First time Poster, looking for advice

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Rosusa

Rosusa

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Relationship to Diabetes
Type 2
Hello

I have had T2 for many years, first on Metformin and then combined with Glicazide. Went onto insulin a few years back.
Take 3 types of insulin, Trulicity, Nova Rapid and Toujeo.

Am unable to cope well with testing my blood sugar, so it is done rarely to the point of never, my insulin is administered ant do that either, have had somewhat bad experiences with the Diabetes Care For you Team where I live, primarily around access to their clinics, am in a power chair, and so have given tying to get support other than just being given my insulin with the hope I don’t have anything go wrong.

Would like to turn this around.

I did try to get a Free Style Libre blood testing kit some years ago from the NHS but got told wasn’t eligible even though I wasn’t able to test MY blood, had high sugar all the time and didn’t and still can’t adminiter my own insulin.

Anyone out there who can put me on a path to get get help/support?

Thank you.

much respect
 
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Welcome to the forum @Rosusa

Is it a fear of needles that is preventing you from taking your own blood sugars and insulin? There are ways to help with this if so.

Trulicity is not a type of insulin. It’s relies on your surviving insulin cells in your pancreas to work
 
Welcome @Rosusa 🙂 You say you’re in a power chair - do you have a disability? If so, is it the disability that means you can’t test your blood sugar or inject your own insulin? Sorry to ask, but it’s not clear from your post.
 
Rosusa said:
I did try to get a Free Style Libre blood testing kit some years ago from the NHS but got told wasn’t eligible even though I wasn’t able to test MY blood, had high sugar all the time and didn’t and still can’t adminiter my own insulin.
Click to expand...

Sorry to hear you’ve been having trouble accessing appropriate treatment and monitoring technology to suit your needs @Rosusa :(

The NICE guidelines were recently updated to widen access to Flash Glucose Monitoring, so you may be able to use these i. conversation with your clinic, depending on the reasons why you are unable to use a fingerstick BG meter?

Recommendations | Type 2 diabetes in adults: management | Guidance | NICE

www.nice.org.uk www.nice.org.uk

Continuous glucose monitoring​

1.6.17 Offer intermittently scanned continuous glucose monitoring (isCGM, commonly referred to as 'flash') to adults with type 2 diabetes on multiple daily insulin injections if any of the following apply:
1.6.18 Offer isCGM to adults with insulin-treated type 2 diabetes who would otherwise need help from a care worker or healthcare professional to monitor their blood glucose. [2022]
 
Lily123 said:
Welcome to the forum @Rosusa

Is it a fear of needles that is preventing you from taking your own blood sugars and insulin? There are ways to help with this if so.

Trulicity is not a type of insulin. It’s relies on your surviving insulin cells in your pancreas to work
Click to expand...
Hi,

thank you for the info about Trulicity. I just got told to take it along with other injection, i didn’t totally understand what it was, just assumed, “oh more insulin…”

My insulin and Trulicity are administered by my carers, i do have an issue with needles, so much so, I have had seizures when being canulated. Plus testing my blood sugar has a sh*t ton of negative memories for me, that I am still struggling with 20 or so years on.
 
Inka said:
Welcome @Rosusa 🙂 You say you’re in a power chair - do you have a disability? If so, is it the disability that means you can’t test your blood sugar or inject your own insulin? Sorry to ask, but it’s not clear from your post.
Click to expand...
I do have problems with my hands due to carpel tunnel syndrome, and yes, I am physically disabled, spinal cord tumour that is inoperable, i also have a lot of pain in my spine that is continual, so am on oramorph, weekly Butrans patches and I am prone to epileptic absences.
I have a fear of needles which have caused me to have severe seizures in the past, injecting myself is a no-no, I’d ratger go without the medication (yes, I know, stupid), as for the blood testing, that is even worse, I simply don’t do it, it causes that much mental stress, I just try to gauge how I am feeling.
 
Have you tried therapy/counselling to help with your needle phobia? I have a needle phobia and others here do too. For myself, I found I preferred to deal with the phobia myself (because I was in control so it felt less scary) but others have found outside support helps. There are also devices you can get that hide the needle. With fingerpricking choice of kit makes a big difference.

With your seizures, it’s obviously more complicated, but ultimately even if you only mastered the phobia partially it would be the biggest benefit for your blood sugar and your general health.
 
Rosusa said:
Hi,

thank you for the info about Trulicity. I just got told to take it along with other injection, i didn’t totally understand what it was, just assumed, “oh more insulin…”

My insulin and Trulicity are administered by my carers, i do have an issue with needles, so much so, I have had seizures when being canulated. Plus testing my blood sugar has a sh*t ton of negative memories for me, that I am still struggling with 20 or so years on.
Click to expand...
Do you carers understand your needle phobia? So they are more ‘careful’ about things?
 
Inka said:
Have you tried therapy/counselling to help with your needle phobia? I have a needle phobia and others here do too. For myself, I found I preferred to deal with the phobia myself (because I was in control so it felt less scary) but others have found outside support helps. There are also devices you can get that hide the needle. With fingerpricking choice of kit makes a big difference.

With your seizures, it’s obviously more complicated, but ultimately even if you only mastered the phobia partially it would be the biggest benefit for your blood sugar and your general health.
Click to expand...
sorry so late in getting back, been unwell and depressed. Diabetes related as usual. On a waiting list for therapy, no idea how long that will take, NHS. i can just about cope with carers giving me insulin, I’d not take that if I didnt care enough about my family to know they’d be devastated if anything happened to me. Yep, not exactly the bravest human in the world. Hence the reason I am trying to access the Free Style Libre, but the cost is the issue and my Diabetes Care 4 U Team are understaffed, overworked and don’t take into account that their offices might be wonderfully wheelchair accessible but getting to them is not, due to the lack of flat pavements and ramps. Hence them not being interested in seeing me as I cannot get to them, and no I can’t afford a taxi and no I don’t have anyone to take me.
Catch 22 at its worst.
 
Lily123 said:
Do you carers understand your needle phobia? So they are more ‘careful’ about things?
Click to expand...
Yes, my carers fully understand my hatred of needles, they work with me and I trust them but sadly the NHS don’t have the time or patience (not their fault) to deal with a person who has a seizure when having blood taken and then goes into shock, it’s a trial for all concerned. I’m lucky in many ways, so this isn’t a whinge, just looking for ideas, suggestions etc thanks.
 
Rosusa said:
sorry so late in getting back, been unwell and depressed. Diabetes related as usual. On a waiting list for therapy, no idea how long that will take, NHS. i can just about cope with carers giving me insulin, I’d not take that if I didnt care enough about my family to know they’d be devastated if anything happened to me. Yep, not exactly the bravest human in the world. Hence the reason I am trying to access the Free Style Libre, but the cost is the issue and my Diabetes Care 4 U Team are understaffed, overworked and don’t take into account that their offices might be wonderfully wheelchair accessible but getting to them is not, due to the lack of flat pavements and ramps. Hence them not being interested in seeing me as I cannot get to them, and no I can’t afford a taxi and no I don’t have anyone to take me.
Catch 22 at its worst.
Click to expand...
Regarding getting to them - could they order patient transport for you? Or if you are on eligible benefits to get public transport costs to hospital/clinic appointments refunded, then can they write a letter which says that taxi is the only appropriate transport for you? Then you could get taxi fares refunded by the clinic/hospital cash office. (Usually they refund a bit of petrol or public transport, but if they accept that taxi is essential due to time of travel or specific reasons like being unable to use public transport, travel costs for hospital appointments can repay taxi fares)
 
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