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Opinions wanted from fellow type 1's

bellabella

bellabella

Well-Known Member
Messages
136
Type of diabetes
Type 1
Treatment type
Insulin
Seeking opinions from fellow type 1's.
We all have a lot to deal with on a daily basis to manage our diabetes adequately. If you had to pick, what is the ONE thing that you find the MOST difficult about your diabetes management? Is it the finger pricks? The constant injections? The Maths involved with calculating insulin doses? I know for me the list is long, but if you can single out one point at all that would be useful. I'm looking to do some research into this area, so I wanted to start by gathering some opinions first off.
Thanks in advance
 
The answer to your question is simple for me.
It is Balance.
By that I mean the balance of managing my diabetes without letting it take over my life. Testing, carb counting, dosing, pump changes are all a bit of a pest but making sure it doesn't take over my life is the challenge
 
Hey, this is an interesting topic. I agree in the many issues you have to compete with when managing type 1.

I will start with a little promotion. I recently got the Abbott freestyle libre, this is the single best thing I have had for good management. It’s a simple sensor on the arm and I use my phone to check blood sugars. Means it’s just one less thing I have to carry around and it so easy to get a trend of blood sugars. Before this the finger pricking was a real pain, being out possibly having to find somewhere to wash my hand etc etc.

For me it’s the huge variation in meals that are typically the same meal and the carbs can be different this makes it difficult to calculate an accurate does for the meal and typical end up taking an additional bolus later when my blood is still high. On the food topic is also pasta, you see the carb it says on the packet and again typically that is dry weight and doesn’t take into account the carbs lost when boiled.

Basically I think that the carb counting is a good idea and i will be continuing this method of management, however, it still has downfalls and could do with something to help calculate carb intake. There is a book detailing the amount of carbs in a food type and the portion size etc etc maybe a god app would be better. Most people carry an iPhone or android device on them now and I think we should try move into the era of smart phone management more.

Other than that I think everything is pretty straight forward when it comes to management!
 
I would say my biggest daily bugbear with having T1 diabetes is first thing every morning.
The having to acknowledge it and run through the routine of starting the day.
It’s the giving it that level of importance that frustrates me most.
 
bellabella said:
Seeking opinions from fellow type 1's.
We all have a lot to deal with on a daily basis to manage our diabetes adequately. If you had to pick, what is the ONE thing that you find the MOST difficult about your diabetes management? Is it the finger pricks? The constant injections? The Maths involved with calculating insulin doses? I know for me the list is long, but if you can single out one point at all that would be useful. I'm looking to do some research into this area, so I wanted to start by gathering some opinions first off.
Thanks in advance
Click to expand...

Hi bellabella,

Members post questions and respond with answers all the time, but if you intend to use this forum as a source of research information, then research requests need to be formally submitted and approved.

If you wish to take your research to this stage, then please drop an email to [email protected] and you will be sent the research request application form.

In the meantime, I’m afraid I can’t offer any insight since I am not T1, so I will leave the thread to those who are.
 
I'd agree that it is the balance between aiming for perfection vs. living the life you would lead if you did not have it. I;ve always tended towards the latter but this comes with a price.
For me, that price is guilt because it is a condition where a lot depends on your behavior but just when you think you've sussed it, you get a freestyle libre fail ! Out of range..Back to the drawing board each and every day!
 
bellabella said:
I'm looking to do some research into this area
Click to expand...

The paper below might be of interest, from docs in an area which has a very liberal libre prescription policy, it covers improved quality of life scores - being able to see bg levels moving lets us make more informed judgments about dosing, timing, corrections, so fewer wild swings, so happier patients!

DrluM98U8AAKZ62.jpeg

Screenshot_2018-11-09-14-58-22.png
 
Mel dCP said:
The relentlessness. The fact I can’t just forget about it for even a few hours.
Click to expand...

What @Mel dCP said.

I don't find the days monotonous because I food plan to counter that, have quite a few hobbies and still work part time (and the work is engrossing).

But yes - diabetes is always there, lurking. No such thing as grab a bite. Got to test, find out the carbs, do the sums, inject - then eat .......
 
For me, it is timing and the mental drain that diabetes has on it. Timing: getting prebolus right between the wait for food and the time for when the food digests, you literally have to be a mathematician and scientist for a good 20 mins to work out precisely, but sometimes it fails and I hypo. Diabetes does have a weight on my mental health and I am battling the wars it has brought on my life, so everyday I am thankful.
 
Testing is trivial (libre), hypos used to be a bit of a problem but alarms (miaomiao) have pretty much solved that, and injections have never been a problem. For me at the moment, the most tedious thing is managing sugar while exercising. You can't really stop long acting insulin, so I end up eating a lot.
 
Single thing I hate most about T1 - the hypos.... And I agree a cgm is a wonderful thing but I became allergic to the libre - has put me off cgms and also insulin pumps, as I fear having a needle permanently attached.

I should probably try the dexcom, though.


Blood testing, OK, injections OK, carb counting, ok(ish), balance (yes, that's an almighty pain specially if you exercise), but

the hypos, I hate the hypos
 
Well I have to be quite honest here, I have been type 1 for 35 years now. At first everything about having diabetes bothered me. Now, I just get on with it, I don't let it run my life, I don't spend time worrying about it, I don't moan about it. My biggest complaint at the moment is the fact that my CCG will still not supply Libre on the NHS, in fact I have now started a formal complaint against them.
 
Good question!
You never get a break from it.
You can do the same thing every day and get consistently different results
 
Balance, particularly when new tech is not always affordable or reliable and the fact that over time instability ( challenges achieving a state with no hypers or hypos ) become increasingly difficult to maintain.
 
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