Type 1 for 41 years. Feels like I am losing my way.

fittaedae · Sep 12, 2017

Hiya,

I was diagnosed as Type 1 at the age of 6, I am now 47 years old and have been relatively lucky that I have been well controlled and have minimal complications.

I work from home now for our small business and I find I "forget" to inject and test when I wake despite having two reminders on my phone. My blood sugars are constantly high and its starting to feel like I am losing the battle

I have been waking with burning feet and its scared the living hell out of me. I have spoken to my DSN and they want me to test regularly and detail food intake, exercise, mood etc to see if we can get to the bottom of it.

Do any of you relate to this feeling? Just a feeling of apathy that seems to have sneaked up on me! I just cant seem to shake myself and get motivated to wise up! My poor brain is a fog and I'm getting very confused. But that could be my age How to you motivate yourself after so many years of being a pin cushion? I'd love to know how others deal with this. Thanks in advance

steve_p6 · Sep 12, 2017

I got a Freestyle libre, really helped because I could so easily see what goes on with BGs. 40yrs T1 so understand where you are at.

Juicyj · Sep 12, 2017

Hi @fittaedae Sorry to hear of your struggles.. I am only 5 years diagnosed so cannot comment on the 'years' however I do know it's easy to get diabetes burnout with the constant effort required to keep on the tightrope. I have to admit I sometimes forget to test or take insulin too, but i'm always doing lots of other things too, so it's just that my mind isn't always on the job in hand. I would second Steve's advice about getting a freestyle Libre - it does take some of the mental effort out of it, the other option is to speak to your DSN about other possibilities, perhaps a pump, if you have a new tool to help you manage the work then it could make your life easier and renew your interest in staying focused. I really do admire those who've had this longer than me, you've done so well already to manage this so try to give yourself a break and take it easier on yourself.

fittaedae · Sep 12, 2017

steve_p6 said:
I got a Freestyle libre, really helped because I could so easily see what goes on with BGs. 40yrs T1 so understand where you are at.

I would love one but unfortunately cannot afford it!

fittaedae · Sep 12, 2017

Juicyj said:
Hi @fittaedae Sorry to hear of your struggles.. I am only 5 years diagnosed so cannot comment on the 'years' however I do know it's easy to get diabetes burnout with the constant effort required to keep on the tightrope. I have to admit I sometimes forget to test or take insulin too, but i'm always doing lots of other things too, so it's just that my mind isn't always on the job in hand. I would second Steve's advice about getting a freestyle Libre - it does take some of the mental effort out of it, the other option is to speak to your DSN about other possibilities, perhaps a pump, if you have a new tool to help you manage the work then it could make your life easier and renew your interest in staying focused. I really do admire those who've had this longer than me, you've done so well already to manage this so try to give yourself a break and take it easier on yourself.

I am not eligible for a pump, and to be totally honest I don't want one. I am perfectly happy to inject, but that's just me. Going back to my mindfulness book and CD, possibly going to give Mediation a go also. I have bi-lateral shoulder issues and I am waiting for an appointment with the osteopathy clinic so exercise is restricted to cycling and walking at the moment. Have dabbled in yoga but now its impossible!

Bob991 · Sep 12, 2017

Juicyj said:
Hi @fittaedae Sorry to hear of your struggles.. I am only 5 years diagnosed so cannot comment on the 'years' however I do know it's easy to get diabetes burnout with the constant effort required to keep on the tightrope. I have to admit I sometimes forget to test or take insulin too, but i'm always doing lots of other things too, so it's just that my mind isn't always on the job in hand. I would second Steve's advice about getting a freestyle Libre - it does take some of the mental effort out of it, the other option is to speak to your DSN about other possibilities, perhaps a pump, if you have a new tool to help you manage the work then it could make your life easier and renew your interest in staying focused. I really do admire those who've had this longer than me, you've done so well already to manage this so try to give yourself a break and take it easier on yourself.

No matter what YOU MUST TEST. You can't control your blood sugar if you don't. I have been t1 for 52 years. when I was diagnosed in 1965 there was no test meters and had to stick to a controlled carb diet. I started then using a sliding scale injection routine. I still use it. I'm on NovoRapid and for me 1.5 units of insulin per 10g carb works. But to do that you MUST test.

Juicyj · Sep 12, 2017

Bob991 said:
No matter what YOU MUST TEST. You can't control your blood sugar if you don't. I have been t1 for 52 years. when I was diagnosed in 1965 there was no test meters and had to stick to a controlled carb diet. I started then using a sliding scale injection routine. I still use it. I'm on NovoRapid and for me 1.5 units of insulin per 10g carb works. But to do that you MUST test.

Agree you need to test but the OP is struggling and asking for help and advice to stay on track, so tips and advice on what works for others will help her, we all have different experiences here to share but support is key to giving others inspiration with how to manage this.

Deleted Account · Sep 12, 2017

Sounds as if you have diabetes burnout. And, after 41 years of carrying a nagging, annoying, petulant child-like disease around with you all the time, it is not surprising you want a break.
I too work from home. When I started, one of the hardest things was to get a rhythm to my days to do "normal" things. It is so easy to jump straight on my computer to check emails that came in overnight as soon as I get up and, finally, find time for a shower far later than I should. Over the last couple of years, I have had to be strict with myself - no computer time until I have showered and checked my BG. I still eat breakfast with the computer but not until I have given myself my insulin.
New toys like the Libre or pump can re-motivate some people but, if they are not options for you, you need to find another way.
To work from home on your own business takes a very strong, dedicated and disciplined person. Can your business spare some of that discipline for yourself? Think of yourself as a manager and your diabetes as your employee - as a manager, you have to give your employee a chance to be in control ... even when they are being annoying, petulant and child-like.
If you are not the manager in your business - you described it as "our business", can you get your business partner to help with your awkward, annoying, petulant, child-like colleague? Think of it as a business goal, perhaps?

Good luck.

Bob991 · Sep 12, 2017

Juicyj said:
Agree you need to test but if the OP is struggling then she's asking for help and advice to stay on track, so tips and advice on what works for others will help her, we all have different experiences here to share but support is key to giving others inspiration with how to manage this.

But to do this you must talk to your diabetic nurse or doctor. You need a regime and you need to stick to it. Clinic consultants here in Scotland are very good and will help as much as they can but you must talk about it.

fittaedae · Sep 12, 2017

helensaramay said:
Sounds as if you have diabetes burnout. And, after 41 years of carrying a nagging, annoying, petulant child-like disease around with you all the time, it is not surprising you want a break.
I too work from home. When I started, one of the hardest things was to get a rhythm to my days to do "normal" things. It is so easy to jump straight on my computer to check emails that came in overnight as soon as I get up and, finally, find time for a shower far later than I should. Over the last couple of years, I have had to be strict with myself - no computer time until I have showered and checked my BG. I still eat breakfast with the computer but not until I have given myself my insulin.
New toys like the Libre or pump can re-motivate some people but, if they are not options for you, you need to find another way.
To work from home on your own business takes a very strong, dedicated and disciplined person. Can your business spare some of that discipline for yourself? Think of yourself as a manager and your diabetes as your employee - as a manager, you have to give your employee a chance to be in control ... even when they are being annoying, petulant and child-like.
If you are not the manager in your business - you described it as "our business", can you get your business partner to help with your awkward, annoying, petulant, child-like colleague? Think of it as a business goal, perhaps?

Good luck.

Bob991 said:
No matter what YOU MUST TEST. You can't control your blood sugar if you don't. I have been t1 for 52 years. when I was diagnosed in 1965 there was no test meters and had to stick to a controlled carb diet. I started then using a sliding scale injection routine. I still use it. I'm on NovoRapid and for me 1.5 units of insulin per 10g carb works. But to do that you MUST test.

I do test but I have been told its not at the correct times, I will admit my head is all over the place just now. I have set the reminders on my meter and hopefully it will gee me up to test when it starts beeping.

fittaedae · Sep 12, 2017

Bob991 said:
But to do this you must talk to your diabetic nurse or doctor. You need a regime and you need to stick to it. Clinic consultants here in Scotland are very good and will help as much as they can but you must talk about it.

I have a brilliant Diabetes Nurse whom I can call if I am having problems, she can advise me on the testing and insulin but not able to help with the apparent burnout.

Neoncat · Sep 12, 2017

I found that meeting up face to face with other diabetics really helped. It made me feel less out there on my own just to have someone else say "yeah me too". My friends and family are all quite happy to listen to me talk but I always felt they never really got it. The mutual support really motivated me to try and get back on it. Have a look on Facebook to see if there are any groups nearby. If nothing else it was a fun night out.

fittaedae · Sep 12, 2017

helensaramay said:
Sounds as if you have diabetes burnout. And, after 41 years of carrying a nagging, annoying, petulant child-like disease around with you all the time, it is not surprising you want a break.
I too work from home. When I started, one of the hardest things was to get a rhythm to my days to do "normal" things. It is so easy to jump straight on my computer to check emails that came in overnight as soon as I get up and, finally, find time for a shower far later than I should. Over the last couple of years, I have had to be strict with myself - no computer time until I have showered and checked my BG. I still eat breakfast with the computer but not until I have given myself my insulin.
New toys like the Libre or pump can re-motivate some people but, if they are not options for you, you need to find another way.
To work from home on your own business takes a very strong, dedicated and disciplined person. Can your business spare some of that discipline for yourself? Think of yourself as a manager and your diabetes as your employee - as a manager, you have to give your employee a chance to be in control ... even when they are being annoying, petulant and child-like.
If you are not the manager in your business - you described it as "our business", can you get your business partner to help with your awkward, annoying, petulant, child-like colleague? Think of it as a business goal, perhaps?

Good luck.

I am so glad I am not the only one who grabs a coffee and checks the emails, I end up still sitting there and then realise its 10am and I've had no insulin. My wonderful partner and I own a small business. I admit we find out customers very very demanding where we are and they want an answer within 10 minutes if they email, phones are pretty busy and when we DO go on a small break the calls are forwarded to my phone and my partners phone just does not stop. Its pretty frantic sometimes but everyone in the industry says its the same for them! He is generally out the door at 7-7:30am and home again about 6-7pm, we have had a member of staff suddenly leave this week so its all feeling like the sky is caving in. I am alone all day, I start at 8am and can still be sitting in our office (extension at back of house) some nights well after 10pm.

I will start to think of my diabetes as an employee... that's made me think! Thank you!

fittaedae · Sep 12, 2017

Juicyj said:
Hi @fittaedae Sorry to hear of your struggles.. I am only 5 years diagnosed so cannot comment on the 'years' however I do know it's easy to get diabetes burnout with the constant effort required to keep on the tightrope. I have to admit I sometimes forget to test or take insulin too, but i'm always doing lots of other things too, so it's just that my mind isn't always on the job in hand. I would second Steve's advice about getting a freestyle Libre - it does take some of the mental effort out of it, the other option is to speak to your DSN about other possibilities, perhaps a pump, if you have a new tool to help you manage the work then it could make your life easier and renew your interest in staying focused. I really do admire those who've had this longer than me, you've done so well already to manage this so try to give yourself a break and take it easier on yourself.

Thanks I am my own worst critic, I will admit that x

Scott-C · Sep 12, 2017

fittaedae said:
I would love one but unfortunately cannot afford it!

As you're self employed, thought I'd post this link:
http://www.inputdiabetes.org.uk/cgm/tax-break/

I'm clueless about tax but the gist seems to be that a business can purchase libre for employees and get a tax break. So you'd still be paying for it but offset by paying less tax. Have no idea if it works but might be worth having a chat with your accountant or tax office.

fletchweb · Sep 12, 2017

fittaedae said:
Hiya,

I was diagnosed as Type 1 at the age of 6, I am now 47 years old and have been relatively lucky that I have been well controlled and have minimal complications.

I work from home now for our small business and I find I "forget" to inject and test when I wake despite having two reminders on my phone. My blood sugars are constantly high and its starting to feel like I am losing the battle

I have been waking with burning feet and its scared the living hell out of me. I have spoken to my DSN and they want me to test regularly and detail food intake, exercise, mood etc to see if we can get to the bottom of it.

Do any of you relate to this feeling? Just a feeling of apathy that seems to have sneaked up on me! I just cant seem to shake myself and get motivated to wise up! My poor brain is a fog and I'm getting very confused. But that could be my age How to you motivate yourself after so many years of being a pin cushion? I'd love to know how others deal with this. Thanks in advance

I've been living with Type 1 for 51 years, I'm 55 years old. I just go on automatic mode. I also have abandoned the approach of keeping my BGs within "the normal range" all the time because that's impossible and doctors who have that expectation, obviously don't have diabetes.
Instead I try to keep it under a benchmark anything over that benchmark I then take corrective action - so with me anything under 10 is good with me. I too have minimal complications (or no complications) I suspect if doctors looked hard enough they could find something - but I think half the battle of managing ones diabetes is to avoid the scare tactics commonly used by the health profession.

Juicyj · Sep 12, 2017

I think most of us are our own worst critics

Different perspective but perhaps take some time out as you are office bound so a couple of times a day either walk away from your desk in a park somewhere, say 15 minutes or just try a deep breathing exercise from youtube, put your phone on divert, we use a call answering service at our company so if no one is available to take calls they go through to another company who then emails us the message - they are worth their weight in gold, but as it's very often just me in the office I do this to take the dog for a walk and get some peace and quiet.

noblehead · Sep 12, 2017

fittaedae said:
I work from home now for our small business and I find I "forget" to inject and test when I wake despite having two reminders on my phone.

How about posting some reminders around your home, those Post-it Notes are ideal for sticking to things like beside drawers, mirrors & fridge door where your likely to see them when you wake and go downstairs.

TheBigNewt · Sep 12, 2017

fletchweb said:
I've been living with Type 1 for 51 years, I'm 55 years old. I just go on automatic mode. I also have abandoned the approach of keeping my BGs within "the normal range" all the time because that's impossible and doctors who have that expectation, obviously don't have diabetes.
Instead I try to keep it under a benchmark anything over that benchmark I then take corrective action - so with me anything under 10 is good with me. I too have minimal complications (or no complications) I suspect if doctors looked hard enough they could find something - but I think half the battle of managing ones diabetes is to avoid the scare tactics commonly used by the health profession.

I like this guy's attitude. He's obviously been through the whole gamut in his 55 years. No meters. Animal insulins. Glass syringes. I bet he ain't testing for ketones lol. I bet he isn't testing for protein in his urine either. And he's OK to boot!

fittaedae · Sep 12, 2017

Scott-C said:
As you're self employed, thought I'd post this link:
http://www.inputdiabetes.org.uk/cgm/tax-break/

I'm clueless about tax but the gist seems to be that a business can purchase libre for employees and get a tax break. So you'd still be paying for it but offset by paying less tax. Have no idea if it works but might be worth having a chat with your accountant or tax office.

Interesting, I will run this past our accountant. Thank you

Type 1 for 41 years. Feels like I am losing my way.

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