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I hate Diabetes!

Discussion in 'Type 1 Diabetes' started by kelp84, Jul 19, 2011.

  1. kelp84

    kelp84 · Well-Known Member

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    Hi!

    I apologise now! As I realise this is intensely negative, but I really feel the need to vent, and have no other outlet, as don't like people feeling sorry for me so dont like to moan to family and friends! I think you guys will probably understand all of this!

    I run high all the time, I have been diabetic for about 17 years! Really wouldnt know it seeing as I am proper USELESS at it! Last Sat I went up to 36, which is so so high! I cannot control it! I test for ketones all the time on those sticks but none ever show up! I feel thirsty, dry mouthed, moody, tired, fed up haha! All I know because I am high! I have been advised not to chase my levels with insulin, which is what I used to do to stop myself flying around! So I have stopped and now I am just high all the time!

    I do so so many bloodtests, I am 26 and can barely feel my finger tips, (I think I have done 120 in the last 14 days!)

    I am not a negative person, and I realise that Diabetes is in my hands, and I can control it! I am going on a DAFNE course (thank god!) in Aug to try to get better at it, I am not ALWAYS high like this, it seems to go in fits and spurts, but it is as if I only manage to stay in a normal range when I concentrate 100% on it, eating at the same times, writing everything down blah blah then it is good! Soon as I take my eye off the ball it goes hectic again, is everyone who is in control really rigid with what they do? I thought you could still live a varied life with it?

    I dunno, guess I am feeling moany just because I am high (it tends to have that affect haha!!!!)

    I need to know what I am all the time, as I worry about going low in meetings, or when driving, or even when I am out with friends, I always start spouting rubbish when I am low, and everyone thinks I am a fool :) well least I think they do, and I get horrible sweat attacks and go all clammy which totally ruins my hair every time (vein I know but a pain nonetheless!) It always makes me late as I always seem to go low when I really could do with not going low- when I am in a rush!!

    I also used to have a really nice litte lennovo injections, which was perfect as it was small, it stopped working and they dont make them anymore so I have had to go back to the old style Novo pens! and I dont like them one bit!

    I always get symptoms which is a blessing ( and a curse at the moment as I am always suffering from one symptom or another ;-) )
    I am a very lucky girl, apart from my diabetes I am healthy, and to be honest I don't really have anything to moan about, I suppose I am just a little frustrated, and could really use some other peoples experiences, I don't have any diabetic friends, and feel like I could really use advice from people who understand all my melodramatic warblings!

    Thanks for listening :)
    xx
     
  2. sugar2

    sugar2 · Well-Known Member

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    Hi...well, there are not many around who reach T1 perfection...but a few get close. Alas, i am not one of them. From what you have said, teh DAFNE course is going to be a godsend to you. It is deesigned, so that you manage your diabetes, around your life, rather than teh other way around.

    to me, adn ths is only me, rather than ahealthcare professional, if you are testing 10 times a day..you are kind of doing most of teh hard work..I guess what you are not doing is taking action on those figures. Your Dr is right to tell you not to chase the high numbers...BUT, seriously, if you get to 36, I personally think that you really shuld take some insulin.

    I pay a lot of attention to my diabetes, I test and dose adjust all the time, and most ofteh time it works pretty well. Not perfect, but I am reasonably happy. It doesn't however, take over my life. I test, say 8 times a day, but I do someting with the numbers I see. This is what Dafne will teach you. Hang in there, after the course, and you get your head around carb counting it really does become automatic.
     
  3. noblehead

    noblehead Type 1 · Guru
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    Sounds like your having an awful time, hopefully when you enroll on the DAFNE course you will begin to understand your diabetes condition better and finally get on top of your fluctuating bg levels. DAFNE is excellent and you'll more than likely meet other people in a similar position to you, just remember to write a few things down which you may want answered before you attend, you can post these on the notice board and the consultant will answer them on the Doctors Question and Answers Session.

    Good luck!

    Nigel
     
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  4. AndyS

    AndyS Type 1 · Well-Known Member

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    Hi kelp,

    I know how you feel. I am having a bit of a blip right now, lukily for me not as bad as you (sorry), but I think I know the reasons and am working on it.
    It sounds like what you really need is to get a handle on what your different insulin requirements are. Everyone is different and everyone is different at different times of the day.
    For instance my insulin ratios are different depending on the time of day and then even then they can change depending on physical activity. You kind of need to keep a good grid of your insulin intake, food intake and BG so that you can actually see the patterns.

    That is kind of what DAFNE is all about. Teaching you how to recognise the patterns and work out what to do about them.
    Until you do go and do DAFNE perhaps this will help you make a start on the Carb counting: http://www.bdec-e-learning.com/
    I was only diagnosed a couple years ago but found this site and this forum to be an awesome help.

    You don't go into much detail and given how you must be feeling right now I don't think we could blame you. Maybe the problem is your basal insulin is not quite right, I know my levels were all over the shop before I got my basasl insulin pegged.

    What you may want to try doing initially is doing some Carb free meals at different times of the day. Then watch what your levels do. If they go up in the hours after the carb free meal then chances are you need more background insulin. Depending on what you are using for background insulin changes how you need to make changes. For Lantus you need to make a change and then give it 3 or 4 days (I used to go a week when I was on lantus) after the change for things to settle.
    Levemir you can see the changes almost straight away.

    It is a tricky thing to work out since you are trying to juggle several variables and you will always be advised to only change 1 thing at a time, good advice by the way.
    So don't beat yourself up or convince yourself that you are stupid or such. I work in a building for of PhD's and professors and when I have chatted to them about how I control my diabtes some of them really do struggle to get their heads around it.

    So take heart, you will get there. As you know it just isn't a quick fix. While you are getting things in order it may well help you to try and stick to a really strict timing regiment for your meal times. As long as you accurately count the carbs in the food you are still fairly free there.

    Good luck ;)

    /A
     
  5. Vikki2

    Vikki2 · Well-Known Member

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    Hi, I really feel for you.
    I hope you don't mind me replying to you especially as my situation is SO different to yours but I did just want to ask you one thing. Firstly, just to let you know that I am the parent of a 5 yr old with T1. I know this is very different to a 26yr old but I really wanted to reply to you as I know how it can eat you up when things go wrong and being a parent I have the added guilt trip as everytime something goes wrong I blame myself. We are right now in a very good place. She is very stable and has an excellent Hba1c of 6.4. It's not always been like this. When things were really bad, i.e. we had very little control & horrible highs & lows: I just kept questioning and questioning. I would not just accept the advice we were being offered because it just wasn't making any difference. In the end I made up my mind she needed a pump and I pushed & pushed (including a front page national paper article!) and made them give us one. Now, I'm not saying that the pump is the answer to your problems but what I am saying is that the regime that she was on was just not working & so i pushed for something else, this happened to be the pump. My question to you though is this: would it be possible for you to trial a CGM for a period of time? My daughter has a pump on the NHS and a CGM which we have had to self-fund but I know that some hospitals will put patients on a CGM for a few weeks if they have poor control (depends on your postcode of course :( ). We could not live without our CGM. If ever something knocks her levels (the weather/holiday excitement/growth spurt etc) then we can download the information from the CGM & can see excatly where things are going wrong. We then very quickly get back on track. Before, if things went wrong then it would take us an all-consuming month to get back on track. The Dexcom CGM we have tells us her BG levels every 5 mins. I haven't heard of any NHS board actually providing them permanently to people but like I said I have heard of people being given them for a certain period of time to try and get them more stable & to figure out what is going wrong.
    Going onto the pump and getting used to the CGM has taken a huge amount of work but now we are at a stage where diabetes doesn't rule our/my daughter's life/lives. We don't hate it, we all live with it and now that my daughter is on the right regime, mostly, it's not a bother.
    I hope you don't mind me, a mum, replying to you, but I wanted to let you know our experience and to let you know there was a time when we too hated diabetes but that there is light at the end of the tunnel.
    All the very best
    Vikki
    x
     
  6. Snodger

    Snodger · Well-Known Member

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    others have said really good things and I agree with them - but also just wanted to add, I've had it 21 years, so I know exactly what you mean, yes it can be sh*t on a stick, and I wish I could send you a hug.
     
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  7. Jgos

    Jgos Type 1 · Member

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    Not sure how this all works being new to the forum - but Vicki your comments ring a big bell with me. I use Navigator CGM but am looking to move to Dexcom, it has much better 7 day data. Just started on the OminPod so have two things on my arm. Finding it hard at times but I have stppoed the hypos in the mornings (very difficult on a trading floor !!) But would love to know about the overnight levels you are getting for your child ? It miay be different for older people like me (44).

    just to add - I hate being diabetic ! I get better with it from time to time - but basically hate it !!
     
  8. Vikki2

    Vikki2 · Well-Known Member

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    Hi Jgos
    We're getting on really well with the Dexcom. When looking at the different CGM's I chose the Dexcom as there was quite a bit of positive feedback on it through various forums and because I was told that it is the least painful insertion. My daughter doesn't complain about it all. You asked about night levels - on a good night (of which there are now thankfully many, thanks to the pump) she will stay pretty stable all night. When I check the graph in the morning it's pretty much a straight line which is great. She usually sits at around 6. Before the CGM I would've been too nervous to let her stay around 6. When you have a child who NEVER wakes up during a night time hypo, 5 or 6 is way too scary!
    We find that the directional arrows are always accurate and the BG levels are mostly accurate.
    Does this answer you question?
    All the best Vikki
     
  9. LittleSue

    LittleSue Type 1 · Well-Known Member

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    Hi Kelp

    I think DAFNE will help you a lot. I used to be told not to correct high readings ("you can't change what's already happened") and only to change the dose if a pattern of highs persisted for 3 days. In my case there was never a pattern anyway, very frustrating.

    Conversley, DAFNE teaches you to correct high readings pretty accurately yet you can still track where your bs would've been if you hadn't corrected and use that to calculate your dose adjustment. The damage of being high is limited by bringing it down promptly, rather than suffering days of highs before making changes.

    I was doubtful about DAFNE in case it tipped my random readings into complete meltdown - but I gave it a try and got far more freedom, better control than ever before and a huge improvement in quality of life. Better control eating what/when I liked on DAFNE than when I'd been boringly rigid about everything. It made hypos much milder. It also showed up things that hadn't been visible before, that I had a lot of variation in my insulin needs and am very sensitive to small dose changes (hence my imminent switch to a pump). Go for it!
     
  10. Jgos

    Jgos Type 1 · Member

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    Vikki

    Thanks for that - does the Dexcom show good time in picking up the hypo - ie not over shoot ? I have found that the Navigator has a trail time where the meter is late at picking up the trend and therefore when exercising I can take too much glup than needed ?

    Gos
     
  11. Jgos

    Jgos Type 1 · Member

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    Just a general question to everyone or anyone - I have three boys and am meant to be a responsible parent - but recently I really loath the whole diabetic thing. Just not fair, hard work and a pain in the backside. Its one of those lows I guess - just need to pull my socks up and get on with it ?

    Gos
     
  12. AndyS

    AndyS Type 1 · Well-Known Member

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    Hey Gos,

    I don't think it is anything specifically bad. I think we all have times when we just think "f*** it, I just can't take this **** anymore". I think it is the fact that there is no break whatsoever from this condition.
    With work, kids etc there is always some way in which you can take a brief break and catch your breath but with diabetes there is no such option.

    Best of luck and hope you manage to get back on track.

    /A
     
  13. LeonT

    LeonT · Member

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    Hey Kelp

    Geez, you sound like me a few months back! Dont despair - you will find the DAFNE course a Godsend, you really will. The flexibility that DAFNE allows will definitely suit your needs and you will feel much more in control than I'm sure you do with your current regime.
     
  14. noblehead

    noblehead Type 1 · Guru
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    Living with a life-long condition can be hard and there's no shame in feeling down from time to time, hope you feel better soon!

    Nigel
     
  15. emmaw_13

    emmaw_13 Type 1 · Active Member

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    hi im new to this site but not new to diabetes. Hav had it 11years when i was younger never had any problems soon as i hit 19 my sugars lost control havent been able to control them since. My sugars are constantly in late 20's early 30's despite giving corrections. (dafne) Have gone from injections to the pump and its so much easier. Have had DKA 3 times all ending in intensive care i even saw a 19 year old girl die (suspected suicide on novo rapid brain dead ) because she couldnt cope with the disease. I wouldnt wish it on my worst enemy i know some people dont have any problems what so ever (lucky them) you cant describe how you feel to anyone that hasent got the disease they dont understand having it 365 days a years 24 hours a day you never get a break. Im 24 and already have nerve damage in my legs and feet and possibly my hands which i have to take anti-depressants for. i do have my good days when i can control my sugars it dosent take much to knock it back up though must be very sensetive. I worry about the future if i have complications now dread to think what ill be like when i hit my 30's sorry its quite depressing just need to vent somehow : ( i know theres worse diseases like cancer and know theres someone always worse than yourself.
     
  16. Jgos

    Jgos Type 1 · Member

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    emmaw - dont lose it. I have the same about venting and its odd that others dont. There is so much on these sites of "doing well" - I am new to the forum thing - but also know that a rant is sometimes better than a "why me" moment ! To make you laugh, my brother, who a great artist, suggested a massage to solve the first hypo i ever had !! I am with you on the downside of things but laughing is a good therapy !PM me if you want.

    Gos
     
  17. emmaw_13

    emmaw_13 Type 1 · Active Member

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    thank you :D its nice to know im not the only one im not sure how to PM you? :| x (jgos)
     
  18. daisy1

    daisy1 Type 2 · Legend

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    Hi Emma,
    Here is how to send a PM
    Click on User Control Panel top left of screen under Board Index
    Click on Private Message
    Screen comes up for composing a message
    Type name (Jgos) in address box
    Text box below
    Submit when finished as with a post

    Like your avatar BTW :)
     
  19. emmaw_13

    emmaw_13 Type 1 · Active Member

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    haha thanks daisy1 quite simple then not very good with technology for aying how young i am. my avartar was from this site there was quite a few animal ones to pick from. i like your signature cat x
     
  20. SugarPlums

    SugarPlums Type 1 · Active Member

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    Think DAFNE puts some logic into the treatment of Diabetes. After 34 years of chasing insulin and other wacko advice, the last 3 years have'nt been too bad (ie NO crashing hypos). Certainly was a life changing experience I could have done without though.
     
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