bs, as its a separate issue.

All the insulin units I give myself are what the diabetic nurse tells me to take, she puts them up every time I speak to her.