Living with type 1 diabetes

Hi Jessica,

I've bee diabetic for over 20 years and am now in my late 20s. I was diagnosed when I was very young so don't really remember how I felt when I was first diagnosed. I remember feeling different to the other kids and didn't really understand why I had to have injections and why I couldn't eat what I wanted when I wanted without worrying.

As I older my understand of diabetes did improve. Still felt a bit different and was picked on a bit at school because of it. This meant that I started to hide my diabetes from people and, in a way, started to feel quite ashamed.

Thugs got really hard when I was a teenager. I was aware that the insulin made me put weight on and I really hated it. I stopped taking insulin and injected only when I really had to. I developed an eating disorder and my control really suffered.

All ok now but I still find it difficult at times to live with this disease. I hate the fact that, even though my control is good now, I am at risk of complications because I have been diabetic for so long. I also think there is still a huge misunderstanding surrounding diabetes - a lot of people think diabetes is something that you get if you're obese or in poor health etc.

Anyway, hope this helps and is the kind of thing you were looking for. Give me a shout if you need anything else. Please excuse any typos - I'm on my phone and it's not great for typing!

Em

I got my diabeties when I was 18, I'm 41 now, for over 5 years I basically was in denial, missing injections, never testing, Never making allowances in my lifestyle to accomodate it in any way shape or form, my sugars were always off the chart and my hbac was regularly in the high teens or higher, I felt 'why me?', in my mid 20's I started to pay the price for my denial, after several visits to hospital for DKA, I basically was told that if I didnt get a grip I'd be pretty much goosed by the time I was 35.....basically I started to take more care of it, but the shifts I was working @ the time made that difficult as it was continental shifts 12 hrs 3 on 3 off, Alternating days and nights...I had loads of time off due to ill health, and at roughly the same time my mental health started to suffer and I was diagnosed with Bi-polar deppression, this only amplified the stuggles I had with my control, leading to losing my driving licence for a year, (being a petrolhead that really hit me hard), that then really amped up the problems with the depression, and it became a very steep downward spiral, with both the depression and the control of my diabeties, the end result was I was out of a job and struggling to cope with the depression, and after another stint in hosp with DKA, I was read the riot act by my consultant, I got my sugars under a semblance of control, my HBAC1's came down to 9-10's I managed to get another job and things started to pick up, but then with the lower sugar levels Hypos became more frequent, 1 of which resuled in a 9 day stay in hospital there were concerns about possible brain damage as I had no memory for 2 weeks prior to the hypo or 5 days after, even now I dont have a clue what happened. My employers were initially very supportive with me and worked hard with me and the dln's to help me stay in work, but as I I had had 2 severe hypos @ work they were advised by the occupational health Dept that I was just too great a risk to be in that environment, leaving them with no option but to terminate my employment, which after a couple of years delt a hammer blow to my battle with the depression, as of now I am currently off work with little or no real chance of getting back into it untill I can sort my hypos out, I have been working hard with the team @ my local hospital but there are no patterns or visable reasons for the rapid onset of the hypos, the doctor has signed me off, pending my medical for ESA, which I had in December, got the report last week and I was deemed fit for work, I went into the meeting with 4 consultants letters explaing the problems I have, a letter from the occupational health nurse explaining why in his opinion I was unfit for work unless I was under supervision at all times due to the rapid onset of hypos.. so I am now in the position where I have to go onto Jobseekers benefit, apply for jobs that, I will have no chance of getting due to the fact both my last 2 jobs I was basically medicalled out of due to my diabeties, and I've no qualifications to speak of..

I have learned over the years from reading alot about the various 'complications' of diabeties, that mental health issues are very common and the ability to get back into employment after diabeties related problems, as due to the lack of knowledge employers try to shy away from diabetics.


Thats given you a kind of 'potted history' of my last 20 odd years dealing with diabeties, its difficult enough when control etc is good....

Sorry for the rambling post... but once you get bashing the keys....well you know how it is...

Good luck with your course

Bob

Dear Jessica,

Hi!

Age: 44
Diagnosed Type 1 eleven days ago.

How do I feel? Very good question! Numb is probably a good adjective, it's still all too new to have any real handle on how I feel, as to friends and family, so far shocked, surprised, supportive, sympathetic - even one very good friend with whom I have always had a slightly competitive relationship who when hearing the news for his wife phoned me and said "I hear you've concocted some ridiculous scheme to try and lose weight, it'll never work, I'll always be thinner than you!".

How did the diagnosis make me feel? Relieved.

Although I do have to say that if the GP had had her way I would still be considered a type 2, on metformin and be having to lose weight and exercise more! I've always been fit and healthy, rugby, judo, running, cycling etc so have a large frame and therefore am considered 'obese' (ha,) when in fact my body fat is very low.....

I was referred to a DSN who immediately put me on insulin and I am now having to learn what being an insulin dependent diabetic means in practise! Learning to carb count, test BG, remember to inject, keep hypo kits secreted about the place and on and on....

Good luck with your studies.

Kind regards,

Bucco

Hi Jessica,

I'm 29, been diabetic since my 12th birthday, so it'll be 18 years this April that I've been diabetic.

I remember being diagnosed and feeling a lot of 'why me?', throughout my life, this has often been something I ask myself. My family felt a lot of guilt because they'd been telling me to stop being so lazy and accusing me of having an eating disorder - in 1994, diabetes wasn't so well known about.

Throughout my teens, I didn't get good care from my diabetes clinic and they deleted me off the system by mistake so I didn't see them for almost 3 years. My sugars were rarely tested but I did my 2 injections a day, always at the same time and eating the same thing. My weight was hard to control and I felt like a fat elephant next to my friends. I could never diet because every time I cut down on food, I had hypos, so I felt like everyone else had a lot more control on their life than I did. I didn't understand diabetes as well as I do today.

I guess the biggest impact my diabetes has had on my life has caused me inordinate amounts of grief and that was the death of my daughter. I was on DAFNE, my sugars were good (between 6 and 7) preconception and I was able to control what I ate. I was, again, not looked after properly by my GP. When I told him we wanted to try for a baby, he didn't refer me to the diabetic pregnancy clinic or give me folic acid, he just told us to get on with it since my sugar levels were fine. So we did. I didn't see a diabetic consultant or DSN until 12 weeks into my pregnancy because my GP was so slow referring me. At 26 weeks, I was scanned as usual and they noticed a ventricular septum defect in my baby's heart. From there, we went through all kinds of hell with scans, appointments with consultants and an amniocentesis which was the most horrific thing I've ever had done to me. Even after all of this, they couldn't determine whether she had truncus arteriosus or hypoplastic left heart along with her VSDs and aortic septum defects. I was asked if I wanted at termination but couldn't even think of doing that at such a late stage. She was born and was okay for a while because of the machinery they had her on but they found that she also had a narrowed trachea and Pierre Robin syndrome along with truncus arteriosus AND hypoplastic left heart. They decided they could not operate.

My life ended there. She died in my arms at 19 days old. For the past 5 years, I've tried to pick myself up and get on with life, but ultimately, I'll never be the same. I split from my husband because of it also.

So yeah... diabetes causes me depression I'm afraid. I try to get on with things and live life, but some days it's hard. Now, I'm having further complications even though I've looked after myself well for nearly 10 years now, I'm starting to write up a list of things I want to do before I can no longer walk and see. Usually, I'm upbeat but when I actually think about the impact this disease has had on my life, it really gets to me. :|

Hi Delphinum, what can we say to that, I personally am speachless, and know any words wouldnt even come close to the way you feel.

I do honestly hope you get whatever help you need/seek, to be able to keep life going forwards in the future.

Bob

Thanks, Bob. I am usually okay and certainly don't let diabetes turn me into a victim in day to day life but things have been hard for me. I imagine everyone else here has hard things in their lives too dealing with their diabetes so I don't feel unique in that. However, I feel like throwing things at the news programmes on tv today talking about how 1 in 4 diabetic pregnancies result in birth defects. :roll:

I forgot to say good luck with your course, Jessica. I hope that you get useful feedback from us all.

I am a parent of a child with T1 diabetes (age 5 and dx @ 8 months). I have not been able to return to work, I go without sleep (a lot), I spend a lot of time teaching those willing who care for my child about diabetes. Diabetes is time consuming and I struggle to take care of myself properly.

Waiting for hours in clinic and getting frequent blood tests is awful for young children who don't understand. I am yet to fully understand if this will become a worse problem or improve as the years roll on.

Other parents don't understand you are late because your child was hypo just as you were getting ready to get in car. Nor do people understand the implications of illness with diabetes and kids get sick much more than adults. There are times tha t we need to stop what we are doing and test or feed. Even travelling in the car it isn't like we can just drive to the next town. It might be a case of pulling over on the side of the road.

I've nearly had someone calling an ambulance thinking I was using an Epipen on my child. There have been multiple other comments while in public but mostly I do what I'm doing unnoticed.

Diabetes is a relentless condition but going with it makes for better head space. If you fight with it you will lose.

Post removed due to lack of interest of OP

Jessica -- diagnosed T1 in 1978 at 9yrs old, got a few days in the hospital learning the diabetes game. i gotta say, the whole thing struck me as kinda small & unimpressive as far as a disease went -- and not that I'd want more or worse, but really: watch what you eat, and a couple shots a day? test yr pee?

that didnt really sound like a disease, it sounded like like a set of marginally annoying things, but marginally at best.

now of course this might have been a short-sighted view, but at 9, diabetes didnt really rock my world at all. keeping a1c in check wasnt really that tough, and aside from an occasional very not-serious hypo, it was a disease for somebody who couldnt hack a real disease. mary tyler moore had it, and she was cute. and accomplished. this was the disease for me, if i had to have one.

my folks took it seriously, but only as seriously as it seemed to demand --- make sure i ate appropriately, dosed appropriately, and when they found out i'd not been testing, they flew off the handle. subsequent a1c was beneath 6.5, so that was kinda a non-issue ultimately (up until later years of the disease, always between 5.5-6.5). and not at all to say that they were uncaring about it or anything of the sort, but there really wasnt a whole lot to it, and didnt need to be.

my friends knew "add sugar" when i said "i need sugar," which was infrequent at best. that was as far as it ever got, and ever needed to get.



non-disease, thats what it was for me, thats how it was treated, and thats exactly how it stayed, for about 15yrs (1993). a walk in the park as far as a "disease" goes. this wasnt MS, this wasnt cancer. QoL before diabetes was 10, and 10+ for yrs afterwards, with an hours worth of 9.8 spread out over every month between testing & shots. the over-analyzing of anything within the realm of the disease just seemed a fool's errand at best -- why spend forever trying to quantify this and that, if theres a bajillion other uncontrollable unquantifiables?



curiously, after being strongarmed into using man-mucked insulin in 1993, immediately my decidedly non-disease started becoming a very serious one, involving a thousand hypo-seizures, calendars filled with visits to specialists who've not resolved anytihng, and well, basically, a real disease now, or at least being tied to the insulins has become the real disease now -- score one, big pharma. QoL has been hovering at about 0 for about a decade (since my introduction to in$ulin$ v2.0 et al), outside of brief returns to natural insulins coinciding with meteoric rises in QoL. hmm, funny that. diabetes itself i still find an absolute walk in the park, except the sweets available these days are just so much more tempting.

____________________________________________________________________

Delphinum -- i just dont even know what to say, except to acknowledge how strong you are in carrying on after all that. i'd not have the strength.
Past that though, i think you should begin to differentiate between the disease and the absolute incompetence of your GP, the clinic, the system, the whole disgraceful lot of them.

Hi Jessica,

I'm 33 and was diagnosed as a T1 when I was 31. I have a wife and 2 boys (aged 7 and 8) and lead a pretty hectic lifestyle.

My lifestyle itself has not really changed since diagnosis and I still do the same things I did prior to being diagnosed (other than eat without taking injections obviously).

My initial feelings were pure shock and I did lots of research on the internet that told me I was going to die 15 years sooner even if I controlled the diabetes well. I wouldn't say this depressed me but I went through a good 6 months of feeling scared inside. I never really wanted to share this with my wife / kids as I wanted them to see that I was strong and not worry them. That passed though and as I did more research and also got some really good hbA1C results I was a bit more comfortable with it. Last year I got a letter saying that I had some 'diabetic retinopathy' even though my levels are really well controlled so this put me on a downer again. especially as I had (and still do) exercised regularly and always ate healthily. It's all up's and down's really but on the whole I think I am pshycologically sound. I am a positive person generally and also have faith in God, so I will take what life throws at me and smile through it all. I look at what some people go through in their lives and I am actually blessed in many ways, diabetes is just a slight inconvenience. My biggest fear with Diabetes is that it will be passed on to my boys - I think about it quite a bit.

I also find that if my sugars are low and I am impatient with the kids / wife as a result I beat myself up about it (or rather get angry with my diabetes if that makes sense) as I sometimes snap over things I wouldn't normally snap over. This is only on rare occassions but I still think my wife/kids see a side of me that they would not have to if I was not a diabetic.

There are also the times when I have to think differently about social situations. Prime example is my friends stag weekend next weekend. We are going to Newcastle and had I not been a T1 then I would have got drunk for the entire weekend. Now I will have to be sensible and make sure I have a packed lunch etc when everyone else will be letting their hair down, but it's about perspective and ho I view it. I could think a) This isn't fair, I'd love to be getting hammered with these lot or b) I'll save a fortune, won't end up a drunken mess, won't have a bad hangover and will not annialate my liver for 3 days. Option b sounds better to me.

I play football once a week and this part does annoy me as if I slightly misjudge my insulin I end up having a hypo and then my game ends early or I end up missing a big part of the game. Ok, I'm 33 and never going to play in the Premier League but when it's a crucial game in my pathetic little league it still annoys me!

There is also the times when it's more just 'in the back of my mind'. For example my partner went on a hen weekend recently and I had the boys to myself for the first time ever for a whole weekend. Luckily I've never had any bad hypo incidents that have rendered me unconscious but for the first time ever I had to think 'what if?....'What if I did have a hypo in my sleep and not wake up?' 'What if I did have a hypo while the kids tea was cooking?...ok the second one is unlikely when I had to feed them McDonalds for 3 days as I can't cook, but you get the picture.

To sum it up as I see it...."diabetes is something I have to CONSTANTLY have on my mind without having it CONSTANTLY on my mind" <----Off the top of the head and I like it!

Hi Jessica,
I'm 25 diagnosed type 1 5 years ago whilst I was at uni. I only found out because my mum insisted I had lost weight quickly and I must see the dr. I kept putting it off until I was pretty sure she was actually going to drag me there herself! I remember sitting in the waiting room after the wee dip test and initial prognosis thinking they must be mistaken I was fine. I went home surprised but didn't know much about it. I got sent to the diabetic clinic the following morning with my mum where they told me everything and gave me insulin pens and a meter. I remember going back to my car and it was nearly lunch time. I was starving so sat and ate something, possibly a chocolate bar. I ate it, thought I don't want to do this but figured I should just get on with it, did my injection and had a little cry.
Thankfully due to a long honeymoon period and a reasonable low carb low gi diet anyway my blood sugar was relatively easy to control. I just got on with it, but I know my boyfriend was rather shocked and didn't know what to do. Ironically I felt I had to be there for him rather than the other way around! It took about 4 years for my mum to stop blaming herself which really made me feel bad and I avoided going round for meals.
After the honeymoon period ended I have had a few issues keeping my blood sugar on the straight and narrow, it doesn't always do what you would expect but I think I may have finally cracked it.
My biggest learning curve was the realisation that dr's don't know everything and after a few months set about learning everything I could. I can't remember a time when I didn't carb count and I try to test regularly. I often get asked how I remember to check my blood or do my insulin, I always ask them how they remember to get dressed everyday. It's just something you do.
I don't like thinking that diabetes is a disease or an illness as that implies you are sick and should be in bed. It's a malfunction and there's no replacement part at the moment but one day there might be.

Ok, maybe I am just having a bad day... Jessica, a lot of people have shared their experiences with you here. Some have shared some really personal stories all with the aim of helping you with your studies. Not a single reply from you to say whether this is helpful, useful or even thank you!

As I said, maybe it's just me having a bad day....

Rant over

Hi Jessica,

Have to agree with Elc1112, and add to it. It is not appropriate to just come on forums and ask people for data. I am researching in psychology at postgraduate level and there are very clear guidelines on how this is done.

1. You need to state which university the project is being run from.
2. Provide contact details for the researchers
3. As a minimum give us an overview how the data will be used, why it is being collected, whether you have had ethical clearance PRIOR to data collecting, and how one can pull out of your study.
4. You should also provide people with the results of your study/studies (or access to them) which have used the provided information.

I strongly suggest you check out the British Psychology Society's rules on ethics found at: http://www.bps.org.uk/publications/poli ... licy-docum

These standards are in place to both protect the people running studies and those who participate in them. It is not proper to just come onto forums and ask for information out of the blue like that.

Sorry for the rant but seriously....
Frankie