Struggling

[T1DM17]

Hi everyone,
I'm new to this forum, but feeling very fed up at the minute. I have Type 1 Diabetes, diagnosed when I was 17 and I'm now 32. I'm married, we have a 20 month old son, and I control my diabetes with an insulin pump.

I find it difficult because I don't know anyone else with Type 1, so I'm on my own because no one really understands what it's like. To come round after a hypo and feel embarrassed, angry and ashamed. However embarrassed my mother is when I have a hypo with her, multiply it by 1000 and your close to where I am.

Everything revolves around the diabetes, when did you last eat? What's your blood sugar like? The trouble is, because my mum is a nurse, and as she and my dad had lived with me and my diabetes for years, they think they know all about it, but in fact, they know surprisingly little!

You can't know what it's like unless you are actually living with this chronic condition, pricking your own fingers 15 times a day, injecting yourself or changing the pump cannula site in your own stomach, having to think about every meal so you know how much insulin to take, struggling to regain control of your body after having a hypo that's caused your whole body to jerk and twitch, trying to explain to your family that you can hear and understand the anger and frustration in their voice as they try to force Lucozade down your throat and shouting at you to sit still!

Trying to explain, apologise and justify my behaviour during a hypo. I often feel like my own family hate me, like I should be able to control this better by now. While I was pregnant, all I was told is that high blood glucose can be harmful to the baby, so BMs must be controlled very tightly. Then, when my control was tight, the doctors said it was too tight and to ease up. Unfortunately, this is not an exact science, so if control needs to be tight, there are bound to be hypos. It's very frustrating when you sit in a room with 4 healthcare professionals who want to change the settings on your insulin pump based on a few recorded glucose readings. Not taking into account what all the readings were like the rest of the time. I can't be alone in my frustration, am I? So much ignorance, yet so many people think they know what it's like because they know or live with someone who has Type 1.

Feeling very low at the moment and just need someone who really understands what this condition is like to respond. Feel very alone in this

 

[Annamay]

Hey @T1DM17

Im sorry to read that you're struggling. I don't have any particular solutions, but just wanted to say that you're not alone.

I'm a type 1 too and was also diagnosed at 17, and a similar age to you now and on the pump. It's really tough, we have to think about it every day (or every moment it feels like sometimes), and our friends and family can never really get it. But, all we can do is keep trying.

You said you're new to the forum - this is a good way of seeing that there are others going through similar situations.

Keep going - don't be too harsh on yourself, you are doing so well!

A

 

[azure]

@T1DM17 Welcome Your post was beautifully written and explained the frustrations of Type 1 very well. Every Type 1 here will identify with what you wrote - it IS hard, day in day out. I often say that I wish we could have a week or two's holiday from it every year. That would be fantastic not to have to plan and think so much.

People without Type 1 assume it's the injectiins that are the biggest thing, but they're not. It's the daily grind of it.

Can I ask if there's anything in particular that's making you feel low at the moment?

 

[ickihun]

I feel exactly the same. That's why I'm on here so much. Facebook and twitter who?

 

[himtoo]

Hey @T1DM17
welcome to the forum !!
I was 14 at diagnosis - I do understand most everything you've said ( except the pregnant part )

try this thread for some support http://www.diabetes.co.uk/forum/threads/explaining-what-its-really-like-to-live-with-type-1.103794/
am also going to tag the lovely @Snapsy - she will hopefully bring some lovely support that you could use right now

 

[DiabeticDadUK]

Hi @T1DM17

Some of the things you wrote made me pretty angry and sad. Not because of you but because of how you've been treated. You should NEVER be made to feel embarrassed because you had a hypo. That's just plain wrong and clearly the people who are making you feel that way, whether they are your parents or family or whoever, have NO clue what it's like to be T1D.

I fully empathise with the "what's your blood sugar" and "Have you eaten" tirade that overly worried family and friends lump on you all the time That happened to me for a long time... well into my late 20s. One day I just snapped and very firmly announced that I'm a big boy now, I've been a diabetic for 20 years (at that stage) and it hasn't killed me yet. Strangely, everybody has backed off since that day and strangely I'm still not dead.

As others have said, I fully recommend using this forum and social media as your outlet for frustrations and to get tips on how to deal with such situations in future

 

[EllsKBells]

Hey @T1DM17

I was diagnosed when I was 16, about the same age as you. The feelings of frustration that you describe are incredibly familiar. You are not alone by any stretch of the imagination. If you need to just rant about it, we are all here to listen. It touches everything, like a backpack that you have to carry around with you all the time, that is heavier some days than others, and it never, ever lets go. It's awful to feel everybody constantly hovering over you, not because of you, but because of your diabetes.

As @DiabeticDadUK as so eloquently said above, you should not be made to feel embarrassed because you have had a hypo. All those people around you have probably done things that are far more humiliating whilst intoxicated. And if people are deliberately making you feel ashamed, stuff them! You are a strong, amazing person who fights this disease every day whilst maintaining a good relationship and raising your child. I bet they would have more than a few weak moments too if they were confronted with such a work load.

You may already do so, in which case please feel free to ignore me, but one thing that might be worth doing, with regard to your care team, is writing down ALL of your readings, possibly alongside a food diary, or record of physical activity. It might help them look at the bigger picture.

I'm glad you have found this forum - I'm not just saying this, it has helped me so much. Diabetes can be a very lonely disease, but here I feel like part of a family. Sending hugs

 

[Chirovici]

Hi @T1DM17

I feel every single word you wrote and i admit that i sometimes feel the same, even though i know rationally that i shouldn't. Unfortunately, i can't tell you there is a solution to this. I am sure everyone care a great deal about you and are very worried and that's why they act like that. You should never feel ashamed or embarassed about hypos, though. They're not something you do on purpose and the truth is no matter what you do, they will atill happen every once in a while.
You are amazing just the way you are and the fact that you have a son now should be your own focus. Don't think about what others say or feel about you and your condition. Your son needs your entire attention and only by the fact that you managed to achieve so much in life having this condition, you are setting an example for him. Be strong and keep going. You can do it!

 

[mariposa84]

Hi @T1DM17 ,

I haven't got much to add to the supportive posts above but just wanted to say that there are times when I find my diabetes a real struggle too and occasionally it makes me feel very down. This site is a great place to come to...lots of friendly people who are in the same boat who are very supportive and helpful. I've picked up lots of tips and trying to put them into practice to lower my hba1c. I'm not sure where you're from but do you know if there's a local support group nearby? It's not for everyone but it might be an idea? Also, something I now try to do is find some time for myself every so often and do something for me...read a few chapters in a book, go for a walk, grab a coffee, go to the cinema, put loud music on and sing along (more often than not very out of tune!!)...something that's relaxing as the more wound up I get the higher my blood sugars go and then I start struggling. I appreciate it may be hard with your little one.... take care ☺

 

[deborabaratto]

Hey guys! And @T1DM17, I stand by and relate to everything you said! I'm 24 and living with diabetes since 7, and
Everyday I think I'm a walking diabetes , I live it 24/7 and it's so exhausting! I'm a 5th year medicine student and along with everything else, diabetes is always there to push me to the limits.
I also use insulin pump and next week my libre Will arrive I hope

I suggest you read Thinking Like a Pancreas, the book from Gary Something, it's making me look at a different perspective and try different things.

And also, this amazing community is always here to listen and help everytime you feel down! Hope this period is over soon!

 

[pleinster]

Hi. I have nothing to add to the sound advice above @T1DM17 , and I am a mere type 2 and would not presume to issue any specific advice on your condition...I just wanted to say that I get your frustration at how your family appears to be dealing with it all. It's not good...make you feel powerless and even somehow guilty, I'm sure...as well as bloody angry! I would ask you to consider a different angle...that your family (particularly those who think they know what to do) may well be feeling powerless too and annoyed at themselves for what they can't seem to do or can't express effectively. They will be angry at the situation and at the condition, I'm sure. Of course, they appear to be handling it badly in how they handle you...and I am not saying just excuse it...but going by the way you eloquently express your own feelings, I bet they love you to bits too. Sometimes communication is just not people's best thing, eh? Problems with health become so frustrating for everyone that we get stuck in ruts, in the stances we take, and wind up just stressed out. Have you tried telling them how you feel about it, how the way they make you feel just hinders your own progress and increases your stress as well as bringing you down. Bring it up at a calm time and see if they respond. Whatever happens..it won't make it worse, and there are always, always people with direct experience and empathy right here. Good luck.

 

[Snapsy]

Hi @T1DM17 , and welcome to this fabulous forum!

I'm so sorry to hear how you're feeling about your diabetes - I feel or indeed have felt all of those things. The 'daily grind', as @azure so appropriately called is, is relentless.

So what can we do?

I take each day at a time, trying to remember that every day (hour, minute) is a brand new rollercoaster, and I try to give myself permission for it to BE that rollercoaster, if that makes sense.

This sounds crazy, but a couple of years ago after a session with my counsellor in which I was talking about the guilt, the hatred I feel when my numbers were 'wrong', the whole 'it's too hard' thing - all very very real feelings in our special rollercoaster world - it only then, after a quarter of a century with diabetes, suddenly suddenly struck me that I DON'T have the power to always be between two perfect lines with my blood sugar. NOBODY does.

I talk about my diabetes a lot, just to be able to get some kind of handle on it. Most friends and family are on board with it, but oh boy, they have their moments.

I'm as frustrated as anyone with it all. But in my (rare) rational moments I remind myself that I'm doing the best I can with what I've got - because I don't have the cure for diabetes - nobody does - so I just have to keep going with doing the best I can. Which is sometimes pretty okay, and sometimes not so okay.

But with my friends on here I know there are others who know how I'm feeling, however I'm feeling.

Love Snapsy

 

[ickihun]

My family don't get anything to do with diabetes. My on-line family definitely do! Enjoy the forum @T1DM17 .

 

[melzee]

I'm sorry to hear you are struggling. I was diagnosed with T1 when I was 4, I'm now 44 and live by myself. It's horrible to feel shame if we have a hypo. Luckily I get warning signs and always carry glucose tablets around.
Just remember you are strong, only you can manage it with support from family and friends. They won't totally understand but will try to.
It's hard and a struggle but look how far you have come and what you have managed to overcome since being diagnosed xxx

 

[T1DM17]

Hey,
Thank you for all your replies , it helps so much just knowing I'm not the only one going through this.

I've gotten used to just trying to get on with things on my own, about a year after I was diagnosed, I went to a support group called "The Expert Patient Program". Unfortunately, I was the youngest in the room, everyone else was in their 60s and living with Type 2. I was hoping to meet some people who could relate to more than just the mere inconvenience of having to inject at every meal (because let's face it, after 15 years, the injections are the easiest part of it). Everyone else seemed to be having a competition over who was worse off because of how many tablets they had to take, no one was on insulin, and I just felt very isolated. I have tried to find other support groups, but they all seem to be aimed at the Type 2 community.

I know your all right and all I can do is keep doing my best. I started telling myself last year, "my blood sugar control can never be perfect, I've got diabetes", it made me feel a little better as my healthcare team never seem to be satisfied with my results, my HbA1c is either too high or too low for them. Thing I need to remember is I don't do any of this for them, It's about me .

The biggest issue for me is people's attitudes towards me, and this is what gets me down the most. My parents have always tried to make everything their "problem", for them to "worry" about. They forget that I'm at the centre and actually dealing with everything diabetes. My husband only steps in if I need help with a hypo, but he seems much kinder during hypos than anyone else. The rest of the family take no interest in diabetes and just leave it up to me.

A cure would be amazing but I'm so glad I've found this forum

 

[Scott-C]

Have you thought about getting cgm, @T1DM17 ?

Like you, I try to keep fairly tight control to avoid complications, but, as you say, the downside is that there's a fairly narrow line between being just right and too low.

After almost thirty years on strips (in fact the first few years were on colour changing strips, shows how far we've come), I got a Libre last year. It's made a huge difference, that ability to see a hypo coming and stop it before it even happens.

It's criminal that cgm isn't on the NHS yet, but I'm convinced it will be at some point. The problem seems to be that docs seem to think that an Hba1c is good enough. Sure, maybe it is for their purposes, in the fifteen minutes I get of their time every six months, but they honestly don't seem to understand how valuable it is in the 24/7 we live.

Maybe a concerted campaign of inducing hypos with a massive shot of insulin in every member of parliament is what's needed to change some minds, see how they like it....

 

[T1DM17]

Hi,
I've got cgm but only because I was pregnant in December, so got supplied with enough stuff to last through pregnancy. Unfortunately, I had a missed miscarriage in January and there seems to be problems with getting the funding sorted for long term cgm for me, so I stopped using it.

All the decisions get made by a group of people who know nothing about diabetes and are only thinking about the money

 

[Steve14]

Hi everyone,
I'm new to this forum, but feeling very fed up at the minute. I have Type 1 Diabetes, diagnosed when I was 17 and I'm now 32. I'm married, we have a 20 month old son, and I control my diabetes with an insulin pump.

I find it difficult because I don't know anyone else with Type 1, so I'm on my own because no one really understands what it's like. To come round after a hypo and feel embarrassed, angry and ashamed. However embarrassed my mother is when I have a hypo with her, multiply it by 1000 and your close to where I am.

Everything revolves around the diabetes, when did you last eat? What's your blood sugar like? The trouble is, because my mum is a nurse, and as she and my dad had lived with me and my diabetes for years, they think they know all about it, but in fact, they know surprisingly little!

You can't know what it's like unless you are actually living with this chronic condition, pricking your own fingers 15 times a day, injecting yourself or changing the pump cannula site in your own stomach, having to think about every meal so you know how much insulin to take, struggling to regain control of your body after having a hypo that's caused your whole body to jerk and twitch, trying to explain to your family that you can hear and understand the anger and frustration in their voice as they try to force Lucozade down your throat and shouting at you to sit still!

Trying to explain, apologise and justify my behaviour during a hypo. I often feel like my own family hate me, like I should be able to control this better by now. While I was pregnant, all I was told is that high blood glucose can be harmful to the baby, so BMs must be controlled very tightly. Then, when my control was tight, the doctors said it was too tight and to ease up. Unfortunately, this is not an exact science, so if control needs to be tight, there are bound to be hypos. It's very frustrating when you sit in a room with 4 healthcare professionals who want to change the settings on your insulin pump based on a few recorded glucose readings. Not taking into account what all the readings were like the rest of the time. I can't be alone in my frustration, am I? So much ignorance, yet so many people think they know what it's like because they know or live with someone who has Type 1.

Feeling very low at the moment and just need someone who really understands what this condition is like to respond. Feel very alone in this

You summed it up exactly the way I feel! Don't know anybody in person who has T1D, family knows better, either hypo or hyper etc. etc. etc. I was always skeptical about this disease since after the first visit (after they handed over the insulin and showed me how to inject). I had some follow up question, but my diabetes doc explained things to me like it came straight out of a quack's mouth. There's no logic in this. This is the most random disease in the whole wide world. 2 days ago I followed the same old daily routine, same foods, same sleep, same emotional stability, same level of stress and I started to feel really sleepy.... I knew I went high because the day(s) before I felt the same way at that particular time of the day, expecting to be sky high, and then my levels came back at 4, whereas a day before, feeling the EXACT same way, I was !! 14 !! That's 10 points of difference. Had I ignored checking, then I may be hospitalized right now thinking I'm just a bit hyper and it will come down...let's inject some extra insulin..relax.

So you see, you are not alone in this. I keep coming up with ways to better stabilize my levels and I'm optimistic about the future. I'll have to go back to the initial routine, by checking my levels every hour or every two hours. I used to have panic, palpitations, sweat when going under 4, but seems like that is gone now. But on the brighter side: whenever I feel excessive sleepiness, then I'll measure and adjust. Got to keep a positive spirit despite I hate this so much. After all, just like you, I don't know anyone else in person with this, and I'm an outcast to people (even my family). This forum is my family who understand me, and you are part of this family too. We all understand each other.

 

[T1DM17]

I totally agree! It is a completely random disease and it's so frustrating having healthcare professionals treat and try to manage your condition like everyone is a text book case! It's really hard to explain it to them as well, they might know what the symptoms of hypo and hyper are, but unless they've ever experienced it for themselves I don't think they could possibly understand!

I've tried following the same routine, eating the same foods and doing the same level of activity and my readings are completely different from one day to the next, just can't predict what will happen with it sometimes

 

[DiabeticDadUK]

I totally agree! It is a completely random disease and it's so frustrating having healthcare professionals treat and try to manage your condition like everyone is a text book case! It's really hard to explain it to them as well, they might know what the symptoms of hypo and hyper are, but unless they've ever experienced it for themselves I don't think they could possibly understand!

I've tried following the same routine, eating the same foods and doing the same level of activity and my readings are completely different from one day to the next, just can't predict what will happen with it sometimes

Sadly, many professionals struggle to see beyond the black and white of T1D. BG levels can be affected by many, many things and not just carbohydrates and insulin. Some professionals find that hard to understand.

I doubt there is a type one who doesn't sometimes take their BG and think "***!". Sometimes tiny things can result in changes you didn't expect. Keep monitoring closely and adjust, you're doing the best you can - I am sure of that.

You've been through a lot with the miscarriage. I hope you're getting the right support in every area.