How to find yourself again

Type 1 and LADA
#1

Hi everyone,

I'm a film maker and recent member of the type one posse. I was diagnosed on Feb 4th 2012 at age 38 - quite late on in life I'm told. Well, It's certainly been a year to remember - although I only have vague memories as most of the time was spent in shock and adaptation. It's a year that has of course changed my life.

To me, my diagnosis represented the end of my life.. Certainly the end of the life I was accustomed to. I sank into a deep depression and my world consisted of waking up, eating a 30gram carb breakfast then testing.... then testing again and again and again. Then a carb counted lunch followed by more testing and for pudding.... more testing. Then dinner and more testing. 40 jabs a day into my sore fingers. Then bed... and anxiety and sleeplessness etc etc. you get the picture. I left my job and isolated myself from everyone I knew, especially the doctors and nurses that kept trying to contact me.
Life was over as I had lost my free will. Or rather my freedom had been taken from me. That fact that I had attacked myself and this wasn't some exotic disease I'd caught made things even more terrible.
No more fun... no festivals, no travel, no more booze, no dancing (hypo mid dancefloor) no children, no partner, no spontaneity, no staying up all night , no thought of ambition ... no nothing....

I was not in a good mood.

Life carried on in this vein for a long time. Then I discovered this site and met some amazing people whom offered me a different perspective and suggested that there may be hope of life after diagnosis.

Slowly I came to realise that having T1 Diabetes is not a death sentence but more of a deviation from where you were before.
I still struggle and find life difficult sometimes but I now have a sense of hope for my life and a will to try to find my old self...

With this in mind, I have decided to make a film about finding life again after diagnosis. It will be essentially aimed at folks who have had a fairly late (ish) diagnosis and are in that scary place where they are perhaps struggling to find themselves again.

I'm working with some people who have had D all of their lives and also with some that were diagnosed later in life.
All of their input is fantastic but I would love to throw the net wide and get some insight from anyone on this wonderful site that may be interested in contributing in some way. I have no specific parameters to the kind of help I need as all of it is welcome at this stage. But what would be great for me is to hear from people whom have had similar experiences to myself. Stories and insight into how people cope/ adjust /reconfigure their lives . Or perhaps you are not doing too well and have questions that need answering. Maybe you've got through the worst of it and have a few choice morsels of advice that you wish you'd been told earlier.... Pretty much all and everything is welcome. But the general premise is how to live again. My hope for this project is that in the final analysis , someone who has just been told they have Diabetes can find this film and watch it and may rest a little easier and find their live again.

If you have any suggestions and would like to get involved please just inbox me.

Thanks,

JJ

#2

I was diagnosed at 23. They told me that it was too late for type 1. But then luckily my doctor did a C Peptide test on me. It was new back then. I was also in shock as a 23 year old I was never sick in my life. Active all the time. Then I had to adjust. I only tested once a day back then because the meters were too difficult to carry around.I also hated people seeing me test or knowing about my condition. I and my auto insurance dropped immediately and then they offered me the same coverage at triple the price. I think it took me 2 years just to accept it was for ever. Doctors always telling me that it was going to be cured in 5 years or less. I believed them back then.

Now I think I am on top of it. I have a pump and a CGM and things are good on the diabetes front. It is such a part of my life I just deal with it automatically. I can hardly remember life before. Forums like this have been a life saver for me to get tips and suggestions and moral support.

#3

I was DX'ed at 16 so maybe not ideal. I had a long time "off the ranch" sort of running my own show (literally as I had a good 5-10 year run of no doctor, due to the pharmacy doing a brilliant job of ramming refills past her staff while I wasn't seeing her, got "fired" and then found a new doc, sailed in and had an ok A1C...) and then, perhaps oddly, got into Tae Kwon Do and ended up seeing an A1C rise that pushed me, with some help from a friend, to get a pump. Unfortunately, I had to move and stopped martial arts and started running.

I'd be happy to help in some way. I did a Skype interview with someone in Denmark once for a project through Tu and will generally do any survey that I can, although as I explained in another thread, I'm somewhat leery of surveys about driving...

#4

JJ - You're not alone. I was diagnosed at 30. Luckily I was given a correct diagnosis as a Type 1 and started on insulin right away. During the last 29 years since diagnosis, a lot has happened in my life: my daughter was born, I got a good job with a major airline, moved, earned two degrees, got divorced, moved full-time aboard a sailboat, and got a low-blood sugar alert dog.

Diabetes has enforced a discipline on me that has not been all bad. Once I stopped and embraced my situation, I could get on with life. T1D is a very challenging condition that never ends. It's relentless. You must either squarely face it and deal with it over it will slowly and painfully be your demise. I've had a good run at controlling my blood sugar during the last year but only after receiving a diabetes complication diagnosis. I've experienced the best control in 29 years.

There is a ton of writing archived on this site. Maybe you start your research by doing some extended reading. There are many bright and interesting people here. And a few that have dropped off and faded away.

Good luck with your film project. It could turn out to be very therpeutic.

#5

Hi johnnyjones. I was diagnosed at the age of 63, I am now 82. I think your idea of making a film about dealing with Diabetes is a great idea; for once, it will all be real! I congratulate you for the steps you have taken to get your life back on track again. Trudy

#6

I was dx at age 37, I am 38 now, almost at my one year anniversary. I likely was type 1 (LADA) a bit before that as I was dx with gestational diabetes in both of my pregnancies, I didn't question it but is also didn't make a ton of sense either and Type 1 runs high in my family. I would say the last year has been a bit of roller coaster of emotions ranging from "why me?" to "this isn't so bad" to "will my kids end up with my crappy pancreas genes too" to "this could be way worse"...you get the gist, right now I am trying to focus on the positive. I am eating right, exercising and trying to enjoy life with the added burden of counting carbs, shooting insulin and pricking my finger all the live long day. My A1c is in the low 6 range and I feel pretty good. I def seem to go in phases of being totally upbeat and optimistic about the whole thing and then anxious and somewhat down about it. I assume this is fairly normal for anyone going thru a life changing dx...I think your idea is great! and I actually know 2 other people (in my real life, there are plenty here on this site) who were dx in their 30s, one being my cousin and another a friend of a friend. It isn't too uncommon I suppose. Good luck with your project!

#7

johnny, i was diagnosed at 36, 16 months ago. complete surprise and still trying to get my head round it. if i can help let me know!

#8

I don't know if I'd have much to contribute because my dx was so long ago now... 20 years on 4/14/13 when I was 23 years old. But reading your story really brought me back and, although I wish for you it wasn't that way, it was a little comforting for me to read because I have always felt (maybe been made to feel by those around me?) that I wallowed in it (and actually I have been getting a touch of that attitude lately, too, :( ).

When I was dx'd I spent 4 days in the hospital (though I wasn't in DKA or anything) and then was sent home with syringes and NPH. I clearly remember that morning shot, ugh. It was so nightmarish even though I was not afraid of needles or worried about the pain. It was just other worldly somehow, as was *everything* after I was dx'd. I felt like I was moving around in an entirely different world for about five months, and it was really scary and I always felt like one false move and god knows.

So during those first months, I ate exactly the same thing every day at the same times and would completely freak out if I couldn't make it work out that way. I tested like a crazy person. (I was uninsured and I would, seriously, buy my test strips from a dealer on the corner like they were crack or something. I don't know if they were stolen or if they were covered by his insurance or what. But I think that made me feel even more marginalized and freakish.) I was completely terrified of low blood sugars and would freak out if I had anything out of range.

About five months after my dx, I moved half way across the country with my boyfriend and went into some serious denial, which I was in and out of for many years. From my current vantage point, though, I'd say that denial was pretty necessary as I could not live with that level of anxiety.

#9

Hi Timothy, thank you so much for responding . When things develop with the film it would be great to get some words from you man . Stay happy bro :) JJ

#10

Hi Shawnmarie, cheers for the response - glad you like the idea. so nice to feel folks are interested in this thing. ;)

#11

Hey man, 5-10 years of no doctor.... Yikes on Bikes! seems this condition is such a different and personal thing. So many stories and experiences are out there. Yep! brilliant if you wanna help .. Skype is the way forward. thanks ;) JJ

#12

Hey Terry, thank you for responding. really inspiring to hear what you've done. I will certainly research on this site . I hope you can get involved in some way :)

#13

Hi Trudy, yep ... all real and from a diabetic point of view! Thanks :)

#14

Hey Kimmiejo, the more i hear the less i feel at odds with it . it's so good to connect with folks that 'get it' . My hope is that when the film is finished it will act as a big hug for newbies. :)

#15

Hi , yep, I'm with you on that ! it's definitely a strange journey . Yep you can help for sure. I'll keep this post posted with what is happening :)

#16

Wow! that is pretty much what i felt like for the first few months - regimented eating and all my energy spent on staying balanced! I equated it to sitting in a boat with a huge hole in it and having to constantly keep emptying the thing or i'd sink and die - No margin for error! That level of anxiety is an absolute killer! That is exactly the kind of fear that i hope to show is both normal and avoidable in this film. Be great if you wanna get involved :)

#17

Hi Sarah, Thank you for responding to this. I share a lot of what you feel. It's a strange sensation when you feel that a part of you is not allowing you to do something. The sense that you are at odds with yourself.... Where do you turn for help when it's you're own body that is preventing your natural need for free physical expression. The idea that you must pre-plan for spontaneity is something that has been the biggest killer for me personally. However, I have spoken to some really inspirational people that Have actually managed to incorporate this bizarre condition into their lives and don't feel fear at all....... Hmnnnn not quite there yet ! This is the stuff i want to investigate in the film ... :)

#18

Hi Johnny...we chatted one night awhile back and I related to a lot of your feelings. I am into my fourth year as an adult t1 and I do have to say that with time comes acceptance. I do miss some of my freedoms but it is also hard to remember life before diagnosis. My brain just works differently now. It calculates, analyzes and looks at food in a completely different manner now. I am not scared anymore. I don't like it...I won't lie...but I don't fear it any longer either. I have made peace with it in that I know we are partners for the rest of my life. I always have my diabetes radar up. In fact, in the last month, while I stayed with my father as he lay dying, I thought "I wonder what the stress of this will have on my blood sugars?" And for the most part they behaved quite well. I am protective of myself that way. I always think in the back of my mind during a stressful time..."I wonder what that is doing to my sugars and how can I keep my sugars in line." Anyhow, I try as hard as I can to keep my blood glucose in range but I don't beat myself up if they are out of range. I just adjust and move on try my best once again.

#19

I was diagnosed at the age of 29. Aside from the huge and obvious impact of dealing with a major health problem, my most immediate fear was facing potential financial ruin because of the diagnosis. I have a job for which I have to pass annual physicals, which are evaluated by a hugely dysfunctional beauracracy. I also had a half million dollar mortgage and a young family to support. The stress and uncertainty probably took, and may continue to take far more years off my life than diabetes ever will. Aside from that aspect I’ve dealt pretty well with the life changes that have come my way.

#20

anytime, we even have the same last name :)