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

Discussion in 'Type 1 Diabetes' started by himtoo, Jun 29, 2016.

  1. TonyKelpie

    TonyKelpie · Newbie

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    A few points
    Testing on the side of the thumb is less painful than fingers; especially finger tips
    I never test anywhere else and don't find it too painful.
    The 4 and 7 targets if I recall correctly are carried forward from old guidelines about pre meal testing; post food readings are often higher; diagnostic criteria for diabetes include post meal level of greater than 11, on more than one occasion.
    It is more relevant to pay attention to HbA1c readings, which reflect average blood glucose levels over previous 12 weeks.
    If you ask your professional advisers for suggestions re post meal target levels you might find that helpful.

    Best wishes to all
     
  2. CarbsRok

    CarbsRok Type 1 · Well-Known Member

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    I must be the walking dead then as having diabetes has not stopped me from doing anything I have ever wanted to do. :) I've had type 1 for over 50 years now and am still fully active with no complications. Yes you need to think ahead sometimes to make sure you have hypo treatment etc with you but this should not stop you enjoying life to the full. Life can be a b*tch especially when diagnosed as a teenager ((((((((((((hugs))))))))))

    Someone once told me life is what you make it. So worth while pondering on that thought.
     
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  3. Jacquelineann

    Jacquelineann Type 1 · Well-Known Member

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    Your posting has had 8 likes, 1 share and my son has sent me to message to say he read it and he is so proud of me for what we go through!! Oh and someone said how awful it must be for her dog who has diabetes and whose daily BS readings she posts on Facebook!! I have my own ideas of what should happen to the poor little fella if he is blind, cannot eat what he wants, has to fast before the vets, have injections daily, needles stuck in him.....can't be much of a life. Seriously it must have taken you ages to write and well done for raising awareness. The most I have ever shared is about a neighbour (type 1) who was unconscious and the other neighbour was rushed around to ours sceraming "He's diabetic, we'd better ´give him a shot of something´!" I posted that please, if I am ever found unconscious (and I have been) to leave my insulin alone, get some sugar into me and call an ambulance!!
     
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  4. isjoberg

    isjoberg Type 1 · Well-Known Member

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    My friend mentioned this the other day and put it quite well I think "you know that feeling you have when you think you've forgotten to do something and are racking your brains to think what it might be - all day every day to figure out whats happening, why and how"
     
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  5. msamson

    msamson Type 1 · Member

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    I've had type 1 for just over 51 yrs, my mother -43 yrs, daughter-21yrs, son-13yrs, sister-3yrs 2 cousins- 30 & 40yrs & cne of their sons about 5yrs. I also have an uncle with type 2. I haven't always been a model diabetic. In the past I've drunk (not to excess), smoked, been to all night parties, played football, cricket and other sports. I've travelled to various countries for holidays. My tip is try not let diabetes rule your life. If you can, attend a DAFNE course. It was one of the best things I have ever done to help with my diabetes. My Hba1c is between 40 & 45.
     
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  6. happier than you

    happier than you Type 1 · Well-Known Member

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    It's a bit like being made to sit through endless repeats of Heartbeat.
     
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  7. lverhelst

    lverhelst Type 1 · Newbie

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    I got asked so many times what is like to live with diabetes I ended up writing a book!
    With no pump and no continuous glucose monitor, they simply weren't invented when I was diagnosed, I had to manage it old-school style. Being trained as a scientist I documented all my failures and successes, thankfully more success than failure.
     
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    #107 lverhelst, Oct 14, 2016 at 3:30 AM
    Last edited by a moderator: Oct 14, 2016
  8. Silas

    Silas Type 1 · Member

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    Hi Snapsy,
    As I read about your daily tightrope walking, I recognised so many parallels with my own experience. I was quite heartened that there are other people out there with similar objectives (between those two lines) and the determination to always try and be in control. Thank you for sharing your thoughts.

    I have had Type 1 diabetes a little longer than you. I was diagnosed in March 1975. Trying to control diabetes in those days was crude, to say the least, compared with the technology we have today. It can only get better, given the number of people with our affliction.

    I was on a research trial recently and tried the Dexcom G4, Libre FreeStyle and the Dexcom G5 CGM systems.
    I dearly hope that one day soon these will be available to all Type 1 diabetics on the NHS. I believe it will save money in the long term and help focus the patient on their own responsibilities for their care. The results of the trial have been an eye opener. There is a "But..." I think one can end up being too proactive and create bigger than normal waves by excessive reactions.

    Once the technology has been perfected, we will be very close to an artificial pancreas, where the Blood Glucose Measurement is virtually real time and an algorithm in a pump can adjust one's dose to ensure we stay between those two lines.

    Then we will be freed from the huge burden of having to make all those estimates, calculations and corrections. There is of course the downside that technology "dumbs people down" and they will stop thinking about how much they are eating and that the algorithm will do its best to balance the books, even at the expense of possible weight gain.

    You can't write an algorithm for "responsibility".

    Ultimately we are responsible for our own health. Anything that helps us make well informed decisions and assists in the management of the diabetic condition is a wonderful bonus.

    Howard
     
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  9. tim2000s

    tim2000s Type 1 · Expert
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    I think the artificial pancreas algorithms are already here and can already do the job of handling food, based on my experience of using them. The far bigger issue is the insulins we have to use with them, that can't react fast enough, but even that's changing. Living with type 1 diabetes is going to get easier.
     
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  10. Cleggsta

    Cleggsta Type 1 · Member

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    Yep Daphne is the way to go luckily I work for a company that gave me the time off with pay, it also helps that the bosses son is type 1 like me ..
     
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  11. bethjade

    bethjade Type 1 · Newbie

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    I am currently a third year student nurse obviously training to be an adult nurse. Last year I was diagnosed with type 1 diabetes after a HCA checked my sugar levels and they were through the roof !! I ended up in A&E on a sliding scale opposite patients that I cared for on a daily basis. It was the most scariest point of my life and I still cannot really comprehend the reality of which type 1 entails. I am fortunate enough to have experienced the effects of diabetes and that drives me to take control of my levels and maintain a good grasp on this illness. Training to be a nurse takes its strain on my diabetes control, it interferes with every aspect of my life which I'm sure everyone else on this forum can sympathise with but at the end of the day we are strong people and if we can deal with diabetes we can deal with anything :)
     
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  12. Stephen89

    Stephen89 Type 1 · Member

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    Here Is My Honest Opinion

    I've been Type One Diabetic since I was 3 (24 Years) Its been more of a Roller Coaster than an easy ride, I'm Not the best controlled or even considered a "Good Diabetic" I go for weeks being controlled and sticking to the book but the rest I spend sticking it to the man, I have Never ever missed an injection or Blood Test But my own issues lie solely with me being Lazy and "Giving up on myself and my health" << Bad, I Know!!

    Recently (8 years ago Ha.) I was also diagnosed with Epilepsy Also.

    I Began my Journey on 4 Potatoes, Spoonful of Carrots and Small Slice of this and that, Having to wear a "I Am Diabetic" Badge at school all day long and taken from class to go and fix my sugars, Mind you things haven't changed much today as the boss requires an email if I need to go and fix myself, Only thing that's missing is that badge Ha.
    I enjoy playing football, always have and always will, Growing up was some what difficult with not only the football gear in the bag, but the BG Metre and bottle of lucozade and crisps Etc. Some of the team used to look at me funny (So would I) But after explaining they understood, It was more the times of being out young with friends kicking around the streets and park's and having to leave the fun to go do a test or eat a meal, But again I was getting used to all this after time.

    High school again was no different, I had the badge and half of the kitchen in the bag going between classes. The older I got the lighter the bag got, when it was lucozade tablets and smaller bottles of juice.

    I guess my quick story is the same as most people on here starting out young and having to go through bad times But life itself is not very easy and neither is the road ahead, But all you need is that one person behind you giving you a shove in the right direction, for me its my wife, who picks me back up and dusts me off every now and again.

    Anyway this may be a pointless read or a not so bad one, who knows :)
     
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  13. spaceman

    spaceman Type 1 · Well-Known Member

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    well im a type 1 diabetic , in my case , I was living with my partner and visited his family for a weekend break, I told them I was a diabetic , there have 8 grand children all who seemed to know what diabetes was, and didn't mind when I used to inject in the house.. what I used to do to break the ice, I took a blood BG test on most of them showing there readings on my meter. what I couldn't understand a child aged 7 said to me how long you had diabetes possibly his gran or a member of his family or school friend had it ? he wasn't frightened in any way.
     
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  14. himtoo

    himtoo Type 1 · Well-Known Member
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    Hey @Stephen89
    your post so completely grabbed my heart -- I am sitting here welling up as I write it -- I too loved football and carried round a kit bag rammed with extra's just in case. I often just went to the side of the pitch for a quick carton of orange juice to get me to half time.( hope fully I don't think we ever conceded a goal while I was having my lark on the touchline :D.

    I am glad you have a rock ( in your wife ) -- I have one too -- she is brilliant !!
     
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  15. jonbvn

    jonbvn Type 2 · Well-Known Member

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    Stephen,

    Quite an inspiring post. I think your story fits into the category of what doesn't kill you makes you stronger.
     
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  16. SusieJP15

    SusieJP15 Type 1 · Newbie

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    I was diagnosed when I was 16. I had just started my A levels, and just started an exciting period of my life.
    Saying that diabetes then ruined that part of my life is an understatement!
    I had 1 good year of sugars, and then it all went wrong. I decided that I didn't have the illness anymore, that I was just like all of my other friends and I could drink and eat like they did. No-one I knew had Diabetes, therefore everyone I knew said it was my fault. "You eat too many sweets, thats why you got it" was the most common comment.

    7 years later, I have now come to the conclusion that I cannot live like that anymore.
    I kept making excuses as to why I wasn't focusing my life on diabetes - because let's be honest, it is your entire life.
    I have had a rough few years with my parent splitting up, my grandfather dying and then the worst - my mum took her own life. All of these life events have let me think I could just put the illness off for a while whilst I sort my head out. My family wouldn't notice that I wasn't doing my sugars right as they concentrated on me not having a breakdown myself - so I got away with it.

    This year I have moved out of my dad's, I live next door to my best friend and colleague and I have turned my life around - and with that, I am trying to turn my diabetes around.
    I bought the Freestyle Libre and have used it for a few months now. Although I am still not perfect at doing my sugars, I do my best. Weekends are my downfall - there are still a few were I don't test my sugar even once.
    It's not because I cant be bothered or anything - mainly I forget! And when I do remember I actually then avoid testing as I feel guilty. I know it will be high and I cant face it. I just think I will wake up the next day and do it right. Avoidance!
    Today I had my 3 month check up and my doctor has finally convinced me to go on the pump.
    Using the Freestyle Libre has confirmed that I have Dawn Phenomenon - which pi**es me off even more.
    Even when I do my sugars and testing perfectly - and go to bed on a 7 - I will wake up on a 20. No matter what.
    That is the most frustrating part - I am trying - I really am, but it doesn't matter because my body will just shove my sugar high again. Hopefully a pump will sort this out.

    I am learning now that although diabetes has caused some major issues in my life - I absolutely refuse to carry on letting it be a reason when I get down. Lord knows I have better reasons to feel **** some days - just like most people - but I have control over this.
    Today is the start on a new chapter in my life now that I am going to work to get a pump!
    Fingers crossed!
    XOXO
     
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  17. Snapsy

    Snapsy Type 1 · Well-Known Member

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    BRILLIANT!
    :happy::happy::happy:
     
  18. Brendon.Dean

    Brendon.Dean Type 1 · Well-Known Member

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    I was diagnosed with type 1 diabetes in early April of 2015; My whole life I struggled with food, not what I'm eating but more of feeling like I get nothing from it. Ever since I was little I remember after breakfast every single day, whether I ate 400 calories or 1400, I still didn't feel full, not the feeling that I was hungry but like I got zero energy from it and completely lethargic. I also randomly would experience severe cold sweats and shakes, it would happen a few times in a week and then would disappear for weeks.

    I remember one time before hockey having a big plate of whole wheat pasta, only to find I had no energy to skate when I hit the ice! I would constantly tell my doctor at checkups I don't feel right and the answer was always the same, have a snack of nuts between meals, eat small meals, etc.. Of course this never changed anything, I was having 6 small balanced meals a day since the time I was 16 till I finished playing hockey around 23; this changed nothing. I had blood samples taken once a year and my family physician would always say "nothing abnormal, you're a healthy young male". This was hella frustrating considering I ALWAYS felt off!

    So fast forward closer to my diagnosis, I had symptoms for 12+ months, predominantly fatigue and constant sensation to want to urinate but when in the bathroom couldn't. I would say around 4 months pre diagnoses I started to feel extreme symptoms such as thirst, falling asleep uncontrollably, zero energy, muscle spasms, and UTI's. Finally one day my dad who is a type 2 diabetic decided to check my sugar on his meter which read >30 mmol/L. He freaked out and I rushed to the hospital, where they did a blood test reading a BS of 46 mmol/L. That day being told I was a type 1 diabetic received an initial reaction of a blessing and sense of relief "Finally I know what has been going on with my body all this time, and there is a way to feel better now" I thought to myself. That feeling did not last long, and shortly after faded.

    It took a few weeks to get myself back to normal, I had a hard time balancing and running felt completely abnormal. I got right back into the gym, I felt a massive increase in my strength, I was eating food and feeling great and on top of the world for about 3 months, then I got sick. Everything changed that week, my sugars were high, I couldn't exercise properly I felt like a bag of ****. Following weeks I started to get low blood sugars randomly and at different times causing such a disruption in my routine, destroying my motivation to do anything. Then following was nagging injuries from hockey coming back up keeping me from doing any intense form of activity, my sugars regularly became higher and unpredictable more so.

    I consulted with my diabetic team at the hospital and decided to try the OMNI pod for 4 months or was it 5, I forget. This did nothing but further stress me out and failed to make my sugars any lower, I had to constantly change the formula ratio for how much insulin to carbs I needed, my basal rate, it would come off if I did play hockey or when climbing the latter at work. Overall it was a stressful experience which made me feel less normal which I despised. So, I decided to go back to the pen. At this point now I'm in a worked up frenzy, completely frustrated that things aren't working, constantly having to adapt, feeling like a slave to diabetes. Work became a complete nightmare and I became and anxiety case not knowing what was happening from day to day being unable to plan from hour to hour, my diabetes fell to the wayside and I felt like complete garbage for a good 3 months failing to sleep more than 3 hours a night 5 days a week. It got to the point I took a sickness leave this October trying to get a routine down and things back on track.

    So far I have been unsuccessful in doing so, finding the correct balance of exercise and intensity, not to much, not to little, doing it at the right time, knowing how my body reacts to this type of food and at this time of day, correcting my insulin dose according to the time of day and what I did, all of it seems impossible to deal with. My brain is so exhausted I can't even begin to list of all the stressors diabetes has brought to my life. Every minute of every day feels as if it has to be thought out and planned precisely, I do not enjoy life this way, I thrive off the unexpected yet as a type one fear that anything can happen for unknown reasons as my blood sugars have proved in the past. All of the things you stated @Snapsy is exactly how I feel! I needed to rant and let things out before I explode, I feel like nobody except for my girlfriend is understanding of my diabetes and expects me to just carry on as a normal person. I can barely get through a day just trying to survive, how am I supposed to function in society, work and live a normal life and not feel the symptoms of a high and low blood sugar.

    With all this said I haven't given up I'm still trying things, I've just downloaded an APP mysugr which is helping me log more advanced details throughout my day and I am testing between 10-14 times in a day to figure out whats going wrong and where and I am hopeful despite the frustration and anger diabetes brings to my well-being. There has to be an answer out there, something I'm missing and I am determined to figure it out! This is my experience with diabetes, thus far.
     
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  19. himtoo

    himtoo Type 1 · Well-Known Member
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    that is an awesome and very moving first post on the forum @Brendon.Dean
    welcome to the forum :)

    hopefully you will be able to tune in to the great bunch of peeps on the forum
    I truly wish you all the best in your D journey !!
     
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  20. Snapsy

    Snapsy Type 1 · Well-Known Member

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    What an incredible piece of writing @Brendon.Dean about what has been a very difficult experience. What really shines through though is your determination and grit - and these are both excellent tools for managing diabetes.

    I have no experience of what it is like to be diagnosed as an adult (I was 11) and it's inevitably been a whole load of challenges - but I wonder whether the hypos relatively soon after your diagnosis, and then the unpredictable hypers which started a while after, might be symptoms of the honeymoon period, and the honeymoon period ending, respectively? I don't remember my own 'stages' of diabetes, so I'm no the expert on honeymooning - but I'm sure someone else will be able to drop into this thread to offer some information?

    The reason I feel it's important to consider this factor is that your body is experiencing all of this unpredictability, and it would be so lovely if you could feel reassured that it will not always be like this.

    It's early days, @Brendon.Dean - and with all the testing, all the working out, all the thinking about it, I'd say you're doing everything right. There will always be unpredictability, problems with control, many, many ***? moments, but it will get easier. It will.

    When I started swimming a couple of years ago, I did sooooo much work to establish what goes on with my body pre, during and post exercise. I then did all the work again when I started on a pump last year. And then I started running - and again, I had to work it all out, with many trials and even more errors......

    It was a nightmare! It still is, actually - but my confidence is growing when it comes to exercising safely and learning how to avoid - or at least deal with - the knock-on effects. It's a hard slog - but it's just about worth it.

    You know what? I have no clue how the non-diabetic population manage to fill their time. So much of my time and energy and headspace is taken up with all this stuff!

    Keep going, @Brendon.Dean
    And welcome to the forum!

    :)
     
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