I’m struggling

[Nicola M]

This is something I’ve been scared to admit for a while and I even believe I was somewhat in denial. On Friday I had one of my many hospital appointments, in-between my normal checkups I see my diabetes nurse (who is absolutely wonderful). Upon getting to my appointment I just broke down and admitted that actually I am struggling and have been for a while and I can’t seem to snap out of it. I’ve had a few hospital admissions over this last year (I believe 5), I rarely if ever test my sugars. The only thing I really do is give insulin but it’s definitely not calculated right it’s more of a guess than anything. I definitely don’t test my basal rates and overall have just stopped caring. My nurse says it’s pretty normal for most people to go through a stage where they say well actually I’m fed up and don’t want this anymore and that’s exactly the point at which I’m at. We’ve set a goal together of when to try get me back on track for (Next Summer) and she’s recommended a youth group for me to go to at my hospital that has other diabetics in so I have people I can relate to. I know it’s not going to be easy to get back on track and it scares me a little, I’d love if anyone could give me a bit of advice on things I could do to help me get out of this vicious circle.

 

[Jaylee]

Hi @Nicola M ,

Yep, it is pretty normal for some diabetics to say "hang this.!"
The problem is, once blood sugars go awry. Emotionally, you get caught in a negative feedback loop, affecting control further..?

I'll tag in @Juicyj & @catapillar .

It's great you're taking the first positive steps to sort it out..

 

[becca59]

@Nicola M you have taken the first steps. Admittance to yourself! Well done, you are on the road to taking charge. Take baby steps and before you know it you’ll be striding along. Good luck!

 

[Juicyj]

Hi @Nicola M - The most positive thing is that you know this - the question is why do you think you're in denial ? Are you afraid of anything in particular ?

Having a focus on why you need to manage this is central to everything, my focus is living a long and healthy life and not losing my sight. I am not perfect, I am far from it, but I accept imperfection now and deal with it. I know it's hard to confront your internal feelings but learning to live with them and the reasons why you are in denial will help you cope better and turn a corner

 

[Jenniewren1958]

Hi Nicola just sending a hug

 

[Nicola M]

Hi @Nicola M - The most positive thing is that you know this - the question is why do you think you're in denial ? Are you afraid of anything in particular ?

Having a focus on why you need to manage this is central to everything, my focus is living a long and healthy life and not losing my sight. I am not perfect, I am far from it, but I accept imperfection now and deal with it. I know it's hard to confront your internal feelings but learning to live with them and the reasons why you are in denial will help you cope better and turn a corner

I think I kept trying to tell myself that nothing was wrong and I was doing fine and I was managing everything fine but after my most recent hospital admission I finally looked at the bigger picture and thought actually I’ve lost control and I’m not doing as good as I could be. I’m scared that I’ll get my control back and then lose it all again. I’m terrified of ending up in hospital, I hate going as I haven’t had the best experiences there.

 

[novorapidboi26]

What kind of support/education have you had from the clinic.....?

My own personal experiences of structured education and talking to other diabetics is what got me on the right path....

Now its just a routine that has been drilled in for so long thats its difficult to leave it behind now....

You'll get back on track, I am sure of it.....

 

[Juicyj]

Hi @Nicola M Do you think you've had a wake up call then ? Did the seriousness of having type 1 scare you from accepting it ?

I know shock tactics can really shake people up and affect their attitude in regards to how they manage, it can go 2 ways, either scare them into denial or push them to become experts in self managing. The sad thing about this condition is that if you deny it then it get's alot worse and it can become much harder to manage. If you accept it and control it then it becomes like a minor irritation which needs the odd scratch every now and again, but ultimately it doesn't take over your life.

Only you can decide how you want to go forward though, if you accept that each day you will need to test upon waking, before meals, if you feel yourself going high/low and before bed and take the correct amount of insulin with your food intake then it will be manageable for you. Set yourself a target blood glucose range before meals to start with and aim to keep within this.

Don't punish yourself if you can't do it, as I said before I am not perfect and i've accepted this, however I aim to keep as close to my target as I can, and that way I know I am doing all I can.

Type 1 is very much down to user input which is you, you can decide if you need support with your BG monitoring or insulin therapy, but it is down to you to own it and shout if you need help, like I said if you don't accept it and manage it then it will become harder to control but just giving it that bit of attention it needs from time to time will stop it getting out of control and your life will be much easier to manage, please message me if you need a buddy too

 

[Nicola M]

Hi @Nicola M Do you think you've had a wake up call then ? Did the seriousness of having type 1 scare you from accepting it ?

I know shock tactics can really shake people up and affect their attitude in regards to how they manage, it can go 2 ways, either scare them into denial or push them to become experts in self managing. The sad thing about this condition is that if you deny it then it get's alot worse and it can become much harder to manage. If you accept it and control it then it becomes like a minor irritation which needs the odd scratch every now and again, but ultimately it doesn't take over your life.

Only you can decide how you want to go forward though, if you accept that each day you will need to test upon waking, before meals, if you feel yourself going high/low and before bed and take the correct amount of insulin with your food intake then it will be manageable for you. Set yourself a target blood glucose range before meals to start with and aim to keep within this.

Don't punish yourself if you can't do it, as I said before I am not perfect and i've accepted this, however I aim to keep as close to my target as I can, and that way I know I am doing all I can.

Type 1 is very much down to user input which is you, you can decide if you need support with your BG monitoring or insulin therapy, but it is down to you to own it and shout if you need help, like I said if you don't accept it and manage it then it will become harder to control but just giving it that bit of attention it needs from time to time will stop it getting out of control and your life will be much easier to manage, please message me if you need a buddy too

I mean I’ve had it for for 19 years and before this my control was close to “prefect” then recently I’ve suddenly decided I just am fed up with everything that’s comes along with diabetes and didn’t want to do the little things anymore. Now I’m struggling to get back on track as such, I do want to and going to this youth group is a start for me but it’s getting back into testing properly again is what I’m finding difficult. Thank you for taking your time to talk with me it’s definitely helped

 

[Juicyj]

Hi @Nicola M It sounds more like you're burnt out from it, not so much denial as you're fully aware, just ground down with it all.

Another thought is to look at ways of helping you cope better, personally I find exercise is a good way to relax and cope better, whether it's a long walk, run, gym or a class, somewhere you can just go and unwind.

Testing is tedious too I know, I use the libre once a month on top of my BG meter, it helps me to see the bigger picture and identify trends, some have said that when they have felt similar that having this has helped them as it's taken the pressure off wondering what's going on and being able to relax more with their management. It would also help you get back on track, maybe speak to your DSN to see if you can get a trial if cost is an issue. Keep on talking too, we get it, honestly if I was a fairy with a magic wand I wouldn't waste any time waving it about !

 

[slip]

Juicyj beat me to it, I was going to suggest the Freestyle Libre - with the ease of scanning it might just reengage your ability to manage the condition well - which you've done before. Plus it has pretty graphs and blue target areas to aim for..........if that's your thing

 

[Nicola M]

I’ve took the plunge and ordered the libre starter pack, hopefully it will help me to check my sugars more and I much prefer visuals as it used to help keep me on track. Thank you all for your wonderful suggestions and support, I’ll make sure to keep you all updated on my progress as I go!

 

[Juicyj]

Hi @Nicola M Great move, it's a game changer when you need to test continuously so will look forward to hearing your progress with it, I have to admit I feel lost without mine when the sensor has run out.

 

[Scott-C]

I’ve took the plunge and ordered the libre starter pack,

Good move, Nicola! I'd been feeling a bit worn out with the grind of T1, but after getting libre last year, I found it hugely motivational.

I think the reason is that we're trying to deal with a constantly moving target, and that isn't so easy when you're just getting a few "snapshots" from strips every few hours, whereas with libre, you're getting to see the full 24 hour movie.

Obviously wouldn't go as far as saying it makes T1 fun, but definitely makes it a fairer game, just being able to see from the graph a bg starting to trend down, and then pin it with a few grams to stop it long before it gets anywhere near a hypo.

I'm content with my T1 now - we co-operate with each other instead of fighting - and I attribute that to libre giving me much better ways of managing a whole stack of things like hypo/hyper avoidance, basal testing, pinning foot on floor rise, deciding on post-meal corrections, pre-bolus timings etc etc.

Good luck with it!

 

[catapillar]

@Nicola M just wanted to say congratulations on making the connection that you are struggling, that's a really courageous thing to do and you should feel really proud of yourself for having that realisation and seeking help with it.

Diabetes burn out is pretty common. It's natural to want to wash your hands of it and just not be bothered with all the managing that diabetes requires. But of course, that desire to make it go away doesn't really work. What have your recent hospital admissions been for?

If you can try to make the managing as non-intrusive as possible (libre will help with that I'm sure) by filtering the testing into your routine so that, eventually, is just becomes part of your routine & you do it automatically without even thinking about it. Think about it like this: no one has to tell you to wash your hand after you use the loo, you don't have to put any effort into remembering to wash your hands after you use the loo, you just do it because that's what you do. If you can make testing as easy as possible for you to do (keep a test kit in the cutlery drawer, stick a post it on the fridge, put an alarm on your phone) eventually it will just become a seamless part of your routine.

I hope the DSN is helpful in offering support and you find the youth group useful.

 

[Nicola M]

@Nicola M just wanted to say congratulations on making the connection that you are struggling, that's a really courageous thing to do and you should feel really proud of yourself for having that realisation and seeking help with it.

Diabetes burn out is pretty common. It's natural to want to wash your hands of it and just not be bothered with all the managing that diabetes requires. But of course, that desire to make it go away doesn't really work. What have your recent hospital admissions been for?

If you can try to make the managing as non-intrusive as possible (libre will help with that I'm sure) by filtering the testing into your routine so that, eventually, is just becomes part of your routine & you do it automatically without even thinking about it. Think about it like this: no one has to tell you to wash your hand after you use the loo, you don't have to put any effort into remembering to wash your hands after you use the loo, you just do it because that's what you do. If you can make testing as easy as possible for you to do (keep a test kit in the cutlery drawer, stick a post it on the fridge, put an alarm on your phone) eventually it will just become a seamless part of your routine.

I hope the DSN is helpful in offering support and you find the youth group useful.

All admissions have been for DKA, 3/5 I wasn't fully in DKA but was pretty close. They've been for various reasons such as sickness, pump failure. My DSN has been extremely supportive and as I only have 6 monthly checkups with my doctor I go see my nurse every month in-between. I will definitely have to start doing reminders to get myself motivated to test properly again it's like once you're in that cycle of not doing it it's hard to get back out again. I'm looking forward to the youth group and being able to talk to other people who are in the same boat as me.

 

[leahkian]

NicolaM well done for taking the first steps, i have a brother who has been diabetic for 10 years and still says he is not diabetic. He has been in hospital that much that they have told him that if he does not start looking after himself they are going to refuse him treatment. I was a diabetic for 36 years until i had a pancreas and kidney transplant two and a half years ago and have had all the complecations that go with diabetes. Even now the diabetes is still running my life as i have nerve damage all over my body including my bladder and bowel and i still ask my self is it worth it and the answer is yes i am a single parent of a 12 and 14 years old children and they keep me going. If i never has the transplant i would have left my children without a dad and i am greedy i want to see them grow up. I hate what diabetes has done to me and my family but i am sure it is not going to stop me watching them grow up no matter how hard it gets, i no that there is a good chance that one day i will have to go back on insulin. At the moment i am still like every other diabetic with good and bad days, I was 3 when i got diabetes and they only gave me a 50/50 chance of pulling through but i like proving people wrong. You are still young and have so much life to look forward to and i no there will be bad times on the way but that makes the good times even more special. You just lost your way and we all do that at times it is hard not to, people cannot see what you are going through its not like a broken leg where they can see. I am not afraid any more to tell people about what i have been through with diabetes and that includes mental health problems i still have to this day but we did not choose to be diabetics and like my dad who had polio said he would rather have polio than being a diabetic. You are not alone we are all hear for the same reason to see what other people have gone through and offer our support and i offer mine to you

 

[emmay]

All admissions have been for DKA, 3/5 I wasn't fully in DKA but was pretty close. They've been for various reasons such as sickness, pump failure. My DSN has been extremely supportive and as I only have 6 monthly checkups with my doctor I go see my nurse every month in-between. I will definitely have to start doing reminders to get myself motivated to test properly again it's like once you're in that cycle of not doing it it's hard to get back out again. I'm looking forward to the youth group and being able to talk to other people who are in the same boat as me.

Hi @Nicola M
Sorry to hear you’ve been having a rough time, but as most others have said it’s great your talking about it and actually I think it’s good to know that there are other people having the same issues as you, your not alone but we all deal with things differently. Great to hear ur getting a libre i have had one since beginning of year, the beauty of it is that actually you don’t have to check ur sugars all the time if ur having an off day as it stored up to 8 hours of info, I’m not saying not to check but the beauty is you can see what is happening without having to think about it every 15mins and when ur feeling up to it you can then start working on any issues it identifies.

Wishing you all the best

 

[RAPS_od]

This may have been said already.
I didn't test for years. I thought I was so clever: I took my shots, didn't eat sweets, took care of hypos, and thought "Yup, I'm okay!" I didn't have many complications that were life limiting, so I thought I was doing well.
I changed my lifestyle about 20 years back and starting testing more regularly. I was diagnosed with retinopathy, neuropathy, Charcot, and kidney damage (not severe). I know I didn't get those from testing; it was my wild years catching up with me.
The most important thing for me was to recognize the "Diabetic Grief" (a real thing! who knew) and how left untreated it impacted me. I forgave myself; it was what I had to do to stay sane during that time. I'm past it now; testing is a part of my life that I can handle.
Forgiveness is really important. There will be plenty of people who will try to make you feel bad about how you manage your condition, believe me. But if the 'blast it all' feeling is keeping you from living life the way you want to, you may want to talk to a counselor or psychiatrist to help you through it. Don't let fear keep you from being the best you can. Forgive yourself and take responsibility when you can. And coming here is a great start!
I hope you find yourself through all this.

 

[morpheus123]

Hi @Nicola M

Yes it's very common for diabetics to go through the rebellious phase. It does seem more prevalent in type1 diabetics who are diagnosed at an early age but isn't limited to that group. I also have been through the "can't be bothered testing" phase more than once. I've also been through the not testing or taking insulin phase more than once and even though I was told of the damage I was doing I didn't care as it wasn't hurting me at that point (or so i thought). I've been type1 for over 17 years now and must admit that for over half that time to not being a "good" diabetic. I was a fitness fanatic and regularly ran triathlons to keep fit. I also kept up to date on the newest research into type1. As the years progressed and I went longer without testing and insulin I stopped keeping fit and looking for the latest research. I now have quite a few problems that had I took care of myself better I wouldn’t necessarily be dealing with. The damage does catch up with you eventually as I know only to well.

You have made really positive steps in talking to your dsn and also posting here to find help. Short term goals will help you get back on track (i find they have helped me to get my diabetes back on track). Also try looking into the links between depression and diabetes as there are some really useful bits of information out there. Also ask your dsn/diabetes team for a referral to a councillor as I found this to be very beneficial to me.

Remember that you are not alone in this fight and please if you need anything at all (even just to rant) then don't hesitate to contact me.

Mike