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

megdowney407 said:

I apologize if this is a repeat, but it's probably my strongest feelings about this.

I was diagnosed at 25, a year ago this week. I feel like there really isn't a lot out there for newly diagnosed type 1's in their 20's. Most type 1 info is geared toward parents or 20-somethings who have had t1 since they were children. I feel really lost a lot of the time. Maybe all of the time. Scared to eat, scared to not eat.

I plan on starting a blog, which I'm sure many of you have already done. I think it's necessary for there to be more out there for adults who develop type 1.

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I agree that young people and younger adults need more help! I still class myself as a young adult although I doubt that I am at 34 lol. Some books I have read have been brilliant - diabetic athletes handbook and dealing with diabetes burnout for example. It's probably the case that the nhs cannot endorse books or forums but it certainly makes things slightly different when you find them! I live a totally different life now since type 1 diagnosis, I think someone else said they are healthier and make better choices. I know I do! It's easy to feel that those without diabetes can do what they want and eat what they want but nobody should hammer sweets and junk food and drink loads of booze. remember to be easy on yourself we are all only human!

himtoo said:

Hi There
I am hoping that the fabulous community here will post replies on this thread about the subject in the title.
or possibly provide links to people's blogs on the subject , or even copy a link to an old topic that covers this area

this topic could then hopefully be something that could be shown to gather support from family members, it could be helpful to newly diagnosed families as well as families with a D peep going through issues at the present time.

thanks so much for reading and for posting if you are able.

all the best !!

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I have been type 1 since 2003, so 14 years. I take 3 injections a day and am relatively active - a single mum with 2 teenagers and a dog. I am not paraoid or overly careful about my blood sugars since I am the only carer of the 3 above mentioned. Maybe I could be considered foolish.... I am English and live in Rome, I have no family here, only good friends so I have to look after myself.

I was diagnosed just before I was 21. I'm quite well controlled most of the time.

It freaking sucks though. There is no getting around that. Sometimes I just want to pig the hell out and stuff my face with junk food but know that I can't really do that. I just want to eat stuff at the cinema but know if I don't have my insulin I can't do that either.

It sucks and I'd love just a day of not being a diabetic. I can remember when I wasn't as I went through my whole teens not even having to think about it.

But I know what can happen if it isn't controlled. I was diagnosed not long after my uncle died through complications of diabetes. He was in his 40s and had went from being what I thought was living a normal life to having to have nurses look after him on a daily basis for years after he fell in to a diabetic coma and that was something that really scared me.

^ I'm sorry to hear your loss. Frankly I've lived life with the same urges, you want to just go out and eat all ya can but then you have that haunting reminder that you'll pay double for every mistake. What help me get through it is some healthy distractions, pets and animals over all all ways do the trick.

Vicky_Salmon said:

I have been type 1 since 2003, so 14 years. I take 3 injections a day and am relatively active - a single mum with 2 teenagers and a dog. I am not paraoid or overly careful about my blood sugars since I am the only carer of the 3 above mentioned. Maybe I could be considered foolish.... I am English and live in Rome, I have no family here, only good friends so I have to look after myself.

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It must be tough living in another country with no family. I had my daughter at 42 1/2 and virtually a single parent even though my ex partner and I remained good friends until his death, when our daughter was 11, but the five months leading up to his death ( I knew he was dying, but my daughter didn't) made my BS go haywire and I became Coeliac after his death and a month later, diagnosed with Osteoporosis, so stress, worry and upset has a big impact on my management of diabetes.
At 59 I am still active and my weight is good. I went to bed last night on a 7.5 and awoke on a 3.5, not a great start to the day and I concur with your last sentence, I have had to look after myself and I will continue to do so.
All the best and take care @Vicky_Salmon

To be sitting on the cattle truck of a train home in the heat and look at a stranger standing up drenched in sweat and rather than logically thinking "that's normal it is 30 degrees outside" to think, oh goodness he's hypo! Before checking my levels in case I'm not thinking straight.

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

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You have just explained how I feel, thank you.

I was diagnosed as type 1, six years ago and it came totally out of the blue..I was in shock and terrified because my sister died the previous year, and that was diabetes related.
She had been type 2 for years and she needed to go on dialysis. She had a heart attack after her first session and suffered brain damage.
The sad thing is, she had always been overweight but she spent her last two years losing a lot of weight by healthy eating and exercising constantly.
In the beginning, I became very depressed and lost interest in almost everything.
After a while, I came round, got used to it and got on with my life. After all, it was only 2 minutes of my life twice a day, for a tiny jab and a tablet.
I quit smoking straight away, and my wife helped by quitting as well..With the money we save, we have regular weekends away and treat ourselves to some new gadget or other that we couldnt afford before.
I learnt not to let diabetes rule my life.

Hello, I've just joined the forum today and this is one of the first articles I have read. I wanted to post a reply as reading what you have written has actually been a massive help to me, and I wanted to say thank you. It's so brave to put out to the world how you really feel/have felt in the past especially when it's hard for many people to truly understand!

I've had type 1 for 54 years and although it can be a pain it's a condition that's relatively easy to manage but it does need discipline, it Won't stop you doing most things you want to unless you want to fly/drive a plane, bus taxi or anything to do with public transportation which we are not allowed to drive for good reason, you can be ****** off sometimes but don't let it get you or get you down.

ksierra1901 said:

Hello, I've just joined the forum today and this is one of the first articles I have read. I wanted to post a reply as reading what you have written has actually been a massive help to me, and I wanted to say thank you. It's so brave to put out to the world how you really feel/have felt in the past especially when it's hard for many people to truly understand!

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Welcome @ksierra1901

I got diagnosed at age 7 type 1 during my childhood I lived back in Singapore back then. I'm now 18 once you get used to it it just becomes part of your daily routine. The main annoying bits are:
Not knowing the cause of how you got it?
Getting Bullied because of it at school/college etc...
Getting odd looks when your doing your blood/injections in public places or on transport.

To be honest if you just think of positves and not negatives it rarely brings you down as there's worse things you could of gotten take being blind, deaf, dissabled etc..

Also it's not like it stops you from doing anything you can still do pretty much anything just have to be more careful

PaulAshby said:

I've had type 1 for 54 years and although it can be a pain it's a condition that's relatively easy to manage but it does need discipline, it Won't stop you doing most things you want to unless you want to fly/drive a plane, bus taxi or anything to do with public transportation which we are not allowed to drive for good reason, you can be ****** off sometimes but don't let it get you or get you down.

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According to DVLA you can still drive a bus/lorry if you have 3 months of continuos glucose readings every time you apply for your licence (Just googled it).
With planes. No insulin dependent diabetic no matter what type can fly a plane.

I have been type 1 for 32 years and would like to assure any newly or not so nearly newly diagnosed person who is wondering that the condition doe snot need to restrict anything you wish to do. The condition, if approached with reason is completely manageable. As this is a Diabetic Forum I suspect I am preaching to the converted but above all you must test and test and test again. Without testing we are pretty much powerless to change any aspect of our care and management. The condition then will more than likely beat you. Knowledge really is power and the power that testing provides really is the key to a long and healthy life. Grab that healthy life and don't ever let go. Life is brief. Make the most of what you have and never, ever give in

Diabeticliberty said:

I have been type 1 for 32 years and would like to assure any newly or not so nearly newly diagnosed person who is wondering that the condition doe snot need to restrict anything you wish to do. The condition, if approached with reason is completely manageable. As this is a Diabetic Forum I suspect I am preaching to the converted but above all you must test and test and test again. Without testing we are pretty much powerless to change any aspect of our care and management. The condition then will more than likely beat you. Knowledge really is power and the power that testing provides really is the key to a long and healthy life. Grab that healthy life and don't ever let go. Life is brief. Make the most of what you have and never, ever give in

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Absolutely excellent post !!! Only 31 years t1 here but agree 100%.

I saw a post the other day that summed it up well

Live life - don't google it!

At the beginning of every yoga class, when you are to tell the teacher of any ailments - I stick my hand up and I say "I need to let you know that I am a Type 1 diabetic and I will probably test my blood sugar in the middle of the class" at best the response is "ok, thanks for letting me know". Often I get, "just listen to your body, you know it will tell you...." and they go on for a minute or so and I have to stop my self from being sarcastic and mean. THAT'S ALL I DO IS MONITOR THIS BODY, I'm dying to shout. Sometimes the instructor looks slightly terrified and I have to comfort them. I think to my self in these moments, why am I telling them. I am going regularly to the same place now and some of them remember sometimes and we exchange a remembering face/wink/smile thing which is good.
Once, having been to the same weekly yoga class on 4 consecutive weeks, having said it each time. "has anyone got anything wrong with their body that I need to know about?" she goes round the class. I wearily looked up with my monitor and glucose tablets on display, full to the brim with fed-up-ness. "Its a bit tiresome for me to say every week" I say wondering where the f*** that came from. "well I teach a lot of people, so everyone needs to say at the beginning...." I interrupt her like a teenager, "Fine, yes, ok. I have type 1 diabetes and I will probably test my blood sugar in the middle of the class". I never go to her class again.
Went into the lido on Saturday morning asking if anyone had handed in my blood sugar monitor... the lady said "No.". I was a bit startled at her tone and said "just No?" "I've looked this morning and there is nothing like that" she snarled.
Phoned 4 pharmacies, none of them supplied them (I felt a horrible dread, WHY DON'T I HAVE A SPARE!! I might be destroying my sight, my nerves, shortening my life). On the next call they confirmed that they had it. I was specific about the strips. Drove 4 miles there. picked it up, elated, relieved. Bought the £25 monitor, went out side, ripped open the box, wrong strips.... went back to the pharmacy, told them, asked them if I had the other that I asked for on the phone... they had thought that it was the right one too. Went home to bed and cried. From bed emailed the diabetic nurse at the hospital that only works on Thursday and put in my diary to sort it out on Monday. I have 10 strips, its going to be ok, stop worrying about it. Got up, went to a weird comedy thing with my Aunt laughed a lot, drank tea (not drinking because I am on anti biotics for an infection that my body can't expel). Sunday morning, go to the lido with a friend. "Oh - did you come in yesterday looking for a thing that......" turns to the other receptionist "I think this is the lady that we sent the email around about that lost the thing". "My blood sugar monitor????????" "Yes" the receptionist said... GRRRRRRRR.....

megdowney407 said:

I apologize if this is a repeat, but it's probably my strongest feelings about this.

I was diagnosed at 25, a year ago this week. I feel like there really isn't a lot out there for newly diagnosed type 1's in their 20's. Most type 1 info is geared toward parents or 20-somethings who have had t1 since they were children. I feel really lost a lot of the time. Maybe all of the time. Scared to eat, scared to not eat.

I plan on starting a blog, which I'm sure many of you have already done. I think it's necessary for there to be more out there for adults who develop type 1.

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I was diagnosed around 23/24 and it was like that then. I just feel so sad reading your post because I just remember how hard it was and is... I went on the DAFNE course and it changed everything for me. I don't know what the rest of the forum think about this, as it is my first day on here and I don't know what's what. I got on it through the consultant at the hospital. I think different places offer different training courses. DANFE means Dosage Adjustment For Normal Eating. I think there is a website. I still feel lost sometimes, but less helpless than I did.
Are you feeling down quite a bit as well? I get quite down about it a lot and feel a bit isolated and frustrated that I can't really talk to my friends about it, because you sort of have to teach them about it then you sort of don't get to straight up and down moan about it.

@Snapsy to be honest right now I'm almost crying! I've had T1 since I was 4 (1999), now I'm nearly 22 and living with three other people, none of whom have the slightest idea. It's so hard, and this post has summed up exactly how I feel. I've struggled to control it myself for years, and have recently decided, RIGHT! Time to get it sorted out, to get it under control. It's difficult though when no one else in your social circle really gets it, and I keep lapsing. This post, however old, has really helped me

Shannon27 said:

@Snapsy to be honest right now I'm almost crying! I've had T1 since I was 4 (1999), now I'm nearly 22 and living with three other people, none of whom have the slightest idea. It's so hard, and this post has summed up exactly how I feel. I've struggled to control it myself for years, and have recently decided, RIGHT! Time to get it sorted out, to get it under control. It's difficult though when no one else in your social circle really gets it, and I keep lapsing. This post, however old, has really helped me

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Oh @Shannon27 thank you for your lovely rating on my 'Between Two Lines' post, and this lovely post from you!

It's difficult, isn't it, when people in our day-to-day lives aren't able to grasp what needs to be - for us - second nature? All the testing, working out, changing plans at the last minute to deal with hypos or the fact you've suddenly run out of insulin, etc etc - all that stuff. It's only now that I'm about 200 years old (okay, 42 and a half!) that I've finally got to grips with trying to have diabetes with confidence - when I was a teenager and then a student it just seemed easier to hide it, deal with it on my own, not let any of the feelings - not to mention all the diabetic kit! - even show. With hindsight that was tremendously lifestyle-limiting - so I think if I'd tried to get people on board with it I would have been able to better deal with it.

As people we diabetes we have so much more to deal with than a lot of other people do. And although my diabetes is my diabetes, I'd find it all the more difficult to deal with if those around me didn't know about it. I wish I'd realised that quite a lot of years ago - LOL!

Hugs!

Love Snapsy

I just came up with a metaphor:
Could be like the Terminator. It absolutely will not stop until you are dead. And you are Sarah Connah, constantly monitoring your blood sugars (before you eat, after you eat, before bed, when you wake up, before you drive or even before leaving the house for any length of time, etc etc) to ensure you are in the sweet spot. Staying in the sweet spot allows you to avoid the Terminator. Bloody Arnie.