Rebelling - but why?

[FrancescaN]

Hi,
It's 3.35am ( here in the UK) and felt I had to post on the forum as I need a gentle yet positive shove back onto the "path" I was walking.
Let me explain, I'm PEG FED and was diagnosed with Type 2 Diabetes on 5th April this year. I was in deep, deep shock especially from my treatment at the hospital by a horrid Diabetes Specialist nurse ( my GP sent me back the next day as she was fuming at my treatment - I was basically sent home with a Contour Meter, Novomix 30 pen, Glicizade and loads of leaflets and handout sheets). My BG was 30.5!!
My doctor arranged for the district nurses to visit me every day so that I grew confident enough to do my BG & Insulin jabs myself. The very first nurse who visited me at home was shocked at what they sent me home with as no dosage was prescribed on the sheet and she had to go to an Out Of Hours GP who prescribed 15 units to start with. The district nurses were my guardian angels, fantastic and treated me with dignity and encouraged me every step of the way.
So I had to do my BG 3 times a day (pre meals) and they upped my Insulin to 36 units before my nightly PEG FEED (2 bags of Nutrison Advanced nightly- reduced to 1 1/2 bags when I was diagnosed with Diabetes, now on 1 bag nightly - 1000 mls ). My insulin was reduced to 32 units nightly and as the Glicizide was bringing my BG to under 4 and giving me mild hypos, I'm on 40mgs ( half a tablet).
My diet is extremely limited as I have LYMPHANGIECTASIA and my body can't absorb nutrients. Now they have found something wrong with my heart and have to see a heart specialist (again). All this whilst going through the menopause (I'm 51).
Because I'm so very tired, lately I've not been testing my BG, not every day, just here and there, and not taking my Insulin or Glicizade. Some nights I don't even take my Peg Feed. I know it's wrong and I'm storing up trouble for myself, but it's like I got so much wrong going on with my body that I'm kind of rebelling against everything. I used to be so healthy and very fit. I brought up two boys who are doing extremely well with their life's , single handily, and come from a close knit family.
Even as I write this I know I'm doing wrong, I have a routine to do my Peg Feed & Insulin regime, so why am I rebelling? I say to myself "Come on Fran, this is not on. Tomorrow you must shrug off this foolishness and get with the programme"! And I do, but the day after that I don't. This has been going on for 2 weeks with the Diabetes, and a week with my Peg Feed. Has anyone had this happen to them? Please, I need a friendly shove in the right direction and some positive encouragement. I know this is the right place to come to and ask for help as the people on here are just wonderful and know what they are talking about. I look forward to your replies, and thank you for taking the time to read this.

 

[letstalk1]

You can do all this , you have good help with district nurses still I hope? Things will settle down as you have some time to get everything straight and organized , and yes lots of support here , you can do this.

 

[FrancescaN]

P.S I also take Creon capsules with every meal. These I was started on in hospital last year ( I was in hospital for 7 months all told because they had to find out what was wrong with my stomach). I was very ill for 5 years (!) always rushed into hospital by ambulance. Mr Khan my Consultant took it very serious on my last admission because in his words I was "extremely unwell, in fact close to going into a coma and dying". Wow! I was in shock. Mind you I was a mess, hair & teeth falling out, slow heartbeat, and my body was so swollen even though I was critically malnourished. On other admissions it was "gastro- enteritis " " tummy bug" etc etc. I had so many invasive tests - no orifice was off limits lol. The VERY last test was a little camera ( the size of a jelly bean - I forget the name of it) and I had a harness strapped to me for 11 hours and this little camera took thousands of photos and blue- toothed them to a device I had on my hip that looked like an iPod. That is how they found out that my small intestines were kaput, not working, end of. After 5 years of pain and misery, I was over the moon that I had a diagnosis!! Mr Khan was determined to find out what was wrong. In hospital I had so many blood tests that my veins collapsed ( or shied away, lol). Anyway I had to start Creon immediately, so I'm wondering, if Creon is for the pancreas, would that have meant my Pancreas is not working properly? And is this why I have Diabetes - although they said I was probably diabetic for years and didn't know.

 

[FrancescaN]

You can do all this , you have good help with district nurses still I hope? Things will settle down as you have some time to get everything straight and organized , and yes lots of support here , you can do this.

I was discharged by the District Nurses as I could do my BG & Insulin by myself with confidence.

 

[leslie10152]

Hi,
It's 3.35am ( here in the UK) and felt I had to post on the forum as I need a gentle yet positive shove back onto the "path" I was walking.
Let me explain, I'm PEG FED and was diagnosed with Type 2 Diabetes on 5th April this year. I was in deep, deep shock especially from my treatment at the hospital by a horrid Diabetes Specialist nurse ( my GP sent me back the next day as she was fuming at my treatment - I was basically sent home with a Contour Meter, Novomix 30 pen, Glicizade and loads of leaflets and handout sheets). My BG was 30.5!!
My doctor arranged for the district nurses to visit me every day so that I grew confident enough to do my BG & Insulin jabs myself. The very first nurse who visited me at home was shocked at what they sent me home with as no dosage was prescribed on the sheet and she had to go to an Out Of Hours GP who prescribed 15 units to start with. The district nurses were my guardian angels, fantastic and treated me with dignity and encouraged me every step of the way.
So I had to do my BG 3 times a day (pre meals) and they upped my Insulin to 36 units before my nightly PEG FEED (2 bags of Nutrison Advanced nightly- reduced to 1 1/2 bags when I was diagnosed with Diabetes, now on 1 bag nightly - 1000 mls ). My insulin was reduced to 32 units nightly and as the Glicizide was bringing my BG to under 4 and giving me mild hypos, I'm on 40mgs ( half a tablet).
My diet is extremely limited as I have LYMPHANGIECTASIA and my body can't absorb nutrients. Now they have found something wrong with my heart and have to see a heart specialist (again). All this whilst going through the menopause (I'm 51).
Because I'm so very tired, lately I've not been testing my BG, not every day, just here and there, and not taking my Insulin or Glicizade. Some nights I don't even take my Peg Feed. I know it's wrong and I'm storing up trouble for myself, but it's like I got so much wrong going on with my body that I'm kind of rebelling against everything. I used to be so healthy and very fit. I brought up two boys who are doing extremely well with their life's , single handily, and come from a close knit family.
Even as I write this I know I'm doing wrong, I have a routine to do my Peg Feed & Insulin regime, so why am I rebelling? I say to myself "Come on Fran, this is not on. Tomorrow you must shrug off this foolishness and get with the programme"! And I do, but the day after that I don't. This has been going on for 2 weeks with the Diabetes, and a week with my Peg Feed. Has anyone had this happen to them? Please, I need a friendly shove in the right direction and some positive encouragement. I know this is the right place to come to and ask for help as the people on here are just wonderful and know what they are talking about. I look forward to your replies, and thank you for taking the time to read this.

We all rebel, we all want that which we cannot have. It is human nature. Even after 12 years I still rebel. But then I have always been the renegade. So now here I am telling people to stay on on the path - for us, there is no other place to go. Adapt to the new regime, what more can we do? We are here to assist.

 

[pavlosn]

Hi Francesca
Sorry to hear you have had such a bad time of it health wise and that you are struggling with your treatment at the moment.

First of all know that you are not alone, most of us have been through similar phases of denial and rebellion.

The mental aspect of accepting and dealing with having a long term condition such as diabetes is a big part of controlling this curse. And it sounds like you have had more on your plate than just diabetes.

I am no expert but for what they are worth here are my thoughts

You sound like an intelligent and capable person with reasons to be thankful for your life, not least your two sons.

Try to concentrate on the positive and look past the negative. Rely on your good district nurses and try to forget the bad treatment you have received from the diabetes nurse. Dealing with your diabetes is up to you not the diabetes nurse.

Do not be too hard on yourself. This is not easy mentally as I said and many of us have fallen off the saddle along the way. The important thing is to get back on.

Do what you need to do to control it today don't put it off until tomorrow. Tomorrow is a big trap as there is always one more of them just a day away.

Take baby step, take pride from any small victories and move on to the next step.

Keep a record of your metering and medicine taking and challenge yourself to keep doing it.

Last but not least, speak to people about how you feel and how you are coping. This forum is great for this.

All the best.

Pavlos

Sent from my SM-G935F using Diabetes.co.uk Forum mobile app

 

[Diakat]

It sound perfectly natural to we, the wanting to rebel thing, there is so much going on for you and it all imposed on you of course you want to control something, even if that control means not doing it!
Can you ask your diabetes team for some psychological help? You probably need to talk this through. Rationally you know not taking the insulin is wrong, but you carry on so you need help to get back in the loop. X

 

[Brunneria]

Hi and welcome!

Sorry to hear that you have been battling with this for so long, and so alone. Thank heavens for those good staff who have made the helpful breakthroughs.

Around here, what you are experiencing is called 'burnout'. It usually comes after months or years of grinding endless aggro and nearly all of us go through it at one time or another. Of course, we all experience it differently, and to different extents, but you are definitely not alone! Being on a PEG is a hugely different experience, and needs a massive shift in mindset (the husband of a friend of mine had one for a year, and I saw what he went through), and then adding in diabetic control too... my heart goes out to you.

You mentioned extreme tiredness/apathy, and that is part an parcel of it - but it is also an inevitable part of experiencing high blood glucose, so one thing adds to another, and it becomes an escalating vicious circle.

I have seen people mention that their way back from burnout is to try and do one thing. Just one. A test. or a jab. then when the time comes, just do the next thing. Focusing on one act, and not committing to the vast tedious future of all the other things. Just looking one step at a time.

Diakat's suggestion of asking for some emotional/psychological help is also a great one. Anyone would understand why you need it, after the experiences of the last few years.

 

[Brunneria]

You asked about Creon.

Most of the people using Creon around here are Type3c diabetics, whose pancreas isn't functioning.
You might find it better to ask that question in the 3c section of the forum where they are more likely to see your post.
Here is the link. Hope that helps.
http://www.diabetes.co.uk/forum/category/type-3c-pancreatic-diabetes.73/

 

[Janr20]

Hi Francesca
Sorry to hear you have had such a bad time of it health wise and that you are struggling with your treatment at the moment.

First of all know that you are not alone, most of us have been through similar phases of denial and rebellion.

The mental aspect of accepting and dealing with having a long term condition such as diabetes is a big part of controlling this curse. And it sounds like you have had more on your plate than just diabetes.

I am no expert but for what they are worth here are my thoughts

You sound like an intelligent and capable person with reasons to be thankful for your life, not least your two sons.

Try to concentrate on the positive and look past the negative. Rely on your good district nurses and try to forget the bad treatment you have received from the diabetes nurse. Dealing with your diabetes is up to you not the diabetes nurse.

Do not be too hard on yourself. This is not easy mentally as I said and many of us have fallen off the saddle along the way. The important thing is to get back on.

Do what you need to do to control it today don't put it off until tomorrow. Tomorrow is a big trap as there is always one more of them just a day away.

Take baby step, take pride from any small victories and move on to the next step.

Keep a record of your metering and medicine taking and challenge yourself to keep doing it.

Last but not least, speak to people about how you feel and how you are coping. This forum is great for this.

All the best.

Pavlos

Sent from my SM-G935F using Diabetes.co.uk Forum mobile app

Great advice from Pavlov. We all go through it and continue to rebel. Important to do baby steps. I have needle phobia .

I struggle each day to give myself insulin at tea time and bedtime even though the needle is small. I focus on living and trying to get control of my life now complicated initially by a stroke at 59 and out of control diabetes. I found a good GP and practice support.

I focus on the now and take baby steps. You are definitely not alone !! We are here. Keeping posting there are great people to help!! Good luck!! Chin up !! Don't try to run before you can walk

 

[Mike d]

@FrancescaN

Been to hell and back haven't you. Life takes turns and as often as they are full of joy or knowledge, many times they are not.

Keep fighting and as Pavlos said, one small step. I wish you well

 

[Resurgam]

Could visualisation help?
It is the process of spending a few minutes, several times a day in mentally imagining going through the process which concerns you or a failing to do. Visualise yourself doing what you are failing to do, and succeeding, and feeling good about it.
It is supposed to reverse the formation of a habit of failing to do whatever it is you aren't doing.

 

[FrancescaN]

Hello Wonderful People,
I'm so sorry for this late reply - I'm not very tech savvy (lol) and I don't know half of what my iPhone or iPad can do ( had a hilarious "argument" with SIRI a few days ago) but with practice on this forum e.g posting more & getting more involved in discussions etc, I should be more confident about how this forum works.
I would like to thank everyone who left a comment. I felt a warm glow ripple right through my body due to your kindness and warmth. It felt good to know that other people had felt the same at some time in their life about Diabetes. Also thank you for your encouragement. I really needed it.