Maintaining remission/getting back on the wagon

HSSS said:

Oh god I hope I’m not still off the wagon and seeking answers on this thread in a few years lol

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Omg I hope your not toothe 2 year reference is where i might have the good ideas that you have already gone through and have helped so many peeps with x

@HSSS Try to think of it as having an occasional/minor dietary diversion? I find this is a better way to feel I have enough control to keep or get myself back on track than actually believing I've fallen off the blasted wagon which is careering off without me.

HSSS said:

Had my review today. On the plus side there wasn’t a mention of cholesterol/statins that I was expecting the usual battle over. That might be because she gave up on me before getting that far.

It started with me saying I understood the results and admitted I’d been struggling this last six month to a year, covid, steroids, injury, mood and as a result eaten more carbs and exercised less. She said I had good control (!) asked what I ate and suggested my insulin resistance might be getting worse. I explained I’d kept low 40’s for years on a keto/very low carb diet and now was eating more like the nhs recommended amount which was too much for me. She then suggested I eat sweet potatoes in place of white ones and have wholegrain bread and cereals. What part of I was keto for years so know what to eat and what part of the nhs recommended diet is too many carbs for me did she not understand, let alone the fact she obviously doesn’t understand carbs herself. If I follow her advice I’d be eating more carbs than I do now. She then tried to tell me as I was stable (!) I would have another review in a year. I pointed out that NICE guidance for hba1c is 6 months when stable and 3months if not. She wouldn’t have it but did agree to place an order for a 6mth hba1c as a result.

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Those tick boxes/'cheat sheets' many medical professionals dealing with diabetes work off have a lot to answer for!

In Aotearoa/NZ, medical professionals are asked to work 'in partnership' with the people with diabetes in their clinics and offices, by the university here that specialises in things diabetes (Otago University). In the nearly ten years I have met one medical professional who does! (My gem of a GP in the city.) All the rest work off that what I imagine is a tick box sheet, including weighing for BMI, paying inordinate attention to LDL cholesterol readings, promoting the low-fat too high carb way of eating for us, and, of course - going the medications route above it all. Which they were trained to do. And, still asked to do? If not by the Otago Uni experts. Head banging stuff indeed.

HSSS said:

For 4 yrs (immediately from diagnosis at 55mmol) I relatively simply maintained an HbA1c in the low 40’s by eating typically below 50g carbs a day. I don’t dislike the food or the way of eating. I lost around 15kg and for some time kept it off. But over the last year everything has slid in the wrong direction. Covid, hospitalisation and steroids definitely didn’t help but are not the sole cause of this. I’m back at square one.

I know what to do. I understand the science and the risks and can logically and intellectually understand it all. I know it works. I just don’t do it. I follow the plan (low carb) most of the time and then I self sabotage even whilst knowing I’m doing it, undoing the rest of the efforts. Originally the thought of medications and complications motivated me. Now that just isn’t working.

So for those that thought they had it sussed, only for that to bite them in the bum later, what motivated you to get back on track?

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I am in the same predicament as you. I have fallen of the wagon soo many times, and having to jump back on. It was so easy to begin with, with all the motivation when first diagnosed; If I lived on my own, I think it would be much easier.
I find it hard, as my family eat carb laden foods. I buy my own foods for just for me or try to. there is always bread, frozen chips, chicken nuggets breaded this, breaded that. My partner buys it all for what he and our son wants.
In work it is just as hard, as relatives and friends buy chocolate for staff as a thank you for looking after their beloved, which is so kind and generous. When Colleague's say having one won't kill you, or say you need to eat carbs. It becomes and upward struggle and it is easier to give in, than it is to resist.
I actually said at work, that I am trying to keep my feet and eyes.
I do hear what you're saying as I go into self destruct mode, especially if I am having difficulty in work or areas of my life and I say "sod it" and eat what I should not.

HSSS said:

Cos I know I don’t want the complications even though the thought isn’t sorting me out.

Yes it is practical strategies I seek. I do have faith in what I did before. Not sure I’m philosophising or self castigating. Just trying to find a way to get back to doing what I know works.

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I know exactly what you mean. I am in exact same position. So ironically, I give advise to people, which will help greatly, but I am struggling. We both know the results will be, if we are not careful, we know what we should consume to maintain healthy diet to keep our diabetes in control. It is staying on track, staying on the wagon, once jumped back on.

When people first try mindfulness meditation, they often get upset by how often they lose focus on their chosen object (e.g. breathing) and start daydreaming about lunch or wondering what's on the box that night. In response, my teacher often explains that recognising that you've lost focus and then choosing to place your concentration back again is the point of the practice. The aim is to build up the habit of remaining focussed, not to get upset about how unfocussed we are.
Perhaps, you could adapt this to your wagon hopping. Work on building up the habit of riding the wagon, notice when you fall off and then make the choice to get back on. Rejoice each time you make that choice, and don't feel guilty about succumbing to a lifetime of habit.

HSSS said:

Had my review today. On the plus side there wasn’t a mention of cholesterol/statins that I was expecting the usual battle over. That might be because she gave up on me before getting that far.

It started with me saying I understood the results and admitted I’d been struggling this last six month to a year, covid, steroids, injury, mood and as a result eaten more carbs and exercised less. She said I had good control (!) asked what I ate and suggested my insulin resistance might be getting worse. I explained I’d kept low 40’s for years on a keto/very low carb diet and now was eating more like the nhs recommended amount which was too much for me. She then suggested I eat sweet potatoes in place of white ones and have wholegrain bread and cereals. What part of I was keto for years so know what to eat and what part of the nhs recommended diet is too many carbs for me did she not understand, let alone the fact she obviously doesn’t understand carbs herself. If I follow her advice I’d be eating more carbs than I do now. She then tried to tell me as I was stable (!) I would have another review in a year. I pointed out that NICE guidance for hba1c is 6 months when stable and 3months if not. She wouldn’t have it but did agree to place an order for a 6mth hba1c as a result.

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Gah yeah, I kinda got that from the nurse I first saw along with "try not to bring your young child to the appt next time she's a bit distracting..." which I replied with "well what do you want me to do with her then?" which was met with a face that just looked liked I'd punched her in it. I suppose she thought I was just doing "daddy daycare" or something outmoded and outdated.

Moved the conversation on and told me it was okay to eat chocolate digestives, just don't eat the packet etc. I dunno if you'd tell an alcoholic to just have the one, but there we go.

Done some reading and thought sod them if that's the advice and help, and attitude that's there, I'll sort myself out. hb was "only" at 50 at the time but thought I'm not having this, went on a mad drive to reduce weight at the time 2016, which I did, by a dramatic amount. Got a bit cocky over time as felt tonnes better and food didn't seem to be affecting bg, stopped measuring, went into autopilot and put a bit of weight on, I started then avoiding appointments, tests, the scales etc.

putting on more, and more weight slowly over time

Had hba1c taken last year when went in for other unavoidable issues, and was told was prediabetic now! at "45" hba1c and that was a bit of a licence to go mental in my brain.

brain - "hello, I'm fatter now and eat more rubbish than I ever did but less diabetic? cool, go forth and eat all the **** you want, you know you want to..."

I "fell off" big time... got to point where weight started affecting and loads of other symptoms and got fed up with that, it took a while to be ready though... had to reckon with the brain and say actually, that thought you had there, that's only a thought, and thoughts are not me, "you" are wrong on this one, and are just trying to sabotage me my trying to keep me safe but it's having the opposite effect here... I'm sick and tired of this and the only way that's going to happen is make some changes. shut up, sod the food companies, the adverts, the supermarkets, sod the people who'd like me to stay this way, sod you all I'm going to look after myself now instead of everyone else coming first. (I have a rebellious streak so this seems to work for me as it did smoking years ago lol) plus I'm not going to be able to look after anyone else if I eat myself into an early grave.

I had to alter my relationship with the whole not just eating for nutrition thing.

I saw a doctor today to discuss some bloods I had taken in Feb, aside from the receptionist telling me it was about a bone profile and to book a non-urgent appt, it wasn't about bone profile at all. The doctor seemed pretty decent, said the low carb way ive been eating since Jan was great and was impressed how "better" I looked, all other bloods fine, but blood pressure was borderline and would like it to come down, and cholesterol on 10? or 10% risk in next 10 years or something (I'm not sure she knew entirely or mixed up some stats with results) and usually they offer medication when it hits that level but as I've made changes maybe that will come down without having to resort to that. Which I agreed would rather not take medication if was able by other means.

Saw that hba1c had crept up by 2 to 47 which she said was "stable" and like you the guidelines said to test again in a year, I suggested maybe we rerun the tests a bit sooner than that as it's still a rise and it was higher before, to my surprise she agreed but still in 6 months time, rather than 3.

I'm just hoping it was much higher before and dropped, rather than it's risen since I've gone low carb and that it was far higher in the months preceding it. that's why I'd like to monitor it.

Not sure of the point of my little ramble past catharsis and I suppose I relate to falling off the wagon and maybe the lost faith in those in settings but I guess despite bad experiences that isn't every one, and how I felt yesterday isn't how I have to feel today. it' so easy to feel negative about the whole thing, when we live in such a negative world/society to begin with, easy to forget to hope for better things and take actions based on those hopes.

pixie1 said:

I am in the same predicament as you. I have fallen of the wagon soo many times, and having to jump back on. It was so easy to begin with, with all the motivation when first diagnosed; If I lived on my own, I think it would be much easier.
I find it hard, as my family eat carb laden foods. I buy my own foods for just for me or try to. there is always bread, frozen chips, chicken nuggets breaded this, breaded that. My partner buys it all for what he and our son wants.
In work it is just as hard, as relatives and friends buy chocolate for staff as a thank you for looking after their beloved, which is so kind and generous. When Colleague's say having one won't kill you, or say you need to eat carbs. It becomes and upward struggle and it is easier to give in, than it is to resist.
I actually said at work, that I am trying to keep my feet and eyes.
I do hear what you're saying as I go into self destruct mode, especially if I am having difficulty in work or areas of my life and I say "sod it" and eat what I should not.

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YES, I find it easier to avoid temptation at the store, but there's always nonsense in the cupboards here. I have to say to myself "that isn't for me/mine" now and just move on. Def harder having it there and I did nibble on a Dorito a few days back, but realised wasn't missing much.

Other people also, at a family members house once and had "oh you have funny food now don't you?!"

yes, it's hilarious!

You could just see from the huffing and puffing histrionics that it would be a fuss not to give me a bowl of spaghetti like everyone else and just have the accompanying salad/meat/whatever wasn't pure stogde. lol

Can't control other people though, so I have to laugh and realise it isn't me.

HSSS said:

It just occurred to me that if any practice nurses are on this forum they could quite easily identify “challenging” patients such as myself. Oops. Hope todays nurse isn’t here and somehow I suspect not.

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Tis a free country - at the moment and includes free speech, again at the moment. I suspect they nose around unsuspectingly as I did before I became a member of this lovely group of people

Ha, I was told to avoid "those" (pesky?) forums by the first DN I saw.

HSSS said:

Had my review today. On the plus side there wasn’t a mention of cholesterol/statins that I was expecting the usual battle over. That might be because she gave up on me before getting that far.

It started with me saying I understood the results and admitted I’d been struggling this last six month to a year, covid, steroids, injury, mood and as a result eaten more carbs and exercised less. She said I had good control (!) asked what I ate and suggested my insulin resistance might be getting worse. I explained I’d kept low 40’s for years on a keto/very low carb diet and now was eating more like the nhs recommended amount which was too much for me. She then suggested I eat sweet potatoes in place of white ones and have wholegrain bread and cereals. What part of I was keto for years so know what to eat and what part of the nhs recommended diet is too many carbs for me did she not understand, let alone the fact she obviously doesn’t understand carbs herself. If I follow her advice I’d be eating more carbs than I do now. She then tried to tell me as I was stable (!) I would have another review in a year. I pointed out that NICE guidance for hba1c is 6 months when stable and 3months if not. She wouldn’t have it but did agree to place an order for a 6mth hba1c as a result.

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I haven't managed to read through all the thread (apologies) so hope I don't repeat things already mentioned multiple times.

NICE guidelines for HbA1c checks - I am long term (15 years) T2 and have been on annual review for a long while because I am regarded as having good control.
I was allocated a 3 monthly when I was obviously out of control (8.7%) but now I am "borderline" (7.2%) I think that I will have to push for another 3 monthly test to see if my numbers have improved with what I think is tighter control.

Understanding carbs - us old lags have had many years to learn this and it has been a full time occupation.
Many DSNs will be early in their career and just have the training.
The good ones have years of experience and know what the training courses don't tell them.
I have been fortunate to have several absolute crackers - though unfortunately in a lull at the moment.
GP is very good, thankfully.

Getting back on the wagon - I am something of an expert (!) having fallen off a good few times.
The positive part is that we know that we can do it, and realise that we can have short term(ish) issues which make it hard to keep on the straight and narrow.
I am back on the wagon at the moment, but mainly because I have found that I can tolerate a small baked potato which gives me a lot more scope for meals, and subdues most of the cravings.

One thing that helps motivate me is Libre 2.
I am very fortunate to be able to self fund, but seeing the results in near real time helps me to curb the temptations.
If I see a spike I can work out why it happened and be wary (or chastised).

So sending positive thoughts and good wishes.
Stick with it - something will drop into place and you will be back in the groove again.

I am not in Remission because I use medication with my diet. But just had my annual visit to the vampire. My HbA1c this time was 46, so not quite fallen off the wagon this year. so, 8 years of non diabetic levels, and my GP marks my record "satisfactory". I will see him next month for my review proper (legs out, shake em all about). My BMI has crept up to 22 but I'm not worried. LDL is high (4.7) and HDL is low (1.4) and GP has written "risen" so I expect to be back on the statin argument. He prescribes, I make up the dosette boxes, We both think we won. No statins.

Most of my other stats were in range, but my sodium is low and my potassium is high. I know this is a side effect of my BP med, but GP does not agree. But it is my heart consultant who prescribed it, and I see him tomorrow. Remains to be seen if I stay on it or take other pills to counteract the side effect.

May be getting a new toy - A pacemaker!!!!!. A go faster stripe for my heart. It may be one that has a built inb defribrillator to wake me up if my heart stops working.

Either way I will carry on as I have done and do not expect to change course at this stage of life.. Heres to the next HbA1c. May I have others like it.