I would like some support through this difficult journey

[MeiChanski]

Hello diabuddies! I am indeed new to this forum. How is everyone?
I'll be brief but please bring some snacks and maybe some tissues, because someone is cutting onions.

I am been a diabetic since 2001 at the age of 8, does anyone remember mixtard 30? for about 6-7 years from primary to first 3 years of secondary school, it was a lot of DKA, self hate, rebellion where I did not want to take insulin and depression. Thats when my consultant and DSN at the time decided to put me on novorapid and levemir, it was a rocky start.

Fast forward to 2013, where this girl is going to university for the first time and I was most certainly excited. At that time, I registered to see a GP there and that GP prescribed me only 1 box of test strips and I was naive and didn't ask for more. I think those particular test strips was costing them too much money? It was that ancient One Touch Ultra blood glucose meter. ( oh we are going back in time) This was when the problems starting arising, I was running out of test strips very quickly. This resulted in me going through weekends without testing so I could pick my prescription on mondays. I kept going back and repeating for more test strips. Unfortunately during autumn-winter semester, I had two hypos. one was where I wasn't alive to assist myself and my housemates who I am still grateful for, assisted me but they didn't know much about diabetes. Ambulance came, sugar drip and gels and what not, I came back with slurry speech. After christmas and new years, I was greeted by their parents and the look in their eyes was very unhappy. They spoke to me saying "our son and daughters shouldn't be looking after you, you should be looking after yourself". Few weeks later, my housemates moved out because I caused them to be depressed and unfocused on their uni work, they said they were unable to sleep at night. So I was isolated and alone for the spring-summer term 2014 in that house. Since then I have been in and out of uni due to hypoglycemias, after that accident I couldn't sleep, I would spend most nights until 6-7am because I'm too scared to sleep.

To present day, my parents are urging me to finish my degree and I am a bit reluctant to go back because my housemates are still at that university. I did move from SE London to Leeds, then to Warwickshire. I did meet my BF last year in Leeds but we moved to west midlands because of his job. Since registering at a new GP, they seem okay and have referred me to Warwick hospital. I saw my new consultant on 2nd April, I explained the situation that I was in and he prescribed Tresiba, so far it's been okay and not too much of a sharp rise in between meets and in the morning. I, of course did DAFNE in November 2018 back in SE London because it was one of the criteria for an insulin pump. But so far my new consultant said he'd consider me for a pump but not yet, because he just knew me. maybe in a couple of months? I don't know if an insulin pump would help.

So my question is, How does one move forward from this mess? I know some people might say just move on, but I feel it's not as easy as moving on. Some could argue that my housemates aren't real friends - I don't dislike them, I don't hate them but I felt I wasn't heard and it wasn't me abusing myself to have such a severe hypo. If I had more test strips, I'd doubt I would have had that severe hypo but no one asked what my situation was. I felt like I was the enemy in that situation. I do blame my own condition for pushing people away, I have no friends at university and the only friend I have is my boyfriend. who helps me in situations when I need him.

I am not asking for sympathy, I just feel quite lonely at the moment.

I hope you have a nice day.

 

[Fairygodmother]

Hello and welcome to the forum.
It seems that you’ve been messed up by a combination of medical inaction and wretched experiences. Hugs!
There are lots of people on this forum who’ve had a tough time at some point in their lives, myself included. Horrid hypoland is the pits, especially if other people don’t realise how hard it is to deal with T1 when you don’t have the basic necessities. I think the people you shared the house with were, like you, victims of the poor treatment you received, and I admire you for not hating them. Maybe when you’ve had the benefit of what seems like better treatment and have gained confidence you’ll feel better about going back to Uni: did you enjoy your studies?
There are also lots of people here who’ve learned how to manage their T1 as best they can and are happy to share their knowledge.
It’s great that you’ve done the Dafne course - does it help? It’s great, too, that you seem to have a decent doctor now and are registered with a Consultant? Does your surgery have a decent DSN you can share your situation and history with? There’s a big focus on T1 and mental health at the moment so maybe now’s the time to ask for help to overcome what’s happened in the past? You’re not the only one who’s come up against the way T1 affects others’ perception of you!
Again, welcome! You’re among friends here.

 

[Knikki]

Hello @MeiChanski Welcome to the forum from a long term T1.

OK first off you really should sort out some medical help, go find a doctor local or at Uni kick the door down and sort out some diabetic help.

Get your self more testing strips and as you have been in hypos so badly see about getting yourself a Libre, will help both you and your boyfriend watch whats going on.

Finish Uni and get a degree, it will be stressful BUT T1 should not be a reason for you to stop, look up online Sports People with T1 and there are many in many sports who do not let T1 stop them and why should it, once you get the hang of it, to everyone else your just a normal every day person with pancreas that can't be bothered so you have to do its job for it.

Yes I remember Mixtard 30, also remember using glass syringes you had to boil and stir in alcohol, testing with urine water mix, could be some 6 hours out. Long time and seen many things change.

 

[MeiChanski]

Hello and welcome to the forum.
It seems that you’ve been messed up by a combination of medical inaction and wretched experiences. Hugs!
There are lots of people on this forum who’ve had a tough time at some point in their lives, myself included. Horrid hypoland is the pits, especially if other people don’t realise how hard it is to deal with T1 when you don’t have the basic necessities. I think the people you shared the house with were, like you, victims of the poor treatment you received, and I admire you for not hating them. Maybe when you’ve had the benefit of what seems like better treatment and have gained confidence you’ll feel better about going back to Uni: did you enjoy your studies?
There are also lots of people here who’ve learned how to manage their T1 as best they can and are happy to share their knowledge.
It’s great that you’ve done the Dafne course - does it help? It’s great, too, that you seem to have a decent doctor now and are registered with a Consultant? Does your surgery have a decent DSN you can share your situation and history with? There’s a big focus on T1 and mental health at the moment so maybe now’s the time to ask for help to overcome what’s happened in the past? You’re not the only one who’s come up against the way T1 affects others’ perception of you!
Again, welcome! You’re among friends here.

Hello Fairygodmother, I heard you are very famous here.

Thank you for your kind words, I do appreciate it. Making a decision to go back to university for my final year, is quite difficult because it was a dark time for me The thought of bumping into my housemates is a possibility and they never look happy when I say hello and to be reminded of the past. Again, they didn't hear what I had to say but I don't dislike them, I just wished I had that window of opportunity to explain. I can't seem to move forward and say hey it's only a year left of uni, it's not that long. However, for someone who does have anxiety, a year is very long. I valued their friendship, despite of my hypos.

I enjoyed learning, not so much social side of things. I've only met on other diabetic during my 4 years of uni and he only carried his novorapid pens on him and nothing else. It was a nice surprise because he asked if I needed help while sipping on my coke. But I never asked for his name. DAFNE to an extent was helpful, there are certain things like injecting before you eat doesn't quite work for because I sometimes don't finish my food and end up hypo afterwards. I haven't spoken to a DSN yet, I've only seen the consultant who prescribed tresiba as a trial. I did briefly mentioned about mental health to my consultant but I think I have to hint at him again to be considered for therapy or something. I'm assuming there are therapists who specialise in diabetes. ( I actually didn't know about this. for many years, I saw therapists who didn't really understand diabetes).

 

[PenguinMum]

Hi I am unsure which Uni you are at but all universities now have very good medical and pastoral support, though some probs better than others. I would suggest you apply to go back into halls to do your final year. Very often you can be placed in a flat where somebody else has the same condition if thats possible. I speak from experience with my own son though he wasnt diabetic. When he needed help there was a whole range of support to tap into that we just didnt know about. At least talk to your Uni to find out. As regards bumping into the old housemates dont worry if you are living on campus they will be lost in the throng. Whats bedt for you is what matters. All best wishes.

 

[NicoleC1971]

Big hugs to you also. And a shout out for wanting to get past some horrible times rather than indulging in a pity party. I think everyone here has had a bad hypo or dka, where you not only feel physically wretched but somehow guilty because, in theory, you could have prevented it if only you were the perfect diabetic!
I had a bad time in year 2 of uni, when I told my tutor that I had diabetes plus an eating disorder, prior to going off to Japan for my year out (the reason I chose that uni and that course in the first place!). I don't know but I believe these 2 things caused him to prevent me going to Japan. It was gutting and still hurts a little bit to this day! I did go back and finish my degree though after a year out.
My point is we do suffer the slings and arrows of outrageous fortune but if you keep going, other good things will happen and the bad things will recede and not be so painful.
I think you should do all you can to get help with the diabetes e.g. asking for the freestyle libre device to get better hypo warnings and identify the optimum basal rate and correction doses etc. The pump may help but only if you are prepared to put some effort into testing and working out your meal time bolus rates.
The housemates that moved out are an upsetting factor but avoiding the issue won't help. Could you write a letter (unsent) to get the feelings out and then prepare a little game plan should you encounter them again? If you can imagine seeing them once you are feeling better about the diabetes thing and have resumed your degree would that make you feel stronger when you bumped into them?

 

[JAT1]

Hello and welcome! You have been through a difficult time. I hope you meet other young people on this forum. From my reading here, it seems that many young people have problems dealing with their diabetes. Do you count carbs? Are you on fixed doses of insulin or do you match the insulin you inject before a meal to what you are going to eat? I hope you don't mind the questions but when you said you were drinking coke, I wondered. Many type 1s, including the famous Dr. Bernstein, follow a low-carb diet because it reduces the need for insulin and steadies blood sugar readings. In order to avoid hypos you must make sure you never inject more insulin than you need.

 

[Daibell]

Hi. First you are entitled to as many test strips as you think you need. I have 100 per month on my script. Some users do ask for more. My surgery changed all of our meters 2 years ago to the MyLife Pura as it uses lower cost strips and I'm very happy with it. It sounds like you still need to get the Basal/Bolus balanced a bit more? The DN if you can find a good one should help. Basically the Basal should keep your BS stable if fasting for few hours with no Bolus; it's job is to balance the continuous background liver output of glucose. You can tweak the dose if needed to get the balance right. Only make small changes over a few days and test regularly. I assume you are carb-counting for the right Bolus dose at each meal? I also assume you do try to control your carbs to minimise BS swings?

 

[MeiChanski]

Hello @MeiChanski Welcome to the forum from a long term T1.

OK first off you really should sort out some medical help, go find a doctor local or at Uni kick the door down and sort out some diabetic help.

Get your self more testing strips and as you have been in hypos so badly see about getting yourself a Libre, will help both you and your boyfriend watch whats going on.

Finish Uni and get a degree, it will be stressful BUT T1 should not be a reason for you to stop, look up online Sports People with T1 and there are many in many sports who do not let T1 stop them and why should it, once you get the hang of it, to everyone else your just a normal every day person with pancreas that can't be bothered so you have to do its job for it.

Yes I remember Mixtard 30, also remember using glass syringes you had to boil and stir in alcohol, testing with urine water mix, could be some 6 hours out. Long time and seen many things change.

Hello! my parents are self funding for my libre sensor and I agree, it has helped me in situations and he doesn't have to fiddle around with needles to test me. I don't know how the CCG is here to get sensors on prescription. I do think it is beneficial in terms of getting a reading in a second, instead of 5 and having that extra information in between tests.

University offered me DSA which was helpful because I'm not always a functioning human being, more of a zombie attending lectures. GP offered me CBT at that time, it wasn't as helpful as I thought it was and he did suggest antidepressants.

I have been hypo'ing so much that I'm indecisive about my final year, lack of concentration and hope in myself to complete my degree.

 

[MeiChanski]

Hello and welcome! You have been through a difficult time. I hope you meet other young people on this forum. From my reading here, it seems that many young people have problems dealing with their diabetes. Do you count carbs? Are you on fixed doses of insulin or do you match the insulin you inject before a meal to what you are going to eat? I hope you don't mind the questions but when you said you were drinking coke, I wondered. Many type 1s, including the famous Dr. Bernstein, follow a low-carb diet because it reduces the need for insulin and steadies blood sugar readings. In order to avoid hypos you must make sure you never inject more insulin than you need.

Hello! I do indeed count carbs, but not strictly, I know people who carry scales and everything with them. I have a ratio of 1:1. I match insulin to what i'm eating, again I don't finish my food so I hypo afterwards. I've been told to inject before eating during DAFNE. I do quite like low carb foods, I have yet to find out why and what is causing me to drop - through talking to my new consultant on Tuesday 2nd september, it maybe overlapping of insulin because I eat a lot of small meals during the day and I inject more than the recommended of 4 times a day. I was prescribed tresiba for a try out and it seems to not drop my BG as much as levemir but it's still in the early days.

 

[evilclive]

Hello! my parents are self funding for my libre sensor and I agree, it has helped me in situations and he doesn't have to fiddle around with needles to test me.

If you've already got a libre, have a look at a miaomiao - it + phone turns the libre into a CGM with alarms (both high and low). That's been the biggest change in my diabetes care for years - I used to have problems with hypos while asleep, now I don't. I started off with low alarms only, then added high ones, and it's brilliant - problems are caught early enough that I can easily deal with them, and this is a virtuous circle, because if the problems are caught early in the longer term they actually get less likely to happen.

 

[MeiChanski]

Hi. First you are entitled to as many test strips as you think you need. I have 100 per month on my script. Some users do ask for more. My surgery changed all of our meters 2 years ago to the MyLife Pura as it uses lower cost strips and I'm very happy with it. It sounds like you still need to get the Basal/Bolus balanced a bit more? The DN if you can find a good one should help. Basically the Basal should keep your BS stable if fasting for few hours with no Bolus; it's job is to balance the continuous background liver output of glucose. You can tweak the dose if needed to get the balance right. Only make small changes over a few days and test regularly. I assume you are carb-counting for the right Bolus dose at each meal? I also assume you do try to control your carbs to minimise BS swings?

Hello! Since moving to Warwickshire, the GP here isn't too reluctant to prescribe me a 2 month prescription compared to SE london and Canterbury. So I've been able to get more items here. When I was at uni, they told me to use another meter and get different test strips, assuming that One Touch Ultra was too expensive? and they kept changing my needle size to 8mm without telling me. I'm on the libre now because my parents agreed it would be better so it is funded by them at the moment. I haven't found a DN at the moment, I'll ask my GP surgery tomorrow. I have found levemir to keep me stable but when it tapers off, I'll go high. I haven't found the right balance with levemir, last few months i've been tweaking it, sometimes i go high and sometimes i go low. With tresiba it's a bit different and i've been a bit more stable. but i'll give it another few days because I am testing it. Yes i'm carb counting, 1:1 ratio for meals.

 

[evilclive]

Hello! I do indeed count carbs, but not strictly, I know people who carry scales and everything with them. I have a ratio of 1:1. I match insulin to what i'm eating, again I don't finish my food so I hypo afterwards.

If you reckon you're not going to finish your food, inject less - injecting some will still give the effect you need. Then if you do finish it, put the right amount (*) extra in. More stabbing, but no ****** hypo.

My variation on this is if I'm eating out and I decide after my main course I want a sticky toffee pudding for afters, I can do, just inject for it

(* I'd not worry too hard about precision here - you've got a libre, see how the glucose levels go and if necessary do a correction (sugar or insulin) a couple of hours later.)

 

[MeiChanski]

If you've already got a libre, have a look at a miaomiao - it + phone turns the libre into a CGM with alarms (both high and low). That's been the biggest change in my diabetes care for years - I used to have problems with hypos while asleep, now I don't. I started off with low alarms only, then added high ones, and it's brilliant - problems are caught early enough that I can easily deal with them, and this is a virtuous circle, because if the problems are caught early in the longer term they actually get less likely to happen.

Oh nice, thank you. In regards to miaomiao, is it as expensive as Dexcom? libres? and it is readily available in the UK? I did have a look at the Dexcom and my bf did like the sound of it but it's too expensive. I know it'll be beneficial for my diabetes but it is difficult since i'm still a student. So I don't really know how to go on about it.

 

[MeiChanski]

If you reckon you're not going to finish your food, inject less - injecting some will still give the effect you need. Then if you do finish it, put the right amount (*) extra in. More stabbing, but no ****** hypo.

My variation on this is if I'm eating out and I decide after my main course I want a sticky toffee pudding for afters, I can do, just inject for it

(* I'd not worry too hard about precision here - you've got a libre, see how the glucose levels go and if necessary do a correction (sugar or insulin) a couple of hours later.)

Thank you! I'll see how it goes and it's also the case of remembering the second jab.

 

[MeiChanski]

Hi I am unsure which Uni you are at but all universities now have very good medical and pastoral support, though some probs better than others. I would suggest you apply to go back into halls to do your final year. Very often you can be placed in a flat where somebody else has the same condition if thats possible. I speak from experience with my own son though he wasnt diabetic. When he needed help there was a whole range of support to tap into that we just didnt know about. At least talk to your Uni to find out. As regards bumping into the old housemates dont worry if you are living on campus they will be lost in the throng. Whats bedt for you is what matters. All best wishes.

Hello! I have enquired about having a flat with people with a similar condition but university have said it might be difficult and too much to ask for. Unfortunately I went with an en suite this academic year, I have a feeling i'm bothering people too much about it and the whole expectation of "you've had diabetes for so long, you should know better".

 

[MeiChanski]

Big hugs to you also. And a shout out for wanting to get past some horrible times rather than indulging in a pity party. I think everyone here has had a bad hypo or dka, where you not only feel physically wretched but somehow guilty because, in theory, you could have prevented it if only you were the perfect diabetic!
I had a bad time in year 2 of uni, when I told my tutor that I had diabetes plus an eating disorder, prior to going off to Japan for my year out (the reason I chose that uni and that course in the first place!). I don't know but I believe these 2 things caused him to prevent me going to Japan. It was gutting and still hurts a little bit to this day! I did go back and finish my degree though after a year out.
My point is we do suffer the slings and arrows of outrageous fortune but if you keep going, other good things will happen and the bad things will recede and not be so painful.
I think you should do all you can to get help with the diabetes e.g. asking for the freestyle libre device to get better hypo warnings and identify the optimum basal rate and correction doses etc. The pump may help but only if you are prepared to put some effort into testing and working out your meal time bolus rates.
The housemates that moved out are an upsetting factor but avoiding the issue won't help. Could you write a letter (unsent) to get the feelings out and then prepare a little game plan should you encounter them again? If you can imagine seeing them once you are feeling better about the diabetes thing and have resumed your degree would that make you feel stronger when you bumped into them?

Hello, I'm sorry that you had to go through that, big hugs to you too! I, too was rejected from going to a fashion show trip during my GCSE years and a trip to new york during Alevel years, because of bad control and teachers would threaten me about it. I suppose so, my boyfriend has reminded me everyday that I'm going to do my final year for myself. Sometimes I'd like to ask if university is worth my hypo events and stress. If my control was somewhat less hypo and less zombie, I think my perspective would change about diabetes and seeing them.

 

[Deleted Account]

In order to avoid hypos you must make sure you never inject more insulin than you need.

I don't want to derail this topic but I just want to say how incredibly difficult it is to follow this advice without having a high BG all the time risking future complications.
I carb count, I have a pump, I measure my BG 8 or more times a day but there are still times when I hypo and whenever anyone with type 1 diabetes hypos is it because they have more insulin on board than their body needs. This may be due to incorrect food package labelling, inability to weight my food (e.g. when eating out), more alcohol than I intend or, the most common for me, exercise.

The important thing is to estimate insulin doses as best as I can and then keep hypo treatment close to hand with a close eye on my BG (either via CGM, Libre or frequent finger pricks) so, if I have injected too much insulin, I can treat the low before it gets too low.

 

[MeiChanski]

I don't want to derail this topic but I just want to say how incredibly difficult it is to follow this advice without having a high BG all the time risking future complications.
I carb count, I have a pump, I measure my BG 8 or more times a day but there are still times when I hypo and whenever anyone with type 1 diabetes hypos is it because they have more insulin on board than their body needs. This may be due to incorrect food package labelling, inability to weight my food (e.g. when eating out), more alcohol than I intend or, the most common for me, exercise.

The important thing is to estimate insulin doses as best as I can and then keep hypo treatment close to hand with a close eye on my BG (either via CGM, Libre or frequent finger pricks) so, if I have injected too much insulin, I can treat the low before it gets too low.

Hello, I have to agree to some extent because I do weigh rice and pasta and carb count for that amount and sometimes I do go low, although I have calculated it precisely. My libre does let me know, to a certain degree that i'm dropping and I do catch it before it drops further.

 

[evilclive]

Oh nice, thank you. In regards to miaomiao, is it as expensive as Dexcom? libres? and it is readily available in the UK? I did have a look at the Dexcom and my bf did like the sound of it but it's too expensive. I know it'll be beneficial for my diabetes but it is difficult since i'm still a student. So I don't really know how to go on about it.

It's a device which sits on top of the libre and transmits libre signals via bluetooth to a phone. One-off cost, 160 quid-ish, and I think some people here have a code which gets a slight discount. I'm hoping one of them will pop up here. You then need an app which sits on the phone - XDrip on android, spike on iPhone (both open source, both free). The slightly tricksy bit is none of this stuff is approved - you need to tick boxes saying "I promise not to use this for medical decisions". But I thought it was worth a try, and it's worked well so far.