Diabetes & Mental Health

[Martin.A]

Interesting report that many of us can relate to, I think:-

Diabetes impacts the mental well-being of 3 in 4 people with the condition

A new global survey for World Diabetes Day reveals that diabetes impacts the mental well-being of 3 in 4 people living with the condition.

idf.org

 

[everydayupsanddowns]

Thanks for sharing @Martin.A

 

[Ieazo]

Hmmm doesn’t mean the NHS are very helpful when we struggle though. 2 and a half years ago I called my local NHS diabetic specialist nurse team, I was struggling something silly and the stress of it had me in a loop. I’d struggle to get my blood sugar to stay down, stress of constantly checking and finding it wasn’t doing what it should and my body wasn’t responding to insulin like it would normally kept making it worse. I have a few lipo’s which can complicate matters and I’m running out of viable injection sites. I was promised an insulin pump and additional support but here we are 32 months later and despite much chasing up and attempts to engage the team responsible it’s been nothing but radio silence since July when I was assured I would have another appointment……never happened!

There are times I wonder if it’s worth it, times I get so frustrated by my diabetes and the apparent lack of assistance despite claims that medical professionals are available for us to reach out too. I hate getting ill, I hate my diabetes contributing too being ill either directly or indirectly. I hate that I can’t just be me, I always have to think about blood sugar and make adjustments…….its too tiring sometimes.

 

[everydayupsanddowns]

I get so frustrated by my diabetes and the apparent lack of assistance despite claims that medical professionals are available for us to reach out too. I hate getting ill, I hate my diabetes contributing too being ill either directly or indirectly. I hate that I can’t just be me, I always have to think about blood sugar and make adjustments…….its too tiring sometimes.

Sorry to hear how difficult you have been finding things, and about the delays in getting started on pump therapy.

It sounds like you are experiencing some Diabetes Burnout / Diabetes Distress - which is increasingly recognised as a serious outcome of living with T1 diabetes long-term

What is diabetes distress and burnout?

Diabetes distress is what some people feel when they’re overwhelmed by the relentlessness of diabetes. This can lead to diabetes burnout. The way you react to things and the emotions you feel can vary for different people. You might feel frustrated, guilty, sad or worried. Sometimes you might...

www.diabetes.org.uk

 

[Ieazo]

Yeah I know I am but despite claims that support is available it’s not in my experience.

I’ve always been minded that diabetes shouldn’t stop you from doing anything you want to do, you can do anything if you can understand and adapt to the situation and/or environment. Increasingly these days I find myself at peace that if I make a mistake it’ll all be over. In some ways that would be a huge relief, but it’s those I’d leave behind and the effect that would have that keeps me putting in the effort to get things right and have a contingency plan when I venture further from civilisation.

 

[rebrascora]

Hi @leazo and welcome to the forum.

Really sorry to hear that you have been struggling without any support, but I am so pleased you have come to the forum because it can be such an enormous help and support to compare notes with others also battling their diabetes challenges and sharing tips and tricks which can help you win little victories or make it seem less overwhelming as we all know it can be from time to time. There are lots of very experienced people here and some have gone through burnout and will be able to share the things which helped get them through it. Obviously we can't physically get you a pump but you can learn lots about them from others here so that when you do get your appointment you will be able to have an informed conversation and be prepared to fight your corner with evidenced points to help persuade your consultant to put you forward.

Are you currently under the care of your GP or a consultant at the clinic? Who do you have your annual reviews with?

 

[Ieazo]

Appreciate the welcome but tbh I’ve got a very good handle on my diabetes, but just like everyone else who is T.1D when it starts misbehaving it can be very frustrating.

I’ve had many appointments regarding a pump however the last one was March with a promise of a further appointment in July’24 which never happened and it’s been radio silence when I’ve tried to chase it up. I’ve given up on getting a pump, it would have been an excellent way to get some relief from the constant counting and dose calcs. However since I’ve been let down time after time I figure the only person looking out for me is……me. The NHS specialist nurses don’t appear to have the depth of knowledge they should about a condition they are supposed to specialise in. I understand all diabetics are different and we must get to know our bodies and how they behave. After almost 20 years T.1D I still can’t figure out how to counteract the Dawn phenomenon with the specialist consultant suggesting the only possible solution would be a pump but it would seem that despite this others within the NHS have decided I don’t need one.

There is nothing good about being diabetic, poor control will kill you, tight control might kill you, a mistake or miscalculation could kill you or a lapse of concentration might kill you. Failing that long term health issues caused by diabetes will eventually erode your quality of life and gradually prevent you from doing things that give you pleasure until all you are left with is existing, no thanks it’s not for me I’ll be checking out long in advance of that stage.

 

[Ieazo]

Sorry, I should never have signed up or posted on the forum…..nobody wants to hear my whinging. I honestly don’t think there is anything anyone can say that will change my perspective. After being let down by the NHS for over 30 months it is clear to see that the support they claim to offer is not available and we must manage our condition ourselves including being aware of burnout and how to struggle through. If admin want to delete these posts then I understand and don’t mind as I don’t feel they will help anyone else anyway.

 

[rebrascora]

@leazo When does your DP kick in and which basal insulin do you use? Just wondering if you have tried split dose Levemir along with a CGM to perhaps try to balance your morning levels more effectively? A faster bolus might also help if it is more a Foot on the Floor response that you get, where your levels rise sharply as soon as you get up rather than a steady rise from 3am.
Sometimes getting the right basal with the right profile and taking it at the right times of day to balance it's peak of activity with your needs, can make a big difference and now that we have CGM it can be very different to when we were floundering about in the dark with the odd finger prick and trying t figure out what was going on in between.

I am not sure how much you know, but pumps still need you to carb count and from what I understand, in some respects that carb counting has to be more accurate because you haven't got excess basal hanging about to mop up any inaccuracy. There can be a lot of tweaking of settings required too, so it isn't exactly less work at least in the first few weeks and months. That said, most people who get a pump would not go back.

Did you consultant agree to put you forward for a pump and do you know how you qualify for one under the NICE guidelines. Being able to prove that you qualify under the guidelines can be an important step in getting your application approved. Many people here on the forum were refused the first and sometimes second time, but by putting together evidence of why they qualified helped to get it pushed through eventually. Yes, there are some people and indeed some areas where getting a pump is easier and sometimes getting a referral to a different clinic is the answer if you have hit a brick wall at your current one. So, don't give up although I appreciate that when you are feeling worn down by the system and burnt out by the diabetes it can be really hard to keep fighting. Have you had a DAFNE course? That can sometimes help you get a foot in the door as the educators will sometimes advocate for you if they see a real need.
Anyway, just a few thoughts that might give you a possible way forward.

 

[rebrascora]

Sorry, I should never have signed up or posted on the forum…..nobody wants to hear my whinging. I honestly don’t think there is anything anyone can say that will change my perspective. After being let down by the NHS for over 30 months it is clear to see that the support they claim to offer is not available and we must manage our condition ourselves including being aware of burnout and how to struggle through. If admin want to delete these posts then I understand and don’t mind as I don’t feel they will help anyone else anyway.

Hey, please don't go or apologise. Part of the function of the forum is to let us blow steam in an environment where other people understand and sympathise. It is incredibly tough at times, especially when you go through those spells when it isn't playing ball nicely and the goal posts keep moving and you are struggling to keep your head above water with it. We all understand how frustrating and wearying it is.

 

[rebrascora]

As regards pumps there is a school of thought that by another few years time we will all be offered pumps, in the same way that we all have access to CGM now, so it maybe just biding your time a bit longer. Personally I wouldn't want one. I am a bit like that with cars too. I like to be in the driving seat deciding what gear I want to be in, not the car!

 

[Wendal]

Diabetes isn’t just a physical challenge, it takes a mental toll too. It’s good that people are starting to recognize and talk about how mental well-being is affected. It’s about time the conversation included both the physical and emotional sides of managing the condition.

Agree Stellar in my diabetes talks I always say the biggest challenge following diagnosis of diabetes is the challenge in managing the condition rather than the available medication.
The relentless nature places a very big burden on those individuals and it is easy to understand how difficult many find the journey.

 

[Ttelmah]

The challenges of the medication, were a lot more in the past.
Historically I started with type 1, when we still had to re-use needles. Testing was urine only in a test tube with a little fizzy pill. Certain infections made this stop indicating. Makes the current situation seem really good!...
The big steps forward have first been blood glucose testing - again the early systems were very slow and fussy compared to modern stuff. Then leaps forward in the insulins themselves. Most recently, CGM, and pumps.
The key thing is to be loud. If you are having a problem with part of your treatment, make sure somebody knows, and really does look to see if something/somebody can help. There are a lot of diabetics out there, and somebody will have had the same or similar problems, so talking about it here is good, but really do make sure that your clinic understands. Write a letter. Even if you don't use it, putting everything down in text, may allow you to express things more clearly, and work out for yourself where the deepest part of the problem is.
Take a deep breath. Possibly even try a little Yoga, and try to keep smiling.
🙂

 

[Ieazo]

Hey, please don't go or apologise. Part of the function of the forum is to let us blow steam in an environment where other people understand and sympathise. It is incredibly tough at times, especially when you go through those spells when it isn't playing ball nicely and the goal posts keep moving and you are struggling to keep your head above water with it. We all understand how frustrating and wearying it is.

I appreciate you saying so but I feel like I am just whinging. I used to be like you, if it were a car it would be manual so I have the control. Unfortunately my overnights are simply not manageable using pens as I would need to get up twice a night to get things to stay sorted until morning. I have tried various basals including levemir & tresiba however I find a split dose of Lantus works best for me and I know the peaks and troughs profile so I can consider this when dosing. I have previously done a carb counting course, last March I was asked to go on another carb counting course however I didn't have any holidays left to use for it so I asked if it would be ok not to attend since I had previously done one and I carb count every meal. The NHS were not happy but agreed stating I would have to demonstrate I could carb count. I kept a very accurate diary of meals, carbs, dosing and comments. At my appointment three specialist nurses spent over an hour desperately trying to pick fault with the data I had collected and presented to them but were unable to do so, they seemed disappointed by this. Co-incidently my pump application paperwork within the NHS disappeared into the ether shortly thereafter and it wasn't until I chased it on later in the year I was told I had to go through the inital part of the process again. I did so and again spent months collecting data so that I would be ready to start pump therapy. To get the best result the more accurate data you have the better, and if you can collect solid data and results for various situations then you can use this to set up your pump.
In June'24 I was told that I was one of ten standard priority patients approved for an Omnipod system, in July I was told that they were awaiting a funding decision which would be W/C 22nd July 2024. Since being informed of this I have heard no more. Is it any wonder I feel like I am on my own with this and I am ready to give up on the NHS being any help whatsoever.
The overnight spikes come as a combination of steady rise from 3am and also a sharper spike when I wake up and start moving. Most mornings my BG is so high by the time I am getting up I feel utterly hellish and it takes a few hours to get the BG down and start to feel ok. This is the case even if I go to bed with a stable BG of 4.5. Every so often I can get a night where the 3am doesn't happen and it is only the sharp spike when I get up but these are rare and despite years trying I still can not work out the variable causing the 3am rise.

 

[Ttelmah]

Well outlined.
Does your GP liaise with your diabetic clinic?. Having a GP who is prepared to fight with you is a very useful tool. The night really is the worst time. The low point usually is between about 2 and 3am, and rising after this is very normal, as is the tendency to shoot up when your body gets ready to rise. Have you got a local radio station?. Or a local paper?. Consider seeing if you can get one of their reporters to take up your case, and raise some hell for you.

 

[rebrascora]

Really sorry you have had such a runaround and that you feel like the nurses were looking to pick fault with your efforts.
i wonder if you clinic have paused any new pump starts in order to enable them to train staff on the closed loop system and then get as many patients who are already pumping onto a closed loop as possible before they start new patients on pumps. I think this approach may have been adopted by a number of clinics. I am not sure that this is a good or fair policy but hopefully you will get word about your pump start soon as it does sound like you have jumped through all their hoops but it is just that the training for and implementation of looping has been given priority.

I used to get a really strong Foot on the Floor response which would usually rise 6mmols in the first 40 mins of getting up, meaning I then had to wait well over an hour and sometimes over 2 hours before breakfast. Since moving to Fiasp (from Novo not so Rapid 🙄 ) and most importantly injecting a couple of units for FOTF before I get out of bed and if I am having breakfast I include my breakfast bolus at the same time and then I have about 30 mins to get up and washed and dressed and throw my breakfast together and be drinking a coffee before I eat and that has really sorted my morning issues and now I often get a small dip on my graph instead of that big spike I used to get and no long delay for breakfast anymore.

 

[Ieazo]

Unfortunately no, the GP's here are worse than being a man down. Previously I would get appointment letters to a clinic from both the hospital and the GP surgery and would regularly have to cancel one since it was within weeks of the other. Then our local GP surgery lost a GP to retirement and another, I believe, went elsewhere. Now there is a shortage of GP's and the practice is really terrible to deal with so very little hope for any assistance coming from there.
The idea of raising some hell made me smile however it appears to me that I have already been punished by the NHS for actually being able to carb count accurately, although I can not prove this it all seems a bit too coincidental. Can you imagine what might happen if I were to 'raise hell'? It's just not worth it.
I don't 'feel like' the nurses were trying to pick fault, they were. When they thought they had found an error they were all cheery and smug and said I would now have to go on the carb counting course, until I pointed out that in my comments it noted that I had only consumed half of the bottle, they genuinely looked like their day had just been ruined. Although I can not prove it with hard evidence, these nurses were tasked with putting me in my place after I asked if I could avoid the carb counting course due to a lack of holidays. They couldn't find fault with my carb counting so had no reason to delay or stall my pump application yet immediately thereafter it somehow dropped off the system? As if dealing with diabetes isn't enough of a bind without having to deal with petty, unprofessional, inept idiots who have the power to do as they please.

If I didn't think taking on a huge challenge of proving what has gone on would cause me significant stress and likely would be detrimental to my BG and health in general then I would get after it. Sadly the truth is that it would do nothing, it could further impede my chances of getting onto a pump and cause me nothing but stress that I could do without.

In my experience the NHS is a lottery and if you manage to get the assistance you require then you should think yourself lucky.

 

[Ttelmah]

Unfortunately a lot of stuff, particularly from big companies and operations like the NHS, have been lured by managers claiming they can save money by having things like AI's handle routine calls, and have got rid of more and more staff. The setups when people work from home have not been properly arranged, so quite basic things take hours, or paperwork gets lost.

I just had to try to contact Nat West about a bank problem. Waited for nearly two hours on the phone. At last got to somebody, and my battery died..... It is enough to drive you mad.... At least that wasn't a health issue.

I had a problem recently with DVLA. For months, phone calls got "it's with our team". Doctor had sent medical OK. Eventually I logged an official complaint. Two days later I was contacted by the complaints team saying they could not find my paperwork. Fortunately I had kept everything, sent this, and it was sorted in under three weeks.
This illustrates why I think there is a need sometimes to 'raise hell'.