So many challenges.

[philly1991]

Hi all, me again.
Still facing the same challenges, things just seem to have gotten worse. My most recent hba1c is shocking and I feel absolutely dreadful all of the time. I know it's my own doing which is why I'm embarrassed and ashamed but I just feel powerless and don't know how to turn this around. Even when I try my numbers just aren't moving and then I lose the motivation so easily.

I am under the care of the diabetic nurse at my GP, I have asked to see a consultant and received an appointment for this but the appointment was cancelled with no explanation and has yet to be rescheduled.

I have gone so far beyond burn out I can't even begin to explain the turmoil. I know ultimately the ball is in my court and things will only change if I change them. I do feel there is a huge mental block there though which I could use support to overcome but my nurse always tells me there is nothing like that in our area.

If anybody can help in anyway I'm open to all suggestions.

Thanks all.

 

[Juicyj]

Massive hug @philly1991 please don't beat yourself up, it's an incredibly hard condition to live with as we all know.

What do you feel your obstacles are ? What insulin are you using and pump/injections ? Have you attended any courses like DAFNE ?

Happy to buddy on messages with you to give you some support, it does help to have someone you can chat to.

 

[philly1991]

I feel like my biggest obstacles are psychological. There's definitely some kind of barrier there. NovoRapid is my bolus and Tresiba my basal. I attended DAFNE and I really enjoyed it and found it really useful but once left to my own devices I just fall into bad habits and have very little motivation.

 

[Juicyj]

How do you feel about your T1d ? Do you feel there is any anger/denial about it ?

In regards to motivation, that's down to you to decide, mine is quite simple, I don't want to go blind or be a burden to my family, I don't think I could continue if my condition deteriorated to such an extent that I would need a family member to look after me, and that quite simply keeps me focused day in day out, each time I see the high number I act on it, I either bolus to correct or exercise. This is where having a buddy to chat to really does help, learn from others what motivates them. It's difficult living with a health condition where the effects of what we do daily aren't visible but using a target range combined with your drive and determination can help to keep you on track.

 

[In Response]

My motivation was the same as @Juicyj - I want to remain healthy and not be a burden to anyone.
I say "was" because, it then became habit. I am now as unlikely to not test my BG or give myself insulin as I am to forget to clean my teeth.

 

[philly1991]

Alot of anger, denial perhaps not so much. I understand the complications associated with long term hyperglycemia and don't want to experience any of those but for some reason it just isn't enough to keep me in good habits and I just don't know why.

 

[Julie121212]

Hi @philly1991

I felt for you in your message as I was in a similar position and 5 things helped me the most:

1. A friend told me to bring structure to my “free days”. So even though I was allowed free days I still needed to have some structure around them. I also realised I was against disciplining myself because I didn’t realise it was to be MY structure, not someone else’s being imposed on me.

2. Having set carbs / portions at set times of the day. Anything I chose. It was up to me but it was once again MY structure. I used myFitnessPal to help with this.

3. Making sure I understood the amount of time to pre-dose before meals, usually around 10 mins for me depending on the types of carbs. And importantly, keeping notes for common meals.

4. I was realising that any meal that had over 15g fat (seen from entering into myFitnessPal or checking on labels) was causing slight increases in blood sugar around 3 hours after the meal. My new CGM blood sugar sensor was showing me this clearly. (First time CGM use in 2020 helped me out of all things the most). So I kept most meals at 15g fat or under. Other times I had more fat and kept a close eye around the 2-4 hours mark and had some insulin. I also had a lot of repeat meals so I had good insulin notes for each meal. E.g. 2 fast 10 mins before meal, 1 fast after meal, 2 actrapid (slower insulin) 2 hours after meal.

5. This was definitely one of the most helpful. I found two other aspects of my life that increased my overall motivation and that rubbed off on my diabetes management too. The two aspects were challenging myself more in my career and taking on more work / more clients. And challenging myself with 4-5 times a week exercise. Those other areas had structure and motivation and that helped steady my diabetes.

I think it is a wonderful thing that you’re here reading and willing to learn so that is an excellent gift to yourself. Julie

 

[Juicyj]

Hi @philly1991

I was angry too for a while, it was hard to accept that where I’d once been healthy and never poorly that I’d become reliant on medication to stay alive, I felt robbed. It’s not easy though living with anger and it can affect those around you too, I tried meditation which was really helpful as it bought me peace and now I cope with exercise, I try to remember that I am still the same person but with a little modification now. Finding peace has bought acceptance and more resilience too in coping with the ups and downs of t1d.

Please have a chat with your DSN about how you are feeling - they can put you in touch with some support to help you mentally, getting support is vital and they do appreciate how difficult it is living with t1d. Maybe just deal with this first, getting your head in the right place will in turn then help you to cope better with your t1d in time but having a healthy mental attitude is the keystone for managing well with t1d.