No control/ No motivation: Help

[Aurora46]

Hi there,
So I've been in a pretty terrible place over the last few years, despite having had T1DM for 13years now, and I hope that joining this forum might be the start of getting back on track.

I do enough diabetes management to get by with living and I mean living in its simplest form i.e. I take my basal insulin and if I can remember to take my bolus then that's me excelling at diabetes... (mmm exactly). My measuring is sporadic. I might measure for a few days perfectly. Pre-meal & 2hrs post meal because I'll be on a brief "sort-your-life-out" mission. Then if I get some really rubbish readings, I become really disheartened and stop.

I've been trying to get a pump for the last 5years. During that time I've seen GPs, Endocrine Professors and numerous nurses saying a pump would be a really good thing for me, why am I not on a pump already? etc etc. 5years ago my bloods were reasonable. Not great but suitable for nhs pump consideration. With each appointment that goes past I see the pump moving further and further away from me. This also really makes my motivation plummet. Currently there's no chance for pump consideration because I don't measure enough. Which sends me into feeling even worse. Another thing I find hard is that I work in healthcare and I feel like a fraud because I know all the complications and I've seen people with the complications. I can help others but I can't find the 'get up and go' to help myself.

My partner split up with me at the beginning of this year and said my approach to my diabetes was a big factor in the breakup. This was at a point where my control was actually on the up. HbA1c was the lowest it's been in years! Although it was still a pretty horrible number, I was measuring and I felt like it was the turning point and that I could keep this downwards trend going on. I felt like this was a person I could actually talk to about my diabetes. Since the break up it's left me feeling alone, feeling even worse about my diabetes and I ended up a few months ago in A&E resus with DKA.

Can anyone help please? Wise words, motivational tips, strategies to get some measuring/ injecting stability back, ...honestly anything will help.
I hate that I've let diabetes control me, to the point that the only way I can feel I have control is by ignoring it completely. I can't go on switching from accepting my diabetes for a few days to ignoring it for a few weeks, and overall making me feel like I lead a really really miserable life. Help.

 

[Pasha]

There is an old saying that all farmers know of "you reap what you sow". Seems to me that you should try and internalise this message. You have your National Health Services to help you, the rest is up to you., its your choice.

I suggest that you draw a line and make a new start doing all the things you know that you need to do. Day by day you will see progress and establish new habits ie good habits as you take responsibility for your health. All the rest is details and you will get plenty of good help from a lot of experienced people here.

So go to your doctor, learn exactly what your schedule is supposed to be and follow it to the letter. Read as much as you can and ask plenty of questions. ie take responsibility for you own good health, nobody else can or will ,its that simple.

I wish you all the best for making the necessary changes and of enjoying their benefits.

 

[Mike d]

I'm hardly in a position to comment on your condition, but one of the issues (at least to me) is obvious. You have 2 concerns, specifically your condition and regrettably, the split with your partner.

You can overcome one of those and put it behind you (tough though it always is), the other (at the expense of your health) you cannot.

The motivation needs to come from within. Pasha's right ... deal with the matter under your control and manage it. You're obviously feeling a little lost and trust me, I get it. But correcting THAT issue is paramount to your overall outlook on life so please apply yourself.

I admire your courage and your honesty in posting your message (and I don't give out credits too often, me being a hard nosed individual for most of my life) so from where I sit, you have confronted the problem .... now's the time to get stuck into it.

Take care

Mike

 

[jack412]

sounds like burn-out
http://www.diabetesexplained.com/diabetic-burnout.html







"" I might measure for a few days perfectly
"sort-your-life-out" mission
if I get some really rubbish readings, I become really disheartened and stop.
break-up over 'diabetes', feeling alone, feeling even worse about my diabetes """

I would ask for some counseling about it, there is always a diabetic help line to ring.
My thoughts are.... it's not pass or fail, the numbers on the meter help adjust the insulin, no more, no less.
you can't hang your self esteem 10 times a day on a meter reading, low you feel good, high you feel bad. it will end in tears.
you would be 'happy' if it wasn't for diabetes, you may hate it, but punishing the diabetes, you are hurting yourself

@noblehead has a good basal test for pumps, I've tagged him, so he should be along to post it

 

[pavlosn]

I think that you have already taken the first and most important step towards regaining control by acknowledging and confronting the issue you face through actually putting it down in writing and reaching out for help.

Not wanting to face unpalatable truths and preferring the false comfort of ignoring problems is something that we have all been guilty of at some point or other. You are not alone there.

As you know though we may try to ignore our diabetes but unfortunately it will not ignore or leave us alone.

I think your main issue is a mental one. You are mistaking any out of range counts on your glucose meter for some kind of failure report. You are a health professional so you think you should be able to do better and find it difficult to accept when you don't. Glucose meter counts whether in range or out of range are nothing more than feedback. Viewed in this way an out of range count is probably just as valuable as an in range one, if not more, as it tells you that you possibly need to take some adjusting action. It does not report any kind of character shortfalls on your behalf.

I believe you need to approach your health in the same systematic manner as if you were treating another patient in your care.

Consider using technology to assist you. There are many diabetes apps on smartphones that you could use to keep a systematic record of your diet, your carbs, your medication etc. you can even set them up to give you reminders to take medication.

Make sure that taking the medication is easy and practical by making sure that you always have access to it.

I found that just by using this forum does wonders for my ability to maintain focus on the task of keeping your diabetes in control. I am sure that as a nurse you could offer valuable input and advise to others and in helping them help yourself.

I found that keeping an online diary in a thread on this forum. A place to record my feelings about and experience with diabetes also helped me greatly to work through issues. Consider doing something similar.

You need to try and take the emotional aspect out of your treatment and be as professionally detached in looking after yourself as you no doubt are in treating others under your care.

I wish you the best and look forward to hearing about your progress.

Pavlos

 

[himtoo]

Hi Aurora46

reading your post i really felt for you - it isn't an easy ride on the Diabetes Bus !!

one thing i would suggest is reading the "The 5 stages of Grief" ( link below) as that is instrumental in understanding your emotions and that you are not alone.
Being Diabetic means that these stages are revisited many times over and knowing this helps to get to stage 5 quicker and keep yourself on track.
good luck and do keep us posted on how you are progressing

http://www.drchristinahibbert.com/dealing-with-grief/5-stages-of-grief/

 

[noblehead]

Unfortunately you do have to be motivated before being considered for a pump, so if your not testing your bg regularly and not attempting to control your diabetes on MDI then the chances of getting a pump are very slim.

They normally insist that before going on a pump that the person has completed a carb counting course such as DAFNE, so if you've not done such a course before then ask your DSN to put your name down for the next available place, on the course you learn to adjust your insulin doses to the food you eat as well as other aspects of managing type 1 diabetes, as your in a group of around 6-9 people it's a great motivator to get you taking your diabetes seriously as everyone else in the room has been through the same experiences as yourself.

If you want an idea what a carb counting course entails, have a look at the following which is an on-line version of the DAFNE course:

http://www.bdec-e-learning.com/

 

[Auckland Canary]

As usual some great points from the board.

To add to this I think it is important to maybe start with some baby steps. Starting from tomorrow just aim to get 1 thing done as you should, for example ensure that you test your blood 4 times a day every day for a week and log the results. Don't even bother what the readings are just do the tests and ensure you don't forget or don't bother by setting an alarm or such like.

Then next week continue this but add to it some investigation into some Apps that may help you out as Pavlosn suggested as well as keeping up with the tests.

Then next week start to do ensure that you bolus for every meal etc.

This way you can focus on the things that need to be done every day and after a few months you will realise that this has actually become a lifestyle and to not inject or test your blood will then feel strange.

Also ensure that when things do go wrong you don't lose heart. This is probably the hardest one to take on board but I can assure you even the best controlled T1 has had these issues. We ALL get them. You just have to put them in the "bad day" bin and move on. Obviously if the same issues are continually cropping up you can probably get help from your DSN etc. But if they are just one offs...forget about them.

Really wish you well going forward for this and there are always people here to help. I don't like New Years resolutions but maybe write down now what you are doing now and aim to set yourself some achievable goals for 6 months time. Review them and then set yourself some more. Then look back this time next year and give yourself a massive f.....g pat on the back when you realise what YOU have achieved in the last year

 

[lely]

M I too have had badly controlled diabetes for 7 years since diagnosis, thinking I could do it all on my own with the back up of family and friends.
Unfortunately unless you are diabetic yourself it's hard for others to understand all that comes with it, no matter how close they are.
Example my hubby bless him, very supportive in the whole, how's you day been,
However I've recently done the carb counting and have gone back to basics. Reducing my daily intake of carbs, monitoring everything I eat and making taking my BG's habit.( which on way home from the carb count course the hubby texted me to tell me he's gonna do me steak for tea, bring home a bag of chips to go with it ).
Anyway. First two weeks I was disheartened as I didn't seem to be making any difference week 3 and 4. Wow. BG's have been super. No more peaks and troughs. A more steady range with great morning readings.
And it was about 3 months after I regularly started using this forum and reading everyone else's successs.
Be good to yourself and go see your doc/DSN and make that change for yourself.

 

[SuperSoph]

Hi, I agree with all the advice given to you. I have had diabetes for 22 years now and have gone through a long period (since becoming a teenager) of struggling with my control, motivation, success rates etc etc!

I think the advice to ask to go on a carbohydrate counting course is great as this gave me a whole new aspect to focus on and I really enjoyed it. It became a habit/routine to do a blood test, carb count, give insulin and eat. As I couldn't correctly dose without having a blood glucose reading it helped me to see how much they were all linked and how important they all are.

Also I realised after many years of feeling rubbish that if I don't look after myself its me and my own health that suffers-nobody else and on the flip side when I do get a good result its because of my amazing skills at carb counting!!

I still struggle a lot with diabetes and am in a cycle of improving then having to give myself another pep talk so I know exactly how you feel. I hope all this advice helps and please keep us updated

 

[nigelho]

Hi, I agree with all the advice given to you. I have had diabetes for 22 years now and have gone through a long period (since becoming a teenager) of struggling with my control, motivation, success rates etc etc!

I think the advice to ask to go on a carbohydrate counting course is great as this gave me a whole new aspect to focus on and I really enjoyed it. It became a habit/routine to do a blood test, carb count, give insulin and eat. As I couldn't correctly dose without having a blood glucose reading it helped me to see how much they were all linked and how important they all are.

Also I realised after many years of feeling rubbish that if I don't look after myself its me and my own health that suffers-nobody else and on the flip side when I do get a good result its because of my amazing skills at carb counting!!

I still struggle a lot with diabetes and am in a cycle of improving then having to give myself another pep talk so I know exactly how you feel. I hope all this advice helps and please keep us updated

Hi Aurora, I'm glad that you're posted your story and want to get yourself sorted. My suggestion is to ask your DSN or GP to put your name forward for a DAFNE course. I did the course at Addenbrookes in Sept 2013 and it's done wonders for my diabetes management and self confidence. They will also look at your insulins to make sure that they're working for you. You don't need to do 2 hour testing as DAFNE will advise..I test after 4 hours unless I feel unwell. I've always carb counted with my meals.

 

[Flowerpot]

Hi Aurora46

Great advice and suggestions so far. It is so difficult when you are struggling with control and motivation. I'm pretty sure every one coping with diabetes goes through a similar thing to some extent, at some point.

Definitely request a carb counting course if you haven't been on one. Start with baby steps testing regularly and reacting to the test results. Don't ignore results if they aren't in range, make sure you know what correction boluses to give and hopefully once you have your carb:insulin ratios correct your control will become more predictable and stable.

See potentially getting a pump as a motivation, you may find that life on MDI gets a lot better once you start getting improved control. Either way using a pump requires motivation by the bucket load , it's there 24 hours a day so you tend to think a lot more about what you are doing. Getting organised with testing and insulin doses will only be beneficial for whichever method of treatment you use.

Getting started is the biggest hurdle. Once you start to be methodical you will start to see better results. Go back to basics and record everything that affects control- carbs, insulin, blood glucose results, exercise, illness. Improving my control was like a snowball gathering pace. At first I couldn't be bothered, didn't think I could make a difference but quite soon I found myself really caring what was happening and putting my best effort into looking after myself. It does take a big push to get going but it's very worth investing the time and energy. I wish you well. Good luck

 

[Robinredbreast]

Hi there,
So I've been in a pretty terrible place over the last few years, despite having had T1DM for 13years now, and I hope that joining this forum might be the start of getting back on track.

I do enough diabetes management to get by with living and I mean living in its simplest form i.e. I take my basal insulin and if I can remember to take my bolus then that's me excelling at diabetes... (mmm exactly). My measuring is sporadic. I might measure for a few days perfectly. Pre-meal & 2hrs post meal because I'll be on a brief "sort-your-life-out" mission. Then if I get some really rubbish readings, I become really disheartened and stop.

I've been trying to get a pump for the last 5years. During that time I've seen GPs, Endocrine Professors and numerous nurses saying a pump would be a really good thing for me, why am I not on a pump already? etc etc. 5years ago my bloods were reasonable. Not great but suitable for nhs pump consideration. With each appointment that goes past I see the pump moving further and further away from me. This also really makes my motivation plummet. Currently there's no chance for pump consideration because I don't measure enough. Which sends me into feeling even worse. Another thing I find hard is that I work in healthcare and I feel like a fraud because I know all the complications and I've seen people with the complications. I can help others but I can't find the 'get up and go' to help myself.

My partner split up with me at the beginning of this year and said my approach to my diabetes was a big factor in the breakup. This was at a point where my control was actually on the up. HbA1c was the lowest it's been in years! Although it was still a pretty horrible number, I was measuring and I felt like it was the turning point and that I could keep this downwards trend going on. I felt like this was a person I could actually talk to about my diabetes. Since the break up it's left me feeling alone, feeling even worse about my diabetes and I ended up a few months ago in A&E resus with DKA.

Can anyone help please? Wise words, motivational tips, strategies to get some measuring/ injecting stability back, ...honestly anything will help.
I hate that I've let diabetes control me, to the point that the only way I can feel I have control is by ignoring it completely. I can't go on switching from accepting my diabetes for a few days to ignoring it for a few weeks, and overall making me feel like I lead a really really miserable life. Help.

Hello and welcome Auroa

Well done for facing up to having type 1 diabetes and trying to get better control and management. It's a life long chronic condition that can't be pushed aside when you cant be bothered with it.
I think a lot of type 1's have been through similar feelings at some point.
It's all done to you and with some self worth, motivation and will power, you will be able to persevere and keep on top of it and you will feel pretty good with your self
I wish you all the best and good luck, if you have any questions or just want to have a moan, just go ahead, someone is usually about to help, they're a great bunch on here

" No one can go back and make a bran new start. Anyone can start from now and make a brand new ending"

Take good care, with best wishes RRB

 

[Trina_P]

Hi Aurora,

I don't want to repeat what everyone else has said, but they're all right. The only way you can take control is by finding self-motivation. You've got to forget about any mistakes and forgive yourself for it. Start afresh tomorrow and use the knowledge you've gained from bad control to help you achieve good control again. As far as getting a pump is concerned, it is beyond your control on whether or not you receive one, so although you should keep trying to get one, don't let this rule your attitude to getting a hold by using insulin pens.

I was only diagnosed July this year, after having every symptom in the book. I was gutted, scared, and quite frankly pi***d off about it, but there is nothing anyone can do to change it, and no amount of crying, swearing, or ignoring is going to sort out my pancreas. After fumbling my way through the first couple of months, I found a few little ways to help me cope with having Type 1 Diabetes, and also make my life run as smoothly as possible so that blood-glucose testing and injecting before meals didn't disrupt the normal flow of my life.

You need to find out how much basal insulin you should be taking. When you do, set alarms on your phone or watch for when you need to take these injections. My phone is set to go off at 8am and 8pm every day just to prompt me, because even if you have a routine you can easily lose track of time.

Test religiously before meals and before bed. 4 times a day is easy enough to remember when you get into a habit and don't feel weird about doing it in public, without testing you have no idea how much bolus insulin you should be taking with food.

Write down the time and number of each blood-glucose reading, and make any notes of things that could have made a result higher or lower than normal. For example, after my flu jab mine was higher for the rest of the day. After a week you can get an idea of how you're doing, and by making notes you can figure out patterns.

Keep everything together in a bag. I bought myself a pretty cosmetic bag (to cheer myself up after diagnosis) and use it to keep my insulin pens, testing machine, notepad (for results), needles, needle clipper, and hypo treatments all in one place so that if I'm in a rush I won't forget anything. Also keep twice as many needles as you think you'll need in case you stay somewhere longer than intended or if one fails.

Count your carbs. I'm waiting to go on a DAFNE course as my pancreas is still clinging on for dear life, so in the meantime I've downloaded the My Fitness Pal app which doesn't have listings for everything, but it has quite a lot of different brands on there. The app itself is mainly focused on calorie counting and losing weight, but if you set it up and just use it to search for foods, it gives you access to carbohydrate content to loads of different foods which makes calculating how much bolus insulin you need to take. I was advised by a DSN that for each 10g of carbohydrate I should take 1 unit of insulin. Personally though I'd take a little less at first just to make sure you don't go hypo. For example, if something has 50g of carbs, maybe take 4 units to see what effect it has on your levels.

Also, if you're a creature of habit, eating the same breakfast each day can help to get your day off to good start. I eat porridge every morning with raisins and apricots in. I weigh out my oats (50g) then measure the rest out by dessert spoon making sure it's the same every day. I know if I take 6 units with this by lunchtime my levels will be more or less spot on.

By taking these steps it can help you see your progress and will keep your spirits up. And if you make a mistake, learn from it. Make "No experience is bad experience" your mantra and you'll go far. If you have a really bad day, figure out why and how you can ensure it won't happen again.

I promise you that getting control of this beast will make you feel empowered and the better your control, the more it will encourage you to keep it that way. Not to mention how much better you'll feel physically!

I hope these tips have helped and even if only one enables you to get a grip on this a bit better, it's been worthwhile .

Keep at it, we're all in this for the long haul!

Katrina

 

[karcon]

Been there! I found the best thing I did was to start to record my tests, got in touch with Diabetic team made one appointment and then a follow up one 1 month later this went on for a few mths and was a great help (was more motivated when I knew I was going to see someone to talk about my Diabetes).

Also found I was taking too much insulin a lot of the time which was causing lows (often undetected by me) and then highs and then lows again trying to get back within normal range fast. Slow and steady wins the race. You are not alone!

I wish you all the best

Karen

 

[Trina_P]

I also just wanted to add, the fear of the complications should only be part of your motivation. Negative thoughts very rarely work at keeping you focused for too long because it then starts to bring you down. You need to want to do it for good reasons.

Ok, your partner left you. That doesn't mean that because they gave up on you that you're not worth a happy, fulfilling, and long life. You need to want to control your diabetes because you deserve to be healthy and happy. And listen to me, you deserve it. Your life is literally in your hands, so treat it with the care and respect it needs.

Any time you need someone to talk, vent, or brag to (about getting those HBA1C results down) then drop me a line.

 

[donnellysdogs]

@Trina_P

Your posting about "deserving" etc was excellent advice, as this is actually what I was told by a brilliant counsellor ref the impact that diabetes had had on me since diagnosis 30 years ago...and something I was thinking very pertinent to the OP.

I was told that "you deserve better" not about my life but about that I never actually valued my life and worth since diagnosis.

I was told I would die earlier and get complications when diagnosed. These statements impacted hugely and negatively.

Now, in relation to OP I think it's important to think that "I deserve better".. In all sorts of ways....

I deserve better, so I'm going to go out and get it
I deserve better, and feeling sorry for myself isn't going to change anything
I deserve better, so I'm going to prove people wrong
I deserve better, so I'm also going to help others to realise they can too

Everything about our life's we can make a difference by adding in I deserve better (because) (so) (and) etc....

Its a nicer feing than people saying "pull ur socks up" or "I can't" or "I want" etc....

Something about the word "deserve" is a way to positively change our behaviours if used in a positive manner...

Thankyou for reminding me of this and I hope the OP realises that she deserves more and will get gain worth and well being from it...

 

[Lynn_L]

Hi Aurora,

Welcome to the forum. I am a new member here too but with the many kind peoples who are so supportive, you will get all the advise and support you required.

Dealing with Diabetics is no easy task, there will be definitely ups and downs. Ask anyone with any type or any durations, they are bound to have their downs at one time of their dealing with it. However, you should never never allow it to control your life. Ignoring it will make your BS go higher and in turn causes you to lose grip and become depressed. Do get hold of yourself and get into control.

I agreed with Trina, you deserve to be healthy and happy.

Cheers!