Uncontrolled for 16 years

[Ebony2102]

I have had type 1 diabetes for 16 years almost and since the day I was diagnosed I was told I'm insulin resistant so from then on I've had test after tests, change of medication, now finally my medication is getting stable I'm starting to see long term damage appearing. My bloods have never been level and I'm always running high and up and dramatically dropping, this has caused me to have retinopathy damage which I've recently had laser treatment for but now I'm getting numbing in my feet and its getting really worrying. Does anyone else have a similar life their living? Finding everything a struggle at the moment... HELP!

 

[52O342UOIF]

It's good that you've started to get control. By keeping your blood sugar in check you can reverse a lot of the damage already caused. Do you take insulin by pen/syringe? Maybe a pump/cgm combo could help you.

 

[Ebony2102]

I'm on Novo Rapid and Levemir and also taking Metformin, they are trying to refer me for the pump as I do fit the criteria, but I'm just learning to carb count as wasn't taught growing up. It's just really getting me down at the moment. Altho I see the medication is getting sorted, my control over my diabetes. They say don't let Diabetes control your life, but its not always that easy when you feel so rubbish aye :/

 

[52O342UOIF]

I'm on Novo Rapid and Levemir and also taking Metformin, they are trying to refer me for the pump as I do fit the criteria, but I'm just learning to carb count as wasn't taught growing up. It's just really getting me down at the moment. Altho I see the medication is getting sorted, my control over my diabetes. They say don't let Diabetes control your life, but its not always that easy when you feel so rubbish aye :/

I would definitely recommend you trying the pump, a game changer for many. Counting carbs isn't hard at all, you'll get the hang of it quickly. I always feel bad when my blood sugar is high, going around with it a long time will take it's toll. You'll probably feel a lot better once you're blood sugar is stable.

If you haven't it might help to go on a diet with less carbs, there's a nice subreddit with recipes called Keto.

 

[Ebony2102]

I've tried dieting, I've tried everything. The only problem is my hypos start when my blood sugar reaches 7 or below, but I have to wait until its below 4 to treat it, its a nightmare, being high is okay for.me, I think you get immune to the feeling after this long, but thankyou for your advice, I will deffo push for the pump as it seems my only option left. I've given my ratio so I'm trying to carb count now, but very hard to regulate if I haven't got my carbs n cals book with me.

 

[Ebony2102]

I have an appointment now in a couple of weeks about the numbing... Fingers crossed!

 

[Sucre Bleu]

I would suggest getting the pump as soon as possible, I was keen to get one, but retinopathy issues made me ineligible. I am legally blind from that, and it sucks, you want that to stabilize, believe me.

 

[Ebony2102]

Did you mean that you are legally blind now due to the retinopathy... Does retinopathy generally affect your sight or is it because the damage was close to your pupil? And why does that stop you from getting the pump? I would assume it would be more of a reason to give it to you. I personally would love to be able to put a stop to it now as I'm rather worried about my future but I don't know what I else I can do

 

[Sucre Bleu]

Did you mean that you are legally blind now due to the retinopathy... Does retinopathy generally affect your sight or is it because the damage was close to your pupil? And why does that stop you from getting the pump? I would assume it would be more of a reason to give it to you. I personally would love to be able to put a stop to it now as I'm rather worried about my future but I don't know what I else I can do

Yes, I followed a pretty typical diabetic retinopathy course, some background changes, then laser was needed and more laser, and lots of retinal bleeds, and eventually I had so much laser they literally had no more room to do it, and told me there was nothing else they could do. By then I had complete night blindness, otherwise I could see outlines of people, but no detail on faces etc. Retinal bleeds continued and these bleeds started filling up my vitreous humor, we called it eye goo, finally on just a routine check, the retinal surgeon offered me vitrectomies in both eyes, basically they suck out the clouded eye goo full of blood, and replace it with clear artificial goo. Danger being they might detach your retina completely, if things go well when they do your first eye, weeks later they do the second. Sadly because of the amount of laser I had, the results were not outstanding, but made things a little clearer. As a result I also developed surgically induced cataracts, and had them done, still legally blind, I have no depth perception either, no tolerance for harsh light and sun, get dry eyes. The reason I cannot get a pump is because I cannot see well enough to operate it- I don't have a mobile phone either cant see it, read my regular mail, obviously in case you were wondering a combination of non prescription magnifying glasses, and a web developer partner who gave me a 17inch laptop which he then adapted with zoom and a talking lady who reads to me if I have eye strain.
Sorry to write a miniseries, but I thought you deserved to know a typical path. We are all different tho. Keep in mind , I once asked my specialist why I had all the complications, and my dad also Type1 for over 70yrs had basically none, and he said the difference was the strain put on my body from 5 pregnancies. Not that I would change a single thing.

 

[noblehead]

Did you mean that you are legally blind now due to the retinopathy... Does retinopathy generally affect your sight or is it because the damage was close to your pupil? And why does that stop you from getting the pump? I would assume it would be more of a reason to give it to you. I personally would love to be able to put a stop to it now as I'm rather worried about my future but I don't know what I else I can do

@Ebony2102, have a good read around the following website as it has a wealth of information on diabetic retinopathy and ways in which you can improve your diabetes control:

http://www.diabeticretinopathy.org.uk/Information_for_patients.html

As you will see in the website its says that any sudden improvements to overall bg control can sometimes make retinopathy worse and it says that any improvements should be done over a longer period of time, so I would suggest your speak with your Endo or Ophthalmologist first to be on the safe side and to get some guidance.

As for feeling hypo when your below 7mmol, these are called False Hypo's and the symptoms do disappear once your bg levels begin to normalise,

 

[Ebony2102]

Wow that must be awful, I know its life, but it does not get any easier, and the thought of getting worse is not very nice at all, but thankyou all for your advice, so nice knowing people understand and have been in the same position I am in right now.

 

[ButtterflyLady]

Yes, I followed a pretty typical diabetic retinopathy course, some background changes, then laser was needed and more laser, and lots of retinal bleeds, and eventually I had so much laser they literally had no more room to do it, and told me there was nothing else they could do. By then I had complete night blindness, otherwise I could see outlines of people, but no detail on faces etc. Retinal bleeds continued and these bleeds started filling up my vitreous humor, we called it eye goo, finally on just a routine check, the retinal surgeon offered me vitrectomies in both eyes, basically they suck out the clouded eye goo full of blood, and replace it with clear artificial goo. Danger being they might detach your retina completely, if things go well when they do your first eye, weeks later they do the second. Sadly because of the amount of laser I had, the results were not outstanding, but made things a little clearer. As a result I also developed surgically induced cataracts, and had them done, still legally blind, I have no depth perception either, no tolerance for harsh light and sun, get dry eyes. The reason I cannot get a pump is because I cannot see well enough to operate it- I don't have a mobile phone either cant see it, read my regular mail, obviously in case you were wondering a combination of non prescription magnifying glasses, and a web developer partner who gave me a 17inch laptop which he then adapted with zoom and a talking lady who reads to me if I have eye strain.
Sorry to write a miniseries, but I thought you deserved to know a typical path. We are all different tho. Keep in mind , I once asked my specialist why I had all the complications, and my dad also Type1 for over 70yrs had basically none, and he said the difference was the strain put on my body from 5 pregnancies. Not that I would change a single thing.

That's great that your web developer partner could adapt the laptop for you. Apparently there are all kinds of software out there that can read out what a screen says. It would be great if someone could invent software to do this for a pump, and also enable the person to change the settings without being able to see them.