Newly diagnosed type 2 and struggling

[becca19962014]

Hello,

I'm new here, I was recommended to post here because I've no help or support and well, I'm very confused.

I've a lot of different medical conditions meaning my diet is restricted. I'm on benefits which really restricts what I'm allowed to eat.

Basically I've been given a diet and metformin. I'm finding my autonomic condition (I lose consiousness a lot) has got worse. This afternoon I've been really unwell. The leaflet information contradicts that I was given when given the tablets to take, I'm supposed to take 500mg week one then add a tablet every week for the next four. The diet is banning all the things I can afford to buy and eat, things like value foods or ready meals from Iceland. The recommendation that I purchase expensive organic foods and cook everything from scratch just isn't an option on £25 a week food budget. I can't cook at all due to severe disability in both hands, literally it's ready meals, cereals and complan foods with tinned fruit and veg and meat. But all of this is banned. I must eat every couple of hours substantial food for my medication or risk getting very ill from taking the pain meds. I cannot manage my meds on three meals a day only - it's impossible and can't function on such drastically reduced medication.

The dr I saw told me I must get proper diabetic meals delivered from social services, but that's far too expensive, not to mention they're frozen and I don't have a freezer and no money or space to get one. I get ESA and DLA but that money is spent on my other disabilities and taxis, I don't have any left over for expensive foods.

Now I'm finding myself fainting even more. I was told by dr and pharmacist it's impossible for this to happen due to the metformin but that's the only thing that's changed, I've been trying to follow the diet but I'm feeling really weak and ill, my blood sugar is showing as low (which I've been told is impossible). The leaflet says not to radically change diet but the dr said I must immediately. I'm on medication the leaflet says I shouldn't take but dr says to.

I don't understand and I'm really scared anyway (told s lot of horror stories of how it's all my fault for stuffing my face and getting fat), today I was humiliated by a pharmacist when I went to buy rehydration salts which I need because it helps keep my blood pressure and heart rate elevated, and the pharmacist was gloating how they'd been telling me for years I must have diabetes really and was in denial because I'm so fat (actually I've had regular tests so wasn't before). The cause is deterioation in another condition and being prescribed an overdose of steroids for a year (which caused damage).

I live alone. No friends or family. I'm totally alone and can't afford the expensive foods in the diet. I can't afford a carer either. I just don't get enough money to cover all my needs, for example I must pay for private physiotherapy as I've had the maximum allowed on the NHS (that's £70 a session) and almost £200 a month on taxis as can't walk - that's another thing I'm supposed to begin exercising as well and can't due to disability.

I don't have any consultants or specialists anymore because I cannot travel due to disability,Mir just isn't an option for me and now I'm feeling really dizzy and unwell on these tablets.

I'd appreciate any advice anyone might have. Im already distressed at the deterioation in my other condition and it marking me becoming even more disabled, and, now being told this is my fault and I must only have three meals (which would mean going without my pain relief which I take every couple of hours even at night) and expensive foods which I can't afford I'm really struggling.

I get treated badly because I have mental health problems (as well as physical) and am always hearing about how it wouldn't happen if I had diabetes but honestly it's exactly how I'm being treated.

 

[becca19962014]

Horror stories as in I'll lose limbs and die.

 

[Northerner]

Hi becca, welcome to the forum 🙂 I'm so sorry to hear about the difficult situation you are in, I can understand it must be very overwhelming for you You say your blood sugar is showing as low - what sort of numbers are you seeing? Are you testing before and after eating?

Regarding diet, I appreciate your difficulties with things like expense and cooking, so the main focus for you should be the amount of carbohydrates in the things you eat and drink (carbs are things like bread, potatoes, rice, pasta, sugar, things made with flour etc.). The carb amount should be indicated on packaging, and it's helpful to write a food diary so you can get a good picture of your daily carbohydrate consumption. Carbohydrates are what will raise your blood sugar levels the most, and the quickest, so try to keep these to a moderate to low amount. Don't be afraid of fatty items - despite the 'low-fat' advice that has been given out for many years scientists are now concluding that it may not be as bad as they first thought, and it is actually over consumption of carbs that is the main problem! 🙄

Have a read of Maggie Davey's letter and see if it helps you to understand how your diet can be improved to help with your diabetes - there may be some simple changes you can make that will make a big difference 🙂 Do ask us if there is anything you are unsure about, there's a lot of friendly people here with lots of knowledge and experience and we are happy to help.

Don't feel you have to change everything overnight - there's a lot to learn and take in and we are here to help and support you, so you don't have to feel you are on your own 🙂 As for the horror stories - yes these things are horrible, but you've already shown how motivated you are to avoid going down that route by joining here. Complications are not inevitable, although the risk is increased for people who ignore their diabetes, which clearly you are not doing! 🙂

 

[becca19962014]

Thankyou.

I was told not to test, but I have been when feeling ill today and it's been showing as 2 or 3 on the monitor, this has been before food, I feel better if I eat something but I'm confused by that. I'm needing to eat every two hours for medication so it's within two hours of having something. She said the test (a special one that measures glucose properly over two months) was 7 and that was a really severe reading so must stop anything with sugar or processed immediately and cook fresh everything. I've been monitoring randomly for almost two years (four times a month), my fasting levels have always been low, two hours after were 4 to 5. It's a recommeded monitor for diabetics so I'm confused at this severe reading I now have. I'm worried it's not right (though dr says its accuracy is guaranteed, it was done a month ago and before I changed my diet) and I worry the meds are pushing my blood sugar too low causing problems for my other conditions - I've been told that's impossible but I'm really worried as the leaflet says it is possible.

I think the problem I have is the diet I've been given is just too expensive for me to follow - it's about cooking from scratch and organic fruit and veg and fresh meat and nothing processed. I simply can't afford that, never mind a carer to prepare/cook it. The diabetes has been caused by a severe deterioration in another condition which is life threatening in the short term and I'm struggling emotionally with that a lot.

Carbs are all I eat because they are cheap, I buy end of day at the shop for the next day as can't afford full price, and I cant pay for a carer on top of food. I've been eating jam sandwiches for example worh cheap bread and jam between meals (I piece of bread small amount of jam). I can't tolerate most brown bread. This is my main problem and why dr told me to only eat foods from the diabetic menu from social services but these start at £6.50 for one meal,mi have £25 a week for food that's impossible., I must have a chest freezer as they're frozen (I've no room for one or money to run one I don't even run a fridge every day as I turn off electricity) I just cannot afford this extra expense, the dr said I could get extra benefits but there are no extra benefits and with universal credit my benefit will halve as disability premiums have been abolished! I promise I'm not being irresponsible but don't know how I can manage this when I'm supposed to eat carbs to line my stomach to stop it bleeding when I have my medications. Obviously I can't do both.

I can't have fatty items because I have IBS and difficulties digesting fat, I can't have a lot of herbs or spices or anything with seeds. I live rural so things like brown pasta are horrendously expensive. I have done a food diary before but as I need to be able to use my tablet to keep track it wasn't very good - I can't write.

I'm not able to exercise either.

This was the point the doctor got really, really angry with me telling me I would lose limbs and die. I already have severe depression and can't tolerate medication for that (I was hospitalised with uncontrollable seizures and told to stop it immediately).

The dr mentioned a course but it would cost me over £200 in taxi fare to go so I can't.

I'll have a look at the link you posted.

Thankyou for replying, and, being kind to me.

 

[Lucy Honeychurch]

That all sounds very difficult
I hope someone comes along who may be able to advise/help you.

 

[becca19962014]

I have had a look at the link. I'm really worried about this. I can't exercise with my conditions. Even walking is a problem (I've no cartridge left in most of my joints and they dislocate very easily, the more I move the more injuries I get). Food most of it is from the bargain aisle - big problem getting a GP to understand my financial limits especially with the way my benefits are being handled - I reapply, get turned down, appeal (money stops during appeal), win appeal and then get sent another form to reapply, so I've never really got any money. I lost my credit cards and overdraft last time so I'm reliant on community projects or food bank for help and, the food they give is things like tinned ham/other meat/pasta/baked beans.

Aside from the diabetes I've the other worsening condition that's worrying me.

I noticed in the link that diets should change gradually? I was told to stop sugar immediately and ban it from my diet. Part of the problem with my autonomic illness is blood pressure and heart rate aren't stable at all and the only thing that worked is on the banned list (rehydration sachets). When I've been admitted following collapse my blood sugar has been around 2 and I'm always accused of not eating anything but that's not true.

I rang NHSdirect the other day and they seemed to think with minor changes for now I should stick to the diet I'm on (I was honest about that) because the medication is for that diet not no sugar as that could make blood sugar very low.

 

[becca19962014]

Thankyou for reading and replying Lucy. I appreciate it!

 

[Maz2]

Oh my goodness Becca I feel so sorry for you. It is certainly no use the doctor shouting at you. I really don't understand why they treat people like this.

I don't have much experience with this but it sounds as if the Metformin is keeping your blood sugars under control which is a good thing. Is there a Diabetic Nurse you could see at your surgery? Could your GP refer you to a specialist as, clearly, you need help with your diet. It is no use saying "don't eat this and don't eat that", they need to help you. I have to admit all I have to worry about is lowering the carbs as I am pre-diabetic but, with all your problems, I don't know what I would do.

I must admit I do not buy organic fruit and vegetables. It is not always possible anyway. Are you able to eat chicken? Perhaps you could buy some skinless chicken fillets and put some vegetables with them or some salad. Also packs of salmon fillets, haddock fillets or something like that. They may last you a few days. I buy a pack of salmon fillets and they last me a week. Perhaps you could get some packs of fresh vegetables. I have bought a few lately that have perhaps broccoli and cauliflower florets in them, stir fries etc. They tend to be cheaper than buying all the vegetables individually. I get mine from Tesco but I know Lidl and Aldi are supposed to be cheaper. If you are rural I suppose it will make life more difficult though unless you could order on the Internet. What about eggs? They are very nutritious.

It is certainly a problem Becca that the healthiest foods are the more expensive ones which is ridiculous to me when they are preaching all the time to eat more healthily.

Can you eat pulses? If you buy dried ones and cook them for the required time then a pack will last some time.

I don't know if this is any help. I am not a dietician but am just trying to think what I eat. I have to admit though that, whilst I am not well off, I am not on a restricted income like you are and have a lot more leeway with my food.

I hope some other more experienced posters come on here to help you.

I know this may go down like a lead balloon so to speak as you are struggling financially but it may be worth getting hold when you can afford it of a book called "Reverse your Diabetes Diet" by a Dr David Cavan who is a specialist in Diabetes. He does lovely food and they are low carb. Michael Moseley's Blood Sugar Diet Recipes is also good but I don't know how this would fit in with your budget.

 

[Vicsetter]

You paint a very distressing picture, Becca. I find it appalling that a GP should even get close to shouting at you, they are there to help, not criticise.
One point I would like to make is that there is no dietary requirement for Organic foods, ordinary food is perfectly acceptable and cheaper by a long way.
How are you on salad? i have a salad for lunch everyday varying between Ham and salmon (half a small tin), but you could have tuna for instance which is cheaper. An iceberg lettuce is around 45p these days and taking 2 leaves for lunch makes it last several days.
You should not take more than 4 500mg Metformin tablets a day so adding one a week should only be for 3 weeks. With the readings you are getting, I would question whether you need Metformin at all. A Type 2 diabetic shouldn't normally get reading of 2-3 mmol, if it happens again can you get to A&E at your hospital and get it looked at by a specialist, as it sounds as if your GP is not taking you seriously or is out of their depth.
Damage is caused by high blood sugar levels, which you don't seem to have so I don't see why the GP should be threatening you with loss of limbs.

I would suggest that you eat what satisfies you and you can afford and doesn't make you feel ill. If the GP doesn't want you to test then just pretend you are not testing, it is an unreasonable request from the GP. You should be pushing for a consultant to examine your whole problems and with luck arranging some kind of social service support.

Good luck

 

[Jangles]

Hi Becca,

I'm sorry I don't have any advice but I just wanted to say hello and to say I was very saddened to read what the doctor had said to you. How unhelpful and I don't understand the advice to eat organic as Northerner said it is about reducing carbs to manage glucose in the blood not switching to organic food.

It sounds like you would benefit from some dietary advice in relation to your health conditions and medications. The other thing that comes to mind, and I hope I'm not being offensive, but you mention that you are on a tight budget so I wondered if there is any dwp entitlement as you require a diet for your health.

 

[becca19962014]

Thankyou for the replies.

I have the maximum benefits I can get at the moment. It's very unlilkey I will get pip (being transferred now) so I'll be losing my DLA amount and disability premiums which is a massive drop. I can't work but the DWP keep refusing me ESA and it's a never ending cycle of applying, appealing, applying etc.

The only supermarkets I can get to are Iceland (which I've been told not to buy food from) or co op which is extremely expensive or small newsagent type of shop. Co op and newsagent have value foods but they're designated 'c**p' by dr. They were really set on specialist diabetic foods from social services but they're out of my price range.

I can't prepare vegetables. I can't use my hands, I've minimal grip - I can't chop food or cut it up or cook it. I collapse in heat so cannot cook. Hence reliance on foods from Iceland which can go in oven and be left. I can't cook on hob as black out. No room for microwave.

I can't get to a specialist or specialist nurse or hospital - that's how rural I am. I rang the out of hours GP tonight about the blood sugar test this evening and they said not to increase the medication and to eat normally and sensibly and get my blood test redone as suggested mid November. They think the combination of very strict diet and meds is making it too low and due to my other conditions that's a major risk too. So, the plan is I'm going to try eating normally but checking values on packets and reducing but not drastically like the diet. They did say its rubbish that the meds cannot cause low blood sugar and the medication will automatically make it stay at normal levels. He thinks maybe the reason I was given the meds was because of my diet restrictions and also the damage due to my other conditions. He said I should be seen by specialists but that's impossible as there are none in my county anymore.

I am going to continue testing, the kit I have is suitable, I do the same for my blood pressure after being put on medication to magically ensure that was at the right level and ended up hospitalised at risk of a stroke as if went extremely high.

The NHS simply doesn't do multiple conditions, meds and needs. It picks one and concentrates on that one. I've lost count of the number of times I've been asked to choose which is worst and my reply us always the same - there's no choice, they all interact, by choosing one and only one there cannot be improvement because the others will make it worsen anyway. There are no specialists for my other conditions in Wales and the Welsh Assembly won't pay for me to be seen by specialists in England without referral from specialist in Wales (spot the problem there!!).

I hope this has helped explain my situation better. I'm exhausted so I'll try and come back tomorrow. I do hope this makes sense.

I really posted to thank you all for being kind and not blaming me for this, it means so much.

 

[becca19962014]

I meant to add there's no supermarket deliveries here so no other options than the shops here.

 

[Maz2]

Becca - you say you cannot chop up food due to disability. Are you entitled to Attendance Allowance?. My Dad in Law gets it - admittedly he is 84 but it pays for the nurse to come in to give him his medication as he forgets or cannot be bothered to take it - we are not sure which. You can get it when you are on your own. You may only get the lower amount but it would help towards the social services charges for meals I thought.

 

[becca19962014]

Attendence allowance is for over 65s only. I get the maximum I'm allowed in benefits already. It simply isn't enough to pay for that help as well as other needs.

At the moment I get ESA support group, disability premium and DLA. However, I'm being forced onto PIP but without access to the medical and no medical evidence to support my claim (I must have had treatment for several months before I can put s condition on the form) I'm extremely unlikely to get it which will mean I also lose the disability premium. I need to top up rent, and my DLA goes on taxis and private medical treatment which isn't available on the NHS anymore which I need. I'm really frightened about losing it or getting low rate which means I lose the disability premium as well it's extremely unlikely I could get enhanced.

 

[Ditto]

Hello Becca, I'm so sorry for your troubles. Somebody needs to help! People not struggling to survive on benefits have no idea, I've always felt this. To have a chronic condition as well is horrendous.

 

[becca19962014]

That's the problem I have three conditions already that are chronic. The DWP assess needs based on one condition only, despite what some people think (and I don't mean people here!) you don't get more money because you have more conditions!

I got my new monitor yesterday and my readings are awfully high. I don't understand how without the metafomin they were relatively stable but now on it are all over the place!

 

[mikeyB]

Hi Becca, it's not the case that the DWP only assess needs on one condition. They don't even consider the diagnosis of what causes your multiple problems. They just want to know about your day to day difficulties in living and in your mobility problems, whatever the cause, and from what you say you shouldn't have much of a problem transferring to PIP. And also, from what you say, the diabetes will make no difference to that, so you won't need any more than a GP report which they will request. Don't worry about that.

 

[becca19962014]

There's no help with benefits here, nothing at all, so no cab, no welfare rights, nothing. so I'm basing that on what Ive heard from others at the disability group I got to previously (can't anymore), the assessment centre is over two hours away since they closed the nearest and I can't cope on any level with visitors, I only have a bedroom, no room for another person. In my county there's less than 200 people on unemployment benefits - in the whole county, the majority failed the DLA to pip transfer tribunal which here means going to court.

I know someone with a brain tumour who lost everything when transferring and she's far more disabled than I am - incapable of moving without electronic wheelchair or cooking or washing at all. They assessed her able to move, do a sandwich which they classed as a meal and wash her tummy - she went to appeal and lost.

The GP won't do a report even if it's requested. Theyve already done several this year after I lost my ESA twice and won't do more because they consider it a waste of time as say its 'bloody obvious' I should be in support group and on high rate care/mobility indefinitely. But they don't understand, at all, it's not that simple and that's not an option anymore and the DWP can reassess when they want.

Anyway, in other news, I'm doing a fasting reading in the morning and one before evening meal to keep track.

 

[Bubbsie]

There's no help with benefits here, nothing at all, so no cab, no welfare rights, nothing. so I'm basing that on what Ive heard from others at the disability group I got to previously (can't anymore), the assessment centre is over two hours away since they closed the nearest and I can't cope on any level with visitors, I only have a bedroom, no room for another person. In my county there's less than 200 people on unemployment benefits - in the whole county, the majority failed the DLA to pip transfer tribunal which here means going to court.

I know someone with a brain tumour who lost everything when transferring and she's far more disabled than I am - incapable of moving without electronic wheelchair or cooking or washing at all. They assessed her able to move, do a sandwich which they classed as a meal and wash her tummy - she went to appeal and lost.

The GP won't do a report even if it's requested. Theyve already done several this year after I lost my ESA twice and won't do more because they consider it a waste of time as say its 'bloody obvious' I should be in support group and on high rate care/mobility indefinitely. But they don't understand, at all, it's not that simple and that's not an option anymore and the DWP can reassess when they want.

Anyway, in other news, I'm doing a fasting reading in the morning and one before evening meal to keep track.

becca...I won't repeat the advice others have given...your circumstances are horrendous...as for your GP & the Pharmacist...absolutely unacceptable to speak to anyone in that way...I think you should give the DUK helpline a call...they would be aware of any other help you could be entitled to...or agencies that could assist...rather than take advice from your disability group...who are no doubt are well intentioned...but certainly not experts in that field...call DUK see if they can offer you any assistance...their number is 0345123 2399.