Awful 12 months - need to vent (sorry)

[T1Steve]

Hello from a newbie.

I'm at a very low point and I'm not sure where to turn.

History; I'm a 46 year old very active male (Mountain biking, climbing, hill walking etc) 5'8" and have never been over 10.5 stone.

Around a year ago I was feeling extremely lethargic and by october (2023) Id given up all forms of exercise as I could barely dress myself in the mornings. - blood test showed chronically low B12 and D3, and pre-diabetes. Started treatment for B12 & D3, but by April this year wasn't feeling much (any) better, and saw the GP again (by this point I had all the 'typical' symptoms of diabetes - I'd lost 1.5 stone, peeing, blurry vision etc.). After a blood test, within 24 hours I'd been prescribed Abasaglar and Trurapi (HBA1c was 125 (I think)) told I have type 1.

Things got a little better and my energy returned. Saw a consultant in July, and now have Libre, he confirmed type 1.

I had my large intestine removed when I was 18 (ulcerative colitis) and have since had a 'complex' relationship with food; I tend to only eat one meal a day - this has not worked with the diabetes, and has messed up 25+ years of food management.

Also, ANY form of gentle exercise (walking teh dog for 45 mins) takes my blood from 10mmol/l to 5. Any longer than that (or starting at less than 10) I literally need to eat. That is WITHOUT any Trurapi in my system. So, still no proper exercise for the last 12 months, as I need to eat constantly when doing anything remotely active. my basal is otherwise about right (I think).

To top it all, last friday (25th) I had a seizure (first one ever). I felt a light hypo coming on (I can feel it at about 5.0) ate some jelly babies but went into a seizure 20 mins later; blood never dropped below 4mmol/l. On the 5th Oct I tested positive for covid, and have since read that the chances of suffering a seizure after covid is about 0.9%, so I'm suspecting that was part of the cause.

So here I am today, I can no longer drive (which is a HUGE part of my life, including work), can't exercise, struggle to eat without discomfort, constantly need to be near a toilet, and my mental health is completely shot.


TLDR; Struggling with Type 1 & preexisting gut problems, can't exercise, had a seizure, can't drive, Have no life.


Don't know where to turn... all I can do is continue to 'cope'.

 

[MommaE]

Hello from a newbie.

I'm at a very low point and I'm not sure where to turn.

History; I'm a 46 year old very active male (Mountain biking, climbing, hill walking etc) 5'8" and have never been over 10.5 stone.

Around a year ago I was feeling extremely lethargic and by october (2023) Id given up all forms of exercise as I could barely dress myself in the mornings. - blood test showed chronically low B12 and D3, and pre-diabetes. Started treatment for B12 & D3, but by April this year wasn't feeling much (any) better, and saw the GP again (by this point I had all the 'typical' symptoms of diabetes - I'd lost 1.5 stone, peeing, blurry vision etc.). After a blood test, within 24 hours I'd been prescribed Abasaglar and Trurapi (HBA1c was 125 (I think)) told I have type 1.

Things got a little better and my energy returned. Saw a consultant in July, and now have Libre, he confirmed type 1.

I had my large intestine removed when I was 18 (ulcerative colitis) and have since had a 'complex' relationship with food; I tend to only eat one meal a day - this has not worked with the diabetes, and has messed up 25+ years of food management.

Also, ANY form of gentle exercise (walking teh dog for 45 mins) takes my blood from 10mmol/l to 5. Any longer than that (or starting at less than 10) I literally need to eat. That is WITHOUT any Trurapi in my system. So, still no proper exercise for the last 12 months, as I need to eat constantly when doing anything remotely active. my basal is otherwise about right (I think).

To top it all, last friday (25th) I had a seizure (first one ever). I felt a light hypo coming on (I can feel it at about 5.0) ate some jelly babies but went into a seizure 20 mins later; blood never dropped below 4mmol/l. On the 5th Oct I tested positive for covid, and have since read that the chances of suffering a seizure after covid is about 0.9%, so I'm suspecting that was part of the cause.

So here I am today, I can no longer drive (which is a HUGE part of my life, including work), can't exercise, struggle to eat without discomfort, constantly need to be near a toilet, and my mental health is completely shot.


TLDR; Struggling with Type 1 & preexisting gut problems, can't exercise, had a seizure, can't drive, Have no life.


Don't know where to turn... all I can do is continue to 'cope'.

I’m so sorry you are feeling like this, overwhelming I’m sure. All I can offer is I’ve experienced some of the same frustrations, including the seizure, (just over a year ago now), and encourage you to persevere, try and reassess, some ideas work, some don’t and some seem to then change, and believe it does get more manageable with experience. I found lots of support on here, it’s made all the difference, I encourage you to read on here, there always seems to be someone with a thought that might help. With regards to the driving, in my circumstance once the GP completed the required forms I was deemed OK to drive as long as I check my blood and act on it accordingly before doing so and periodically during long drives. Maybe you could look into that too.
I do hope you progress beyond cope.

 

[VashtiB]

Hello and welcome @T1Steve

That sounds really tough!

I'm glad you have found the forum. There are so many really knowlegeable people here and I'm sure some will post soo. I'll tag @EllieM @Antje77 and @Melgar who may be able to provide some better advice than I can.

Just be aware this is a great place to ask questions vent and get support.

Good luck!

 

[EllieM]

So here I am today, I can no longer drive (which is a HUGE part of my life, including work), can't exercise, struggle to eat without discomfort, constantly need to be near a toilet, and my mental health is completely shot.

In your position I would be looking for more support from my diabetic team and telling them the above. It may be that a different insulin regime would be better for you?

 

[becca59]

Welcome @T1Steve Well you have really been through the wringer, and you have every right to feel all the emotions you are feeling. I agree with @EllieM it is vital that you are in touch with your diabetic team at the hospital. These early months often need adjustment to insulins and your complicated medical history deserves much more support.
It sounds like the seizures and driving will sort itself out eventually. Just keep hopeful on that point.
As for food, I regularly only eat once a day. There is nothing that makes us eat anything we don’t wish to and if we don’t eat at all it shouldn’t matter. The correct insulin regime should help with this.
It sounds like getting back to exercise will be one of the most beneficial things for you mentally at the moment and your team should absolutely help facilitate that. Don’t lose heart, you have taken the first step by accepting you need help and asking complete strangers for advice.

 

[Hopeful34]

Also, ANY form of gentle exercise (walking teh dog for 45 mins) takes my blood from 10mmol/l to 5. Any longer than that (or starting at less than 10) I literally need to eat. That is WITHOUT any Trurapi in my system. So, still no proper exercise for the last 12 months, as I need to eat constantly when doing anything remotely active. my basal is otherwise about right (I think).

So sorry you've had such an awful year @T1Steve Totally agree with the good advice you've had above, but just wondered if you'd done any recent basal testing, because if you're going low without any fast acting insulin on board, it sounds as though you're basal is too high. However, as you're so newly diagnosed your pancreas is likely still producing some insulin at random times - honeymoon period, which can be tricky to manage, and where you need input from your hospital team.

Take care, and keep posting.

 

[Juicyj]

Hello @T1Steve Welcome to the forum, I have to admit that I felt like the rug had been pulled out from beneath my feet with with diagnosis, it was adjusting to the new norm which was hard to do, I took me well over 12 months to get my head round it all and start to see some normality. Great advice above about speaking to your team to try and adjust your insulin regime to suit your lifestyle.

Unfortunately I don't have much advice re: gut issues, however can you speak to your doctor and explain what's happening, see if there's anything that can be done to help alleviate this ?

Are you getting any support at home or from friends to help with access whilst you're not driving ?

Exercise is possible, in fact I exercise more now than prior to my diagnosis and ran a half marathon last Sunday and managed to stay relatively in range, it just requires a few extra things to think about, avoiding the hypo is my strategy as these can floor me in exercise, so I aim to start with levels above 9 mmol/l and with no quick acting insulin in my system - so depleted completely, I use jelly beans to top myself up when needed then.

Life going forward is about tweaking/adjusting and managing, try not to look back as this is where we start to ruminate and it can affect your mental health, try to focus on the things you can change now to improve your quality of life, your t1d can be adjusted so just getting the right support there will help greatly, also speak out, if you're not coping talk to others, it's vital to lean on people when you're not doing ok, we can all help.