1. This site uses cookies. By continuing to use this site, you are agreeing to our use of cookies. Learn More.
  2. Get the Diabetes Forum App for your phone - available on iOS and Android.
    Dismiss Notice
  3. Guest, we'd love to know what you think about the forum! Take the Diabetes Forum Survey 2019 »
    Dismiss Notice
  4. Diabetes Forum should not be used in an emergency and does not replace your healthcare professional relationship. Posts can be seen by the public.
    Dismiss Notice
Dismiss Notice
Find support, ask questions and share your experiences. Join the community »

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

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

  1. JaneC

    JaneC Type 1 · Well-Known Member

    Messages:
    128
    Likes Received:
    69
    Trophy Points:
    88
    That’s such a nice post, thanks and appreciated.
     
    • Agree Agree x 1
  2. kelp84

    kelp84 · Well-Known Member

    Messages:
    47
    Likes Received:
    50
    Trophy Points:
    38
    Can! Honestly I know exactly how you feel :) it’s very frustrating isn’t it! The people on this forum are actually very knowledgeable I find them really helpful when trying to sort my own levels out
    ( which seems to be a never ending uphill battle lol ) but I’m not giving up :)

    X
     
    • Like Like x 3
  3. caa lada

    caa lada Type 1 · Newbie

    Messages:
    1
    Likes Received:
    0
    Trophy Points:
    21
    scanning my arm with my Libre every half hour or so and taking a series of small injections

    Hello Ed,

    It was great to read your post. I’ve officially had type1 for about a year, after a T2 misdiagnosis and then an all-too-brief official stint in LADA land.

    I’m very fortunate to have a much later life start with T1 at 63, and the misdiagnosis now feels like a gift because it kicked me into high gear, determined to reverse it. So I begin my T1 life stronger and fitter than I’ve ever been.

    I’ve also had some practice with developing the level of watchfulness required. Now I’m learning how to make decisions, which feels more like an art form than a science.

    I’ve been using a Libre which can at times be helpful, but much of the time proves widely at variance with my glucose meter. So it’s prompted more finger pricking not less. I’ve been low carb for some time and require small doses of novorapid, which I also try to take very small doses as needed, if needed, thru the day. My tiny joke: I’m mimicking a pump mimicking a pancreas. I’m also on a split dose of Lantus.

    My endocrinologist worried at the frequency of my Libre readings (“obsessive?”) but then again my last A1C was better than any other he’s seen. That stung a bit, but I’m learning how to convert everything into useful experience and information. He was seeing this as my permanent mode, not my starting point. I’m very much in experimental mode, trying this, trying that. So I’m watchful, and this allows me to feel freer.

    This is my first posting. Looking forward to participating. And thanks to you all!
     
    • Friendly Friendly x 1
  4. LooperCat

    LooperCat Type 1 · Well-Known Member

    Messages:
    4,509
    Likes Received:
    6,707
    Trophy Points:
    198
    Welcome, I did much the same thing after seeing via my Libre exactly what was going on (after running basically blind for two decades), and also ended up dribbling in tiny doses of Novorapid to pretended to be a pump pretending to be a pancreas! Up to 18 jabs a day, some days. My team thought that was going above and beyond the call of duty, so they gave me my first pump last month, and I just love it! Look forward to hearing more from you x
     
    • Like Like x 1
    #324 LooperCat, Sep 11, 2018 at 7:26 AM
    Last edited: Oct 4, 2018
  5. miahara

    miahara Type 2 · Well-Known Member

    Messages:
    787
    Likes Received:
    735
    Trophy Points:
    133
    Now, almost three years after being diagnosed T2, my GP has agreed to order GAD and c-peptide tests with my next HbA1c test as I convinced her that my symptoms (polyuria and significant weight loss) may well indicate T1 and according to local NHS protocols these ought to have been done at the time of diagnosis.

    So, in order to get ready for the news bad or good, and bad/good depends on how I look at it. Good if it solves my weight loss, though not so good if I have to adapt to a new and seemingly complicated regime and lots more stabbing and needles.
    I’ve been reading through most of this thread and I thank ALL who have contributed as I’ve gained a very good insight into life with T1 due to all the time and effort given to writing personal accounts.


    A question
    , and possibly may be the first of many – Does flash glucose monitoring reduce significantly the need for finger-prick tests?

    Dave
     
  6. LooperCat

    LooperCat Type 1 · Well-Known Member

    Messages:
    4,509
    Likes Received:
    6,707
    Trophy Points:
    198
    You still need to stab to drive (for now) - I don’t do it much otherwise, maybe once every couple of days first thing to make sure my MiaoMiao transmitter is calibrated.
     
    • Agree Agree x 1
  7. Irene Banting

    Irene Banting Type 1 · Member

    Messages:
    23
    Likes Received:
    13
    Trophy Points:
    23
    Hi, I have called myself Irene Banting to honour Banting who discovered insulin and the little research dog whose name was Irene. I remember being diagnosed , aged 11, in 1963. I was in hospital for 6 weeks. The nurses on the ward I was in at Ipswich Hospital clubbed together and bought me an insulin injector gun. Makes you feel old when your sister finds one exactly the same in an antique shop! I had a little container of steel needles wrapped in velvet, and each needle had a fine wire through it to keep the hole from getting blocked. Over the years I have progressed from once daily insulin to twice, and then four, then a pump in 1999 and more recently continuous glucose monitoring. I got my first glucose meter when I emigrated to Perth, WA in 1980. It had its own tiny suitcase which I still have. You had to put a huge drop of blood on the strip, time it, then wash the Blood off with a little bottle of water, then blot it with a tissue and then put it in the machine. It wasn't very accurate as it actually just measured depth of colour. It was called a reflectance meter. I went through many years with terrible control and an eating disorder, so I feel very fortunate to still be relatively well. There is recent research pointing to, I think,4 or 5 separate type one genotypes, one of which appear to have less microvascular complications and less frequent severe hypo's. This research was done in Perth and I was a participant. I suspect I might be in that genotype, as after 55 years I have no retinopathy, and have never had a hypo where I needed help from another person. I feel symptoms at a BGL of about 4- 4.2. I really think it must be so hard for people with hypo- unawareness. The worst things for me are the frustration of aiming for good BGL's, the fear of complications, and severely painful feet and legs for the last 20 years. This has led to me having to give up many of my pastimes like walking and dancing. Still I would rather have T1 than T2 any day.
     
    • Winner Winner x 4
    • Like Like x 1
  8. Irene Banting

    Irene Banting Type 1 · Member

    Messages:
    23
    Likes Received:
    13
    Trophy Points:
    23
    Hi Cam I really get what you are saying. Sometimes it all just seems too hard doesn't it. I remember a couple of years ago I went to a new GP. I told him I had had type one diabetes since I was a child and he said "Are you on insulin?" Thank goodness here in Australia we can choose our GP so you can guess I never went back to that one! One of the best quotes I ever heard about T1 was by a diabetes consultant who also had T1 himself. He said something along the lines of " If you consider that we are trying to copy what the normally functioning pancreas does, we are injecting the wrong insulin, in the wrong quantity, at the wrong time, in the wrong place. So ISN'T IT AMAZING THAT ANY OF US DO AS WELL AS WE DO?" So, Cam, you are amazing having this for 34 years and still here, still trying your best. I don't know if this will be of any interest to you, but 6 months ago I started a very low carbohydrate diet. This is pretty contraversial but may be worth a try. There is loads of stuff about it on YouTube, and I am not on Facebook but I expect you are? There is a support group on Facebook for people who are, or want to be, on a low carb diet. The group is called typeonegrit. Before doing this my HbA1 C wasn't too bad but I felt like you describe, with wild glucose fluctuations going up to the high teens and low 20's, and averaging a hypo a day. I was exhausted by it all. Now I have a mild hypo. maybe once every month or so, the depression and frustration and the 'diabetic foggy brain' as I call it have lifted, my HbA1 C is improving and my blood sugars are almost flat. Insulin requirements almost halved, and for the first time since diagnosis 55 years ago I actually think I know what it's like to feel normal. ( My friends might disagree with that one!) There are more and more diabetes endocrinologists, cardiologists, neurologists etc. advocating this approach. Oh, and another huge benefit is I am never hungry any more. And I was an absolute food addict. I am new to this site so I am not supposed to actually post links but there is a fantastic site with heaps of info about this called dietdoctor.
     
    • Like Like x 1
    • Winner Winner x 1
  9. kitedoc

    kitedoc Type 1 · Well-Known Member

    Messages:
    4,820
    Likes Received:
    3,353
    Trophy Points:
    198
    Thank you Irene for your story ( and your recognition of insulin's founder and brave subject) - boiling up needles and glass syringes, wrapping up insulin bottles, watching and waiting to see if complications appear or not, all bring back so many memories. It all makes one realise how much of a 'lottery' life really is.
    I imagine you have also been in receipt of a Kellion medal and well deserved!! I am sorry to hear of your feet and leg troubles and hope there is some way of at least ameliorating the pain and disability. ? Swimming, canoeing as activities maybe?
    Best Wishes for happy pumping and easier living :):):)
     
    • Like Like x 1
  10. Irene Banting

    Irene Banting Type 1 · Member

    Messages:
    23
    Likes Received:
    13
    Trophy Points:
    23
    Thanks! I have learned to live with the feet:- strangely enough, my sister has non-diabetic- neuropathy and her feet are worse than mine! Yes I have my Kellion. You too? And another memory just came to me of this boiler-thing we had in our kitchen to boil the syringes and needles in. And my older sisters feeling sorry for me and sucking the sugar- coating off pieces of chewing gum and giving me the bit inside
     
  11. kitedoc

    kitedoc Type 1 · Well-Known Member

    Messages:
    4,820
    Likes Received:
    3,353
    Trophy Points:
    198
    Yes, Irene, I have a Kellion from 2016. I recall an old aluminium pharmacy container with a basket inside for the needles and syringes fashioned from (clean)!! flyscreen wire and boiled up on the stove, then syringes and needle were transferred to a butter dish containing metho. I do hope there are ways to ease your feet trouble. Maybe a pain specialist will have some answers ??
    How wonderfully helpful and considerate your elder sister was! Occasionally I would have some cake, usually in relation to exercise to burn it off later, and my brothers would remove and eat the icing first.
     
  12. Irene Banting

    Irene Banting Type 1 · Member

    Messages:
    23
    Likes Received:
    13
    Trophy Points:
    23
    Thanks for your interest. I do appreciate it. Sadly I have been through just about everything. Insoles,(carrier bags full of failures) Evening Primrose oil, Lyrica, Tramadol, Imipramine, plus others I've forgotten, and a pain management clinic at a major teaching hospital. All they offered really,was increasing doses of Tramadol until,I was taking 600 mg a day, AND Lyrica. And was actually a walking zombie. I did some daily meditation and weaned myself off all these medications and now just live with it.
     
  13. Irene Banting

    Irene Banting Type 1 · Member

    Messages:
    23
    Likes Received:
    13
    Trophy Points:
    23
    OMG I don't believe I got the dog's name WRONG! What ever made me think it was Irene? Maybe the T1 has addled my brain of course her name was Marjorie! Oh well looks like I am stuck with calling myself Irene.
     
  14. kitedoc

    kitedoc Type 1 · Well-Known Member

    Messages:
    4,820
    Likes Received:
    3,353
    Trophy Points:
    198
    Hi @irene, I am sure there were many dogs used in the name of diabetes research. It is the thought that counts!!
     
    • Like Like x 1
  15. Lynne C J

    Lynne C J Type 1 · Well-Known Member

    Messages:
    77
    Likes Received:
    52
    Trophy Points:
    38
    You sound as if you're struggling a bit. I've been T1 for 38 years and it's not easy, you have to consider your BG all the time. I'm good with my diet, get it wrong eating out sometimes. Main thing for my sanity and health is exercise. I go running several times a week, only 3.5 miles usually, walk lots and do yoga and Pilates. I have a very supportive family who can spot hypos before I do sometimes, that helps. At the end of the day I was determined to live my life and travel a lot in spite of diabetes. Off to Australia on Monday, it will present some challenges but it's my Life and I'm mostly loving it! I'm also 71 so life is much better than the alternative!
     
    • Winner Winner x 2
    • Like Like x 1
  16. Sweetkey83

    Sweetkey83 Type 1 · Newbie

    Messages:
    1
    Likes Received:
    0
    Trophy Points:
    21

    Good morning @Irene Banting you sound like a true survivor, a word used quite a lot by dr Bernstein. Type one grit was set up by rd dikeman a good friend of Bernstein, they all use his approach, his diabetic university on YouTube is amazing. It’s what got me switched over to a low carb lifestyle. I’ve been following his approach for a year and half now. With nearly normal sugars around the clock. I had a really bad time when my dad past last year, it’s still getting me now but I’m getting help with that. My blood sugars have been massively effected by what was going on and started to get pains in my legs and feet, also my shoulders. I was given lyrica and some other neuro pain blockers that I never took as the side affects seemed to be worse than the problem I was trying to solve. I know dr Bernstein says that most neuropathy complications can be reversed on low carb with normal blood sugars, give it some more time, he says the pain may get worse as the nerves re grow but it is reversable in many cases. Have you tried a high dose of cbd? I find it very helpful with pain and general well being.

    All the best ;)
     
    #336 Sweetkey83, Nov 9, 2018 at 8:56 AM
    Last edited: Nov 9, 2018
  17. videoman

    videoman Type 1 · Well-Known Member

    Messages:
    170
    Likes Received:
    86
    Trophy Points:
    68
    After 56 years as a T! , not easy but I am still breathing and walking
     
    • Like Like x 1
    • Winner Winner x 1
  18. Irene Banting

    Irene Banting Type 1 · Member

    Messages:
    23
    Likes Received:
    13
    Trophy Points:
    23
    Thanks Sweetkey83. This site is amazing, everyone so kind and supportive. I have been doing very low carb for 6 months. Probably not quite Bernstein- level, but around 20 to 50 g a day. Like you say, my levels have been much better for most of the 6 months. It is very reassuring that you say that he says the neuropathy may get worse before it gets better, as my feet have inexplicably worsened in the last few weeks, so hopefully he's right and it will improve. Strangely enough my Specialist and my podiatrist think my problem is only slightly due to neuropathy, as I have been diagnosed as having only mild neuropathy. The other issues are that I have lost just about all the fat-padding on the soles of my feet, so I am virtually walking on bone. And I have plantar fasciitis too. You have inspired me to even greater efforts to normalise my BGL's further. So far, for the 6 months, I have kept them fairly flat, but at around 5 to 9-ish, so I will up my nasals now and try to lower them a bit more. I was on Facebook but left for various reasons. Do you know if there is any T1 grit support available off Facebook? If not I will rejoin.
    As far as CBD is concerned, I have certainly thought about it. What do you know about the legalities of it? And the cost? I am in Australia.
     
  19. SilasH

    SilasH · Newbie

    Messages:
    1
    Likes Received:
    0
    Trophy Points:
    1
    Having had Type 1 diabetes for 45 years, many people say to me that it must be easy to control by now. Well, it's not! Much of the way diabetes is treated has improved beyond recognition since I was first diagnosed.
    Insulin pens are brilliant compared with the old glass syringe I was given on day 1. Humalog and Lantus are a great combination for people who need to eat straight away but Humalog does not cope well with pasta because it is so slowly absorbed and Humalog acts so fast. I used to have to mix two animal insulins myself in the early days and lunch time was a critical to eat. You could not miss or delay a meal without paying a high price.

    Testing kit has advanced hugely. All I have in the early days was Clinistix for dipping in your wee. As soon as Blood Glucose meters came out I bought one and have used one ever since. I would be utterly lost without my Aviva Expert meter which calculates my Humalog dose by computing a corrective dose and allowing for my anticipated carbohydrate intake. You can also apply modifiers such as Illness or Stress or Exercise. I have this fine tuned to my lifestyle.

    I have tried the Libre Freestyle but find it too expensive for continuous use. My county limits who can get these on the NHS quite stringently. Loss of warning signs is not a qualifying reason, but I think it should be. It is the main reason I go out of bounds so often. Fortunately I am on a relatively low dose of insulin and am quite sensitive to the medication. A little exercise goes a very long way for me. I have tried the Dexcom 5 system which is (IMHO) superior and will alert you before you go too low. I look forward to the time when this is readily available.

    Despite all my self control and efforts there are days when for some unknown reason things go off the rails. I am pretty good at estimating my food intake after all these years. I do so wish all food labels had the same tabular format for the dietary analysis though.

    When things go awry and you have tried your hardest to stick to the diet and do everything right, it does get very frustrating. I do hate going to sleep when I am high because we spend roughly 1/3 of our lives asleep and this must have an adverse effect on one's HBA1C.

    For the casual observer, a diabetic looks just like any healthy person. I wish all health professionals were given a small, one-off, dose of Humalog to help them understand what a Hypo is like. I also wish there was a greater distinction between Types 1 and 2 because they are often confused but are very different conditions.

    I try very hard to do all the right things but Christmas is not a fun time for me. Too much idleness, too many temptations and too much food.

    Overall, I count my blessings. I am still a fit and healthy 66 year old. There is much research in progress which improves the lot of fellow diabetics like me. I have participated in some of this and will probably do so in the future. Somebody has to be the human guinea pig! I would recommend it to all readers.

    Silas
     
  20. Madmaureen

    Madmaureen Type 1 · Well-Known Member

    Messages:
    135
    Likes Received:
    112
    Trophy Points:
    63
    Wish I had your confidence Alaska!!
     
  • Meet the Community

    Find support, connect with others, ask questions and share your experiences with people with diabetes, their carers and family.

    Did you know: 7 out of 10 people improve their understanding of diabetes within 6 months of being a Diabetes Forum member. Get the Diabetes Forum App and stay connected on iOS and Android

    Grab the app!
  • Tweet with us

  • Like us on Facebook