Help please UK

[Haggis1411]

Dear All,

I write to ask kindly for any help / advice you can offer. I was diagnosed in 1983 aged 6yrs old. I grew up in a living hell - as many did. despite this I made international recognition as an athlete, rugby player and weight lifter.
Working within the pharmaceutical industry I realise day in and day out what hell we diabetics live (type 1)
To the nuts of my commentary:
When you ask your GP/HCP/Nurse for help - do you get it? I have asked for years (10+) to be considered to be funded for an insulin pump. My HBA1C is never good enough... I injected nearly 40yrs to my body hundreds of thousands of injections, creating fatty tissue and slow release reserves. I’m struggling to survive.

anyways - I’m losing my sight. Left eye with advanced maculopathy and beyond intervention, my right eye has advanced retinopathy... spend a lot of time watching my babies/children as they sleep - as I fear I won’t see them much longer.
Carpal tunnel in both wrists means my long post will end. Pissing blood / ******** blood and really lost the will to keep being better. I was better served as a child - our support has died, and many deaths will follow. Minority only counts if you are vocal and making of history.
many advice, I’m throwing up due to high sugars again... thanks for reading

Edited by mod to comply with forum ethos.

 

[EllieM]

Hi @Haggis1411 I'm sorry you're having such a bad time (been T1 51 years here but I've been a bit luckier with my health).

It sounds like you need medical help asap. Do you have an appointment booked with your consultant and have you talked to someone about the blood?

Are you testing for ketones? Sounds like you might need to call 111 as vomiting and high sugar can be symptoms of a DKA.

 

[Jaylee]

Dear All,

I write to ask kindly for any help / advice you can offer. I was diagnosed in 1983 aged 6yrs old. I grew up in a living hell - as many did. despite this I made international recognition as an athlete, rugby player and weight lifter.
Working within the pharmaceutical industry I realise day in and day out what hell we diabetics live (type 1)
To the nuts of my commentary:
When you ask your GP/HCP/Nurse for help - do you get it? I have asked for years (10+) to be considered to be funded for an insulin pump. My HBA1C is never good enough... I injected nearly 40yrs to my body hundreds of thousands of injections, creating fatty tissue and slow release reserves. I’m struggling to survive.

anyways - I’m losing my sight. Left eye with advanced maculopathy and beyond intervention, my right eye has advanced retinopathy... spend a lot of time watching my babies/children as they sleep - as I fear I won’t see them much longer.
Carpal tunnel in both wrists means my long post will end. Pissing blood / ******** blood and really lost the will to keep being better. I was better served as a child - our support has died, and many deaths will follow. Minority only counts if you are vocal and making of history.
many advice, I’m throwing up due to high sugars again... thanks for reading

Edited by mod to comply with forum ethos.

Hi,

Sorry you've found yourself in this position. Been around the block a bit with T1 myself. (46 years.)
I find dealing with Endo's & wot not a little like dealing with mechanics? They don't drive my car. So any intermitant fault that wouldn't probably show up in th breif while a technition is looking at it may not show up.
So quite often there will be a difference in opinion.

I would urge you to to contact your GP & specialist or even dial the 111 help line. If only to sort out your immediate health issues.

What insulins are you currently prescribed?
At least, sitting down with your HCPs & going back to basics may help with relative BG stabilisation prior to the next step with pushing for pump funding..

Best wishes.

 

[ert]

I'm sorry you're having a tough time. After you seek immediate help from 111 or your diabetes team for the present, I recommend reading Dr Bernstein's Diabetes Solution for something different, which may help you find a way forward.

 

[coby]

Dear All,

I write to ask kindly for any help / advice you can offer. I was diagnosed in 1983 aged 6yrs old. I grew up in a living hell - as many did. despite this I made international recognition as an athlete, rugby player and weight lifter.
Working within the pharmaceutical industry I realise day in and day out what hell we diabetics live (type 1)
To the nuts of my commentary:
When you ask your GP/HCP/Nurse for help - do you get it? I have asked for years (10+) to be considered to be funded for an insulin pump. My HBA1C is never good enough... I injected nearly 40yrs to my body hundreds of thousands of injections, creating fatty tissue and slow release reserves. I’m struggling to survive.

anyways - I’m losing my sight. Left eye with advanced maculopathy and beyond intervention, my right eye has advanced retinopathy... spend a lot of time watching my babies/children as they sleep - as I fear I won’t see them much longer.
Carpal tunnel in both wrists means my long post will end. Pissing blood / ******** blood and really lost the will to keep being better. I was better served as a child - our support has died, and many deaths will follow. Minority only counts if you are vocal and making of history.
many advice, I’m throwing up due to high sugars again... thanks for reading

Edited by mod to comply with forum ethos.

Wow, I know absolutely nothing about Type 1 sadly so cannot offer any practical help, much as I would love to. However I do have to say that you are a hero in my eyes for having to cope with this from such a young age. I cannot even begin to imagine what you had to endure from that tender age. Please find the strength to take charge of your health again and push through this obviously intolerable stage you are in and GET HELP from the medics asap

 

[Rokaab]

When you ask your GP/HCP/Nurse for help - do you get it? I have asked for years (10+) to be considered to be funded for an insulin pump.

Whilst mine wasn't nearly so bad, it did take me 3 years and the consultant to retire for me to get a pump - in essence whilst my DN at my docs (she is very good) at my docs was happy to refer me to the hospital for a pump, the consultant at the hospital in essence said to me 'well I could see how it would help with that but we cant fund everyone and you're not as important as anyone else' - ok he didn't actually say that but it definitely came across like that, as soon as he retired when I saw the new pump specialist he said 'yes yes of course you should have one', so yes it can be very dependent not only on the hospital/CCG but also the actual consultant (if he hadn't retired I probably still wouldn't have one).

And yes I'm also a 40+ years as a T1 (1977), so I definitely know about the thousands and thousands of injections, the lipos and the blood testing machines that were more akin to torture machines.

I hope you do manage to get some help from your hospital/clinic soon

 

[Deleted member 45091]

Seen ya post and reply on mine it's a rough road ain't it,

 

[Deleted member 45091]

Just seen ya post it's a proper rough road, looks like ya going through it, long story short my advice is to contact pals, explain all your problems etc and your not getting the help then every thing gets logged down etc when they decide to take the ****, I've been to ae hospital ambulances etc many times this year crying in pain just to be fobbed off, just being passed around when my last hba1c was 99 just got a letter saying abnormal but normal for you, never ask for help but the services are dire, well after deciding not to inject the whole lot of Nova rapid in one go because that's how they make you feel, crying like a baby desperate for help to be not listened to or turned away, they do have the services the queen or Boris would not have to go through the **** some of us diabetics do, bottom line since pals have got involved I have personal eye doctors numbers that are there all the time apperently so god knows why I've been passed around the ae all the time, the diabetics team have actually came to me to meet me in the eye outpatients to discuss changing my insulin to a basal bolus, and to gradually bring my sugars down slowly as it could effect my sight if done too quickly, I've been asking for this sort of help for years while my diabetes has gradually got worse and only now with pals etc there staring to listen, many diabetics and others are going to suffer how the system is run, it's going to be who can pay gets the best treatment, my advice to you mate life's worth it without all the struggles, contact pals and get them on board get some of these ******* head rolling, your health and others shouldnt get to this stage to get help its stupid, iam just a normal 41 year old guy from Derby, let me just say this you are loved, keep ya chin up get pals on it and I pray your sufferings may soon pass, god bless mate

(edited by mod for language)

 

[Juicyj]

Hey @Haggis1411

How's your control daily - are you on basal/bolus regime so matching insulin to carbs eaten ? Do you take correction doses for high levels ? How do you monitor your glucose levels ? Are you trying very carefully to keep your levels in control ?

Getting a pump means jumping through some hoops, they don't hand them out as you have to demonstrate the ability to manage it so they can see you are benefitting from using one, it's a bit of chicken and egg and involves a good DSN on your side, your argument in getting one is that this would improve your quality of life, if you are already carefully managing your insulin and still achieving high levels then this also is a good reason you could be considered, have a look at NICE guidelines: https://www.nice.org.uk/guidance/ta151/resources/insulin-pump-therapy-for-diabetes-pdf-374892589

Remember that getting a pump isn't the magic wand to good control, you have to carefully manage the pump and tweak ratios, be prepared to do basal fasting tests and go through a period of pain with adjustments to achieve improved control and then on an ongoing basis keep an eye on ratios.

I don't want to sound like a killjoy but they are not for everyone and some experience great disappointment with them as they don't put the effort in, but used well then they are a massive game changer.

In your shoes I would be looking to get on DAFNE if you haven't already done this and to also get a libre or Dexcom if not already using them as these too are a massive help to keeping better control, shout out here if you need any support though as it's a lonely road when you travel alone with t1.

 

[Juicyj]

Hello @Haggis1411 - I haven't seen you online since you posted this thread, just want to check you are ok ?

 

[NicoleC1971]

I'd say to the OP and Danny from Derby that there's no other disease that puts such a burden on the patient as type 1.
You are crying out for support but your medical team can't tell you what to do because they don't have enough data to go on and can only advise you of the outcomes (too sugary with all that entails).
I like EllieM's analogy re the mechanics and your car (body):

• They perform basic checks (heart, kidneys, how sugary are you)
• They can offer suggestions on how to drive it to help it perform better and your fuelling regime
• They cannot drive it for you and whereas if you were driving a real car you would pretty soon learn bow to use the brakes, accelerator and gear change, type 1 isn't that obvious and certainly doesn't come with a personalised Haynes manual but you can work out how some things work.

In the current system (NHS) they don't have time to give you emotional support from the terrible emotions that come with diabetes that I've certainly felt e.g. anger, guilt depression, hopelessness and loneliness.

Therefore you have to learn these things maybe with family support if you're lucky enough to have that? You are more like a bespoke formula 1 car than a Vauxhall/Ford at this point.
You do have access to great tech at least (flash glucose monitoring) and once you have a rough idea of what is going on then three are devices that can automate much of the process. They will never ever be as good a a fully working pancreas of course you just wont' get away without knowing the stuff below then acting upon it consisstently as you already know but it is never too late to try again. I've lost part of my sight and don't want to collect any more diabetes complications on that bingo card.

• If I eat nothing all day long how much basal must I take to remain in reasonable range?
• If I eat 10g carbs how much fast acting insulin takes me back into range after 4 hours? (what if I eat fat or protein with it? does the type of carb eaten change that? Or the time of day?)
• What if I am active? How much does doing weights vs. walking raise or drop my bg?

I hope you can come back and tell us how you are doing. If you want to talk to an actual human I know Diabetes UK run a Careline and that some health authorities offer psychological support for people with type 1 who are struggling.

 

[ert]

I'd say to the OP and Danny from Derby that there's no other disease that puts such a burden on the patient as type 1.
You are crying out for support but your medical team can't tell you what to do because they don't have enough data to go on and can only advise you of the outcomes (too sugary with all that entails).
I like EllieM's analogy re the mechanics and your car (body):

• They perform basic checks (heart, kidneys, how sugary are you)
• They can offer suggestions on how to drive it to help it perform better and your fuelling regime
• They cannot drive it for you and whereas if you were driving a real car you would pretty soon learn bow to use the brakes, accelerator and gear change, type 1 isn't that obvious and certainly doesn't come with a personalised Haynes manual but you can work out how some things work.

In the current system (NHS) they don't have time to give you emotional support from the terrible emotions that come with diabetes that I've certainly felt e.g. anger, guilt depression, hopelessness and loneliness.

Therefore you have to learn these things maybe with family support if you're lucky enough to have that? You are more like a bespoke formula 1 car than a Vauxhall/Ford at this point.
You do have access to great tech at least (flash glucose monitoring) and once you have a rough idea of what is going on then three are devices that can automate much of the process. They will never ever be as good a a fully working pancreas of course you just wont' get away without knowing the stuff below then acting upon it consisstently as you already know but it is never too late to try again. I've lost part of my sight and don't want to collect any more diabetes complications on that bingo card.

• If I eat nothing all day long how much basal must I take to remain in reasonable range?
• If I eat 10g carbs how much fast acting insulin takes me back into range after 4 hours? (what if I eat fat or protein with it? does the type of carb eaten change that? Or the time of day?)
• What if I am active? How much does doing weights vs. walking raise or drop my bg?

I hope you can come back and tell us how you are doing. If you want to talk to an actual human I know Diabetes UK run a Careline and that some health authorities offer psychological support for people with type 1 who are struggling.

Wowers. What a terrific post. Thank you.

 

[EllieM]

I like EllieM's analogy re the mechanics and your car (body):

Great post and nice analogy, but I think it's @Jaylee 's and not mine.

 

[NicoleC1971]

Great post and nice analogy, but I think it's @Jaylee 's and not mine.

will get the hang of not speed reading, speed posting one day....

 

[Fairygodmother]

Hello @Haggis1411
We’ve not heard from you since your first post on this thread. How are you? Have you got some help? We worry, please let us know. Really really hoping that you rang 111 and are beginning to feel better!