Feeling Hopeless!

[Nina8786]

I am 22 years old and have had type 1 diabetes for 11 years, the past few weeks i seem to be really anxious of getting complications, i haven't had the best control in 11 years but im trying now and i just keep thinking its too late to reverse any damage and this is causing me extreme anxiety. Does anyone have any advice for me please?

 

[kitedoc]

Hi @Nina8786, I was diagnosed at age 13 and remember learning about diabetes complications, having them used by health providers as a weapon to make me comply with their idea of treatment. Doing a medical degree at Uni made me even more worried when diabetes came up repeatedly in the course.
I was diagnosed in 1966 and now 51 years later I have no kidney, heart or substantial eye problems.
I had cataracts treated about 6 years ago (and I partly blame the Aussie sun for that)!!, carpal tunnel releases (tissue build up where a nerve goes through a tunnel in the wrist causing some nerve pressure), pesky things like triggers fingers (localised tissue swelling in finger tendon causing difficulty of tendon slipping through tissue pulleys with sudden slipping through causing a triggering movement). Just as well I did not have to use a gun in my vocation.!
Furthermore, back in 1966 there were no glucose meters, fancy insulins, insulin pens or pumps.
My endocrinologist tells me he welcomes all his new T1D patients with the advice to make sure they arrange good normal age retirement plans once they start employment. The lookout is that good these days.
The other thing is the teenage years are the second most rapid growth phase that us humans go through. I recall vividly the growth spurts where growth hormones ramp up, insulin requirements increase sometimes 3 times usual, appetite goes crazy and then some weeks later the hypos start and I was scrambling to reduce insulin doses fast enough.
How can any diabetic not have challenges keeping BSLs in range during this stage in their lives? And sometimes health professionals just do not get it.
To have survived teenagehood, not had major problems with BSLs, no hospitalisations or very few, is a major achievement.
I assume you are now through the worst of that phase but regretful that things did not go as well as you would have liked (or as well as your HPs demanded).
But ... you have learned a lot. One of my favourite cartoons shows a guy sitting in an office with a sign on the wall reading "Training Agency". Interviewer: "Mr Jones, what makes you think you are the best candidate for this head of management position" Mr Jones, "Well, I believe we learn from our mistakes. And I make enough to train everybody here"!
On this site plenty of us have made mistakes, learnt from them and had regrets. By sharing those experiences we can all learn, we can show that dire outcomes are not inevitable, that we are not alone.
Also, if we worry about the future, how can we enjoy the present? We do the best we can, we appreciate that sometimes things work out because we have learnt what went wrong last time, sometimes it works out well accidentally. Sometimes no matter what we do things go awry.
I have sometimes said that my body is like an orchestra or rock band with mischievous players. Sometimes the tune is harmonious but I cannot guarantee that yesterday's CD will sound the same as today. I can do what I can today, tomorrow is coming no matter what and I take steps not to come to harm (like wear ear protection).
Try not to take things too seriously. Self humour can be a wonderful salve: e.g. I used to hum an old, old pop song 'Needles and Pins' whilst I was giving myself injections. Or imagine I was practising javelin throwing. Sometimes. if my bsl was near low before an evening meal I would swop things around. dessert first to get bsl up more quickly (Topsy-turvey dinner) and I heard of one family where the son and husband of the mother with diabetic would bet on what her pre-dinner BSL would be and the loser did the washing up !
Finally, develop interests and hobbies - my avatar tells you of mine. Having some exercise component to them helps but also some socialising element ? photography ? craft work ? sport / gardening/ etc. I do however say that I draw the line at painting garden gnomes !! Distraction, social interaction, achievement all can be healthy.
Welcome to this site, fellow warrior. And a special tribute to all ladies with diabetes who are a great resource for you (and who would quite rightly hang me out to dry if I did not acknowledge them). I am not a chicken just a wise (deniably old) coot.

 

[EllieM]

I am 22 years old and have had type 1 diabetes for 11 years, the past few weeks i seem to be really anxious of getting complications, i haven't had the best control in 11 years but im trying now and i just keep thinking its too late to reverse any damage and this is causing me extreme anxiety. Does anyone have any advice for me please?

If it's any consolation I've been T1 since aged 8 and I was about your age when I went to my first hospital diabetic clinic (saw a private endocrinologist before then). I was introduced to my first glucometer and the doctors suggested I should try to get my average blood sugar down below 13 (I can't remember the exact figure but 13 comes to mind). Since then I've had better but middling control (mostly hba1Cs in 7s, a few 8s and some 6s when I was pregnant). My eyes aren't perfect but haven't needed treatment (I tighten up my control whenever my eye doctor complains) and I've got away without any other obvious complications (though I'm sure my body would be in better shape if I weren't diabetic). I shudder to remember the abuse I treated my body to when I was in my teens. (Think strawberry milkshake and a doughnut for tea, when I was on MDI so not injecting specifically for it.)

So, no point in agonising over past damage that may or may not have been done. Lots of "complications" can be halted or reversed by good/better control. It's easy to assume/fear that every new ache/pain/symptom is some weird and horrible diabetic complication. I can tell you now that at your age, chances are it isn't. Given the new technology, options for T1s your age are looking better and better, and there are already many many T1s who've been diabetic for decades and are still in good health, even though some of those first few decades were spent without access to blood testing equipment.

You don't have to be "perfect" all the time to achieve reasonable control. No doubt, like most of us, you'll have periods of good and less good control in the future. Ignoring your diabetes isn't helpful, but neither is worrying about past bad readings. Just don't give up, or at least, don't give up for long.

Good luck. Whatever happens, even if you just want a whinge about how unfair it is to have been saddled by this illness, there'll be someone on these boards whose been in a similar place, and will be able to give you some moral support.

 

[Nina8786]

Hi @Nina8786, I was diagnosed at age 13 and remember learning about diabetes complications, having them used by health providers as a weapon to make me comply with their idea of treatment. Doing a medical degree at Uni made me even more worried when diabetes came up repeatedly in the course.
I was diagnosed in 1966 and now 51 years later I have no kidney, heart or substantial eye problems.
I had cataracts treated about 6 years ago (and I partly blame the Aussie sun for that)!!, carpal tunnel releases (tissue build up where a nerve goes through a tunnel in the wrist causing some nerve pressure), pesky things like triggers fingers (localised tissue swelling in finger tendon causing difficulty of tendon slipping through tissue pulleys with sudden slipping through causing a triggering movement). Just as well I did not have to use a gun in my vocation.!
Furthermore, back in 1966 there were no glucose meters, fancy insulins, insulin pens or pumps.
My endocrinologist tells me he welcomes all his new T1D patients with the advice to make sure they arrange good normal age retirement plans once they start employment. The lookout is that good these days.
The other thing is the teenage years are the second most rapid growth phase that us humans go through. I recall vividly the growth spurts where growth hormones ramp up, insulin requirements increase sometimes 3 times usual, appetite goes crazy and then some weeks later the hypos start and I was scrambling to reduce insulin doses fast enough.
How can any diabetic not have challenges keeping BSLs in range during this stage in their lives? And sometimes health professionals just do not get it.
To have survived teenagehood, not had major problems with BSLs, no hospitalisations or very few, is a major achievement.
I assume you are now through the worst of that phase but regretful that things did not go as well as you would have liked (or as well as your HPs demanded).
But ... you have learned a lot. One of my favourite cartoons shows a guy sitting in an office with a sign on the wall reading "Training Agency". Interviewer: "Mr Jones, what makes you think you are the best candidate for this head of management position" Mr Jones, "Well, I believe we learn from our mistakes. And I make enough to train everybody here"!
On this site plenty of us have made mistakes, learnt from them and had regrets. By sharing those experiences we can all learn, we can show that dire outcomes are not inevitable, that we are not alone.
Also, if we worry about the future, how can we enjoy the present? We do the best we can, we appreciate that sometimes things work out because we have learnt what went wrong last time, sometimes it works out well accidentally. Sometimes no matter what we do things go awry.
I have sometimes said that my body is like an orchestra or rock band with mischievous players. Sometimes the tune is harmonious but I cannot guarantee that yesterday's CD will sound the same as today. I can do what I can today, tomorrow is coming no matter what and I take steps not to come to harm (like wear ear protection).
Try not to take things too seriously. Self humour can be a wonderful salve: e.g. I used to hum an old, old pop song 'Needles and Pins' whilst I was giving myself injections. Or imagine I was practising javelin throwing. Sometimes. if my bsl was near low before an evening meal I would swop things around. dessert first to get bsl up more quickly (Topsy-turvey dinner) and I heard of one family where the son and husband of the mother with diabetic would bet on what her pre-dinner BSL would be and the loser did the washing up !
Finally, develop interests and hobbies - my avatar tells you of mine. Having some exercise component to them helps but also some socialising element ? photography ? craft work ? sport / gardening/ etc. I do however say that I draw the line at painting garden gnomes !! Distraction, social interaction, achievement all can be healthy.
Welcome to this site, fellow warrior. And a special tribute to all ladies with diabetes who are a great resource for you (and who would quite rightly hang me out to dry if I did not acknowledge them). I am not a chicken just a wise (deniably old) coot.

thankyou so much for your reply! this really helped me

 

[Nina8786]

If it's any consolation I've been T1 since aged 8 and I was about your age when I went to my first hospital diabetic clinic (saw a private endocrinologist before then). I was introduced to my first glucometer and the doctors suggested I should try to get my average blood sugar down below 13 (I can't remember the exact figure but 13 comes to mind). Since then I've had better but middling control (mostly hba1Cs in 7s, a few 8s and some 6s when I was pregnant). My eyes aren't perfect but haven't needed treatment (I tighten up my control whenever my eye doctor complains) and I've got away without any other obvious complications (though I'm sure my body would be in better shape if I weren't diabetic). I shudder to remember the abuse I treated my body to when I was in my teens. (Think strawberry milkshake and a doughnut for tea, when I was on MDI so not injecting specifically for it.)

So, no point in agonising over past damage that may or may not have been done. Lots of "complications" can be halted or reversed by good/better control. It's easy to assume/fear that every new ache/pain/symptom is some weird and horrible diabetic complication. I can tell you now that at your age, chances are it isn't. Given the new technology, options for T1s your age are looking better and better, and there are already many many T1s who've been diabetic for decades and are still in good health, even though some of those first few decades were spent without access to blood testing equipment.

You don't have to be "perfect" all the time to achieve reasonable control. No doubt, like most of us, you'll have periods of good and less good control in the future. Ignoring your diabetes isn't helpful, but neither is worrying about past bad readings. Just don't give up, or at least, don't give up for long.

Good luck. Whatever happens, even if you just want a whinge about how unfair it is to have been saddled by this illness, there'll be someone on these boards whose been in a similar place, and will be able to give you some moral support.

Thankyou!!!

 

[Knikki]

Hi @Nina8786 another long termer here bit like @kitedoc grew up in the 70's and 80's days before the interwibble, testing with kits that were at least 5 hours out, if you were lucky, so I must have had some horrendous hypo's and hyper's (not that I knew about it) and I am still here to tell the tale

So long as you look after yourself, keep a sense of humour and don't get to hung up about numbers then you should be OK just like @EllieM says.

The important thing to do is ask questions of both the medical team and here on the forum, there is always someone around that will give some help

 

[Nina8786]

Hi @Nina8786 another long termer here bit like @kitedoc grew up in the 70's and 80's days before the interwibble, testing with kits that were at least 5 hours out, if you were lucky, so I must have had some horrendous hypo's and hyper's (not that I knew about it) and I am still here to tell the tale

So long as you look after yourself, keep a sense of humour and don't get to hung up about numbers then you should be OK just like @EllieM says.

The important thing to do is ask questions of both the medical team and here on the forum, there is always someone around that will give some help

Thankyou so much, really helped me and my anxiety!

 

[Timostags]

I was diagnosed at 11 and have had T1 for twenty years. The fast majority of that I didn't control it. I always tried to forget I had it. I would do the injections but might go a full week without checking my levels. Deep down I feared diabetes and thought I could just bury my head in the sand.
Things are under control (mostly) now and I have no long term health issues from the abuse I gave my body.

I think alot of the time doctors try to put fear into younger people. Now I'm a little older I feel like they make me feel foolish (it's soo easy to manage diabetes, it's just injecting the perfect amount of insulin and factoring in the thousands of other factors that can change your BG). I would like to see more help with mental health being offered. I think the main factor in my management of diabetes over the years has been the state of my mind.

I find these forums really helpful. Nobody knows who you are, nobody judges you. and we go through the same **** you do.

 

[LooperCat]

Hi, it’s not easy, is it? I’ve had it 20 years now (diagnosed at 24) and apart from a brief spell in the early 2000s when I was pregnant, and since the beginning of this year, I’ve taken terrible care of myself - I would go months without testing or taking my quick acting insulin, just the basal in order to not die. I think I hoped if I ignored it it would go away...

However...

Since I got control of things this year I’ve noticed some of the beginnings of issues I was getting are receding. The slight numbness in my toes is going, for starters. Frozen shoulders are thawing out, and a nasty pain in my jaw (trigeminal neuralgia) has gone, literally as I was about to be referred for some major surgery on my head.

It’s never too late to get to grips with it, and any damage can possibly heal. You’re in the right place to get support from people who live this every day. What sort of kit are you using, and what’s your usual eating/dosing regime?

 

[Alison54321]

This is a difficult issue, because it would be wrong not to warn people with T1D about the serious risks of complications, but on the other hand, making people worried, and anxious, isn't a good thing.

There is quite a lot of anecdotal evidence about people reversing complications, when they improve blood sugar control. So it is highly likely that if you have damaged your body then improving blood sugar control now, will reverse the damage, if there is any, which there may well not be.

The risk of complications increases the longer someone has it, and the higher their HbA1cs are. I borrowed this graph,below, from twitter, as you can see the risks start to increase with HbA1cs above 9%, but that would depend on amount of time, and get higher above 12%, but that would be over a period of time.

Though you may be unhappy with your blood sugar control, I suspect it's not be regularly above 12%, which would a bit risky.

Other factors that reduce the risk of complications are exercise, and a healthy diet.

I think it's important to be aware of the risk, and not to be complacent, and to manage your blood glucose as well as you can, but I also think it's important to not be too anxious about complications. Try not to worry, good control now will help your body heal, because bodies do heal, if you look after them well. So if there is any damage, good control now, especially with a healthy diet, should reverse it. That's if there is any damage, which there may well not be.

 

[EllieM]

This is a difficult issue, because it would be wrong not to warn people with T1D about the serious risks of complications, but on the other hand, making people worried, and anxious, isn't a good thing.

There is quite a lot of anecdotal evidence about people reversing complications, when they improve blood sugar control. So it is highly likely that if you have damaged your body then improving blood sugar control now, will reverse the damage, if there is any, which there may well not be.

The risk of complications increases the longer someone has it, and the higher their HbA1cs are. I borrowed this graph,below, from twitter, as you can see the risks start to increase with HbA1cs above 9%, but that would depend on amount of time, and get higher above 12%, but that would be over a period of time.

Though you may be unhappy with your blood sugar control, I suspect it's not be regularly above 12%, which would a bit risky.

Other factors that reduce the risk of complications are exercise, and a healthy diet.

I think it's important to be aware of the risk, and not to be complacent, and to manage your blood glucose as well as you can, but I also think it's important to not be too anxious about complications. Try not to worry, good control now will help your body heal, because bodies do heal, if you look after them well. So if there is any damage, good control now, especially with a healthy diet, should reverse it. That's if there is any damage, which there may well not be.

That is an awesome graph, and puts a lot of things into perspective. I am beginning to see why my specialist wasn't interested in getting me to reduce my blood sugars (HbA1C on 7) but instead wanted me to increase them, because I was losing hypo awareness and the risks of dying through a hypo go up as your blood sugar goes down (at least it does for me since I lose awareness). But I'd love to know what period of time those hbA1Cs refer to? Is this people who've been diabetic for 10 years, 20, 30, 48 (that's me)?

 

[Alison54321]

That is an awesome graph, and puts a lot of things into perspective. I am beginning to see why my specialist wasn't interested in getting me to reduce my blood sugars (HbA1C on 7) but instead wanted me to increase them, because I was losing hypo awareness and the risks of dying through a hypo go up as your blood sugar goes down (at least it does for me since I lose awareness). But I'd love to know what period of time those hbA1Cs refer to? Is this people who've been diabetic for 10 years, 20, 30, 48 (that's me)?

Unfortunately, there's no information on time scale on the graph, which is a shame, but I saw it on twitter the other day, and thought it provided useful perspective.