Just diagnosed with Type 2: Feeling like it's my fault?

[Karajane]

Hi, my name is Kara,
I have Severe Myalgic Encephalomyelitis which basically means inflammation in brain and spinal chord and its not about that, but basically it means I am bed bound and have 24hr care and some complex needs, i.e got catheter, and need oxygen, on palliative care meds.

And now Ive just had a type 2 diabetes diagnosis and even though I know its not, I can't help but feel like it is all my fault somehow. I'm stuck in bed, so even though I in general only eat a diet that comes to 1200-1300 calories per day, its as healthy as it can possibly be as I have swallowing problems also which makes changing any thing about diet even more difficult. But despite sticking to a strict calorie intake I am still 16 stone, and I'm 5 ft 10 so I carry it well, but still, not a good weight at all, but even with my diet which I still to a good 95% of the time I just keep putting weight on.

I very occasionally have a blow out and order a pizza (I pick off and the bits I can eat etc) and Im so bloody tempted to do that in the mood I'm in but i wont. I just don't know what to do, and though I've tried my damned hardest, because I am obese and bed bound and stuff, I feel that type 2 means I've done something really wrong and I've bought it on myself. I'm only 28 too, so I feel pretty young to have this. Though both my Gran and Grandad have diabetes though I'm not sure what type.

Sighs! Just feeling helpless and like its my fault somehow. Anyone feel the same, and is it my fault? Or does it just happen? It seems theres so much out there that sort of says type 2 diabetes is very much a diagnosis of people who 'don't look after their health' etc, or who 'eat badly' etc. My brain is just going round in circles and I'm feeling pretty helpless. And I've not even spoken to my dr or nurse about it yet, because I'm bed bound and housebound i was informed with a letter from the GP that gave me zero clue as to what it meant or what would happen next etc!

Is it just me, or does anyone else feel theres a culture of self blame re type 2 out there at all? Or is it just my brain going a bit mad?

Cheers for being there! Sorry that I ramble!
Kara xxx

 

[Pine Marten]

Hi @Karajane, I'm sorry to hear of your problems.

You are right, there certainly is a culture of blame - which is very unfair, as diabetes can be due to several causes, or even be just one of those things, and you most certainly haven't done anything wrong!

You mention calories, but have you considered carbs? These are the things which type 2s can't cope with, starchy things like potatoes, pasta, bread, rice and so on. Replacing these with other stuff, including more green leafy veg, fish, good quality meat, fish, eggs, some fruit especially berries, is good, and can help to lose weight too.

I'm not surprised you haven't had much help or information from the GP, it's about par for the course I'm afraid. Do come back and ask any questions you like and we'll be pleased to help. All the best to you from a fellow type 2 🙂

 

[Karajane]

Hi @Pine Marten

Thanks so much for your response. Re carbs, I can't eat a great deal of them. Ive been recording my diet for a long time now on weight loss resources to keep track mainly. And it does a really helpful nutritional breakdown thing, and I'm under my daily recommended amounts for both, sugar, fats, carbs, and protein. The only thing Im approaching the RDA on is salt. Everything else is under. I so wish I could eat salad but I choke on it. But I blend a lot of spinach for dips, curry's and put some in pasta etc, I can only eat fresh pasta, we mainly home make it. I eat a lot of eggs because they're easy to swallow and because I have chickens, but no more than I should be eating. I can't eat potatoes as it sticks, and rice causes choking and aspirating too. I don't eat very much meat, but mainly have smoked salmon again as it slides down basically and is an easy swallow thing. I love roast vegetables. Can't have much thats nice fresh and crunchy really so its a real struggle to change what I'm already eating.

But as a guide, tonight I had a mini spinach and feta quiche (155g) with a plate full of cherry tomatoes in half, some baby beetroot and sundried tomatoes drained (6 pieces) That is a typical meal for me. So the carbs are in the pastry, but most of it is protein and veg.

I'm glad I'm not the only one who feels judged as if I'm to blame for it somehow, and I;m glad that you think I am not. There's just something even my sister said, when I said it was type 2, she knows what I eat said, isn't that the one thats for really big people who don't eat well? I was just like palm to face! I just didn;t know how to respond but a terse no. She didn't mean to be unsupportive but that is the ultimate assumption, and I have to admit even me went into the self blame mode, so she was no different than I.

Sighs! Glad its not just me. Re diet - what in heavens name can I do if I'm already 1200 a day and under on recommended allowances on them all, bar salt? Im asking seriously as I just don;t know what to do!

Bless you and thanks for responding,
Kara xxx

 

[Mini-Vicki]

Hi Kara,
Sorry to hear about your diagnosis, and sorry you're feeling this way. I was initially misdiagnosed as type 2, and I was absolutely made to feel it was my fault. The headlines constantly in the media don't help either! Type 2 can be down to lifestyle, but it can also have a genetic component. Nobody wants to have diabetes, so I really don't understand why anyone would want to make someone feel bad for developing an illness! You absolutely have not done anything wrong.
As PineMarten has suggested, cutting down on carbs can really really help. GPs are often unwilling to supply glucose testing kits to T2s (which I think is so wrong!) but it may be worth asking if you can have one, even for occasional testing, as this will help you to find what foods spike your blood glucose. As I'm writing this, I've just seen your newest post outlining what you eat, so I see that it will be difficult for you to change your diet. Would it be possible for you to liase with your health care team further, to see what options are available for you?
Just be assured that developing diabetes is not your fault. I know a couple of type 2s who are very slim, and one of them is very active, so really anyone can get type 2!
I'm a type 1 myself (after getting a correct diagnosis!) and people will often say to me 'oh did you eat too much sugar?' as if I brought this on myself, so I totally understand where you are coming from!
Take care,
Vicki x

 

[SueEK]

Hi Kara and welcome to the forum, what a rotten time you are having. Don’t think for one moment you are to blame for your diagnosis, unfortunately for most people ‘it just happens’ whether it be your pancreas or how your body deals with insulin. I was diagnosed in January with a high bg, I am slim and always have been, nobody in my family has diabetes and although I wouldn’t describe myself as particularly active, I’m not a slob either. I did have a fairly high carb diet but have never eaten sweet things or curry’s or anything like it. Having said that I did question myself to begin with but I now realise it’s just my body being a pain in the butt. I have also experienced the lack of understanding of others but can’t really blame them as that’s what we are led to believe, I knew very little about diabetes before diagnosis.
As Mini-Vicki states maybe your team could be if assistance, I do hope so.
Please continue to ask questions and let us know how you are getting on x

 

[Jodee]

Welcome Kara, don't take it to heart Kara, the uninformed assume its too many cakes that cause diabetes, I even had a nurse say the same to me recently, even though My diabetes was steroid induced. there was a lady on my desmond diabetes course at the hospital who was mostly wheel chair bound and she was having the same difficulty as you. Its difficult when you are restricted this way. If you don't have a physio coming in to exercise with you already, there are some seated chair exercises on you tube which you may want to check out, they may help a little bit.

 

[Flower]

Hello and welcome Kara 🙂

There is a strong genetic element to developing Type 2 diabetes, if it already runs in your family then the odds are increased. It is also linked to environmental factors so please do not blame yourself. It is tough to add a chronic condition to your situation but it can be controlled.

What medication if any have you been prescribed and do you know what your HbA1c blood test result was on diagnosis? this is the one taken from the arm and sent off for analysis. That will give you a starting point of what your blood glucose has been on average over the past 12 weeks and a level to reduce down from.

What daily recommended level of carbs are you following? A good starting point when you are restricted by what you can eat and swallow is to write down a list of foods you can manage, have a look at the carb values by typing in eg carbs in beetroot/quiche/pasta etc then seeing where you could maybe reduce some of the more carby elements. Any tweaking to reduce the carbohydrate load you're asking your pancreas to deal with will start to help with trying to get your blood sugar under control.

I got asked today if my diabetes was "the cake thing"- I've lived with it for over 40 years since I was a child. The crass media reporting fuels the blame game and unless you have to deal with diabetes yourself you are unlikely to know even a fraction of the reality. I just take a deep breath ....🙄

Best wishes 🙂

 

[Lilian]

Sorry to hear of all your difficulties Kara. There is nothing useful I can add to what has already been said, other than to say welcome to this forum and hopefully our shared experiences will help you to feel better about yourself and to know it is definitely not your fault any more than it is your fault what shape your ears are, or how big your nose is. Every member of my family and extended family has diabetes. My sister was determined she would not so spent all her life eating salads and low calorie, didn't smoke or drink (other than the occasional glass of wine at Christmas) exercised every day (walking, swimming, gym) and even got a certificate to teach aerobics, yet she still got diabetes.

 

[Karajane]

Bless you all, thank you so much for listening and taking the time to reply to me. In terms of exercise, I can't even do any physio, I can't sit up as my heart can't cope with pumping the blood around as my autonomic system is bad, so it can't circulate oxygen and I get dangerously tachycardia. So the best I can do is be transferred to a wheelchair that tilts and reclines so Im basically in a laying down position. Thats as close as I get to exercise. Also I can't have physic because lactic acid production is so high, that it is building up so very fast that exercise can exacerbate the condition and I get worse basically.
Im fully bed bound, and light, sound sensitive and when I experience these things in real light and sound at normal volume - I can to have seizures. In my room I have very little light and cannot have the curtains or blinds open, sometimes 5cm-10cm gap is all I can tolerate before migraine sets in, and if Im bad it can set off spikes in brain inflammation. I have to go to hospital a lot, about every 6-10 weeks on the whole. The infections I get can be life threatening ones, and I'm very close to having to go to hospital for another infection (that can be life threatening) that has just been detected from my most recent cultures, we are waiting to see if it will pass or if sepsis will to start setting in so I can have the IV's, but its a bad infection that doesn't respond to any oral antibiotics and is becoming resistant to the only IV antibiotic it will respond to, so if that doesn't respond we are in difficulty - so yes diabetes to add to the list of complexities was and is just a bit of icing on the cake for my mental health!

Normally (somehow!) I normally deal with things very well. And I know diabetes amongst all that of the above should not be the thing that bothers me, but somehow it is, as it feels like my fault! People just see this overweight girl in bed and jump straight to those conclusions I have a by far healthier diet than most and as I've said don't even eat above 1200 cals per day, I don't know why Im so upset about this, as I'm used to my first condition not being taken seriously, but its just knocked me mentally, Its something I wasn't prepared for so it kind of side lined me.

In terms of the tests, I've been having weekly bloods done for over 8weeks, I didn't even know they were testing for diabetes as I often have bloods done as part of my condition to monitor inflammation markers to get a warning on infection or brain inflammation spikes etc. They haven't done a test from my arm, only from the small veins on my hands. Getting blood from me is a remarkable feat, even from the small veins on the hands, as I've got pitiful veins. Even when I had a central line in my jugular vein - my jugular vein wasn't large enough for the kit and they had to go through my artery and even that was small. So maybe my Dr knew that and knew they would need to test for six weeks instead. In fact I think its been well over six weeks to be honest.

Either way - I've had NO information. Not even a phone call. I just got a letter saying 'We are sorry to inform you that you have been diagnosed with Diabetes: Type 2. This is a LIFELONG and Serious condition. Thank you.' Then the Drs surgery address. That was basically it. I've had NO contact with a nurse or a Dr. My carer phoned the surgery and they said the Nurse would be coming to see me at 'some point' and I'd have to have another blood test - I think they are meaning the one from the arm that you guys have said - well good luck with that, as there are no veins there at all, even anaesthetists cannot cannulate me, I have to have central lines. So goodness knows. This is why my head is in such a whirl I think, I got a short harsh brief letter and not even a 'we will be in contact' - what am I meant to think!? Am I the only one that things this is crazy?

 

[Mini-Vicki]

My initial diagnosis was the same - the doctor told me I had type 2 diabetes, told me not to eat sugar for three months, and come back for another blood test then. It was handled horribly.
Keep asking questions here, it’s so helpful x

 

[Karajane]

My initial diagnosis was the same - the doctor told me I had type 2 diabetes, told me not to eat sugar for three months, and come back for another blood test then. It was handled horribly.
Keep asking questions here, it’s so helpful x

Thanks so much Vicki xxx

 

[Ditto]

There is no way it's your fault! Don't even think that. Welcome to the forum. 🙂

 

[TheClockworkDodo]

Hello, @Karajane and welcome to the forum, I'm so glad you've found us here, because it's a really good place for non-judgemental advice about diabetes, and it doesn't sound as though you're getting very much help from your surgery.

I have ME too, though mine is nothing like as severe as yours. I'm quite mobile, but ironically can't go many places because I have severe multiple chemical sensitivity, and I'm also noise sensitive (I'm not so bad with light, I just wear sunglasses a lot). I am struggling with bad brain fog though, so apologies if this isn't very coherent - I just wanted to say hello.

I know several people who have both ME and diabetes, which I don't think is surprising, given the immune element of both - type 1 diabetes is an auto-immune disease, and type 2 also often occurs in people with other immune diseases, like hypothryoidism, so I'm sure there's an immune element to that too. Things like being overweight are just risk factors for type 2, not the sole cause of type 2, as the media tends to imply. And in any case you are overweight because you're stuck in bed because you're seriously ill! It's not your fault!

I can understand your diet issues - I've only had the odd bad day when I couldn't swallow, but I have a friend with ME who has the same sort of problems with it as you (she seems to live on mostly scrambled eggs and stewed apple - she can't swallow either solids or liquids). It sounds as though you need to cut down on things like pasta and pastry, but I realise finding alternatives is likely to be difficult. Can you manage cauliflower? Substituting something like that for pasta that might help get your blood sugar down a bit.

They can take blood for an HbA1c from the back of your hand - I have all my blood tests done there because I'm very squeamish and I find it easier. That may be the test they've already done, on which they've based their diagnosis. When you do get to see someone, do ask them which tests for diabetes they've done, and what the results were - it's really helpful to know the number for the HbA1c.

It's worth asking the nurse if you can have a blood sugar meter to test your own blood sugar at home (it's not like a blood test, it just pricks your finger). She will probably say no, as most type 2s don't get them on the NHS, but you might get one as your circumstances are unusual. If not, we can recommend one for you to buy if you would like to. It really is a very helpful thing to have because you can work out which foods effect your blood sugar and which don't (it's different for everyone) - you may find it's something unexpected which is sending your blood sugar up, and that you're actually OK with pasta!

 

[everydayupsanddowns]

Sorry to hear about everything you are facing @Karajane

Glad you have found the forum - hope it helps.

 

[Grannylorraine]

Welcome to the forum, you certainly have a lot going on. But please do not think this is your fault.

 

[rebrascora]

Hi KaraJane and welcome

Your reaction of guilt is totally normal in that many of us feel like that but it is also totally misplaced. The video linked below helped me get my head around it and inspired me to move forward with it in a positive manner and research more...

I would imagine this Diabetes diagnosis is a bit of a "last straw that breaks the camels back" with all the other health issues you have going on, so it is unsurprising that you are really feeling knocked down. You must be an incredibly strong person mentally to deal with the other stuff. I feel ashamed to say that I have days when I am really frustrated just trying to control my Blood Glucose levels and I am otherwise fit and healthy, so you are certainly allowed to feel a bit kicked in the teeth.
Unfortunately high blood glucose levels will make you more susceptible to infections and your body less able to fight them so reducing your carbs as much as you can and perhaps increasing fat intake a little if you are able, may be beneficial. Are you able to eat things like avocados, cheese, Greek yoghurt, olives.... I'm guessing nuts might be difficult but perhaps peanut butter would be OK.

It may be helpful to find out what your HbA1c reading is..... this is kind of the starting point in your Diabetes story and indicates your average blood glucose over the past 2-3 months. It will also be beneficial if you can monitor your blood glucose and with all your other health issues I would suspect that it will be more important for you to be able to do so, so that you can figure out the things that most affect your blood glucose levels and try to tweak your diet to avoid them. As diabetics, we are all slightly different in this respect..... some people can manage fruit but not starchy foods, some can get away with eating wholemeal/wholegrain carbs. Some can eat berries but not apples or bananas. Some people find that eggs spike them, even though there are few carbs in them. Testing enables you to tailor your diet to your own body's intolerance. If the NHS are unable to supply you with a glucose meter for home testing, they can be bought relatively cheaply..... it is the testing strips that make the process expensive but the Codefree monitor is often recommended as it is the cheapest for test strips at just £8 for a pot of 50.

I hope some of what I have written will help you come to terms with this mentally and give you a plan of action going forward. This forum has been a wonderful resource of support, advice and information to me and I hope it can be to you too.

Very best wishes to you

Barbara

 

[Karajane]

Hello, @Karajane and welcome to the forum, I'm so glad you've found us here, because it's a really good place for non-judgemental advice about diabetes, and it doesn't sound as though you're getting very much help from your surgery.

I have ME too, though mine is nothing like as severe as yours. I'm quite mobile, but ironically can't go many places because I have severe multiple chemical sensitivity, and I'm also noise sensitive (I'm not so bad with light, I just wear sunglasses a lot). I am struggling with bad brain fog though, so apologies if this isn't very coherent - I just wanted to say hello.

I know several people who have both ME and diabetes, which I don't think is surprising, given the immune element of both - type 1 diabetes is an auto-immune disease, and type 2 also often occurs in people with other immune diseases, like hypothryoidism, so I'm sure there's an immune element to that too. Things like being overweight are just risk factors for type 2, not the sole cause of type 2, as the media tends to imply. And in any case you are overweight because you're stuck in bed because you're seriously ill! It's not your fault!

I can understand your diet issues - I've only had the odd bad day when I couldn't swallow, but I have a friend with ME who has the same sort of problems with it as you (she seems to live on mostly scrambled eggs and stewed apple - she can't swallow either solids or liquids). It sounds as though you need to cut down on things like pasta and pastry, but I realise finding alternatives is likely to be difficult. Can you manage cauliflower? Substituting something like that for pasta that might help get your blood sugar down a bit.

They can take blood for an HbA1c from the back of your hand - I have all my blood tests done there because I'm very squeamish and I find it easier. That may be the test they've already done, on which they've based their diagnosis. When you do get to see someone, do ask them which tests for diabetes they've done, and what the results were - it's really helpful to know the number for the HbA1c.

It's worth asking the nurse if you can have a blood sugar meter to test your own blood sugar at home (it's not like a blood test, it just pricks your finger). She will probably say no, as most type 2s don't get them on the NHS, but you might get one as your circumstances are unusual. If not, we can recommend one for you to buy if you would like to. It really is a very helpful thing to have because you can work out which foods effect your blood sugar and which don't (it's different for everyone) - you may find it's something unexpected which is sending your blood sugar up, and that you're actually OK with pasta!

Bless you - sorry to hear you have ME too. I wouldn't wish it on my worst enemy. Thanks for your advice and understanding xxxx Take care too. P.S Already have a blood testing kit due to needing full sets of obs regular for sepsis warnings etc, when on alert for sepsis I often don't eat as i feel so sick, this has caused hypos in the past and I've had to have that nasty gel on the ambulances, so Ive invested in one after a nurse said it might be worth it. Funnily enough, I noticed my bg was higher than it should be back then, over two years ago - I mentioned it, but they said it wasn't high enough to bother with even though it was regularly in the 9's. Sometimes 10's. Anyhow, Ive probably had it for a wee while. I might start testing to see. Thanks again xxxx

 

[Karajane]

Hi KaraJane and welcome

Your reaction of guilt is totally normal in that many of us feel like that but it is also totally misplaced. The video linked below helped me get my head around it and inspired me to move forward with it in a positive manner and research more...

I would imagine this Diabetes diagnosis is a bit of a "last straw that breaks the camels back" with all the other health issues you have going on, so it is unsurprising that you are really feeling knocked down. You must be an incredibly strong person mentally to deal with the other stuff. I feel ashamed to say that I have days when I am really frustrated just trying to control my Blood Glucose levels and I am otherwise fit and healthy, so you are certainly allowed to feel a bit kicked in the teeth.
Unfortunately high blood glucose levels will make you more susceptible to infections and your body less able to fight them so reducing your carbs as much as you can and perhaps increasing fat intake a little if you are able, may be beneficial. Are you able to eat things like avocados, cheese, Greek yoghurt, olives.... I'm guessing nuts might be difficult but perhaps peanut butter would be OK.

It may be helpful to find out what your HbA1c reading is..... this is kind of the starting point in your Diabetes story and indicates your average blood glucose over the past 2-3 months. It will also be beneficial if you can monitor your blood glucose and with all your other health issues I would suspect that it will be more important for you to be able to do so, so that you can figure out the things that most affect your blood glucose levels and try to tweak your diet to avoid them. As diabetics, we are all slightly different in this respect..... some people can manage fruit but not starchy foods, some can get away with eating wholemeal/wholegrain carbs. Some can eat berries but not apples or bananas. Some people find that eggs spike them, even though there are few carbs in them. Testing enables you to tailor your diet to your own body's intolerance. If the NHS are unable to supply you with a glucose meter for home testing, they can be bought relatively cheaply..... it is the testing strips that make the process expensive but the Codefree monitor is often recommended as it is the cheapest for test strips at just £8 for a pot of 50.

I hope some of what I have written will help you come to terms with this mentally and give you a plan of action going forward. This forum has been a wonderful resource of support, advice and information to me and I hope it can be to you too.

Very best wishes to you

Barbara

Thanks so much, I actually have the code free testing kit, so good to know I've got the right one. My carbs are already really low, I went through my whole diet thing online (I've been doing this for a while so its a helpful source of working stuff out diet wise) and my carbs for the day are often in the range of 80-110g, Im under the RDA's on all food groups, including sugar, fats, saturated fats, proteins I'm often more near the RDA for. I've been looking at dietary advice for diabetes and didn't realise I'm already following it... so I suppose that is good but also leaves me with very little to change. Thanks so much for your help and reassurance. Im feeling much better about things mentally today thanks to you all. Thank you to every single post, I so appreciate it all everyone xxxx

 

[Karajane]

Thanks so much, I actually have the code free testing kit, so good to know I've got the right one. My carbs are already really low, I went through my whole diet thing online (I've been doing this for a while so its a helpful source of working stuff out diet wise) and my carbs for the day are often in the range of 80-110g, Im under the RDA's on all food groups, including sugar, fats, saturated fats, proteins I'm often more near the RDA for. I've been looking at dietary advice for diabetes and didn't realise I'm already following it... so I suppose that is good but also leaves me with very little to change. Thanks so much for your help and reassurance. Im feeling much better about things mentally today thanks to you all. Thank you to every single post, I so appreciate it all everyone xxxx

 

[HOBIE]

I keep well away from pizza. I do not like & have very high carbs for one little bit. Welcome 🙂