Diabetes Type 1, new member

[Jen0623]

Hello, I’m new to this group and I’m hoping to gain some friends and knowledge cause I am struggling.

I’m 39, have Type 1 diabetes, have Cystic Fibrosis and have had a liver & kidney transplant over my life.

I’ve been a diabetic for 31 years but recently I’ve been struggling.

During Covid I was working from home when in July I returned to the office building. I was really excited but trouble soon followed.
I was having hypos when I reached the office. After correcting this I ended up stayed high all day. In August I had a Major Hypo that an ambulance needed to be called, and due to this I had/having a Diabetic Burnout. My first one in my life.

Due to this burnout I’ve had to quit my job and I’m currently staying with my parents. It’s been 2 months since then and basically I’m in H.E.Double Hockey Sticks.

It’s taken 2 months for me to see a new Diabetic Specialist Team. This team have changed my ratios but I feel I can’t move in fear of a hypo, but because of my Cystic Fibrosis I do need to move and eat carbohydrates. The new team are telling me to eat but to keep my blood glucose under 10mmol/L.

Due to me having the Librelink scanner I’ve become obsessed with checking my blood glucose… which I never did before.

Currently, I’m too afraid to ‘eat big’ as I’ll have to do insulin. I’m too afraid to move/exercise/shop for food in fear of having a hypo and I’m too afraid to go home.

I feel weak and helpless. It’s like I’ve lost all control. My usual ‘tricks’ and ‘tips’ aren’t working and I feel that I don’t understand how I’m continuing to be ok?

I’m starting to realise that I probably haven’t taken care of myself as well as I probably could before this happened.. but, with people wanting me to keep my blood glucose under 10, to me it feels confiding. Im constantly crying and feel depressed that I can’t do what i ’use’ to do just 4 months ago.

After speaking to Diabetes UK team member I decided to join this group to see if I can get support in this dark moment of my life.
I have yet to meet another Cystic Fibrosis with Type 1 diabetes person, who may understand the issues I have. So if you’re around please let me know.

Thankyou for reading.

 

[Inka]

Welcome @Jen0623 🙂 I’m so sorry to hear about your problems. Burnout is a horrible thing. I suffered it recently and it took over my life. I also had/have hypo anxiety. Regarding that, what worked for me was getting a Dexcom G7 - more accurate, better alarms - and relaxing my control a little. I try to stay under 12. This relieves a lot of pressure and means I can exercise more confidently. The G7 has been a total game-changer though and has helped enormously.

Do you know what caused the hypos when you got to the office? Are you on injections or a pump?

 

[Jen0623]

Welcome @Jen0623 🙂 I’m so sorry to hear about your problems. Burnout is a horrible thing. I suffered it recently and it took over my life. I also had/have hypo anxiety. Regarding that, what worked for me was getting a Dexcom G7 - more accurate, better alarms - and relaxing my control a little. I try to stay under 12. This relieves a lot of pressure and means I can exercise more confidently. The G7 has been a total game-changer though and has helped enormously.

Do you know what caused the hypos when you got to the office? Are you on injections or a pump?

Hi Inka,

Thanks for replying
Looking back, I believe the hypos incurred because of the driving to work and probably the anxiety of going back to work so suddenly. I was working from home for 3 years and my ratios didn’t change for that whole time.
I wasn’t used to getting up, getting dressed, making a lunch, having breakfast and getting out of the house for an early time. I did all that within an hour of getting out of bed, while at home I took my time.
I was suffering hypos nearly every day. I got into a new pattern to have a biscuit before I left the house which that got me to the office but my blood glucose still went high, very quickly.

I try to aim to get under 12 as well but every time I try to go out for a walk my glucose goes straight down.

im on injections, on Fiasp which I think is too sharp for me.

My Cystic Fibrosis team have suggested I go on a pump but I don’t think I qualify. I’m not even sure if it’ll be better or worse for me ‍♀️

 

[Inka]

I wouldn’t take Fiasp. I also don’t think it’s a good choice with hypo anxiety. Can you swap to Novorapid or Humalog? For going low on walks, do you eat ahead of walking? Do you reduce your bolus beforehand?

A pump could help you as you’ll be able to get your basal closer to your needs. You can also extend boluses to reduce the fear of hypos. I think it would definitely be worth a try.

 

[Jen0623]

I wouldn’t take Fiasp. I also don’t think it’s a good choice with hypo anxiety. Can you swap to Novorapid or Humalog? For going low on walks, do you eat ahead of walking? Do you reduce your bolus beforehand?

A pump could help you as you’ll be able to get your basal closer to your needs. You can also extend boluses to reduce the fear of hypos. I think it would definitely be worth a try.

I was on Humalog previously, like all my time as a diabetic. I was always told to take Humalog after I’ve eaten.
I’ve always argued that you don’t know what you’re going to eat, so if you do inject too much it’s already too late.
I was switched to Fiasp around a year ago to help me ‘not to have too many sharp spikes,’ and instead have ‘a smooth flow’. I keep wanting to go back but the specialist always change my mind to not do it.

for walks I would usually eat dinner and do less insulin. But at the moment I’m not doing that. 4 months ago it would be automatic but currently I’m just struggling to do anything ‘normal’

 

[Inka]

If you want to go back on Humalog @Jen0623 do it! It’s up to you, not the consultant. You’re entitled to have the insulin you want.

I’m confused about why you were told to take Humalog after you’d eaten. It’s supposed to be taken before you eat normally. This could have been the cause of your spikes. More than that, if you take it at the correct time before you eat, you can usually take less of it - thus reducing your risk of hypos. Was the reason you were told to take it after you ate because of the CF? Are you contending with digestive issues? If so, an option could be to split your bolus and take it at two different times. Also, if you do have digestive problems, a pump would make that easier because there are various types of boluses you can do that spread the insulin out.

All your fears are totally understandable. I know how horrible it is. I do believe you can improve things though. It doesn’t happen overnight, but it does happen. For me, the G7 was a huge part of the answer (I already have a pump).

 

[SB2015]

Welcome to the forum @Jen0623 I am glad that you have found us.

I am sorry to read of the difficulties that you are having both with your diabetes and managing CF as well. I have also experienced diabetes burnout and it was a very difficult time. Your anxiety is understandable with the hypos that you have had.

Whilst continuing with your insulin jabs it may help to focus in just one aspect. Possibly a measured response to any hypos that occur. I find this very difficult, but found sticking to a set number of jelly babies and then having an alarm after 15 minutes before I check again, helped me not to over treat hypos. This then reduced the spike after a hypo and the inevitable roller coaster afterwards with correction doses. It is important to use finger pricks to manage hypos rather than the sensor readings as there is a time lag between BG and sensor readings.

It is good to read that you reflected back to identify the cause and it makes sense that you used up a lot more glucose returning to work, after such a long time working from home. Your insulin needs would be very different in those situations. On a pump you could set up different basal programmes for a work day and for a staying at home day, which you can easily switch between. On injections you would need to reduce your basal insulin and possibly the bolus before driving to work. I know that you are in different circumstances now living at home, but as we change what we are doing our insulin needs change. You mention that your team changed your bolus ratios. Have they taught you how to do these yourself?

T1 is hard work and whilst managing other conditions it is even harder. As @Inka has suggested allowing a wider target for your BG could help you reduce the stress around hypos, and also enable you to move more. Keep the questions coming. There is loads of experience to tap into on here. Step by step it will get easier.

 

[Flower]

Hi and welcome @Jen0623

I'm sorry you are having such a tough time, diabetes is relentless and burnout can be all consuming.

I realise you are on MDI but I went on a pump 25 years back after multiple disabling hypos and needing small amounts of insulin. The tiny increments of insulin you can get through a pump are such a safety net, 0.01 of a unit . I had a similar dread of injecting even a few units of insulin at a time due to an overwhelming fear of hypos. If you feel it is something you would consider I would ask about a pump especially with the hypos and other conditions you have. MDI is the back up situation for pump users and is an option to return to.

At the time I was dealing with hypos I was told that eating small amounts of carbs was ok to overcome the fear of larger insulin boluses. That can bring the worry of stacking smaller insulin doses and I don't know how grazing on smaller amounts would work with CF but it got me to a better place where I felt a bit safer to leave the house.

Do you have half unit pens for your insulin to fine tune insulin delivery a bit more?

I hope things settle for you.

 

[Jen0623]

Hi and welcome @Jen0623

I'm sorry you are having such a tough time, diabetes is relentless and burnout can be all consuming.

I realise you are on MDI but I went on a pump 25 years back after multiple disabling hypos and needing small amounts of insulin. The tiny increments of insulin you can get through a pump are such a safety net, 0.01 of a unit . I had a similar dread of injecting even a few units of insulin at a time due to an overwhelming fear of hypos. If you feel it is something you would consider I would ask about a pump especially with the hypos and other conditions you have. MDI is the back up situation for pump users and is an option to return to.

At the time I was dealing with hypos I was told that eating small amounts of carbs was ok to overcome the fear of larger insulin boluses. That can bring the worry of stacking smaller insulin doses and I don't know how grazing on smaller amounts would work with CF but it got me to a better place where I felt a bit safer to leave the house.

Do you have half unit pens for your insulin to fine tune insulin delivery a bit more?

I hope things settle for you.

Hello Flower, thanks for your message.
I currently can’t go on a pump, due to the transplants I’ve had. But my CF-diabetic team are in talks with my hospital -diabetic team to see if I can be considere. So I’m waiting for an update.

i do have a half unit insulin pen. So that does help with some things. With CF I need to consume carbs to help me gain weight and keep me safe from any infections I may get. The extra weight gives me the energy to fight the infection, sort of like a bear when in hybernation a doctor once told me