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Learning to live with it...frustration included!

Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.

JimG92

New Member
Relationship to Diabetes
Type 2
Hi everyone,
A bit of an update - even though I'm still very much in the "newly diagnosed" category - thanks so much again for all the kind words from everyone when I announced myself in the "Newbies" thread. I've now had the second visit to the nurse, roughly a month after the initial diagnosis and to be honest, I don't feel that much further forward with them... In fairness though, the COVID 19 fallout has a lot to do with the amount of support that most GP's can offer to anyone these days.
In that meeting, she still wouldn't tell me what my blood sugar reading was (or indeed what it should be) that led to my original diagnosis, instead saying that it was just a bit high (despite me asking directly a number of times), My BP was OK but still a bit higher than they would like and she only appeared to want to talk about a low fat diet (one example, "if you like cheese, then a couple of slivers on a cracker once a month should be ok..." 😱) and to then ask me if I wanted to start on a course of statins in January (is there something up with my cholesterol levels then? Why January? I asked - no clear answer was forthcoming - see the doctor in January...).
When I was weighed, she said I had lost 900 grams in the entire month following diagnosis which was surprising (and really disappointing) as I had made a real effort eating-wise and my family/friends had all been commenting on how much I appeared to lose. This was bolstered by the fact that I was now getting into shirts and trousers that I hadn't been able to get into for years. When I challenged this small weight loss, she then said, "Oh, I think those might not be the same scales that you stood on the last time you were here and they've since had new batteries and need calibrated, and, etc.... o_O". When I got home feeling very deflated, my wife didn't believe it and everyone says that I've definitely look like I've lost more.
Incidentally, to get around this, we bought some new scales for ourselves last week and now use them once a week (Sunday morning) on the stone floor in the conservatory and in the last week, I've managed to lose 2.1Kg and my better half lost 1.5Kg. I know I'm still very heavy but it's nice to know that I'm heading in the right direction. My blood pressure on Sunday was 132/82 at 74bpm which I believe is OK too.
Although not Diabetic, my wife Ali is supporting me by following the same eating regime as me more or less and it seems to be helping her lose a bit as well.

It's mainly massive thanks due to everyone on here (especially and firstly with the available information food wise) and the site content that I'm seeing, more than anything offered by the GP surgery, that I seem to be moving in the right direction (sort of). We're both still very much learning about carbs, starches and sugars and healthy ,Diabetes friendly, eating generally. The biggest frustration for me personally? This 3 month "wait and see" thing with the GP when I feel I could be doing more positive things to get myself on track. I asked again about buying a monitor but was told to wait until I see him in January. I'm assuming that I'll get another blood test to see what's changed over the previous 12 weeks and things can be planned from there - I really hope so.
I do know that it's a (life)long road and I can come to terms with that...I just don't want to be causing myself more damage in the short term - it's frustrating enough to get me reaching for a very large bar or two of Dairy Milk 🙄 - I do miss chocolate though...

I've now received the welcome pack from Diabetes UK and the eating guide in there is also proving very useful in giving recipes, ideas and substitutions although I'm still waiting on my Log in and Password from the NHS My Diabetes/My Way website which I know will maybe answer a few of my questions on my blood readings. I've had my first eye check which came back fine - still to get my foot check appointment. No side effects from my twice daily Metformin tablet either - apart from what appears to be referred to the "Metfartin" effect 😎.

More than all that, though, these forums here are proving a goldmine of useful information and support - even reading through them is enough to make me realise that some other person has already travelled down the same path - even in part - that I'm on just now.
Initially in the earliest and darkest days after diagnosis and despite being told not to, both I and some family members made the huge mistake and started reading things on the web (I know that you really shouldn't look at Google for some things...) about Diabetes, it's causes and some of the potential side effects rocked my world more than a bit (it also caused quite a few heated family debates about what I should and shouldn't be doing - instant experts.blah! blah!...).
One (American) website quite starkly stated "So you've got Diabetes? "Your life will be shortened by at least ten years and you'll most likely die of a heart attack or a stroke after one or more amputations" Well, thanks very much guys, Any good news? It was frankly terrifying.

Now I'm getting things into a bit more of a realistic perspective, I've printed off Maggie Davies' letter and I'll happily show it to anyone who thinks that Diabetes is "nothing really much to bother about and is just because you're a bit fat and eat too much sugar" and I'm also in the process of reading Gretchen Becker's book too. These two publications alone are great inspirers and levellers for both me and others.

I am still struggling to get my head to catch up with all that's happened to my body over the last 3 months and I freely admit that I am still very angry inside personally with myself about contracting the illness that has ultimately led me here (a combination of the HiB virus which manifested itself very quickly in massive simultaneous and separate infections in my both lymph glands and in my epiglottis closing off my airway and almost going to full sepsis that nearly saw me off...permanently). All the resulting IV antibiotics and IV steroid treatments during my hospital stay sent my bloods haywire ultimately leading to my Type 2.
Life has been a bit tough on me over the last couple of years - losing my adopted mother, a sister-in-law followed by a sister and a brother all in in the space of 18 months (the latter two in the space of 4 weeks..) handed out a bit of a kicking.
The doctors now suspect that all of this stress and grief (bottling things up is definitely NOT good - I've found this out the hard way) may have possibly led to my auto-immune system being weakened and compromised to the point that allowed the initial infection to get me in the first place.
Sleep can still be a bit broken just now - often waking up in the wee hours with a million thoughts going through my addled bonce, a few tears and feeling a bit lost. Keeping concentration at work has recently been a bit difficult too but I know that's temporary - my employers are very understanding and counselling is available if I need it. Ali is my rock and keeps me on the ground too.

However, after all that, I am still here (and still whingeing) and if I can learn to manage the Type 2 - and maybe even get it into remission in the next 24 months or so. Either way, I now know that I can live a full life with my (much) better half (Alison - 36 years and counting - poor girl 😉), and I'll be delighted and thankful for that - we can still go travelling, I can still play my guitars and I can still mess around in my old Land Rover (the finest collection,of niggling oil leaks in Edinburgh - ask our driveway!) so it can't be all bad....
Thanks so much again boys and girls - because of all you amazing people, I know that I can make this work for me (and Ali) - I promise that I'll keep watching these forums and keep you updated.

Jim
 
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Well - I'm in trouble then - as I probably have a whole block of cheese in two weeks - I grate it over the scrambled eggs - 3 off, and I get through a dozen each fortnight just for breakfast.
I feel pretty good on it though - however, I don't have ordinary crackers but make some low carb ones.
I have joints of meat and roast chickens, there are stacks of chops and steaks in the freezer, also bags of frozen stir fry and low carb veges. After all, my ability to cope with protein and fats seems just fine - it is the carbs which are the problem. I can cope with a few berries and cream - I have full fat yoghurt as an option, I make real custard once in a while and make sugar free jellies regularly.
By keeping blood glucose levels under control there is no reason at all to expect anything very much to be altered for you in terms of life expectancy, from what I can see.
Yes, high blood glucose is not something you'd wish on anyone, so just don't go there. Get a cheap to use meter (I use Spirit Healthcare's Tee 2) and sort out a few things you might find enjoyable - in case you need inspiration.
I managed to get back to normal levels in 6 months from diagnosis and have lost about 50 lb and a lot of inches.
The only downside is, each time the season changes I need to make or buy smaller clothes.
 
Hi Jim, this is your body and your diabetes so I find it bizarre that you are not been given your HbA1c level. I always like to deal in facts. Like you, I'm a type 2 newbie (a few months ahead of you) & I've bought scales and a blood pressure monitor plus a bg monitor which has been hugely helpful in determining what affects my sugar levels. You've made loads of positive changes which I'm sure you'll see the benefit of. If you don't get your test results through My diabetes/My way I would insist that they print the result off for you. As we have both found out this is a hugely helpful & friendly forum. Stay strong, keep your sense of humour, ask loads of questions and good luck with your journey!
 
Sounds like your nurse was about as useful as a chocolate teapot as far as your diabetes is concerned..
Since my diagnosis I have had a few gud DNs (Gp practice diabetic nurses) but I am sad to say many of the chocolate tea pot variety . Though some did improve after some coaching by myself.

Muscle weighs more than fat, So if you’ve been doing more exercise , you’ve trimmed down but put on more muscle. They should never be using such inaccurate scales.

In the nicest possible way, we are a rebellious lot on here, most of us won’t conform to that healthy eating plate and we heartily recommend self testing 🙂 .
If you want to test now many here use This meter and it’s test strips as the strips are far cheaper than those for meters you can buy over the counter.
We use th mmol/l measurement in the U.K.

It sounds as though you have been doing really well, hopefully you will soon be ane to get the actual numbers of your Hb1ac , I wonder if the Gp receptionist wii give them to you.
 
Hi everyone,
A bit of an update - even though I'm still very much in the "newly diagnosed" category - thanks so much again for all the kind words from everyone when I announced myself in the "Newbies" thread. I've now had the second visit to the nurse, roughly a month after the initial diagnosis and to be honest, I don't feel that much further forward with them... In fairness though, the COVID 19 fallout has a lot to do with the amount of support that most GP's can offer to anyone these days.
In that meeting, she still wouldn't tell me what my blood sugar reading was (or indeed what it should be) that led to my original diagnosis, instead saying that it was just a bit high (despite me asking directly a number of times), My BP was OK but still a bit higher than they would like and she only appeared to want to talk about a low fat diet (one example, "if you like cheese, then a couple of slivers on a cracker once a month should be ok..." 😱) and to then ask me if I wanted to start on a course of statins in January (is there something up with my cholesterol levels then? Why January? I asked - no clear answer was forthcoming - see the doctor in January...).
When I was weighed, she said I had lost 900 grams in the entire month following diagnosis which was surprising (and really disappointing) as I had made a real effort eating-wise and my family/friends had all been commenting on how much I appeared to lose. This was bolstered by the fact that I was now getting into shirts and trousers that I hadn't been able to get into for years. When I challenged this small weight loss, she then said, "Oh, I think those might not be the same scales that you stood on the last time you were here and they've since had new batteries and need calibrated, and, etc.... o_O". When I got home feeling very deflated, my wife didn't believe it and everyone says that I've definitely look like I've lost more.
Incidentally, to get around this, we bought some new scales for ourselves last week and now use them once a week (Sunday morning) on the stone floor in the conservatory and in the last week, I've managed to lose 2.1Kg and my better half lost 1.5Kg. I know I'm still very heavy but it's nice to know that I'm heading in the right direction. My blood pressure on Sunday was 132/82 at 74bpm which I believe is OK too.
Although not Diabetic, my wife Ali is supporting me by following the same eating regime as me more or less and it seems to be helping her lose a bit as well.

It's mainly massive thanks due to everyone on here (especially and firstly with the available information food wise) and the site content that I'm seeing, more than anything offered by the GP surgery, that I seem to be moving in the right direction (sort of). We're both still very much learning about carbs, starches and sugars and healthy ,Diabetes friendly, eating generally. The biggest frustration for me personally? This 3 month "wait and see" thing with the GP when I feel I could be doing more positive things to get myself on track. I asked again about buying a monitor but was told to wait until I see him in January. I'm assuming that I'll get another blood test to see what's changed over the previous 12 weeks and things can be planned from there - I really hope so.
I do know that it's a (life)long road and I can come to terms with that...I just don't want to be causing myself more damage in the short term - it's frustrating enough to get me reaching for a very large bar or two of Dairy Milk 🙄 - I do miss chocolate though...

I've now received the welcome pack from Diabetes UK and the eating guide in there is also proving very useful in giving recipes, ideas and substitutions although I'm still waiting on my Log in and Password from the NHS My Diabetes/My Way website which I know will maybe answer a few of my questions on my blood readings. I've had my first eye check which came back fine - still to get my foot check appointment. No side effects from my twice daily Metformin tablet either - apart from what appears to be referred to the "Metfartin" effect 😎.

More than all that, though, these forums here are proving a goldmine of useful information and support - even reading through them is enough to make me realise that some other person has already travelled down the same path - even in part - that I'm on just now.
Initially in the earliest and darkest days after diagnosis and despite being told not to, both I and some family members made the huge mistake and started reading things on the web (I know that you really shouldn't look at Google for some things...) about Diabetes, it's causes and some of the potential side effects rocked my world more than a bit (it also caused quite a few heated family debates about what I should and shouldn't be doing - instant experts.blah! blah!...).
One (American) website quite starkly stated "So you've got Diabetes? "Your life will be shortened by at least ten years and you'll most likely die of a heart attack or a stroke after one or more amputations" Well, thanks very much guys, Any good news? It was frankly terrifying.

Now I'm getting things into a bit more of a realistic perspective, I've printed off Maggie Davies' letter and I'll happily show it to anyone who thinks that Diabetes is "nothing really much to bother about and is just because you're a bit fat and eat too much sugar" and I'm also in the process of reading Gretchen Becker's book too. These two publications alone are great inspirers and levellers for both me and others.

I am still struggling to get my head to catch up with all that's happened to my body over the last 3 months and I freely admit that I am still very angry inside personally with myself about contracting the illness that has ultimately led me here (a combination of the HiB virus which manifested itself very quickly in massive simultaneous and separate infections in my both lymph glands and in my epiglottis closing off my airway and almost going to full sepsis that nearly saw me off...permanently). All the resulting IV antibiotics and IV steroid treatments during my hospital stay sent my bloods haywire ultimately leading to my Type 2.
Life has been a bit tough on me over the last couple of years - losing my adopted mother, a sister-in-law followed by a sister and a brother all in in the space of 18 months (the latter two in the space of 4 weeks..) handed out a bit of a kicking.
The doctors now suspect that all of this stress and grief (bottling things up is definitely NOT good - I've found this out the hard way) may have possibly led to my auto-immune system being weakened and compromised to the point that allowed the initial infection to get me in the first place.
Sleep can still be a bit broken just now - often waking up in the wee hours with a million thoughts going through my addled bonce, a few tears and feeling a bit lost. Keeping concentration at work has recently been a bit difficult too but I know that's temporary - my employers are very understanding and counselling is available if I need it. Ali is my rock and keeps me on the ground too.

However, after all that, I am still here (and still whingeing) and if I can learn to manage the Type 2 - and maybe even get it into remission in the next 24 months or so. Either way, I now know that I can live a full life with my (much) better half (Alison - 36 years and counting - poor girl 😉), and I'll be delighted and thankful for that - we can still go travelling, I can still play my guitars and I can still mess around in my old Land Rover (the finest collection,of niggling oil leaks in Edinburgh - ask our driveway!) so it can't be all bad....
Thanks so much again boys and girls - because of all you amazing people, I know that I can make this work for me (and Ali) - I promise that I'll keep watching these forums and keep you updated.

Jim
I belive My Diabetes has a record of your results.
 
Hi Jim. Does your GP surgery have an app you can register for? Mine has one where I can see all my prescriptions, test results, and summary of appointments. It’s useful for looking at your results as they always over simplify it to “high” or “okay” in the appointment but the app gives actual numbers and ranges.
 
Sounds like your nurse was about as useful as a chocolate teapot as far as your diabetes is concerned..
Since my diagnosis I have had a few gud DNs (Gp practice diabetic nurses) but I am sad to say many of the chocolate tea pot variety . Though some did improve after some coaching by myself.

Muscle weighs more than fat, So if you’ve been doing more exercise , you’ve trimmed down but put on more muscle. They should never be using such inaccurate scales.

In the nicest possible way, we are a rebellious lot on here, most of us won’t conform to that healthy eating plate and we heartily recommend self testing 🙂 .
If you want to test now many here use This meter and it’s test strips as the strips are far cheaper than those for meters you can buy over the counter.
We use th mmol/l measurement in the U.K.

It sounds as though you have been doing really well, hopefully you will soon be ane to get the actual numbers of your Hb1ac , I wonder if the Gp receptionist wii give them to you.
Hiya folks
As to the weight discrepancies, the exercise regime is still something I haven't done much about so I don't think the fat to muscle makes any real difference at this time - my feeling is that the scales at the surgery were a bit wonky - I'll just record any changes on our own scales. I've already emailed My Diabetes My Way for an update on how my request for a Log In and Password is coming along. I'll just have to be a bit patient - it'll all happen in it's own time. I'm pretty much assuming I'll get another Hb1ac test in January but who knows?
 
Hi @JimG92, I find it appalling that you've been fobbed off with 'it's a bit high' and the other nonsense - my old DN used to print off all my results without me asking, as does the very lovely health assistant, whereas I had a bit of an email fight with the new DN and insisted that she send them to me (this was around the time of the first lockdown).

It's your diabetes, your body, and your concern, and you need to have the HbA1c results to have a starting point of where you are. Get a meter and start testing and you will soon be fascinated by the different effects different foods have on your readings (well, I was anyway!). More to the point you will be able to tweak your meals to find what's best for you - and like Drummer I eat lots of cheese and eggs!
 
We have all come across HCPs wearing different labels on their hats, who were neither use nor ornament, just sorry but immensely sympathetic that you've had to suffer one this early in your journey. (Wonder how many of HER patients have had 10 years taken off their lives following amputations etc etc .... no, let's not try to work that one out ...)

Best use her bloody minded and useless lack of any sensible advice, to motivate you to succeed, DESPITE her!

Or - you could complain. Did she actually do any of the 15 annual checks we are all supposed to have (they'll never all apply, cos some of em are for ladies and some of them, only if pregnant at the time LOL) as you don't seem to have mentioned 'toe tickling' or 'Doppler' scans to check pulses in ankles, or a basic eye test or well, anything much at all.

See Your 15 diabetes healthcare essentials | Diabetes UK

Has the surgery yet referred you for retinopathy screening? It's 100% worth checking (by phone) if they have, because they should have and the newly diagnosed get priority over us old uns with no sign of probs previously and the screening (and any urgent opthalmological treatment proving necessary) is still happening despite the pandemic.
 
Hi Jim. Does your GP surgery have an app you can register for? Mine has one where I can see all my prescriptions, test results, and summary of appointments. It’s useful for looking at your results as they always over simplify it to “high” or “okay” in the appointment but the app gives actual numbers and ranges.
Although surgeries are supposed to give online access many still not allow access to Test Results.
 
Thanks for posting such a positive and uplifting message @JimG92

Sorry to hear you are having a bit of a frustrating time with your GP surgery - all the best for finding your own way through the challenges, and hope the appointments come around quickly and go well.
 
Thanks for posting such a positive and uplifting message @JimG92

Sorry to hear you are having a bit of a frustrating time with your GP surgery - all the best for finding your own way through the challenges, and hope the appointments come around quickly and go well.
I'm still sitting here looking enviously at those little individual chocolate decorations that are hanging from the Christmas tree - put there by the slightly sadistic Mrs G....(allegedly they're for the grandkids but I just think she likes to see me staring and drooling.......)
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
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