Struggle

Hi, I'm a type 1 diabetic of 33 years and have been working from home since last March. I have always just sort of muddled through and done my best and have always said that I think perfect control and real life in my case just aren't possible or it doesn't feel as if that's the case.

So during lock down I've managed to get my HBA1C to 7.2% which is the best I think it's ever been! but boy it's taken effort and I now worry that even though I want life to go back to normal for everyone, I may struggle to reach these levels again- I'm using a freestyle libre (a game changer imo) and am averaging about 17 scans a day, that just won't be possible in the work place.

Having had diabetes lots of years I find I've gone through stages, I was pretty shy as a child and to be honest most people had no clue I had diabetes, then in my 20s I was terrified of it and ran my blood sugar on the higher side, this was instilled into me by people looking after me too (I'm not blaming anyone) and then when my son was born (I was 30) that was the game changer where I thought right it's not just about me anymore I have to be healthier so I can be the best Dad I can be, have always felt it's a very misunderstood and lonely illness.

So right now, I'm happy things are going back to normal but wondering how I can maintain the same level of control with living a more routine life I've also gone from not wanting to talk about the condition to pretty much not wanting to shut about it! so if anyone has tips on support groups or telephone numbers etc that might be worth seeking out this would be useful too, I'd also like to know if anyone else has similar experiences, thankyou.

EllieM said:

Welcome to the forums. Though I've come to these forums late in my T1 life (last 4 years of my 51 year T1 journey) I can honestly say they've been really supportive, whether you just want advice or just to have a general winge about the variability of a T1's blood sugar (or any other type of diabetic).

If you need a diabetic phone helpline, the diabetes.org.uk have one
Diabetes UK Helpline | Diabetes UK

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Thank you I will keep having a look, like I touched on I'm now at the point of wanting to really get on top of things!

Juicyj said:

Hello @moorby86

I have to admit that despite the circumstances, lockdown has helped many type 1's manage their control more easily. It's the fact of having the space and routine to focus more on management, less stress and the opportunity to exercise more too. It's been helpful in so much as feeling more in control of managing it better and feeling more at ease with it all.

I agree it's a lonely condition to deal with, no one else around me get's it, and very often it's easier not to tell people than face the mis-information/stereo typing and comments from others.

Going back to 'normal' what has changed for you apart from increasing the amount of scans you do that's helped improve your control ?

There's always someone around here to rant and rave at if you need to

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Juicyj said:

Hello @moorby86



I have to admit that despite the circumstances, lock down has helped many type 1's manage their control more easily. It's the fact of having the space and routine to focus more on management, less stress and the opportunity to exercise more too. It's been helpful in so much as feeling more in control of managing it better and feeling more at ease with it all.

I agree it's a lonely condition to deal with, no one else around me get's it, and very often it's easier not to tell people than face the mis-information/stereo typing and comments from others.

Going back to 'normal' what has changed for you apart from increasing the amount of scans you do that's helped improve your control ?

There's always someone around here to rant and rave at if you need to

Click to expand...

Yes the lock down has been really good for control but I can't be happy about lock down given the circumstances! I'm just been reflective, the libre really has been amazing in the few years I've used it so hopefully that continues helping my control. Totally agree R:E exercise, I've made sure I take a walk on every break, throughout lock down I've managed to get myself debt free for the first time in about 10 years too so in a perverse way it's been a good lock down on a personal level (I'm not saying I wanted any of this to happen).

No one around me gets it no not at all, and I don't feel sorry for myself but that's just how it is, I think maybe the fact I'm on such a push to get better control that sometimes (like today) I can feel a bit worn down by it and think oh wow it's taking such an effort will it always be like this.

I guess it's a bit strange, prior to lock down I went to lots of gigs and had a fairly busy social life along with looking after my 5 year old. The latter hasn't changed, but I do wonder what it's going to be like once I go back to doing the things I was prior to lock down and whether I can still drill down on control- I've been volunteering for the Samaritans throughout lock down and I've noticed when I do those shifts that when my control goes a bit more erratic! so I definitely need to focus around doing normal things and having good control rather than just been able to boss it when I'm sat at home able to check frequently.

I've also maybe gone from not showing enough interest when I was younger to showing too much now haha, the diabetic team at my local hospital are fantastic too which is helpful because I never got on with the previous guys and stopped going, it does feel like the care etc around diabetes has come on a lot and prior to lock down I was seeing a diabetic specialist psychologist (that's probably not the right title) but something I think they definitely need to do more of because they biggest struggle for me has always been the mental aspect of it!

Thank you r:e the rant comment

Wanderer89 said:

My daughter was born last year I was 30. The first 6 months was such hard work managing diabetes & bringing up a newborn at the same time without the use of a libre I found exhausting. Felt the exact same way as you do. Lockdown in general has definitely helped though. Will definitely change things for the better once all this is over. Good luck!

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Yes absolute game changer the Libre, a lady from JDRF called me last week and mentioned the artificial pancreas, hadn't heard much about this but will have a look into it too! anything that makes life easier has to be good, good look with parenthood and ye I agree with changing things for the better

Juicyj said:

I am a mum too so can appreciate how priorities change, i've learned over time to accept imperfection, as someone who was always about getting things right I found type 1 to be a massive curve ball to accommodate mentally, I couldn't deal with being out of range and got angry with myself for not getting it right - as you can appreciate you can't last long with that mentality, so now I don't bat an eyelid at double figures, but instead take it as a prompt to adjust and carry on.

I use a pump and the Dexcom G6 and can honestly say the G6 had revolutionised control massively for me, it's enabled me to get more active and be more flexible, my team are also brill even with the lockdown they are still there for me and fully supportive, you do need a support team for this so having people around you who can help you make the best decisions are vital, instagram also has a big t1 group so look at other ways to tap into support

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Thank you I'll look into those resources, and I can relate to the feeling frustrated by double figures but I guess it's better caring about that than to not be bothered- overall I think I do ok, I'm in target 70% which I'm working on getting better and touch wood never have hypo's that I can't easily fix, one of the nurses explained to me that even non diabetics can get fairly high readings (or low) and that things like stress effect them. I haven't ever used a pump or been interested in them but the continuous loop pumps sound interesting, the diabetes team didn't sound overly keen on that though and I'd probably have to fund it myself by the sounds! one life goes back to been a bit more normal I'll look into local support groups too as I feel I have something to give given the length of time I've had diabetes and that I'll no doubt learn plenty too! thanks and good luck