I've just had enough

[terriellwood]

Hi all, new to the forum. I've never really looked to social media for support but I'm really struggling. It will be 16 years this year since my diagnosis. I'm getting to a point that my diabetes is just getting in the way of my life. I don't have time for my diabetes at work and when I do pay attention to it, it feels like a losing battle.
I've been on a pump for the last 10 years and since moving onto the new insight insulin pump last year I've had nothing but issues, to the point that I decided to go back into injections this week. My bloods are out of control and I just feel the insulin I'm putting in is doing nothing?! It's so frustrating. I'm on metformin in attempts to increase my insulin receptiveness but I notice no difference. My healthcare team haven't been the most forthcoming with ideas (when I'm able to make contact with them) and I just feel lost with it all and constantly have that 'bad diabetic' feeling.

Moan over anyway, I'd appreciate any tips or support. You think you're an expert after doing it for so long but I wake up every morning knowing my entire day is going to be out of my control because of my diabetes



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[himtoo]

Hi @terriellwood
welcome to the forum
just big hugs for you .

living with this sh!t disease 24 hours a day is not always a lot of fun.
going to tag a few younger peeps to come along and offer some support.

@1Sarah1 , @Mrsass , @Tanny35 , @MH2010 , @catapillar , @Juicyj

keep posting !!
you're not alone !!!!!!!!

 

[MH2010]

I have been diabetic 25yrs and still have days like that. Start a blog on here, it may help get the frustration out your system.

I cant help with the pump side of things as I freak out even thinking about them ( I break EVERYTHING I touch) but I would say to try & book an apt with dsn, even just if its to rant at so.eone (I do that a LOT)

Sending you a virtual hug.

Your kitty is gorgeous. Xx

 

[dex44lego9]

Dex44lego99 Hi i have been diabetic for 30 years and still feel diabetics has taken over my life.My nickname should be luvozade. I hate it.

 

[tim2000s]

Hi @terriellwood, it sounds as though you're suffering from what's commonly known as burnout and diabetes distress. These are both recognised psychological conditions that affect most diabetics throughout their life.

As I'm on a phone, I can't post the links, but will do so later, but there are loads of things you can do to take back control. Start with small steps and little targets, then build up from there.

But always remember you are the most important factor, so you have to put you and treating your Diabetes first.


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[catapillar]

You're not a bad diabetic! It's really hard and it does grind you down. But if it is making you feel out of control/overwhelmed/or just plain rough from uncontrolled blood sugar then I would agree that you need to think about small, achievable goals to help you improve things.

I'm sure there will be loads of suggestions on things that you could consider to improve you control (basal testing, improving your diet etc etc) and while they will all be good useful thing to think about, don't feel like you have to do all of them at once. Small changes can make a big difference to your control and help you set good foundations for further improvements.

I'm the kind of person who will put "write to do list" at the top of my to do list, just so I've got something to cross off! So try something like this week I will test at least twice a day every day, or next week I will figure out a way to test before lunch in work. Set reminders on your phone, or pre programme emails to send yourself at set times at work. Don't judge yourself for the numbers that come up on the test - I'm not sure there is a good or a bad number (certainly not helpful to think of them that way) just a number that you either need to do something about (inject some insulin/ eat some carbs) and figure out how you got there, or not. It's only a number you can learn from.

& if you set your goals & are struggling to achieve them, ask on here. There is bound to be someone who has been through similar with an idea of how to get there. And there will always be someone with support.

 

[Juicyj]

Hey @terriellwood sorry to hear you are feeling this way, don't put yourself down though, it sounds like you are doing the best you can with the tools you've got. What is your support like from your team, can you call or email when you get stuck ? If it's any consolation I am on a pump but only since Jan and am going through a patch of high bg levels and its reminded me how lousy it can make you feel, so please blame the levels you are running at and not you. It is also easy to switch to MDI when it's not going right, but it doesn't sound like you've got your settings right yet, can you hold fire and try some basal testing ? If you get these levels right everything else will be a lot easier.

Don't despair we feel your pain, when it's going right all is well with the world so please just hang in there and see if you can check your basal patterns first and hopefully you will start to reign your control back in, stay positive

 

[terriellwood]

I've just got in from the lousiest day and thought, 'oh I'll just check back on my post, I doubt anyone will have seen it...'
I'm just blown away by all your support. Thank you for your positive comments and I really appreciate my virtual hugs!
Thank you for tagging some helpful people.

It's reassuring to know I'm not the only one. I do know that but it feels like it sometimes.
My team have recommended I go for counselling, which I have agreed to before i totally write it off, but other than that I don't feel they are helping me practically. With the pump it's issues with my cannulas and just generally having the thing attached to me. I've had it off for 3 days now and I feel like a free woman! But my bloods have been paying for it. I'm just hoping they'll settle down eventually.
You're right in saying it's easier to make little changes, I think I'm just so fed up that I want instant results when I'm trying really hard to be good and it just feels like everything I try just doesn't pay off. Maybe I need a dose of patience with my insulin. Do they sell that in vials?!

But seriously, thank you. It means a lot that you have taken time out to give advice. I feel very welcomed

I also like the blog idea. Maybe I just need to get some of these thoughts out of my head!

 

[azure]

@terriellwood I note you said you'd had "nothing but issues" since going on the Insight pump. I had that pump and hated it. Luckily my team replaced it with a different model and I haven't looked back since. I don't know how you were before the Insight, but it may be worth exploring the possibility of a change of pump.

I don't know how you'd feel about that as you've said you didn't like being attached to it, but perhaps part of that was because it was giving you grief. I love my pump and I hardly notice it. But this could be because it allows me to get on with my life and I'm not having to fuss with it constantly.

Just a thought

 

[terriellwood]

I tried this! It was my first thought. I used to be on the Medtronic paradigm and had very few issues. In comparison anyway. Because my pump is funded by the hospital, they won't be able to replace it unless they reapply to the 'pump panel' for more funding. Which they are reluctant to do but that would be the next option. They were going to put me on a Medtronic which someone returned as they didn't like it but this is taking way too long due to warranty issues.

You're correct in saying it's because it's not working for me. I've been happily pumping away for nearly 10 years. But this last year has been so tough since changing. The cannulas don't suit me. The pump has been replaced twice. And the handset! It's like a throwback to the first computer! Slow and bulky. It got to the point I stopped using it for all it was worth.

Maybe I need some time away from the pump to appreciate it again?

Breakthrough tonight though. I had my first single digit blood sugar since going back on the pens.

 

[Ryan777]

Hi teriellwood Have your healthcare team helped you with Carbohydrate counting or suggested a expert insulin course as my levels were all over the place and this actually helped me out when I was put on it.

 

[Jane Milburn]

Hiya, It might help to look at the dose of your basal insulin or change it. I've found I have better control now that my basal has been changed. I now use Degludec.
Stress will cause problems with control so I think it is a good idea to have counselling.
It's vicious circle and maybe if you can de-stress (talking, yoga, having fun, hugging a tree!) your control may get better.
Carb counting is boring but needed. This book is simple to use, worth a try. Carbs & Cals. It's also available as an app.
Sending you loads of positive vibes

 

[terriellwood]

I remember doing The DAFNE course but this would have been c. 2005! Maybe revisiting this would be a good idea.
Catch me on a good day and I'd probably be up for it
Carb counting basics just come naturally to me for doing it so many years but I know you can get complacent.

What is this magical Defludec? I just googled it. I approached my team last time I had this 'mid life pump crisis' and they told me that novo and levemir would be best for me?

I'm trying to destress so thank you for your tips! I started Zumba last week but find that just tired me out rather than relaxes.

Neighbour may have just woken me up with a grinder on a Saturday morning... he isn't helping!







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[Lyn Holloway]

Hiya, It might help to look at the dose of your basal insulin or change it. I've found I have better control now that my basal has been changed. I now use Degludec.
Stress will cause problems with control so I think it is a good idea to have counselling.
It's vicious circle and maybe if you can de-stress (talking, yoga, having fun, hugging a tree!) your control may get better.
Carb counting is boring but needed. This book is simple to use, worth a try. Carbs & Cals. It's also available as an app.
Sending you loads of positive vibes

Is Carbs and Cals available on the iPad I can't find it?

 

[catapillar]

If you change the setting in the App Store from iPad only to iPhone only (drop down list top left hand corner of the search results page) it will find carbs and cals as a phone app - you can down load phone apps to your iPad and they work perfectly fine on the iPad, just bigger

 

[Jane Milburn]

I remember doing The DAFNE course but this would have been c. 2005! Maybe revisiting this would be a good idea.
Catch me on a good day and I'd probably be up for it
Carb counting basics just come naturally to me for doing it so many years but I know you can get complacent.

What is this magical Defludec? I just googled it. I approached my team last time I had this 'mid life pump crisis' and they told me that novo and levemir would be best for me?

I'm trying to destress so thank you for your tips! I started Zumba last week but find that just tired me out rather than relaxes.

Neighbour may have just woken me up with a grinder on a Saturday morning... he isn't helping!







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Hi again, because Degludec lasts in your system longer than any other basal insulin it makes blood sugar levels more stable for longer. Health teams are reluctant to let people have it as it's more expensive (again it seems the health teams are more concerned about money than our health!!).

Research it as much as you can and if you decide you want to try it be assertive with your health team, literally tell them your life feels a mess and you want more stable control and know from research Degludec may help, then they hopefully will let you try it. I'm not saying it's a magical cure, it worked for me but may not work for you but when you feel as you do, anything is worth a try.

I've been diabetic type 1 for 48 years and have only recently realised that having the right long acting insulin and dose is so important for stability of blood sugar levels.

Maybe try Tai Chi ,Yoga or swimming for a more relaxing form of exercise. They also help calm the brain and not wear you out.

I may be wrong but it seems you are suffering from anxiety. Others may strongly argue the point but a small dose of antidepressant/anti-anxiety pill may help. If you want to go down this route, speak to your GP. I am only suggesting this as it worked for me and may not be the answer for you. Just a suggestion.

Doing another DAFNE course may help just as a refresher and more importantly I feel, to meet other diabetics who will share experiences which can be helpful.

I do hope you can enjoy the rest of your weekend and send even more positive vibes and love.

 

[iHs]

Weightgain causing insulin resistance will make controlling bg levels fairly hard even with metformin. It becomes a vicious circle until less food is eaten or lots of exercise is done which will slowly result in lower bg levels and then less insulin. Someone on the forum wants to change from the Medtronic to another pump and possibly the Insight.

 

[terriellwood]

This is all really interesting to hear. It's helping me realise actually how much I'm doing. Im trying so hard.

Metformin
Antidepressant
Moving and eating better (I've actually started a calorie controlled diet, lost 5 pounds in 3 weeks!)
Fasting blood sugars
Night blood sugars
My bloods are consistent.... Consistently high

Trying to be assertive with my health care team but I just don't get much back

My new goal is to get a dafne course booked and start being nicer to myself in general. It's just hard to be nice to anyone waking up at 20.0

I am feeling better since getting myself in this forum though so thank you all X








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[terriellwood]

And in response to changing to an insight. DONT DO IT! (In my humble opinion )


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[charlie_farley]

I know that feeling so well .After 11 years with T2 and at the age of 66 I found my meds just kept going up and up as did my BG numbers. On a daily dose of 4 Gliclazide 2 Metformin 1 Statan 1 Lisnaprill and 1 Contaflo with BGs of 9s and 11s.I discussed it with my GP and told him I was so P.....d of with the whole **** thing I was giving up all the drugs and asked his advice on Diet as I had never been given any worthwhile advice on this .When he got over the shock he said ok we will support you now try to kick start with this "Lose a Stone in a Week" diet which he then downloaded from the net.
I give up all meds tried the diet and lost 13lbs in 6 days and started doing BGs of 5s
Then went on a low carb diet with great help and advice from this forum.
My BGs now average 5.9 my blood pressure is good and I feel great.
I now feel I control Diabetes it doesn't control me .I just wish I had taken these steps years ago.
Don't do this without talking to your GP.
What ever you choose to do I hope you start feeling more positive soon.