hi all

[JACK123456789]

Hi all.

i hope alll are well.


i got told 3 months ago i have type one so i started on insulin and started to maker the changes in my life needed.
however 3 months on and i feel i am fed up and dont want to give myslef the injections i need (is this just me)
i often see my bloods in the high 20s low 30s but feel fine it is when i go below 18ish i feel bad.
i know i need to get this down but if i am honest the hole thing has just got my down to the point it is all i think about. again i kow the right thing to do is to start takeing my insulin but mentally it has become so hard. is this all normall?

Thanks you

 

[rebrascora]

Hi and welcome.

What you are experiencing is diabetes burnout and it happens to most people at some time or another, so yes, in some respects it is normal but obviously you can't just accept it is normal and not do something to remedy it. You need to reach out to your DSN for support through this phase.... and it is a phase.... you will get back on top of things again. There are strategies which can help and technology but you need to push to get help with it. I thankfully haven't hit the "brick wall" yet but I believe @Inka and @SB2015 have so hopefully they can offer some insight as to what helped them. I think it is probably helpful to engage the support of people close to you as well, to see if they can shoulder a bit of the mental load (maybe by carb counting for you) or just offer you support during challenging situations, like eating out.

Are there particular aspects of your diabetes management which are most difficult. Is it calculating the carbs and adjusting the doses? Or are you perhaps becoming needle phobic and it is the practical aspect of injecting which has got to you.

Which insulins are you prescribed and do you have Freestyle Libre to help you monitor your levels?

The more info you can provide the better we can understand your situation and hopefully help you with appropriate suggestions. Hang in there as it can and will get better with the right strategy.

 

[JACK123456789]

Hi Rebrascora,

Thank you for your reply.


currently i am on levemir and novorapid.

i dont mind the carb calculating, but having to push the needle in is definnitely getting harder.
it's fairly hard to explian but i am so used to not having to worry and planning ahead for things and now i do.
i have great people around me but find it hard to talk to them as i normally just show a stiff upper lip and get on with things as i dont like putting my problems on others.

i am hopeing to have the freestyle libre in the next couple of weeks i know this will help with day to day life.

i am just happy that it is not just me who thinks or at one stage has thought like this however evan tho i have great people around me i just feel so alone in all of this. (i understand that my doing as i sturggle to speak to the people around me.)

Thanks

 

[SB2015]

Hi Rebrascora,

Thank you for your reply.


currently i am on levemir and novorapid.

i dont mind the carb calculating, but having to push the needle in is definnitely getting harder.
it's fairly hard to explian but i am so used to not having to worry and planning ahead for things and now i do.
i have great people around me but find it hard to talk to them as i normally just show a stiff upper lip and get on with things as i dont like putting my problems on others.

i am hopeing to have the freestyle libre in the next couple of weeks i know this will help with day to day life.

i am just happy that it is not just me who thinks or at one stage has thought like this however evan tho i have great people around me i just feel so alone in all of this. (i understand that my doing as i sturggle to speak to the people around me.)

Thanks

Welcome to the forum Jack. I am very pleased that you have found us and opened up about how you are feeling at present. It is indeed a phase that hits many of us at some point And in different ways. You are right that with T1 we do have to think ahead and plan for things that we want to do, and carry extra ‘stuff’ with us. That can’t be changed but how you feel about this can change.

You already recognise that it is essential to take both your background (Basal/Levemir) and quick acting insulin (bolus/Novorapid) each day. With your levels in 20s and 30s your body will get used to having higher glucose readings and whilst you feel better with them up there this will impact on you physically and mentally.

It is important to talk to your team to discuss some strategies to bring the levels down as it is clear that you are not currently getting enough insulin, and they can help you to identify what needs to change. If you talk to them about how you feel too they should be able to help you with this too. It won’t be the first time they have come across this at all. As we said many of us have reached burnout at some point.

It took me a long while to recognise that I needed help, but when I did I was surprised at the impact the support had on me. I mapped this for others on here. I was coming from a different angle as I chose to try to over manage my levels and set myself up to fail. In case any of the strategies prove useful here is the link. It will also show you just how many of us have experienced this.

Successful strategies so far in dealing with depression and Diabetes

I found it tempting to hide away over the last couple of months. After 9 years of Diabetes I finally hit a wall as HbA1c reached the mid 40s and so no longer improved, spinal stenosis gave me numb feet over night, an MRI showing lesions on the brain and I watched my Mum die of Dementia...

forum.diabetes.org.uk

Keep in touch with us and let us know how you get on.

 

[rebrascora]

That is totally understandable. The forum is great for being able to discuss these things sort of anonymously with people who do understand how mentally and physically challenging it is, because even at night when you go to sleep you can never totally switch off from it.

So pleased you are getting Libre as that will help. I wonder if an iport might be something that would help with your injecting issue. It is a cannula which is applied every 2-3 days I believe and then you just inject into the "port". Obviously the device has to be pushed through your skin but once every 2-3 days has to be better than 4-5 times a day. You can also get shielded needles or something called a Tickle flex injector which may help.

 

[Inka]

Hi @JACK123456789 The first thing to say is that you’re not alone. People here totally understand the utter nuisance of Type 1 and all the feelings a diagnosis brings. I’ve had Type 1 almost 30 years but I still remember the sadness, the anxiety and the anger. It took me 6 or more months to get used to the practicalities but more like two years to fully get my head round the emotional side.

I have a needle phobia. I make sure I use good quality needles at the right length and I talk myself through each injection. Not in a coaxing way, kind of like you’re demonstrating to someone else. Just before the injection, I think past it - eg about my upcoming meal, what I’m going to watch on TV, anything like that. Also, make sure you have re-useable injection pens. They’re sturdier, heavier and better quality, and that helps a bit too.

Speak to your team and get their support in getting back to injecting. They won’t be annoyed or judgemental. You’ll be far from the first person who’s had problems.

Remember too that every day we’re closer to a cure. I’ve been reading some encouraging research recently. Think positively. Think of the diabetes as a job. Do things systematically and get them done. Moan and rant here, and ask anything you want.

 

[JACK123456789]

Thank you all so much for you time helping me.

after reading this i think i will pay to talk to someone before this gets out of control. how do you going about getting a iport is this something i will have to pay for myself as this sounds like a very good option.

again thank you. it nice to hear diffrent peoples story and how they are dealing with it and i honestly thing this forum is going to be a great help for me and many others.

 

[Bruce Stephens]

after reading this i think i will pay to talk to someone before this gets out of control. how do you going about getting a iport is this something i will have to pay for myself as this sounds like a very good option.

They're not cheap (£72 for 10, and each lasts 3 days, so about that every month) and I don't think they're available on prescription (because it's not likely they have that much impact particularly with modern 4mm, 32G needles). https://mmc.medtronic-diabetes.co.uk/iport/

Unless you have the money to spare, I'd guess it's better to talk to your healthcare team (and privately if you can find someone) and make sure you've got the best available stuff (new reusable pens, quality needles, Libre, etc.). Maybe try the Tickleflex injector if that seems like it might help: https://shop.diabetes.org.uk/products/tickleflex-insulin-injection-aid-vat-relief

 

[rebrascora]

I would start with contacting your diabetes clinic and named DSN if you have one. Some clinics have a helpline that you can call and leave your details and a message on what it is about and they will ring you back. Mine usually takes a couple of days and I believe they prioritize based on things like nocturnal hypos. If you stress that you are having difficulty injecting your insulin that should make it a priority. You can then discuss the whole burn out thing and mention an "iport".

Oh Wow! @Bruce Stephens I had no idea they were that expensive.... that is a shocker! Sorry to offer you a potential solution @JACK123456789 only to find it may be beyond financial reach. Really hope you can find something which helps get you back on an even keel. Do be persistent with the clinic though. They are a bit stretched workwise at the moment due to Covid which has caused an increase in diabetes diagnoses as well as more intensive support required for those hospitalized with it. What about the shielded needles that they prescribe for kids in schools? Something else to ask the DSN about anyway and do ask about the iport. They might consider prescribing it in certain circumstances and they can only say "NO" and hopefully suggest something else which they have found works for other people. The key thing to remember is that there are solutions, you just have to find them and push for help.... Not easy I know when you don't like discussing this stuff but you know that you do need help otherwise you wouldn't be here..... which is a great first step. I am quite sure I would have hit burnout long before now if it wasn't for the good people here supporting me with my diabetes journey and enabling me to find the best way to manage both the physical and mental aspect of diabetes care and neither should be underestimated as to the burden they place on you so don't feel awkward or embarrassed, just crack on and ask questions and push towards finding the solutions for your particular issues.
We are all in this together.

 

[Bruce Stephens]

Oh Wow! @Bruce Stephens I had no idea they were that expensive.... that is a shocker!

Yes, I was disappointed. (I looked a few days ago because it felt like an interesting idea, but at that price it's not so interesting!)

 

[Inka]

Yes, I was disappointed. (I looked a few days ago because it felt like an interesting idea, but at that price it's not so interesting!)

It looks like a pump cannula but surely the issue would be injecting basal and bolus insulin close together? A pump only has one type of insulin going through the cannula (as you know).

 

[Bruce Stephens]

It looks like a pump cannula but surely the issue would be injecting basal and bolus insulin close together? A pump only has one type of insulin going through the cannula (as you know).

I think they recommend leaving an hour between the two, but I don't remember where I read that.

 

[rebrascora]

Yes, I did wonder about putting basal and bolus into the same port but does it matter if different types of insulin go into the same site? Can they react? One thing is for sure, you couldn't afford 2 iports at a time (one for basal and one for bolus) unless you were filthy rich, at those prices!

 

[Bruce Stephens]

I think they recommend leaving an hour between the two, but I don't remember where I read that.

It's one of the Q&As.

 

[Inka]

Yes, I did wonder about putting basal and bolus into the same port but does it matter if different types of insulin go into the same site? Can they react? One thing is for sure, you couldn't afford 2 iports at a time (one for basal and one for bolus) unless you were filthy rich, at those prices!

I don’t know about the modern insulins but I presume so. The older insulins did because I remember a set way to draw them up into a syringe (twice a day injections then!). Also, you had to be careful not to let a drop of one insulin get into the other vial.

 

[rebrascora]

I also wonder if using one of these ports may mean that you become more needle phobic because it becomes a less frequent event, so perhaps the day the iport is due to be changed becomes a bigger issue than having to face the challenge of normal injections several times a day.... ie regular exposure desensitizes you. I suppose it could work either way.

 

[Inka]

To be honest, I find my pump cannulas more traumatising than my injection pens @rebrascora so if I was on MDI I wouldn’t swap to an I-port. I’d also worry about all that insulin going into one place for 3 days.

 

[rebrascora]

I’d also worry about all that insulin going into one place for 3 days.

But surely that is no different to an insulin pump cannula feeding insulin into the same site for 3 days, other than 2 different types of insulin instead on just one going into it, but the totally daily tally should be about the same.

Just thinking some more about your situation, Jack. Do you inject into the same site every time ie your belly or have you experimented with other sites? For instance I inject my basal into my buttocks and I do it by feel rather than looking because I am not a contortionist! 🙄 I also use my thighs, but you can use your upper arms too. Just wondering if just a change of site might help mentally and some people aren't told that they can use other sites than their tummy.
Also, is it possible that someone close to you could take over the injecting for you for a while to give you a break. I know that you don't want to talk about it with people close to you but I am sure they would be willing to help you in any way they can. I used to give my Mam injections (not insulin) in her bot when I was a teenager and of course parents do it for their children and there have been people whose partners have injected for them when they had difficulty manipulating the pen or reaching to inject. Just something else to consider.

 

[rebrascora]

Thinking about it further, would you be more comfortable injecting through lightweight clothing instead of directly, so that you are not seeing the needle penetrating your skin. I have done it on very rare occasions when I was wearing clothing which didn't allow for direct skin access..... a dress and tights in my case, but I have read on this forum of men injecting into their thigh through their trousers. I think for me that might be going a bit too far.... but then my trousers are usually dirty from working outdoors, but through a T-shirt or lightweight shirt into my stomach would not be unreasonable I think and any solution is better than not injecting as those high numbers are not doing you any favours and the fact that your body complains when they drop a bit suggests that you have been running high for rather too long to risk continuing.

Anyway, just trying to give you more options to try.

 

[Inka]

@rebrascora I use less insulin on a pump than MDI as do most people. Mine reduced by 25% when I first went on the pump. As you say, it’s also the two types being in the one place that would unsettle me.

My needle phobia hasn’t gone away. I still freak out at the GP’s sometimes. But getting the right way of doing it yourself - both physically and mentally - is really the best answer. Sometimes I feel it brewing under the surface, but most times I’m ok, and I speak as someone with a bad phobia. It does get easier and having good equipment and a good routine makes it ok.