Reaching out for some help, maybe someone else has been here?

[em2297csw]

So I’ve been diabetic for a good 15 years now (since I was ten). I don’t consciously not take my blood tests but over the years they’ve become less and less, I think mostly to my previous job (made it very difficult, constantly pulled in office questioned why taking more ‘breaks’ whe’ hypo, long 12 hours shifts would have to purposely be on higher side so didn’t go low) as well as this I do think I had some denial and burnout anyway.. I have very good sense of when I’m high or low and just take a shot of insulin or correct with sugar as I feel.. it’s terrible and no control I know! I’ve had a massive wake up call since starting my new job, my hba1c is 109, I’m ‘young’ but feel exhausted, my results also showing 5.2 protein in my urine. I feel like this is really it for me now if I don’t take control I’m going to always be this way and have awful complications.. has anyone else been here? Any tips how to get back into good habits?

Thank you x

Edited by Mod.

 

[Diakat]

Huge hug and loads of us have experienced similar things.
Can you start small by testing at least once a day?
Do you have a DSN? If so ask for support. If not, go to GP and ask for referral to hospital diabetes clinic. Tell them what you told us ask for help.
You can get back in control.

 

[LooperCat]

I have so been there, it’s a dark place. Is there any chance you could get yourself a Freestyle Libre? They may be willing to give you one on a trial basis, or you can self fund them. That was how I got out of the burnout hole - it was the constant finger pricking that was my big issue. The key is knowing what your levels actually are, so you can adjust them as necessary - but you know that. Most T1s suffer from burnout at some point, you’re really not alone. It’s a long, hard slog. But with support (and you’ll find loads of that here), you’ll find it easier to get on top of it again.

 

[ickihun]

What I had to do was resign from my job but before finally deciding I'd had enough I was very sick and exhausted so I took time of via Dr's sick note to try and give myself a new routine at home..... then a work one.
This worked off and on for years butooking back I was putting a sticky plaster on my problem.
Once I resigned Ironically I fell pregnant so took more time out to look after myself and my baby.
Once rehoused into a bigger home I did a night job, part-time (it made me more active which is great for type2s) and looked after my son and home during the way.
Living off 4hrs sleep a day so it couldn't last. I then returned to full-time work on my son starting nursery.

You know better than anyone if the job is too much whilst diabetes needs your help more.... Temporarily?
My GP helped me in the intrim of needing to change from work that was too much, whilst in bad diabetes burn out.

Have a chat with a good gp and I hope you give yourself the time to recement a new lifestyle of managing your diabetes.
Its much easier to think clearer when no work pressures.
As we all know not working because of bad controlled diabetes cannot be a permenant situation in this day and age.

I think you just need TIME to readjust.

 

[donnellysdogs]

One thing that strikes me is that you say you know when high or low and take action but those results arent showing that... so it really doesnt matter about what employers think, or what you think they think you need to ask about a libre or be adamant about doing bloods.

Yes, so many of us feel this way over testing and also what people may or may not be thinking. But, I cant emphasise enough that this is your health.. your body and yes, your responsibility to prioritise your well being first.

It is tough going, and others without T1 dont appreciate the care and ongoing trsting etc so its down to us and only us that can do it..

Please ask about a libre.. hospital nurses are the first point of call to ask.. get to them and explain your feelings and circumstances etc and ask. Unfortunately in many cases, if you dont ask, you dont get...

Xx

 

[porl69]

I think we have nearly all been there at 1 stage in our type 1 lives. I know I have. Never been a well controlled T1D until a few years ago when I had the shock of being diagnosed stage 4CKD! Now that is a wake up call. Steady progress with a dietitian who actually cares about my diabetes is a massive plus. Check my signature for my HBA1Cs. It can be sorted BUT needs to be sorted sooner rather than later before you start getting complications. GOOD LUCK

 

[Colin of Kent]

You absolutely can regain control. There is lots of help and advice available, on here and in your clinical team.

And don't forget, diabetes is recognised as a disability. I believe your employer has a legal duty to make reasonable allowances for that.

 

[slip]

Without making this thread a Libre fest, as that would have been my first shout for you.

But how about saying to yourself as you get up of a morning 'I AM going to do 8 blood tests TODAY' and stick to it, tomorrow you can go back to being the old you. Then perhaps later in the week you say it to yourself again.

Yes 8 tests a day! before a meal (Breakfast, Lunch and evening meal) and 2 hrs after and bed time +1 free to do any time! (obviously if you want to go mad you could do more!)

It's a start.

 

[Juicyj]

Hi @em2297csw Each moment is a fresh start, no time like the present to take control. Your previous employer was wrong to pull you up about your hypo events and running high as a result is something you can manage better, so it's good news you are with a new employer, however they have to make reasonable adjustments for you to manage your condition.

I know it's not easy when you're feeling exhausted, but sadly the running high BG business will make you feel worse, so the incentive to regain control is to help you mentally too, once you start seeing single numbers on the meter again your mind will be clearer and more focused and energised.

Take it one day at a time, start checking your BG levels and write down your results, insulin taken and carbs eaten, it's a diary/log but will help you identify what's happening and you can then start to see trends and patterns. Get on the phone to your DSN ask for help, support is here and there too, it can improve, the incentive has to be ultimately to help you feel better and in turn help you with your work.

 

[videoman]

I war diagnosed at the age of 14 in 1961, and I have never had any problems with me testing when I wanted to a test, all the people I worked with knew I had to visit the hospital and take insulin and test blood every day. The onkly thing that has got bettewr is the issue of glucose meters and I have always driven in my work

 

[donnellysdogs]

And dont forget if you drive you must test before and at least every two hours if doing long journeys... this is vitally important...

 

[PenguinMum]

I am T2 and cant be of much help but I am pondering your reluctance to finger test. I dont know if it's the inconvenience of doing it or the discomfort. If the latter try the Accuchek Fastclix pen which you can buy separate from a meter. It loads with a cartridge of 6 lancets which you dont even see, has very good settings is a very comfortable and easy way to prick your finger. It was recommended to me on this forum when I started.

 

[donnellysdogs]

I am T2 and cant be of much help but I am pondering your reluctance to finger test. I dont know if it's the inconvenience of doing it or the discomfort. If the latter try the Accuchek Fastclix pen which you can buy separate from a meter. It loads with a cartridge of 6 lancets which you dont even see, has very good settings is a very comfortable and easy way to prick your finger. It was recommended to me on this forum when I started.

Personally I feel its the qty of testings for T1's and "fitting in" with people that have no idea about the regimes that we shoukd follow.. not the actual finger tester itself.. although of course this is only my thoughts, not the OP's...

Testing is a constant and fitting in with life around testing, working, socials, hobbies etc can make persons less wanting to test and mire wanting to be accepted and not feel different etc etc...

 

[Belzedar]

Huge hug and loads of us have experienced similar things.
Can you start small by testing at least once a day?
Do you have a DSN? If so ask for support. If not, go to GP and ask for referral to hospital diabetes clinic. Tell them what you told us ask for help.
You can get back in control.

As I read these posts, I see it's not unusual for people to struggle with testing. So I wonder, could CGM be an option that might be available to them? I suppose that if the root of their aversion to testing is being confronted with the test results that suggestion doesn't help.

 

[AtkinsMo]

My immediate thought is that you should sign up for the new T1 Low Carb Support that is to be launched on Diabetes.co.uk. Watch some of the videos of Richard Bernstein, a shining light that came up with the approach that I believe will be followed, in his n=1 groundbreaking experiments, what? 50 years ago.

http://www.youtube.com/playlist?list=PLs_TA02I6IvV6-1s2pL4BPhvMo0Ck_lcY

There is another way to manage type 1 diabetes without the highs and lows, it’s controversial, it’s only followed by a minority, with lots of success, I might add, but if it was me it’s the route I would be taking.

https://en-gb.facebook.com/Type1Grit/

 

[Diakat]

As I read these posts, I see it's not unusual for people to struggle with testing. So I wonder, could CGM be an option that might be available to them? I suppose that if the root of their aversion to testing is being confronted with the test results that suggestion doesn't help.

CGMs are rarely funded. Some areas will find Libre if criteria are met. Otherwise it is self funding so if an individual cannot afford it or is struggling with the idea of monitoring the kit may be out of reach/unacceptable.

 

[kitedoc]

51years on insulin in OZ.
I can certainly tell when I am low. like below 3..3 mmol/l but I can never tell reliably whether I am 6 or 12 mmol/l.
I would be very cautious of assuming you really know what your BSLs are.
Finger prick/dextrometer or some other form of monitoring is the only reliable way.

 

[Alison54321]

Best solution would be Freestyle Libre, if you can get it. This link includes a map which shows which CCGs are funding them, by Diabetes UK.

https://www.diabetes.org.uk/get_involved/campaigning/flash-glucose-monitoring

If you can work out your CCG from that map you can also google their name, and freestyle libre, and that should get you information on their decision, just to check.

Then if you live in the right place work out the best plan for getting one, it usually requires a hospital consultant to recommend it. A lot of them insist that you already test several times a day, to qualify, so................you'd better start doing that then.

I can understand why you don't feel comfortable testing, at work, it's not easy. To make my life easier I found a giant handbag, that I used to hide my hands inside to do a fingerprick test. Which isn't an option for everyone.

But you need to assert your right to do it, both to yourself, and your work colleagues, though once you start doing that you'll probably find that it's more you telling you you can't do it than them.

Hope you have some luck with the freestyle libre, but if not then you're just going to have to test more, and start getting it down. The more you test the more you know the pattern for the day, and the more you can predict when you're most at risk of a hypo, and you can always eat something before it happens, if you're doing more testing, rather than having to disappear for a break, during it.