Help – newly diagnosed type 1

Home Forums Help – newly diagnosed type 1

Viewing 28 reply threads
  • Author
    Posts
    • #5969
      Anonymous
      Inactive

      Love this site, first time I’ve smiled in 10 days after being diagnosed type 1.
      Has anyone else had bad blurred vision after being hypergycaemic before insulin…how long did it take before the blurred vision cleared??
      Any recommendations for a good counting carbs guide / and the best practical [but nice looking] kit bag (s) short of a suitcase. And logging software / anything else experience tells you is a help that you can buy or ask for on prescription??
      And will the urge to cry at every opportunity stop?! Buy Kleenex shares as their sales will have shot up recently!
      Any tips or help will be really appreciated!

    • #7344
      Hairy Gnome
      Participant

      @fiona – Hi, first, commiserations on joining the ranks of the pancreatically challenged, but if you wanted to find out the truth about your new life partner this is the best place to be!

      As I’m only the token insulin dependant T2 on here, I can only help you up to a point, though I’m fairly certain that most of the questions you ask are answered somewhere on this blog, the definitive answer will have to come from our Dear Leaders, Tim or Alison. The urge to cry will disappear, you’ll soon get so used to living with diabetes on a daily basis that you will only occasionally rail against the injustice of it all. I don’t know about the blurred vision, that was something I never suffered, but I’m sure someone will help. As a T2, I don’t count carbs, I just shoot up gallons of Lantus and Novo-Rapid, as a T1 though your diabetes is much more sensitive and balance is everything. There are spreadsheets to help you count carbs here https://www.shootuporputup.co.uk/groups/shoot-up/forum/topic/the-ultimate-logging-solution/ and usually your meter manufacturer will provide software, so there’s lots of help around. Just keep dropping in here to cheer yourself up. :)

    • #7346
      Tim
      Keymaster

      @fiona – Hello, welcome to Shoot Up and to the ranks of the pancreatically challenged.

      Don’t worry, I promise you it does get better. I was diagnosed five years ago (aged 28) and it was a huge shock to the system. I went into the doctor’s surgery feeling ropey and came out diabetic and started injections the next morning. Given I knew *nothing* about diabetes there was a lot to learn and get used to very quickly.

      However, I found that after about a fortnight I was feeling better. After about 6 months diabetes had become second nature and after a year I was really good at managing it pretty much all the time. So it does take time, but it’s certainly not the end of the world. Since diagnosis, I’ve got married, been promoted to Operations Director at work and done a tonne of other normal things. Life carries on! :-)

      Blurred vision is, I think, caused by high blood glucose. As I recall once you get your BG back under control and back to normal levels your vision should return back to normal. I don’t know how long it might take.

      There are a tonne of books which have guides to carbs out there. I got a pocket sized one and carried it about everywhere in my man bag so I could look up the carbs of whatever I was eating on the fly. After a while you’ll get better at just estimating the carb content of every meal and the effect it has on you.

      In terms of kit bags – desang.net do some nice ones. I, however, use a black pencil case from Paperchase that does the job nicely!

      Most blood glucose meters come with software for logging. Most of them are pretty similar – there’s not one I would particularly recommend. To be honest writing down results in a book takes quite a lot of beating for general convenience!

      Anyway, chin up – it *will* get easier and do feel free to ask any questions you like here in the forums. There are a tonne of people who’ve had diabetes for years and who are more than happy to pass on top tips!

    • #7347
      Anonymous
      Inactive

      @Fiona – Hi, I’ll add my welcome to the pack to the other two :)

      I don’t think I have much to add really, except another to the chorus of ‘It DOES get better!’. I’m at two and a half years myself, diagnosed just before my 21st (no, it wasn’t QUITE as alcohol fuelled as maybe you’d expect, but that’s more to do with me than the diabetes :P ).

      I think the only thing I can say is read, read, read til you think you know it all, then come on here and realise half of what you think you know is wrong ;) As I half internet diagnosed myself I read up a bit about it, and it really helped the shock factor for me when it was confirmed, and I personally found drowning myself in information really helped me get my head around it. You may well differ on that front, however!

      Oh, once other thing is to make sure you DO NOT stop doing stuff cause of diabetes! Although I know it’s wrong to say, but to help you ease in a little, don’t worry too much about getting your sugars under 100% control from the start – the control will come with practice, and making sure your not over stressing about it is (I found) far more important. Partly because stress levels affect your BGs!

      Good luck, and hope you’re feeling better about it all, if not already, then soon! :)

    • #7349
      Cecile
      Participant

      @fiona: As far (or near) as eyes go, I became myopic shortly after diagnosis – everything at the further end of rooms/open spaces went blurry…though some people become long-sighted and can’t see close-up things clearly (what are you?); anyhow, both the far&near dimness are transient (because of swollen lenses that eventually flatten out again)- mine lasted little more than 2 months. (But because I spent more than 11/2 year walking about with BGs of more than 20 prior to diagnosis, I ended up with binocular cataracts a year later – after removal & replacement of both lenses, things have cleared up nicely)

      Here’s some more home-grown tips for starters – I’ll only add that there’s also Calorie King if you’re really keen on counting carbs.

      And keep on Kleenexing: tissues are great for mopping up both tears and blood (though @alison might try to convince you to lick clean your fingertips, shameless vampire that she is :D)

    • #7350
      Anonymous
      Inactive

      What?! Kleenex to get rid of blood from pinpricks?! Suck it up! nomnomnom :P Adds that little extra spice to your meals, surely? :P

    • #7351
      Annette A
      Participant

      Welcome @Fiona. I’m a long termer(33 years T1),never had the hyper-problem,so cant comment on that. But I can just agree with the previous posts-it will get better,and it’ll be just another part of your life. Read all you can, but don’t believe all of it! And don’t stress over perfection until you’ve got your head around your own levels!
      And suck your fingers after tests-its good protein ;-)

    • #7355
      Tim
      Keymaster

      Yup – I agree with Rohan and Annette – blood sucking is the way forward, none of this tissue rot.

    • #7357
      Anonymous
      Inactive

      Hi Fiona

      It truely isn’t as bad as the doctors make out just be sensible (most of the time) enjoy your life and see it as a something that will actually benefit your health. All those lovely low GI foods, mountains of fruit and veg we all need and no sweets. (Except when hypo) You will be fitter than all your friends and you will find pretty quickly that injecting comes second nature well it has to really!

      Like Annette I’ve been p challenged since I was 9. I’ve been to Uni; abroad on holiday (although Alison can give you more help and tips there) I’ve got married and have three healthy children (two are twins). Life carries on occasionally I rant about how unfair diabetes is WHY ME ! but this is all normal. Just ask plenty of questions. Good luck.

      Yes I agree you have to blood suck. I’ve lost enough over the years.

    • #7367
      Anonymous
      Inactive

      Hi Fiona,

      I’m a 15 year veteran (diagnosed age 11) and you’ll get the hang of it… eventually. It’s a pain in the arse at times, but like the others I don’t feel like it has stopped me from doing anything (although sometimes you might have to plan more than you’re used to…)

      2 tips: smallish make-up bags are good for carting stuff around (I tend to just shove everything in a pocket in my handbag to be honest though- 2 insulin pens, a small meter in its own case and a handful of needles will usually see you right!)

      My favourite carb counting time saver is using Salter nutri-weigh kitchen scales (you can see them on amazon here: http://www.amazon.co.uk/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=salter+nutri+weigh+scales&x=0&y=0)- you stick your food on, type in the name and it works out the amount of carbs for you. And then you get used to estimating and barely use them!

      And always lick the finger!

    • #7374
      Anonymous
      Inactive

      Hi everyone, I’m new to T1 diabetes (4 weeks) and this site has been a joy to behold. Real life experiences of dealing with this disease, rather than the non diabetic, diabetic nurse’s opinion. Getting to grips with injecting (4 times daily – Novorapid & Insulatard). Still on the doses recommended by the DSN, I’m not brave enough to play around with them yet, try to regulate highs and lows with walking and jelly beans respectively. I’ve yet to see a dietician, will be interesting to see if I get any carb counting education…
      Fiona: My eyesight returned to normal after 3 weeks on Insulin, I went long sighted, so couldn’t read anything closer than 1 foot. At this stage my BG wasn’t even that good, averaged about 8 for the week prior to my sight returning. As others have posted here, getting into a routine and planning are the keys. I’m still trying to get used to it all, but I don’t see why my life can’t be nearly normal once I’ve mastered the carb / insulin stuff.

    • #7375
      Anonymous
      Inactive

      Hi Fiona and Chris!
      Lovely to meet you both and welcome to Shoot Up. It’s a great place to hang out and winge, laugh, cry, make up limericks, share stories and feel sqeamish or otherwise about the ;

    • #7376
      Annette A
      Participant

      Hi @chrisd, welcome. Normality is a state of mind – as far as I’m concerned, being diabetic is normal (for me). So my life is normal for me, and so will yours be (normal for you), in the fullness of time.

    • #7377
      Anonymous
      Inactive

      Well said Annette.

      @chrisd I wouldn’t alter your dose just yet until you feel comfortable and confident and make sure people are around you 24/7. You will, like the majority of us think nothing of altering your dose yourself after a few months but sometimes its better not to rush into changing things as your body has to re-balance itself eg your eyes from the excess sugar store you had. I find its amazing that often the docs get the dose just by using the old rules of thumb.

    • #7390
      Anonymous
      Inactive

      @katherine cromwell

      I’m not touching my recommended doses! Before I started on the Novorapid, I told her my BG levels, and she halved her original recommendation of 4u to 2u! I’ve had a few hypos (minor) since returning to work, could’ve been much worse without her knowledge.

    • #7406
      Anonymous
      Inactive

      Hello again, thanks to everyone for all the encouraging posts…. well except for the Twilight (saga but also could be zone) vampire blood sucking stuff which has now convinced me that you are all completely bonkers. Which is, of course, perfectly fine given that my mental stability and sense of humour have been suspect for years.
      It has been a totally surreal fortnight. My first hospital admission since birth, type 1 diagnosis…and this my first foray into blogging and making internet friends.
      I so now wish I had done medicine instead of law … so my dad was right all those years ago. Damn. I am now, as recommended, slurping up all the info I can ( see it doesn’t always have to be about blood) and trying to figure out my own insulin:food patterns.
      And I’ve bought the nutri-scales. :-) And a Desang bag which appeals greatly to my sad obsession to have everything organised. Even bought some nice little tins in Habitat which take a good amount of jelly babies in the handbag and look nice. The styling of the kit bags needs some serious attention tho- defintely a gap in the market for some funky cool but practical kit bags for the stylish pc. ( Saw the shameless plug for your wife’s (rather gorgeous I have to say) bags Tim….but no diabetic kit bag with lovely pen holders and pockets with poppers??)
      Determined to avoid a repeat of the hypo in Waitrose on a busy Friday … but top marks to them for niceness and great jellybaby dispensing as my hands went all weird and I had to sit down on the floor as the world just spun. I’ve had a few hypos so far so trying to figure out any patterns… which on paper shouldnt be happenning but the simplistic rules clearly ignore so many ;

    • #7408
      Anonymous
      Inactive

      Welcome @fiona and @chrisd! I’ve been “challenged” for 22 yrs now, and yes I’m bonkers and glad to have found Shoot Up a while ago (Tim, Alison and the gang are all fab and lifesavers in one way or another..)
      It does get better, but don’t worry if you don’t get the hang of it straight away – lots of help on here, and as for accepting it, I’ve only just recently mangaged that one! But I’ve battled through rebellious teenage years, anorexia, uni, IVF, pregnancy (& unexpectedly early child birth) and most recently a pump attachment – and I’m still alive!!! So whoo hoo! Welcome to the gang of blood suckers and bonkers comments – gotta keep smiling! ;-)

    • #7418
      Tim
      Keymaster

      @fiona – blood sucking may be bonkers perhaps, but it saves carting around loads of tissues! And it’s good for you. Probably. :-)

      I know how you feel about the suddenness of it all – I actually had to go and register with a GP when I had my diagnosis consultation. I just hadn’t needed to go to the doctor since I had moved to Scotland 7 years before!

      I think if you have a neatness obsession you’ll do well with diabetes! I think it requires a slightly OCD level of organisation to live with it easily. If you’re well organised you’ll always have a cache of sweeties nearby for hypos, if you have a kit bag you’ll always have your meter with you and spare supplies. These and other minor things make, for example, having a hypo when you’re out and about a minor inconvenience rather than a disaster. Organisation rocks!

      The lack of control will get better – I was diagnosed quite early in phase during which my beta cells were being killed off. So to start with my insulin needs were very modest; then a few more cells would die off and I would have readjust my food:insulin ratios and background lantus. This went on for months, during which I couldn’t get good control.

      However my GP reassured me that high BGs during the first few months wouldn’t cause any major long term damage; so I didn’t worry too much about the myriad cock-ups I went through after that!

    • #7421
      Anonymous
      Inactive

      I agree with @Tim entirely there – being super organised helps SO much! I have my on and off days with organisational skills – my control is noticeably better when I’ve had a few days where everything has gone well. Give me a day or two of getting up late or just not being totally with it and I’ve soon forgotten my pen and/or snacks for work, and am all over the place…

      Oddly also with the doctor factor, admittedly Uni had required me to sign up with a local GP when I moved into halls, but I hadn’t been to see a doctor for about 5 years previously (not counting a hospital visit or two for bike related accidents :P )

      I’m sure there’s been at least one other person saying they are generally otherwise healthy on here, maybe that’s the problem?! Our immune systems are just too damn good! ;)

      Oh, and @Fiona – You’re already better kitted out than me, so that’s probably a good sign! :)

    • #7424
      Tim
      Keymaster

      Hurrah! Someone agreed with me! :-D

    • #7428
      Anonymous
      Inactive

      PC and OCD-tastic then. Think getting vexed as filled out the first page of my log book messily and thinking how I will be judged about my messy entries and incoherent notes going a smidge too far even for me… so I’ll take the good advice from here (and Frankie for those few old enough to know and care)… Relax! (and eat a jellybaby)

      Off to read a textbook (whilst nibbling said jellybaby) just purchased from Amazon on the medical management of type 1 diabetes – read read read. [Quite good so far if you like that kind of thing?!!] I will find out (much) later as promised by many of you what generalised rot it probably is so far as my specifics are concerned!
      Best advice from medical professional so far- on treadmill start off trying @1 jellybaby per km.
      That is why I am reading textbooks.

    • #7430
      Anonymous
      Inactive

      Dammit, you’re making me want to read textbooks now :( I struggle enough with a weekly paper already though, and I haven’t touched my current book in a couple of weeks, so I really should resist… :(

    • #7431
      Anonymous
      Inactive

      Welcome both to life beyond a boring old pancreas….Only been diagnosed myself for just over 6 months and as Tim says things do get a lot better and easier to manage. Loving the “organised is good” from a few folks, that’s me out of the frame as I’m rubbish at that kind of stuff! I took the wimps way out when first diagnosed and went onto twice daily Novomix 30 which was the easy(?) option or so I thought, it works but daily readings are up and down a lot and the level of control just isnt there. After reading some blurb I’m using it 3 times a day and am starting to carb count to get a better handle on it. Seems to be working but I’m gonna get my finger out and go onto MDI’s as soon as poss. Mind you the 2 HbA1c’s I’ve done have been 6.5 and 6.2 so I’m in the ball park for now.

      Whatever happens just keep laughing about it as much as you can, my favourite game to cheer myself up is shooting up in random places to see if anybody comments (not yet boo). Formal dinners are great ‘cos you get to leg it using the “gotta inject” excuse when things get boring!(see there’s an advantage straight away.

      Keep smiling :)

    • #7437
      Alison
      Keymaster

      I’m starting to think I’m not needed round here any more. I’ve been away for a while and I come back to read the most friendly, sensible diabetes advice written by you lot.

      I have nothing to add except to say welcome and @Fiona I did law too and it was a much better choice, if you’d have done medicine you’d have an intimate knowledge of the theory but there’s a huge chance you’d be too terrified by the mountains of rare and not so rare complications you’d know about to actually put it into practice. Far better to do law and have the ability to assimilate the info, use it and mention that you have a law degree to intimidate the PCT when they’ve dragging their feet over pump funding ;-)

    • #7444
      Tim
      Keymaster

      @alison @fiona – I have a law degree too! Woo! It’s only use is to put “LLB” after my name in letters to PCTs. This has no effect and, I suspect, makes me look like a eejit. But hey hum.

    • #7445
      Tim
      Keymaster

      And @alison – of course you’re needed round here! :-D After all, I just make it up as I go along, you at least have a quarter of a century (!) of diabetes activism behind you! And a shit-load of those mugs your dad had made – which can only help…!

    • #7447
      Alison
      Keymaster

      @Tim so basically my role is to give your uneducated ramblings some credibility, I must add that to my CV :-)

    • #7450
      Anonymous
      Inactive

      @Tim Swinburn – You’re HbA1c’s are better than mine have EVER been! I have had a nurse tell me mine were bit low though, oddly. 7.5 I think it was, and she seemed to think I would be hypo all the time running that tight. Am going to be interested what my next ones are as I’ve been a lot all over the place recently…

      Also, I play your game too! It’s great! I got a comment by proxy at work today – someone told me people had been saying ‘that apprentice, he’s shooting up in the crew room!’ xD

    • #7451
      Annette A
      Participant

      Having a university email address helps when shouting at people (like PCTs). It makes them think you’re an academic and therefore ‘intelligent’. [Despite most academics being somewhat lacking in the common sense department. :-) ]

Viewing 28 reply threads
  • You must be logged in to reply to this topic.