Feeling alone

[SianyG]

hello just looking for a bit of reassurance as I know living with type 1 is not the easiest and I can’t imagine how it feels for everyone who has lived with it for several years!! Iv only been diagnosed 3 months and i only know one other person with it and that’s someone who I was in school with years ago. I’m 26 and I feel many days now I get moody and fed up, I feel like eating is now a chore, iv been managing my bloods ok but recently been having a few hypos but not any hypo symptoms! I feel alone and that my friends and people around me don’t understand, I don’t feel like I can talk to anyone because I feel like I’m just moaning and no one wants to hear about it! I just want to feel like there’s light at the end of the tunnel. I live alone and spend most of my days alone, I feel too anxiest to even go to the shop or leave my house when I’m not working. Today I went to the cinema and out for food with my closest friend and even then I found it hard to crack a smile. I’m normally a very happy positive person and I feel like iv lost myself. I’m sad most of the time, my fingers hurt and my injections sting I’m not looking for any sympathy as everyone is always going through something. I’m just glad I was able to get this off my chest. Thank you

 

[Robkww]

Hi @SianyG please realise life has many complications and you are coping with one of them, despite being new to it, in a positive way. Do not lose your mojo because of your T1, celebrate your ability to manage it and continue to be the happy, positive person you have been. I wish you well for the future.

 

[Daphne917]

Hi @SianyG welcome to the forum. I’m T2 diet controlled so do not know know what it is like to be a newly diagnosed T1 or have to have daily injections etc however I’m tagging other T1s such as @Robbity @Jaylee and @noblehead who will be able to emphasise and advise you.

 

[Jo_the_boat]

I agree with Rob above. Firstly, really well done for tackling this. It's not easy and I'm sure that many people have gone through a period of the glooms. Nobody can TELL you to cheer up, it doesn't work like that. Maybe what you can do is rely, to some degree, on new friends on here for advice and support. There is also a comprehensive food / recipe section and it has amazed me what I can eat. Don't bother about what you can't have, discover things you can. I know it's all a bit new (it is to me too) but, with help, you'll get there.

 

[lou258]

Hi I was diagnosed t1 in August. It’s a massive shock isn’t it? It is hard to adjust - some days I think I’m doing ok and other days I cry. But hope it’ll get better with time well done on managing your BG, I just try and think of every good BG day as a little less chance of developing any complications down the line.
Have you got a good friend you can discuss how you feel with - even if they can’t understand, talking helps. And as people have said loads of really nice people on here who will listen, other advice etc.
Try and keep smiling

 

[Jaylee]

hello just looking for a bit of reassurance as I know living with type 1 is not the easiest and I can’t imagine how it feels for everyone who has lived with it for several years!! Iv only been diagnosed 3 months and i only know one other person with it and that’s someone who I was in school with years ago. I’m 26 and I feel many days now I get moody and fed up, I feel like eating is now a chore, iv been managing my bloods ok but recently been having a few hypos but not any hypo symptoms! I feel alone and that my friends and people around me don’t understand, I don’t feel like I can talk to anyone because I feel like I’m just moaning and no one wants to hear about it! I just want to feel like there’s light at the end of the tunnel. I live alone and spend most of my days alone, I feel too anxiest to even go to the shop or leave my house when I’m not working. Today I went to the cinema and out for food with my closest friend and even then I found it hard to crack a smile. I’m normally a very happy positive person and I feel like iv lost myself. I’m sad most of the time, my fingers hurt and my injections sting I’m not looking for any sympathy as everyone is always going through something. I’m just glad I was able to get this off my chest. Thank you

Hi @SianyG ,

Welcome to the forum.

I feel the "light" at the other "end of the tunnel" is not always evident when one enters..
You need a torch!

This forum is wall to wall with some bright diabetics who can help light your journey.

Fluctuating sugar levels can cause mood swings. But your always welcome to "sound off" here!

Get hold of the book "Think like a pancreas." It can be downloaded too.

Tagging in @Scott-C he knows his D.

 

[Scott-C]

Hi, @SianyG , it's perfectly normal to feel down about it at the start. I was a bit younger than you when I was dx'd, 21 (there was me thinking my dad might get me a sports car for my 21st, but, no, I got a broken pancreas, thanks!).

I had a few temper tantrums to begin with: why me, why me, all that sort of stuff.

I'd been pretty active physically, ski-ing, cycling, sailing. I was in such a mess from the DKA (hospital had sent me home diagnosed with "exam stress", getting taken back the next day unconscious in an ambulance kinda convinced them) that I thought, well, that's it, I'm "disabled" and will just be sitting on the sidelines.

Anyway, that didn't last too long. After I started putting weight back on, started learning the rules of how much insulin to take, how to deal with hypos, I ended up getting back on the bike/boat and didn't look back.

It didn't happen overnight, more in stages, but most of us eventually reach a stage where we reckon, ok, I've kinda got this sussed, I can do this.

There's something I want to do, like going backpacking in Asia for 6 months? Hmm, yes, let's see, ok, thought about it, I reckon I'll need to take this much insulin and this much strips (persuading the gp to give me a prescription for that much took some doing, but that's another story!).

There's been times where I've been stood on my skis on a sunny April afternoon looking out over Glencoe, or looking down the length of Loch Maree with a rainbow in the background from my touring bike, or watching deer poking around outside my tent at 5am, or on a boat to an island off the coast of Cambodia, or threading through the Stockholm Archipelago, and T1 has barely existed in my mind in those situations. It's still been there, but only to the extent that I've had to test and inject a bit, but it sure as heck hasn't spoiled the views.

Some people might say, ooh, you're diabetic, are you sure you should be doing that? Heck, yes, once you get a bit more experience in adjusting doses etc. you'll hopefully become less anxious about what you can do, it'll build confidence, and confidence breeds confidence.

There's a few mind games you can play. Instead of viewing it as an enemy, a constant war, I try to think of it more as a wee bit of my body has gone wrong, so I need to help it, me, out. That way, it just seems more like co-operation than a fight.

Or maybe think about it as you looking after a niece or nephew. Sure, they can be demanding, but you're always going to bend over backwards to make sure they're safe. That's what you're doing, going about your usual pre-T1 life, but now additionally just keeping an eye on things to keep you safe by not going out of range too much. Imagine you're taking a niece and nephew to the zoo. The niece is well behaved and stays beside you. The nephew is a wee brat and keeps on running off and you have to chase him. You still love him but he needs a bit more attention. That nephew is your T1, keep him in line, don't let him run away. But still enjoy the zoo.

There's a good book about the discovery of insulin, Breakthrough...by Thea Cooper. It's on kindle. One of the angles is a T1 kid called Elizabeth Hughes, the daughter of a prominent politician at the time. It tells about her life on a starvation diet, her getting closer and closer towards death, and then she becomes one of the first to get insulin, and bounces back. I mention it because the book quotes at length a letter to her parents. She's decided she no longer needs her nurse, decides she's going to take responsibility for her shots, and says, "I'm going to be the captain of my own ship." It's a great way of thinking about it: T1 often surrounds us with hypo/hyper storms and if you're going to be a captain of your own ship, the trick is picking up experience, learning as you go, so that you can weather the storms, and come out of it saying, aye, see, I did that, nae problem.

Plus, you can also cheat a bit! One of the major grinds is the unpredictability of T1. Don't know if you're familiar with it, but have a look at freestyle libre. Instead of getting little snapshots from bg tests, libre tracks levels 24 hours a day and makes it much easier to spot developing hypos, so you can then tail them off with a few grams before they even happen. I've been using it for about a year now and it has made my life much easier. It levels the playing field. It's £100 per month, but it's recently been approved for use on NHS, but it'll be up to each individual health area to decide whether to prescribe and on what terms, so still a waiting game to see how that pans out.


Anyway, just wanted to finish off by saying, sure, it seems grim at the moment, but you'll come out of that tunnel eventually. All I know is that when I'm eventually lying on my death bed, I won't be thinking at all about how T1 has been a bit of a nuisance, I'll be thinking about all the places I've seen when I've been toddling around other countries with a backpack on which just happens to have some insulin in it.

 

[Robbity]

Hi @SianyG welcome to the forum. I’m T2 diet controlled so do not know know what it is like to be a newly diagnosed T1 or have to have daily injections etc however I’m tagging other T1s such as @Robbity @Jaylee and @noblehead who will be able to emphasise and advise you.

Unfortunately (in the sense that I'm the wrong flavour of diabetic to offer advice regarding T1 specifics) I can't help as I'm a currently unmedicated T2 - unless the forum software has thrown another wobbly and yet again re-labelled me as an insulin wielding T1.

@SianyG: The only advice I can offer - from my experience during long ago non-diabetic bad times - is that even though we can often feel that there will never be any light at the end of our tunnel, if we keep on staggering forward a step at a time we'll hopefully begin to see a tiny glimmer beckoning to us.

Robbity

 

[Freema]

just want to sent you a virtual hug <3 and hope you´ll learn to live with this condition in a positive way... I personaly think that type 1 will be cured/ or half cured in future... by in-operating new pancreas tissue one or more times in intestines...

Try to keep up your spirite even thought I can understand there is really nothing to smile for in the moment... send you my love.. and a hug

 

[SianyG]

Thank your to everyone who took time out of their day to send me these messages. Simple messages like these really do make all the difference in my day!! Thank you, your all amazing! @Freema @Robbity @Scott-C @lou258 @Jaylee @Jo_the_boat @Daphne917 @Robkww

 

[Grumpy ole thing]

hello just looking for a bit of reassurance as I know living with type 1 is not the easiest and I can’t imagine how it feels for everyone who has lived with it for several years!!

Hi @SianyG , I'm sorry you feel so unhappy, really it does get easier. Diabetes will only fill your days now because its new, you will find a balance and then things will settle down. Have you tried the DAFNE course to help you count carbs and adjust your insulin dose? x

 

[Daphne917]

Unfortunately (in the sense that I'm the wrong flavour of diabetic to offer advice regarding T1 specifics) I can't help as I'm a currently unmedicated T2 - unless the forum software has thrown another wobbly and yet again re-labelled me as an insulin wielding T1.

@SianyG: The only advice I can offer - from my experience during long ago non-diabetic bad times - is that even though we can often feel that there will never be any light at the end of our tunnel, if we keep on staggering forward a step at a time we'll hopefully begin to see a tiny glimmer beckoning to us.

Robbity

Oops! Sorry @Robbity meant @Robinredbreast

 

[Juicyj]

Hello @SianyG - I think what you are feeling is completely normal . Diagnosis is a shock there's a lot to learn but it does get a lot easier in time as your knowledge grows so will your confidence, you take small steps to start with then as your understand more about how carbs and insulin affect your BG levels you will start to run and really get going, try and go easy on yourself your body has been through a lot, but it will get a lot easier. Do try and talk to those around you about how you are feeling, they will appreciate it as they may be feeling a bit useless about not being able to help you, people have an instinct to want to help so opening up will bring you closer to those around you but also speak to your nurse about your hypos as well as how you are feeling, you need to explain that your not feeling it sometimes when you are going low, keeping good hypo awareness is pretty important so they can help review your care to see what can be done to improve this.

There's many helpful folk round here too so you'll never feel alone

 

[barriebanana]

Hi, @SianyG , it's perfectly normal to feel down about it at the start. I was a bit younger than you when I was dx'd, 21 (there was me thinking my dad might get me a sports car for my 21st, but, no, I got a broken pancreas, thanks!).

I had a few temper tantrums to begin with: why me, why me, all that sort of stuff.

I'd been pretty active physically, ski-ing, cycling, sailing. I was in such a mess from the DKA (hospital had sent me home diagnosed with "exam stress", getting taken back the next day unconscious in an ambulance kinda convinced them) that I thought, well, that's it, I'm "disabled" and will just be sitting on the sidelines.

Anyway, that didn't last too long. After I started putting weight back on, started learning the rules of how much insulin to take, how to deal with hypos, I ended up getting back on the bike/boat and didn't look back.

It didn't happen overnight, more in stages, but most of us eventually reach a stage where we reckon, ok, I've kinda got this sussed, I can do this.

There's something I want to do, like going backpacking in Asia for 6 months? Hmm, yes, let's see, ok, thought about it, I reckon I'll need to take this much insulin and this much strips (persuading the gp to give me a prescription for that much took some doing, but that's another story!).

There's been times where I've been stood on my skis on a sunny April afternoon looking out over Glencoe, or looking down the length of Loch Maree with a rainbow in the background from my touring bike, or watching deer poking around outside my tent at 5am, or on a boat to an island off the coast of Cambodia, or threading through the Stockholm Archipelago, and T1 has barely existed in my mind in those situations. It's still been there, but only to the extent that I've had to test and inject a bit, but it sure as heck hasn't spoiled the views.

Some people might say, ooh, you're diabetic, are you sure you should be doing that? Heck, yes, once you get a bit more experience in adjusting doses etc. you'll hopefully become less anxious about what you can do, it'll build confidence, and confidence breeds confidence.

There's a few mind games you can play. Instead of viewing it as an enemy, a constant war, I try to think of it more as a wee bit of my body has gone wrong, so I need to help it, me, out. That way, it just seems more like co-operation than a fight.

Or maybe think about it as you looking after a niece or nephew. Sure, they can be demanding, but you're always going to bend over backwards to make sure they're safe. That's what you're doing, going about your usual pre-T1 life, but now additionally just keeping an eye on things to keep you safe by not going out of range too much. Imagine you're taking a niece and nephew to the zoo. The niece is well behaved and stays beside you. The nephew is a wee brat and keeps on running off and you have to chase him. You still love him but he needs a bit more attention. That nephew is your T1, keep him in line, don't let him run away. But still enjoy the zoo.

There's a good book about the discovery of insulin, Breakthrough...by Thea Cooper. It's on kindle. One of the angles is a T1 kid called Elizabeth Hughes, the daughter of a prominent politician at the time. It tells about her life on a starvation diet, her getting closer and closer towards death, and then she becomes one of the first to get insulin, and bounces back. I mention it because the book quotes at length a letter to her parents. She's decided she no longer needs her nurse, decides she's going to take responsibility for her shots, and says, "I'm going to be the captain of my own ship." It's a great way of thinking about it: T1 often surrounds us with hypo/hyper storms and if you're going to be a captain of your own ship, the trick is picking up experience, learning as you go, so that you can weather the storms, and come out of it saying, aye, see, I did that, nae problem.

Plus, you can also cheat a bit! One of the major grinds is the unpredictability of T1. Don't know if you're familiar with it, but have a look at freestyle libre. Instead of getting little snapshots from bg tests, libre tracks levels 24 hours a day and makes it much easier to spot developing hypos, so you can then tail them off with a few grams before they even happen. I've been using it for about a year now and it has made my life much easier. It levels the playing field. It's £100 per month, but it's recently been approved for use on NHS, but it'll be up to each individual health area to decide whether to prescribe and on what terms, so still a waiting game to see how that pans out.


Anyway, just wanted to finish off by saying, sure, it seems grim at the moment, but you'll come out of that tunnel eventually. All I know is that when I'm eventually lying on my death bed, I won't be thinking at all about how T1 has been a bit of a nuisance, I'll be thinking about all the places I've seen when I've been toddling around other countries with a backpack on which just happens to have some insulin in it.

Excellent post

 

[debrasue]

Hi, @SianyG , it's perfectly normal to feel down about it at the start. I was a bit younger than you when I was dx'd, 21 (there was me thinking my dad might get me a sports car for my 21st, but, no, I got a broken pancreas, thanks!).

I had a few temper tantrums to begin with: why me, why me, all that sort of stuff.

I'd been pretty active physically, ski-ing, cycling, sailing. I was in such a mess from the DKA (hospital had sent me home diagnosed with "exam stress", getting taken back the next day unconscious in an ambulance kinda convinced them) that I thought, well, that's it, I'm "disabled" and will just be sitting on the sidelines.

Anyway, that didn't last too long. After I started putting weight back on, started learning the rules of how much insulin to take, how to deal with hypos, I ended up getting back on the bike/boat and didn't look back.

It didn't happen overnight, more in stages, but most of us eventually reach a stage where we reckon, ok, I've kinda got this sussed, I can do this.

There's something I want to do, like going backpacking in Asia for 6 months? Hmm, yes, let's see, ok, thought about it, I reckon I'll need to take this much insulin and this much strips (persuading the gp to give me a prescription for that much took some doing, but that's another story!).

There's been times where I've been stood on my skis on a sunny April afternoon looking out over Glencoe, or looking down the length of Loch Maree with a rainbow in the background from my touring bike, or watching deer poking around outside my tent at 5am, or on a boat to an island off the coast of Cambodia, or threading through the Stockholm Archipelago, and T1 has barely existed in my mind in those situations. It's still been there, but only to the extent that I've had to test and inject a bit, but it sure as heck hasn't spoiled the views.

Some people might say, ooh, you're diabetic, are you sure you should be doing that? Heck, yes, once you get a bit more experience in adjusting doses etc. you'll hopefully become less anxious about what you can do, it'll build confidence, and confidence breeds confidence.

There's a few mind games you can play. Instead of viewing it as an enemy, a constant war, I try to think of it more as a wee bit of my body has gone wrong, so I need to help it, me, out. That way, it just seems more like co-operation than a fight.

Or maybe think about it as you looking after a niece or nephew. Sure, they can be demanding, but you're always going to bend over backwards to make sure they're safe. That's what you're doing, going about your usual pre-T1 life, but now additionally just keeping an eye on things to keep you safe by not going out of range too much. Imagine you're taking a niece and nephew to the zoo. The niece is well behaved and stays beside you. The nephew is a wee brat and keeps on running off and you have to chase him. You still love him but he needs a bit more attention. That nephew is your T1, keep him in line, don't let him run away. But still enjoy the zoo.

There's a good book about the discovery of insulin, Breakthrough...by Thea Cooper. It's on kindle. One of the angles is a T1 kid called Elizabeth Hughes, the daughter of a prominent politician at the time. It tells about her life on a starvation diet, her getting closer and closer towards death, and then she becomes one of the first to get insulin, and bounces back. I mention it because the book quotes at length a letter to her parents. She's decided she no longer needs her nurse, decides she's going to take responsibility for her shots, and says, "I'm going to be the captain of my own ship." It's a great way of thinking about it: T1 often surrounds us with hypo/hyper storms and if you're going to be a captain of your own ship, the trick is picking up experience, learning as you go, so that you can weather the storms, and come out of it saying, aye, see, I did that, nae problem.

Plus, you can also cheat a bit! One of the major grinds is the unpredictability of T1. Don't know if you're familiar with it, but have a look at freestyle libre. Instead of getting little snapshots from bg tests, libre tracks levels 24 hours a day and makes it much easier to spot developing hypos, so you can then tail them off with a few grams before they even happen. I've been using it for about a year now and it has made my life much easier. It levels the playing field. It's £100 per month, but it's recently been approved for use on NHS, but it'll be up to each individual health area to decide whether to prescribe and on what terms, so still a waiting game to see how that pans out.


Anyway, just wanted to finish off by saying, sure, it seems grim at the moment, but you'll come out of that tunnel eventually. All I know is that when I'm eventually lying on my death bed, I won't be thinking at all about how T1 has been a bit of a nuisance, I'll be thinking about all the places I've seen when I've been toddling around other countries with a backpack on which just happens to have some insulin in it.

What a wonderful, positive post. Whether one is T1, T2 or anything in between, it would be very hard not to feel uplifted, encouraged and optimistic on reading this, even without all the brilliant advice it contains.
Respect, @Scott-C - you're an inspiration!