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My T1D Journey

Discussion in 'Type 1 Diabetes' started by Timostags, May 9, 2019.

  1. Timostags

    Timostags · Well-Known Member

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    This is the first post I have made in several months, but I'm feeling abit stressed and fed up so thought just writing this down would help vent off some steam. It's long and I don't expect people to read it :)

    My diabetes journey so far....

    So I was diagnosed at 14 after reading an article in men's health aboput diabetes and realising I had pretty much every sympton they described. When first diagnosed I was put on Mixtard 30 and told how much to inject, when to eat and to avoid sugar at all costs! (carbohydates were fine as long as not high in sugar).
    Fast forward 5 years and at this time I took 70 units of lantus (single injection) a day and that was it! I didn't take any of the novorapid I was prescribed, I didn't EVER test my BG. The strange thing looking back at this time is I felt good, I rarely had hypo's, I didn't feel unwell from high BG and it was very stress free. I would avoid going to any diabetic appointments and this went on for years.

    Eventually I gave up and turned up for a diabetic revciew appointment. I was honest and told them how I dealt with my T1D, I remember the nurse taking blood for normal hba1c etc, and the consultanr coming in and whispering in her ear and then she took another blood sample. I asked the consultant what was said, why he asked for another sample and he said he needed another test to confirm it was T1D I had as he didn't think I would be able to live like this (my HBA1C was not good).

    I also remember speaking to a dietician at this appointment, who asked what do I normally eat for breakfast. I would have coco pops with sugar on top, I told her this expecting another telling off....She simply said "ok, thats fine as long as you take the novorapid for this." This was amasing to me, up until now the only rule I had been told was sugar is bad and should be avoided at all costs.

    Again fast forward X years and my regime is now 50 lantus once per day and my own unique way of calculating bolus.... and average meal I give 30 units, a small meal 20 units or large meal 40 units. Now I look back at this and think that is ALOT of insulin compared to what I take nowadays, but again I didn't get hypo's maybe 2 or 3 a YEAR! but I do remember frequently feeling unwell from high BG. I would test my BG infrequently generally only when I felt unwell or out of the norm.

    This carried on until probabily 9 months ago when I had 2 weeks of constant high BG. I went looking for help and found this forum. I learnt SO much in such a short amount of time, for examplke how much your liver influences your BG, my liver had never been spoken about to me in 16 years of T1D before people here though me and influenced me to go away and reaserch it myself. I saw so many people carb counting and adjusting dosages accurately, and this influence me to do the same. I heard about Libre so went out and bought one to try (loved it).

    Over a couple of months I had gone from maybe 8 BG tests a month to 1000's a day via Libre. I went from high, medium, or low dose of bolus to carb counting and dosing accuratley. I had several apps on my phone for recording BG, insulin doses, activity, carb caluculation etc.

    I think my Hba1c previous to this was 66, with the changes I was making Glimp was predicting my HBA1c would now be 48! I was so happy I would finally get a magic number I could be proud of.....

    But it wasn't all great, overloaded with information and a desire to get that magical NUMBER I was having lows, alot of lows 14+ a week. I suddenly felt so much pressure to control my BG at all times I was constantly stressed out. I realised back in the day when I made no effort at all diabetes was easy, now I am putting all of this effort in its become much harder, is this the cost of healthy BG!?!

    I reached out to my DSN for help, for this first time I realised I had alot knowledge about my diabetes and for the first time in a diabetes appointment I proberly know more than the professional I had gone to see, they agreed and asked for a more senior colleague to help. I was advised to ignore the Libre to taget my BG at 9-10 instead of 6 as I was targetting, this was due to the fact I couldn't tell I was hypo until I was below 2.5 (used to really fear hypos as I have had a couple of bad ones over the years but I have lost that fear now). I also signed up for DAFNE as I was told I could get the libre on prescriptyion once I had done the course. I stopped payying for the libre and went back to finger pricking but managed to keep to 6 - 10 tests a day.

    Last week was my first day of DAFNE I bought a libre a week before for the first time in almost 6 months. I was worried I would be in a group of newly diagnosed T1D's and would have to bite my tongue so I didn't empart my bad advise and experiences on them. Luckily there is a mix on the group including perople who have had T1D for 40+ years. I learnt something new...."Don't carb count baked beans as the high fibre means you can't break doewn the carbs into glucose" I have always taken insulin for beans (except the lantus only period) and cannot remember having hypoo's afterwards?!? I set my self 2 targets before the next session (tomorrow) 1. test the baked beans thing. 2.have a full 24 hour carb free fast to test my basal. My long term goal is to stop my BG yo-yo-ing as I feel my BG is always bouncing up and down, low to hyper etc and just want to levcel it out.

    I recorded my insulin, carbs etc. in the app on my phone as normal all week but remembered tonight that I was suppost to write them down in a food diary for DAFNE, so I pull all the records off my phone and jot the down in the book. Most of the week is the normal Yo-yo-ing. Thursday I had my fasting day.... still yo-yo-ing even without carbs or bolus, although interestingly the yo-yo seems to be in reverse (normally high as I wake up, this time low etc). The baked bean test was interesting, I definately need to take bolus for baked beans but could maybe do half the normal ratio (half dose). As I write all this down I get more and more fustrated, at the notes section at the end I write down my fustrations....

    It doesn't matter how much data I record, how much I look for patterns, how much advise I follow. I can't control my BG.

    This story was just me venting my feelings and just typing it all out has calmed me down and helps me see how far I have come on my daibetes journey. I also now realise only briefly mention why I am fustrated and what triggered me to venting steam, but I had chilled out by the time I got to that part :)
     
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  2. JAT1

    JAT1 Type 1 · Well-Known Member

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    Very interesting. I read the whole post :). I hope you continue to learn about your diabetes and learn to control your blood sugar (as much as can be done considering there are factors beyond our control). I had to reduce my carb intake significantly in order to do so while making sure that I was always taking the corresponding correct amount of fast-acting and long-lasting insulin.
     
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  3. PeterHud

    PeterHud Type 2 · Active Member

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    Wow what a journey .... You will get there and dont give up ..

    Baked beans is a interesting one as I eat these alot and I was counting them as normal and the DN said to halve what I was eating for insulin and works for me.

    It's a learning curve everyday ..... ☺️
     
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  4. becca59

    becca59 Type 1 · Well-Known Member

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    @Timostags A great read of your journey. Have to admit I laughed at the paragraph in which you questioned how trying to keep things under control makes it harder. So true!
    I found DAFNE a great experience. Loved the mix of people and learned a shed load. However, since wearing a Libre I found a lot of the theories about not bolusing for this and that, or the fact that eating a carb free meal will not need a bolus to be incorrect for me. I have also dropped a lot of carbs that I didn’t seem to be able to control, and always correct way before they say you should. If I don’t and the numbers become higher it is difficult to get them down. Having said all that, sometimes I throw caution to the wind and eat what I like, suffer the consequences and start again the next day. (Last nights Fish and chips being one of those!!)
    Well done for taking control, hard as it is. I am sure you will get there in the end and find a balance that suits you.
     
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  5. Tickledpinknot

    Tickledpinknot Other · Member

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    I hope you continue to learn what works best for you. I can’t offer any advice as my diabetes is steroid induced and spending the day in bed sipping water still records BG in the high 20s!
    Best wishes
     
  6. tim2000s

    tim2000s Type 1 · Expert
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    Yeesh. Baked beans come in tomato sauce with a load of sugar in it. By all means reduce the insulin, but I've always counted Baked Beans at face carb value without issues.
     
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  7. Antje77

    Antje77 LADA · Moderator
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    Very enlightening story! I've only been diagnosed for 2 1/2 years and have been very much on top of testing and adjusting. I've met a couple of T1's who couldn't understand why I thought that was necessary and I couldn't understand how you could have T1 and not test all the time, or at least before injecting. They tried to explain, I tried to understand but I just didn't get it.
    Your explanation of the different ways you've dealt with diabetes through your life is very clear, and now I understand what those T1's tried to explain. Thanks for that, I'm sure this knowledge will prove useful some time :)

    Good luck, hope you find the right balance for you in handling diabetes!
     
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  8. db89

    db89 Type 1 · Well-Known Member

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    I was told a similar thing at DAFNE for sweetcorn/corn on the cob last year (and not to bother with most vegetables). Tried it once and count them now.

    I suspect in some cases this sort of advice is given to help give a bit of leeway from avoiding lows by dropping up to a few units from meals.
     
  9. Timostags

    Timostags · Well-Known Member

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    I do look back and question HOW?! Now I suppose if you never do it you don't know any different
     
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  10. porl69

    porl69 Type 1 · Well-Known Member

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    Good read @Timostags. Good to see that you are on your way to getting the beast under control!
    Totally agree with the harder you try to control it the harder it becomes,.....sooo true that statement
    I did the DAFNE (DAFFYD here in Wales) a while ago and did find it VERY helpful, plus I needed to do it to get my pump! Never heard that about baked beans before.....I have always counted them as face value :)
     
  11. Deleted Account

    Deleted Account · Guest

    I now picture a plate of toast covered in little baked beans with cute faces staring at me. It's hard for a vegetarian :)

    But being serious for a minute, the baked bean topic seems to have dripped onto another thread. As I mentioned there, when I did the local DAFNE equivalent (F4L ... Freedom for Life), we were told some people do not absorb the carbs from pulses such as lentils and chickpeas and the only way to know if you are a pulsey carb absorber or not is to test your BG before and after. I wonder if the current baked bean philosophy is related to that.

    As for bolusing for vegetables or not, that was explained with respect to basal-bolus injections. Long acting insulins such as Lantus, assume our body needs the same amount of background insulin 24 hours a day. As those of us with pumps (or wanting pumps) know, this is not the case: typically we need more insulin at night when we are not doing as much and calculate our basal dose to keep our BG steady overnight. As a result, during the day, we have some "spare" basal insulin which needs "mopping up". We do this with snacks of up to 10g (or sometimes 15g) between meals and ignoring the carbs in vegetables for bolusing.

    I have probably over-simplified a message that was already simplified on the course, but, hopefully, you get my meaning ... and don't get freaked out by the little philosophical faces on your bakes beans next time you open a tin.
     
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