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Sharing the experience of living with diabetes type 1

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Paula_type1

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Dear All,

My name is Paula and I am 24 years old and I have been diagnosed with diabetes Mellitus type 1 six years ago. I remember that day well because it was two days before my eighteenth birthday. Diabetes type 1 is an autoimmune disease which is experienced differently by everyone. I want to share the experience of living with diabetes type 1 and I would appreciate it a lot to read your experiences.

When I was diagnosed with diabetes I also was diagnosed with Hypothyroidism;
a condition in which the thyroid gland does not make enough thyroid hormone.
Click to expand...
After one year of taking my medication my thyroid gland was working well again. But even though my thyroid was working well I had to test to determine thyroid function once a year and of course I have to give blood every three months to check my HBA1C and glucose. However the blood test of last year showed that my thyroid gland wasn’t working well and this time they found antibodies to the thyroid; so now it’s here to stay like my diabetes. I am wondering though whether the thyroid gland wasn’t the cause of my diabetes.

Probably the first two years my glucose levels had an enormous influence on my mood. Nowadays my glucose levels don’t have much influence on my mood anymore. However there is one exception, when I am hungry I easily get irritated and sometimes even angry. Is getting angry when I’m hungry just me or do you experience this too? Before I had diabetes I didn’t care much for sweets and candy but now I love to eat sweets and candy.

As my therapy I inject insulin a few times a day; for the carbohydrates I consume I use NovoRapid Penfill and at night in use the long-acting insulin Lantus SoloStar. I also used the pump some time ago, but for some reason my attitude towards this therapy isn’t positive. I know that the pump is useful and it replicates the pancreas function much better than injecting insulin multiple times a day. Nevertheless I felt like I was literally kept alive by batteries.
The pump is attached to your body at all times, and feeds constant insulin to the blood via tube.
Click to expand...
In the future there will be a pump which injects insulin, checks glucose levels and reacts on glucose levels. Luckily they are already working on it and when this pump gets on the market I might reconsider using the pump. On the other hand I’m affright my commitment issue towards the pump will not dissolve so easily.

Please feel free to react and to commend, I am looking forward to reading your experiences.

Kind regards,

Paula
 
Hi,

quite an interesting read.

I've heard alot that type 1 Diabetes and hypothyroidism often come hand in hand. Rather one causing the other, i think it's both caused by the immune system attacking certain cells that cause the condition. if i am correct? Hopefully someone can be more precise?

I was diagnosed at aged 20, my biological father was diagnosed aged 14, he didn't look after his diabetes well, some ways from lack of knowledge, some ways through laziness and lack of motivation, complications of alcohol, diabetes and drugs lead to his death when i was 13. i hadn't seen him since i was 7 and have absolutely no memory of any diabetes care, so when i was diagnosed i hadn't a clue!

It's interesting your view on insulin pumps too. I was on MDI for two years read alot into insulin pumps, the pro's and con's and different people's opinion.

I first asked for an insulin pump in november 2009 and was hooked up on 21st february 2011, and if i'm honest it has some downsides, as MDI does, but i would not give it back unless i was pinned down :lol:

The benefits after only a few weeks are so significant to me personally that i feel my health is improving generally, to things like feeling cr*ppy because of swinging high and low.

But i do understand what you mean by feeling 'kept alive by batteries' being constantly hooked up daunted me at first but the pro's for me definately outweigh the con's.

on MDI i would be moody and tired, i was on target 60% of the time i guess, the other i was sky high or hypo.

Now on an insulin pump i'm on target 75% of the time for now, but the rest of the time, i'm not sky high, just a little above target. I haven't had a reading over 14 since i was hooked up

I don't see why you couldn't go back to the pump if they do advance so far it can literally be a mechanical pancreas, i think it would be more appealing to alot of people when they manage to crack that one.

But in the mean time i don't see why anybody can't be happy and well controlled on multiple injections, it just didn't work that well for me, and it really wasn't from lack of trying trust me! :lol:
 
Thank you for sharing your experience with me. I’m sorry to hear about your father.

There is another reason why I don’t like using the pump. I was taught to insert an infusion set every other day, but it’s all about luck with the insertion of the infusion set. Some days it works out well, but other days I have to use three infusion sets before one is attached on to my body which works and doesn’t hurt. Sometimes you hit a blood vessel or there is a kink in the tube and the alarm doesn’t always go off. The first few hours you have to check your glucose levels carefully in case the insulin doesn’t reach your body in the right amount or not at all. I insert the infusion set on my stomach or on my legs, though insertion of the tube/needle on my stomach does hurt most of the times. Don’t you experience this problem? It also hurts when the insulin is building up in one place underneath the skin because the tube stays in one place for two days.

To be honest I have develop a bit of a fear of inserting the infusion set, because every time I had to insert the needle it was always a surprise whether it would hurt or whether I would be lucky this time.
 
:lol:
It's fine, he wasn't very pro-active in a fatherly role. I guess it has taught me that i must take care of my diabetes, even if it took a while for that to sink in and i have a great step-father who has been there since i was 5 and even though split from my mum a few years ago is still there for me, diabetes and all.

I only use infusion sites on my stomach, i stopped even injecting in my legs a long time ago as it bruised quite badly and could be quite painful, but i use the whole of my stomach and rotate sites very well so i have no lumps or bumps

I use steel cannula's which i change every two days, so i don't have any kinking problems, and only once in a while have i felt discomfort which is usually when two days is up and i have to change it anyway so i haven't experienced any great pain in that respect.

I have only alarmed a few times, which at first i though must be an air bubble, but i think it was the site to blame as i got fed up and changed the whole infusion set and it was fine there after.

My experience so far only for a few weeks is good, i think it takes time to get used to it all, i hope to be a pro soon

It probably would be off putting with problems inserting the infusion set and worries your not getting your insulin, so i don't blame you for going back to injections if it wasn't working that well for you.

They have the omnipod pump now which is tubeless, i've heard good and bad about that one, but i doubt anything will be perfect, especially when it comes to diabetes
 
I didn't know steel tubes existed, mine are made of soft and flexible plastic and they are very vulnerable. The needle you shoot in is made of steel, but the needle you remove and the plastic is left behind.

About the omnipod, how do you receive insulin when there’s no tube?

When I was diagnosed with diabetes I didn't even know what diabetes was and I didn't know anyone who had diabetes either, but my family was very helpful and caring. It is good to keep motivated to have good glucose levels.

Well I am glad to hear that the pump is working out for you so well, maybe I will try it again sometime.
 

At first i was using the sort your talking about, made of teflon but have a steel 'introducer' so you can put them in, however the ones i was using were re-called by accu-chek as they received a number of complaints so i switched to a steel cannula instead. Not as flexible as the teflon cannulas and you have to change them every two days instead of every 3 days but i think they're more reliable as you know your getting the insulin and it hasn't kinked when you insert it.

The omnipod, i believe there are one or two members here who use it, or have trialled it, the pump is attached directly to the skin, i think by a cannula too, i'll try find a link as it's very interesting. it's quite small too!

My mum knew a small amount as she was married to my dad, but as my dad had poor control the information she had was very out of date or incorrect. But my whole family has been great, as well as friends and work too. It does help to have people that care about you to support and help when they can.

My kid sister who turns 16 next week so it's that much of a kid anymore :lol: she's brilliant bless her, always interested how im doing and is Very kind and thoughtful if i'm feeling poorly or having a hypo bless her

If you do try again, i hope it goes well and you enjoy the experience better as the pumps are improving all the time
 
Dear All,

I would like to thank Ebony for sharing her experience with me, I hope your well.

I would really like to read about your experiences of living with diabetes type 1.

Did you know that when you have diabetes type 1, chances are you are actually allergic to different types of sugar? I find this quite interesting, and I am wondering whether people with diabetes were first allergic to sugar and then developed diabetes or the other way around.

I have a question for you all. Since a year I have gastric acid, and I have to take pills for it to protect my stomach and the oesophagus. Who has gastric acid as well? If so, do you also have Hypothyroidism?

And a second question. Do you experience an increase in tiredness since you have had diabetes? A few years after being diagnosed with diabetes type 1, I noticed a decrease in my energy level: I get more easily tired. I have hypothyroidism which also causes a dropping of my energy level, but now my TSH and T4 are stabilising my energy level has become better. If I look at my colleagues, the energy they have, they have full time job and after work they go and visit friends, go shopping or any do any other activity and the next day they repeat it. I just don’t have the energy for it, when I come home after work I am too tired to visit friends or other things. Of course, work or no sometimes I do need to do things even though I am tired.

Looking forward to hearing from you.

Kind regards,

Paula
 
Hey Paula and welcome. Have read your post and find it quite interesting even though I am a t2. I do suffer from severe gastric reflux and am on omeprazole to control this, lately I have found myself feeling extremely sick and the doc has given me metoclopramide which works a treat and enables me to eat. No idea if my thyroid is working properly but have had tests so assume the doc would tell me otherwise. I do find I am more tired after being dx but felt terrible for a long time before, I would fall asleep at about 2pm and then wake up feeling cr***y. Am a bit better now but have to watch what I eat and test if I get too bad. Understand where you are coming from and feel I am lucky that I don't work but have other problems too. pm if you need/want to chat

Clair x x x
 
Hi Paula,

I have been diabetic for over 20 years now. I was six when I was diagnosed so have grown up with the injections, BG checks and so on.

For the most part my diabetes has been well controlled; my last HbA1c was 6.1. Things did get a little out of control between the ages of 14 and 17, however. I hated the fact that I had diabetes and the impact that it had on my life. Looking back, the impacts were minimal but, as a teenager, I resented the fact that this illness was always with me. I really let things get out of control and my HbA1c levels rose dramatically. I also noticed that my weight began to drop as my sugars became less controlled and I used less insulin. I ended up developing an eating disorder and was barely injecting as a result. It all came to a head just before my 17th birthday when I was taken into hospital with DKA. I was really lucky to survive it and it was definitely a wake up call!

These days things are much better. Like a lot of diabetics, I do find that I struggle to lose weight and tend to put on the pounds quite easily. I have learned to manage this and am now a healthy weight and have good control of my sugars.

Like you, I also have problems with my thyroid. People with autoimmune conditions are more likely to develop other autoimmune conditions. Diabetes, thyroid problems, coeliacs etc all fall into this category. I also have coeliacs, which means that I cannot eat oats, wheat, rye or barley.

I have heard a lot of talk about the pump but it is never something that has appealed to me. Two main reasons for this:
1) I don't want a pump attached to me 24/7. Largely a vanity thing, I know!
2) the majority on pumps on the market still require you to test you BG and adjust the dose accordingly. There was been talk of closed loop systems (ones that test you sugars and automatically adjust your dosage). Until these become more widely available I will be sticking with my injections. I have been diabetic for so long I think a part of me would miss them!

Hope this helps you. Good to hear other people's experiences

Take care
E
 
Thank you Clairslloyd and Elc1112 for sharing your experiences.

Clairslloyd, I am glad to read you find my post interesting. What does DX in your post mean? I am happy to hear you are feeling a bit better. Ever since I have started taking Omeprazol Actavis I don’t have to watch what I eat or drink. In a few months I am going stop taking those pills and see whether my stomach has recovered or whether it is a permanent stomach problem. I really do not like having another problem added to the list.

If I may ask Elc1112, how do you manage to maintain a stable weight? Two weeks ago I stopped eating crisps, sweets and so on, but I haven’t lost any weight yet… It is already a miracle that I succeeded in not eating unhealthy snacks, but it is disappointing that I haven’t lost any weight. I am sorry to hear you have coeliac, it must be difficult as a big part of our food exist of oats, wheat and so on, but luckily there are many other things we can eat. I have lactose intolerance; I need to avoid dairy products.

I do feel the same way about the pump, I feel more like a diabetic with a pump attached to my body than having to inject every time I eat.
 
Hi Paula,

It hadn't always been easy to control my weight and, I must admit, I am often very envious of my non-diabetic who seem to just think "diet" and shed the pounds!

I exercise quite a lot. It can be hard to get into it sometimes, but if you find something you enjoy it makes it a lot easier. I tend to go to the gym 5-6 days a week and do various classes and so on. I have found that this really helps to keep the weight off. I also try and watch what I eat, although there are days where the answer is definitely a large bag of kettle chips!

In terms of diet, I try an avoid the bad foods and follow a low Gi diet. I have found that it can be quite difficult managing both your weight and diabetes, but it is do-able.

I saw a personal trainer/nutritionist a few years ago. She specialised in weight management and diabetes. She was really helpful at showing me which exercises I should be doing and how to structure my meals to suit. The initial session was about £50 and subsequent sessions about £35. Might be worth looking into. I also find that it gives me something to work toward; she sets goals for the next 3-6 months and it really helps to keep me focused.

Hope this helps
E
 
I am also a type 1 and also have hypothyrodism... If antibodies were found around the thyroid then this is related to the auto immune disease. I got diagnosed with type 1 4 years ago and hypothyrodism 2 years ago
 
Hi Paula

After reading your exp i felt i had to reply.
I am 24 years old In June and i myself was diagnosed with Diabetes Type 1 a month after my 18th birthday.

After being diagnosed i has several very traumatic incidents happen to me, the latest of which was losing my caring loving mum to pancreatic Cancer 2 years ago.
I feel the stress i go through everyday makes it so hard to keep my levels normal y'know.
I am trying to put weight on as i have been underweight most of my adult life.
Finally however recently i have started putting weight on as i am cooking all my meals myself and trying to eat the right things and get the balance right.

Lots of things about Diabetes scare me, especially Hypo's, i know i have had it 6 years now but i still hate the feelings you have when you have a Hypo.

My wife is amazing but together we try our best but most days it takes so much to not let it get me down.
I have a severe fear of Needles and anything sharp so just doing the injections is so hard.
Hope i am not alone in these feelings.

Hope everyone is doing ok
Take Care
Ant
 

Hi,

I'm sorry about the loss of your mum, that must be very hard. Back in october my mum went into cardiac arrest suddenly, and it was touch and go which was scary in itself.

I also lost my auntie in may too, she was only 47. so i understand that stress and upset can make it very hard to keep your diabetes in check.

But you are definately not the only one, one of the amazing things about this forum, there's plenty of people who have the same fears and worries.

Take care
 
Hi all

I can't believe how great you all are for sharing your experiences and stories with each other. I am type 1 for the past 15 years and just recently completed a carb counting course here in Ireland that has helped my control immensely. I had rocketed to 10.4 and was so disappointed in myself. I normally have a HBA1c of about 8.1. I found it very difficult to find an online forum to discuss with other type 1's and setup my own site to try generate some support.

viewtopic.php?f=23&t=11071&p=188295#p188295

I seem to spend a huge amount of time dealing with my diabetes on my own and often wonder how others are managing. I try not to let my diabetes define me but some days it just butts right in and does it for me. The joys! On the other hand it has motivated me into action and I feel I have a lot to give in the way of support to other Type 1's. Without diabetes I wouldn't have met so many great people nor would I have ever opened up.

So good luck to all of you..... Here's to better control and ongoing support!
 
Susan,

That's a great site. I moved to Galway last September and am still waiting to get a diabetic clinic appointment. I don't know anyone who is diabetic here so the online support is a major help. Keep up the good work - Ireland definitely needs more community based diabetic support. What you're doing is really important, and I hope it motivates you too,
 
Thanks so much for the vote of confidence. I know how frustrating it can be trying to find support in Ireland. What's worse is the delay in getting access to new clinics. I've had a very similar experience to you. I moved clinics in the past few weeks and my appointment isn't until August. In the meantime I look to my peers to pull me through. Kind words like yours are always welcome and certainly keep me motivated. It's challenging but rewarding when it pays off. If I can help our offer advice in any way... I'm not the expert but know what it feels like to live with diabetes.
 
Hi Paula,
I was grateful to read your post.I am 56 and I ws diagnosed with T1 diabetes when I was 17. My own theory is that hormones are playing havoc around ths time and hence the vulnerabilty to hormone disorder. Any way back then the experience was traumatic ,having to use huge needles and loads of surgical spirit and it was all very cumbersome . I never used to test and I felt no one really understood the psychological effect having diabetes had on me. In a sense one cant see diabetes so it is not obvious and for me this meant this was something I just had to manage. In 1985 I developed hyperthyroidism . I struggled with this condition until having a thyroidectomy operation. I got better.
In 2002 I was introduced to DAFNE and I thought it was wonderful. It really changed my life giving me flexibilty and access to foods i would have previously ignored.I like the disposable pens so I cant complain.I now test obsessively at least five times per day because i know this gives me control. . I think it is difficult to determine whether I am tired because I am tired or whether I am tired because I am having a hypo so I always test. I am terrified of having a hypo,having once passed out on the northern line tube in london which travelled backwards and forwards until i eventually woke up.
I have to say that I manage my diabetes as best I can. However I do find it hard .
I like the idea of a pump though no one has ever explained its benefits to me. I think that once when I was at the diabetic clinic the doctor threatened me that if my HB1AC's did not improve I would have to go on to a pump. This sort of attitude does not encourage me. When I started out as a diabetic the attitude then was that I was "ill" so it is encouraging now to be treated as having a condition that needs management.
Having read what has been said about pumps I think i will now explore this at my next hospital visit. I like the idea of having better control. Finally I have just started going to the gym and I have found that excercise definitly helps
ancient
 
Hi!
Thank you for sharing your experiences!

As for me, I got my diagnosis just before turning 13 and I've had it for 11 years now...
I had no idea what it was when I first found out, but I understood it was serious as my mum started to cry.. I was already struggeling too much to walk, talk and drink my 15 liters of water to try to understand...

But in the beginning I had NO problems; my results were perfect during 6-7 years and I didnt really have to work hard for it... Only I was a little bit chubby... I learned that I would be able to do like I've always done, so I kept on snowboarding, playing football, camping in the mountains and dancing. I even took an education to become a professional dancer, but realised that it was a littlebit complicated in the end, having the conflict between weight, glucose and physical performances. I finished the studies and went on to a one year study (norwegian system) where I went camping often for a week in down to 30 minus.. But that too was complicated in the end.. (although it was nesessary to eat a lot of choclate at night to keep the same doses of insulin.. yumyum!! )
I went to Thailand and the Phillipines and even got to try medical treatment at a hospital in the last mentioned country.. Interesting, but for them diabetes is treated with pills.. Finally I kept the control for my diabetes and they fixed the rest..
Now I live in France where they have a good healtcare system and especially for us with diabetes.
And the worst part is that I dont take advantage of it, and my results are bad..

I guess Its hard for me now because it was so easy in the beginning. I was so proud to show my good results to my parents and to take the responibility all by my self.
I got a pump at the age of 15 but didnt really need it at that time. Now I couldn't live without.
The first years I took it off during summer so I could easily carry light summerclothes and bikinis and I got a break from being a dog in a leash..... I still feel it sometimes.. Like when i just got to bed and I've put the pump under my pillow, i remeber that i forgot to mesure my glucose, so I jump out of bed to get it, only i forget the pump, and there it comes full speed falling on the floor.. But I'm getting better.. :roll:

You have been talking about having a pump connected, and I understand yours pros and cons.. For me it is a question of avoiding the hypos at 2.30AM... Witch I had with my Insulatard treatment. (Lantus didnt exist at the time..) Another point was that I forgot my pens at home when I went for school or cinema... (But i actually forgot my pump going to the capital of Norway with my class for the day, so there's no guarantee.... :? )
But as the pump always stays in the pocket of my pants its easier to know if I forgot or not..

I have had very few problems with the infusion set (Medtronic Silhoette - teflon needle) and resently started with the silserter witch helps to inject- meaning faster and less painfull.... Yes it's true!!! I hesitated for many years untill 6 months ago as it looks brutal.. And as it was bothering me quite a lot to inject by my self with the pains, why not to give it a try?

During my travels to the warmer zones I only kept the pump at night and used insulatard and humalog/novorapid at daytime to avoid sunexposure to the pump and staying too long without insulin taking baths and doing watersports.
It seemed to work fine although I didn't spend my holidays cheking the glucose..

But nowadays I'm less keen on exploring and just want to try to get a normal life with habits so I can treat myself better.. Last years has been a lot of working in stressfull conditions and traveling and insecureness about the future, so my diabetes was always the least important..
Now I start feeling the sideeffects... My view, migrene with high glucose and tired... And my periods has been more or less absent since i started dancing.. Weird moods...

I feel old at the age of 24.. So I need to do something.

Sorry about the long comment, but I'd be happy to have someone to talk to as I never knew anybody with diabetes t1.
 
Dear All,

I am sorry for my late reply, I have been very busy. I have started a new study, and I just finished my exam week. I don’t know whether you all experience this too, but when I am very nervous – I become very nervous when having exams – my glucose level either drop or they go up. This is very annoying, because I never know what will happen, but most of the time my glucose levels decrease.

Thank you All for sharing your experiences, it is ‘nice’ to know that I am not the only one struggling with the problems of having diabetes. I am glad to read that you find this post interesting to read.

Thank you for your advice Elc1112, I really should get more exercise.

Thank you hails, for your post. When you were diagnosed with diabetes, were your TSH, T4, T3 readings within their boundaries?

Hello ant2themax, thank you for sharing this with us. First of all, I want to offer my condolence. You are not alone; I am still a bit scared of needles! I have a pen called ‘penmate’, and I am very happy with this system. See the website adres below for more information and for a picture of the penmate: http://www.novonordisk.com/diabetes/public/insulinpens/novopen3/penmate/default.asp

I still am very scared of giving blood. My sugar levels go sky high when I need to give blood every three months. I am ashamed to admit that when I see a young person, who will be taking my blood, I always ask whether they have enough experience. Inserting the needle to draw blood doesn’t really hurt, and afterwards I always think: That wasn’t scary. But for some reason I can’t stop feeling scared and very nervous when I need to give blood. Since a year I have started looking at the whole process – when they insert the needle and draw blood – and I must say it does help a bit. People remain scared of thing they don’t know or see, because it is unknown to them. I know it sounds silly, but last time I went for the first time alone, and I am very proud of this achievement. Many people don’t understand the fear for needles, and I know these fears are all in our heads, but it doesn’t make them less scary. I hope that all these steps will eventually help me to not being scared of needles. I truly hope this helps a bit, and do know that you are not the only adult person who is scared of needles.

Hello ancientdiabetic, thank you for you post. When I was diagnosed with diabetes I started doing a bit of research on diabetes and its history. It must have been very hard to have lived with diabetes in those times! I don’t know how I would have managed with such big needles. Psychologically it must have been hard too. I think you have done very well. Nowadays, when you inject your insulin people know that you have diabetes and they do not think you’re a drugs addict. A pump is indeed better, because it copies the pancreas better. There are plenty of sites with information about the pump, and I recommend reading those. Every treatment has their positives and negatives, and every person experiences living with diabetes differently. There are many people who are very happy with their pumps and they wouldn't trade it for the world.

Bonjour dancingplasticfish, thank you for your post. You travel a lot, I admire that you have dared taken on these adventures. I have also wondered what the effects would be on the glucose levels when living in different climates. If you would eat every day at the same time, thus having a stable daily rhythm, it would be better for your glucose levels. This takes a lot of personal management, and it is almost impossible to eat every day around the same time.
Do you put your pump in your pockets? I don’t like putting it in my pockets, because when you put it in your pockets a lot you eventually see lines where the fabric has been stretched by the pump.

I have read in a diabetes magazine that they are doing research on why diabetic people are more tired. I am very curious of the results, for it does effect our daily lives.
 
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