explaining what it's really like to live with Type 1

dundee234 · Jul 5, 2016

alaska said:
Currently, life as a type 1 for me is scanning my arm with my Libre every half hour or so and taking a series of small injections (typically around 10 a day at present) through the day.

Injections and Libre scanning is the relatively easy part.

Needing to sometimes wait to eat until your sugar comes down so that you don't spike your sugar levels super-high from an already high level is one of the annoyances.

Having to make dozens of not easy decisions about how much to inject and when, what to eat, how and when. Taking into account a range of different factors every single can be mentally tiring some days.

Never being able to go much more than 500-yards without taking kit and glucose with you just in case your levels start dropping (or sometimes rising -depending how far you're going).

Having your emotions and ability to cope (physically and mentally) tied to your sugar levels. Low sugar levels making you slow and unable to cope with usual tasks that would be a doddle. High sugar levels making you irritable and/or lethargic plus can also initiate short term depressive symptoms. Both low and high sugar levels amplify emotions making it that bit harder to keep one's head together under some situations.

Having to delay or interrupt sex because of low blood sugar.

Urinary tract infections being more likely if sugar levels have been high for several hours or over a number of days -particularly if stressed at the same time.

Occasionally having to battle off feeling depressed about the risk of developing long-term complications if sugar levels having been high for longer than I'd like.

Mostly for me, type 1 diabetes is fine to deal with when control is good. But, when control goes a bit skewiff, the little persistent things can add up to the short term difficulties and that's when things get tough and you want to scream a bit inside or out.

Type 1 can amplify things. When life is tough, the type 1 makes everything that bit harder. However, perhaps the dealing with the tough stuff makes us a bit sunnier and brighter when the good times do happen?

Ed

Hi there Ed and am pleased that your coping as well as you can do having had Type 1 for 27 years and I am still coping with it too and have had it for 52 yrs and still ongoing. It was a lot to deal with but having had it since childhood it is easier to accept and to get used to. But I still have my ups and downs and at times suffer from what the Doctors call Diabetes burnout and am on anti depressants too and take same insulin as you but not so lucky to have a Livre as here it costs over £250 which I simply cannot afford to spend. But I use my Freestyle Insulinx blood machine and just suffer with hard finger tips that at times will not belled as have used them far too much over the years. There are worse things than Diabetes for sure but having had it for so very long now I just live from day to day and eat as well as I can and do the correct things and feel that this is why I have done so well up to now. But I only found out into my 40's that long term Diabetes causes other problems to us that we only find out about when we get older. I have had carpel Tunnel in both hands and got operations on both hands and then I got what they call trigger finger when the fingers lock and it has happened to mine but not all at the same time and so far have had 7 fingers operated on and then am told that my hands will not be as strong as they were and that it may or could return but so far "Touch Wood" have been lucky and they have been good and my ops were about 8yrs ago now and hands are weaker but fine so far.
I wish and hope that I live to see a CURE in my Lifetime but will not hold my breath but hope that it will happen for all of us with Type 1 as we have to have all the shots daily and blood tests and the rest that foes with it. I wish you all the very Best Ed with your Type 1 and keep positive as you seem to be doing and look after yourself and things will glide along just fine. And I am 58 yrs old now and got it at 6 yrs old and was also Diagnosed in Africa Kenya to be exact as I was living there when I was a youngster. I still work and eat as well and as good as I can and I go out too and as long as I keep my insulin and bloods okay we can live just as good as a Normal person. Take care now and nice to read about your Diabetes and I wish you well for a Good Futrue and Stay well and Stay safe and just keep taking the Insulin and bloods too. Good Luck to you xx

donnellysdogs · Jul 5, 2016

himtoo said:
thanks @donnellysdogs
your post is exactly what I think as well -- C gets a lot of press and support for terminal conditions ( rightly so ) but D gets nothing in ongoing "living with a chronic illness" that has the potential to shorten our lives.
a well spoken comment !!

But our Centre isn't just for terminally ill, it's for people that are struggling to cope. Just so many diabetic's of all types also need a place like this purpose built therapy centre.

Persons with MS and Parkinson's etc can access (I know it isn't actual therapy) physio and treatments etc..

There is just nothing for diabetic's at any hospital to help with any anxiety or normalisation especially for children and parents.

himtoo · Jul 5, 2016

@donnellysdogs
wrong choice of terminology - sorry
C gets a lot of media, and practical support for terminal and "livable with" conditions
D gets nothing in comparison and in reality

TJR56 · Jul 6, 2016

Snapsy said:
Hi @TJR56 - thank you so much - no I don't blog, but I do find that writing stuff down can sometimes help to get my thoughts in order. I love your card-playing analogy - that's absolutely right!

Thanks @tim2000s - what's so brilliant about this forum is the fact that there are so, so many different experiences out there - and it's great to have access to loads of stories so as to be able to see every side of what might be experiences - or potential experiences - of our own.

You are very welcome.

alaska · Jul 6, 2016

dundee234 said:
Hi there Ed and am pleased that your coping as well as you can do having had Type 1 for 27 years and I am still coping with it too and have had it for 52 yrs and still ongoing. It was a lot to deal with but having had it since childhood it is easier to accept and to get used to. But I still have my ups and downs and at times suffer from what the Doctors call Diabetes burnout and am on anti depressants too and take same insulin as you but not so lucky to have a Livre as here it costs over £250 which I simply cannot afford to spend. But I use my Freestyle Insulinx blood machine and just suffer with hard finger tips that at times will not belled as have used them far too much over the years. There are worse things than Diabetes for sure but having had it for so very long now I just live from day to day and eat as well as I can and do the correct things and feel that this is why I have done so well up to now. But I only found out into my 40's that long term Diabetes causes other problems to us that we only find out about when we get older. I have had carpel Tunnel in both hands and got operations on both hands and then I got what they call trigger finger when the fingers lock and it has happened to mine but not all at the same time and so far have had 7 fingers operated on and then am told that my hands will not be as strong as they were and that it may or could return but so far "Touch Wood" have been lucky and they have been good and my ops were about 8yrs ago now and hands are weaker but fine so far.
I wish and hope that I live to see a CURE in my Lifetime but will not hold my breath but hope that it will happen for all of us with Type 1 as we have to have all the shots daily and blood tests and the rest that foes with it. I wish you all the very Best Ed with your Type 1 and keep positive as you seem to be doing and look after yourself and things will glide along just fine. And I am 58 yrs old now and got it at 6 yrs old and was also Diagnosed in Africa Kenya to be exact as I was living there when I was a youngster. I still work and eat as well and as good as I can and I go out too and as long as I keep my insulin and bloods okay we can live just as good as a Normal person. Take care now and nice to read about your Diabetes and I wish you well for a Good Futrue and Stay well and Stay safe and just keep taking the Insulin and bloods too. Good Luck to you xx

Thanks dundee234 -wishing you the best for the future too

Diakat · Jul 7, 2016

Tanny35 said:
And as I was writing that I was having a hypo lol apologies if it's a garbage

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I read it while hypo - sounded great. X

slip · Jul 7, 2016

Diakat said:
I read it while hypo - sounded great. X

Does that mean two hypos make it right?!

Diakat · Jul 7, 2016

Two hypos make a very interesting evening...

Tanny35 · Jul 9, 2016

slip said:
Does that mean two hypos make it right?!

Diakat said:
Two hypos make a very interesting evening...

It would be interesting to see how a real life conversation went down between two people during a double hypo lol wonder if we would understand each other

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himtoo · Jul 9, 2016

Tanny35 said:
It would be interesting to see how a real life conversation went down between two people during a double hypo lol wonder if we would understand each other

Sent from my iPhone using DCUK Forum mobile app

the mind boggles if they were both from the netherlands

donnellysdogs · Jul 9, 2016

Coming round with an IV drip attached to a curtain pole and 3 strangers sat on your bed talking to you and you calling them
Things like "baldy"- (would never do that in normal life!!)... All part of T1 for me over the past 30+ years...

therower · Jul 9, 2016

donnellysdogs said:
Coming round with an IV drip attached to a curtain pole and 3 strangers sat on your bed talking to you and you calling them
Things like "baldy"- (would never do that in normal life!!)... All part of T1 for me over the past 30+ years...

Came round one winter's morning out of bed , clutching and kissing the red hot feed pipe to the radiator. Asked the wife what happened, she said I had hypo and fell out of bed. I asked how I came to be so close to radiator. Turns out she rapped duvet around me then pushed bed up against me so I was trapped whilst she went to get me some weetabix. Love her to bits , laughed later that morning, still smile now. Never forget the blistered tongue, lips and 4 fingers. Diabetes it's a pain but it has it's funny side. Have more hypo stories but won't bore you with them. Do you think the things we say when hypo just might be that inner mischievous self we have?

himtoo · Jul 9, 2016

therower said:
Came round one winter's morning out of bed , clutching and kissing the red hot feed pipe to the radiator. Asked the wife what happened, she said I had hypo and fell out of bed. I asked how I came to be so close to radiator. Turns out she rapped duvet around me then pushed bed up against me so I was trapped whilst she went to get me some weetabix. Love her to bits , laughed later that morning, still smile now. Never forget the blistered tongue, lips and 4 fingers. Diabetes it's a pain but it has it's funny side. Have more hypo stories but won't bore you with them. Do you think the things we say when hypo just might be that inner mischievous self we have?

ahhhh but you must reply , and here is the thread to do it on -- it needs a bit of a glucose boost

link here-- please put a post on http://www.diabetes.co.uk/forum/threads/worst-place.70338/

donnellysdogs · Jul 11, 2016

I know when I'm hypo I tell the absolute truth about how I feel....I think people with tourettes say things that most of us may think at times but hold our tongues.. I'm like that.. Calling a paramedic "baldie"... I would think it possibly in real life but def would never call anybody baldy...when low.. Well its absolutely what I'm thinking..I don't even do it when I've had too much red wine though... So normal people around that have never had a hypo will never understand fully..

Miko · Jul 11, 2016

What is it like? It's like hell , like a trap where you have to suffer so much but you can't get out of it whatever you do. I hate it when my friends can eat any time they want and eat a lot of sweets and i got to have everything planned.

therower · Jul 11, 2016

Being type 1 for the past 25 yrs has I honestly believe made me a better person. I see things differently, I'm far more compassionate than I ever was, I have a reason to survive where as before I survived without a reason. I hope you can understand that. I don't want diabetes but it's happened, and I'm sure as hell going to make the most of it. As I've said before, I don't have diabetes it has me, we fight and we argue sometimes we get on great but ultimately I have the final say in what we do. I have a focus, determination and stubbornness I never had before diagnosis. Of course I'd love to not have the injections, blood tests, highs, lows, restricted diet, check ups, hypos, hypers, queuing at the chemist the list goes on BUT do i wish I wasn't diabetic? Strangely no,, it's what and who I am.

donnellysdogs · Jul 12, 2016

Definitely a better person for me too.

jinty73 · Jul 12, 2016

debz48 said:
PLEASE I REALLY NEED SOME HELP

Hello Snapsy. Im a first time poster, and I have just read your post. I know exactly what you mean, due to the fact I feel the same way you do.
I am a 48 year old woman, who has had type 1 for over 47 years now. I was 11 and a half months old when I was diagnosed, so I have known no other way to live my life. Constantly test my blood levels, working out the carbs and insulin doses. In my later teens I rebelled against my diabetes majorly (when I was younger, my parents were told that "this would happen. No ifs or buts").
I have since then become resilliant to insulin and find it particularly difficult to control.
It was eight years ago put onto the pump, to see if this would help get my diabetes into better control. Unfortunately it has not. I dont know where to turn or what to do. I am at the moment so depressed with it I dont really want to go on. Im constanly stressed with these feelings. My diabeties team have no idea how to advise me. They do genually seem very concerned at this, as they have never seen me so down. I used to always have a smile on my face and very happy with everyþhing. Im only posting on the forum now, as I really do not know where to turn for hèlp and advice. If any one can suggest anything, please replý. I also have numerous oth health issues that are also contributing to the

PLEASE I REALLY NEED SOME HELP

Hello Snapsy. Im a first time poster, and I have just read your post. I know exactly what you mean, due to the fact I feel the same way you do.
I am a 48 year old woman, who has had type 1 for over 47 years now. I was 11 and a half months old when I was diagnosed, so I have known no other way to live my life. Constantly test my blood levels, working out the carbs and insulin doses. In my later teens I rebelled against my diabetes majorly (when I was younger, my parents were told that "this would happen. No ifs or buts").
I have since then become resilliant to insulin and find it particularly difficult to control.
It was eight years ago put onto the pump, to see if this would help get my diabetes into better control. Unfortunately it has not. I dont know where to turn or what to do. I am at the moment so depressed with it I dont really want to go on. Im constanly stressed with these feelings. My diabeties team have no idea how to advise me. They do genually seem very concerned at this, as they have never seen me so down. I used to always have a smile on my face and very happy with everyþhing. Im only posting on the forum now, as I really do not know where to turn for hèlp and advice. If any one can suggest anything, please replý. I also have numerous oth health issues that are also contributing to the way I am feeling lately.
Please any body I would really appriciate some help and advice.
Thank you in advance.

Sent from my SM-A500FU using Diabetes.co.uk Forum mobile app.

Hi Snapsy. Just wanted to say that i think your post is amazing, i couldn't have said it better myself. My husband is a huge support to me but he can get very pee'd off with me if he comes home and i'm sitting around with a very vague expression on my face, he has brought me back from the brink on too many occasions. I've been diabetic for 26 years, since i was 16, and although i manage it all fairly well it is most definitely a life sentence and some days i just pray for a cure. It will happen one day, i just know it will, and then we will all be free from this hideous illness. My friend Catriona has lost her sight through her diabetes, completely her own fault as she will admit herself as she would tamper with her insulin to lose weight when she was younger and then finally lost her sight due to her foolishness. She had a pancreas and kidney transplant several years ago and from the moment she woke from the operation she was no longer diabetic. She was on anti rejection drugs for some time, in fact i think she still might be, but she now no longer has to keep a check on her bloods or prick her fingers or do injections, its just very sad that the illness took her sight.
I have found that exercise helps me a lot and also keeps me smiling so i'm finding ways to fight against diabetes. I now use the libre sensors so no longer have to prick my fingers several times a day(although its killing my bank balance!!!!)and i'm considering trying the reduced carbs diet to try and get my blood sugars under even more control.
Thanks again for your fantastic post as its so good to know that i'm not the only one hating myself for stupid highs and lows and feeling bogged down by the constant diabetes stamp on my forehead.

RAPS_od · Jul 13, 2016

So, skimming the responses, I see many have covered the expenses and the nuts & bolts everyday issues, but I wanted to add in about something less tangible: worry.
First, I worry where my blood sugar is. Am I high or low? Why did it go up or down? If I follow my diet and take my shots, it should be right in the zone - but no! For some reason I'm high or low when I should be the opposite and now I have to worry about why. Do I have an infection? Did I take vitamin C by accident? Is there something I don't know about that's making it go up?
Secondly, I worry about going out with friends and what I'll drink. Hold on there - I'm not talking about alcohol. No matter how much I stress it, I am never sure I've gotten a diet drink. And no, I can't tell - I've been diabetic for 48 years! If I just take a drink, just a sip, and it's not diet - BLAMMO! I'm going to be sick for days.
And lastly - because let's face it, this could go on for days - I get to worry about losing my sight, my feet, my feeling, my hair, my life and any other malady that some well-intention yahoo says killed their relative or friend as they try to relate to my condition.
Oh, and just the worry? It makes my blood sugar go up. Grrrrrr.

Snapsy · Jul 13, 2016

jinty73 said:
Thanks again for your fantastic post as its so good to know that i'm not the only one hating myself for stupid highs and lows and feeling bogged down by the constant diabetes stamp on my forehead.

Hi @jinty73 - I'm so touched, thank you so much - I'm really glad it helped! I'm so sorry to hear about your friend - that sounds really tough.

I'm finding that saying these things out loud on here, staring stories, exchanging experiences, really really helpful. When I first acknowledged to myself - by that spot of essay-writing a couple of years ago that's the text in my post on page 1 - that golly yes I did have HUGE issues with my attitude towards my diabetes, and how fear of failure was holding me back, only then was I in a position to start unpicking it all and try going out there and finding how to live with it as a part of my life rather than the obsessive whole of my life.

There's still a way to go - but my state of mind had improved to such an extent that I was last year in a position to put my case forward for a pump, and to inspire me to get - and fund - a Libre, and I am not being nearly so scared of hypos - in fact I (relatively speaking) now throw caution to the wind and go running several times a week.

That was UNTHINKABLE, given the way I had felt for nearly 3 decades.

But of course we are not all the same - this is a hugely varied condition, and we are all different. There is, I am sure, absolutely the potential to lead a normal, everyday life with diabetes, and I applaud those who achieve it (that's my own goal too, after all, and I'm feeling very much better getting closer to it these days). But I also applaud those who are finding it a tough ride - and I know we all have tough, tough days - and weeks - because I know how that feels, and how hard work it is. It's a big, big deal.

This is turning into another essay - I'm sorry. In summary: let's do the best we can with what we've got, and let's remember we all have access to the support of this forum.

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