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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. KateMeg

    KateMeg Type 1 · Member

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    This is such a good summary.
     
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  2. alaska

    alaska · Well-Known Member

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    Thanks Kate. Hope things are going ok with you.
     
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  3. kitedoc

    kitedoc Type 1 · Well-Known Member

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    Hi alaska, Is not going on an insulin pump the best answer? or are there problems doing so?
     
  4. Captain_Sensible

    Captain_Sensible Type 1 · Member

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    Having had Type 1 for 58 years now I can
    confidently say that living with it is purely a balancing act. I like it to walking along a ridge on a mountain top, where to the right of that ridge is high blood glucose, and to the left is low blood sugar. You just have to keep walking along the middle safe path. This has not always been the case with myself as I have frequently fallen down the low blood sugar trough and had really bad hypos as a result. That is when Type 1 diabetes can be a real hell ride. I fit really badly with low blood sugar and it has often been described as being similar to an epileptic fit. When I've come round I can remember very little as I drift in and out of consciousness during the hypo. Al this is very alarming to ones nearest and dearest. Because you've been given sugar or something sweet you then start to go super high and the peaking and troughing then starts which can last a day or two to get back in control. That's all irrespective of the migraine type headache you are left with after a severe hypo. My control I guess despite all this has been pretty good over the 58 years but you have to really work at it, by doing plenty of daily tests and watching what you eat + exercise. For the first 20 years of my diabetes - home blood tests were unheard of. We had to make do with urine tests (clinitest tablets in a test tube) which were not really accurate. I got my first blood tester in 1983. That was revolutionary for diabetics. I think the key is for not to let Type 1 rule you. You have to try and control it. Sometimes a very difficult task. It makes life a bit of a roller coaster and I wouldn't wish Type 1 on anybody. I would swap it for Type 2 any day of the week! :)
     
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  5. kitedoc

    kitedoc Type 1 · Well-Known Member

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    But much more experienced and able to put a doctor in his/her place for a blatant lack of knowledge, one would think ?
    I am 64, not pining about the Beatles song, but ready to gently question any guff. And in Australia it is almost par for the course to humour one's GP. After all GPs are generalists from womb to tomb one might say. I learn from them and visa versa. Any humour I can 'inject' into conversation with them that lifts their burden but also straightens them out about something is a given.
     
  6. kitedoc

    kitedoc Type 1 · Well-Known Member

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    Hi @ Captain_Sensible I applaud you from my perspective as a 51 yearer on insulin. As you might guess I use kite flying as a metaphor for balance. And a crash (hypo) is indeed a humbling. confusing and embarrassing experience and the see saw in BSLs that follows is a nightmare. I remember Clinitest and Testape, boiling up syringes and needles, rolling the syringes with Soluble and Isophane mixes. I met Stan Clarke, the expat Englishman who first made and sold glucose meters, in Sydney and was lucky to buy one of his 'mint' condition meters in 1980. (and have the scarred fingers to prove it) !! I have spent the last 7 1/2 years on an insulin pump which spared me from night hypos, 8 + insulin injections per day, enabled me to keep my driver's license and to complete employment through to retirement in 2014.
    One challenge my real astute endocrinologist has set me is how to make diabetes fun. The opposite is easy to answer but not this. Any suggestions from your experience would be gratefully accepted. Best Wishes from Australia, the sun burnt country!!
     
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  7. prancer53

    prancer53 Type 1 · Well-Known Member

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    I aim to spend as little time as possible with medics after 57 years with type 1......
     
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  8. prancer53

    prancer53 Type 1 · Well-Known Member

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    I've had type 1 for 57 years now but only realised the other day how much of a "normal" my life of diabetes has become when I espied some sugarless sweets in a market. I became quite excited about buying some and just casually eating them when I wanted.....then I thought "I don't really want these" I always buy favourite sweets for lows so don't feel disadvantaged even though their use is purely functional & I really (after nearly 60 years) no longer wish to just eat a sweet when I fancy one......it's become habit not to do so.......
     
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  9. prancer53

    prancer53 Type 1 · Well-Known Member

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    Not Captain Sensible but will I do? 57 years as a type 1 on insulin & I think the answer is 4 fold 1) be totally immersed in life and what you are doing, be ambitious and goal orientated 2) have a mindset which includes thinking of good diabetic management as a means of precious energy, mental & physical, which enables the achievement of 1)......so it becomes soley a means to an end. 3) As a female I am very aware that if I have high blood sugar I look absolutely awful facially & my stomach becomes huge------in other words be a tad vane..... it works wonders!!!! 4) Turn diabetes "instances"/ "events" eg someone giving you a filthy look when injecting OR during a meeting about diabetes, with the non diabetes afflicted also in attendance, into a game of "spot the diabetic" in your mind----very immature for an OAP, like me--- but can be great fun!!! In other words turn these "events"/ "instances" into jokes by looking at everything from a different perspective ---- be creative & turn all the petty annoyances re diabetes & it's somewhat endless management into jokes----it kind of puts everything into a positive perspective.....!!!!
     
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  10. prancer53

    prancer53 Type 1 · Well-Known Member

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    Can remember only 1 boy at primary school calling me weak because I had sugar in my blood (how on earth he knew or equated the 2 is beyond me)!!!! I told him I wasn't weak because I injected myself every day. His face turned somewhat puce, his eyes bulged and his face grew long. He then accused me of telling lies....I repeated what I had said while his rather strange look intensified then I turned round and walked away, hoping he didn't follow me (to tell the truth)!!!! Last of any nastiness from him or anyone else. The only thing I really abhorred was having to eat in class at 10 am & 2.30 pm to stop sugar going too low. Remember you have as much right as any bully to be on this planet. If someone is being unpleasant about diabetes they will probably have far worse problems than yours because people only do that sort of thing for a sense of power......they obviously don't get that from elsewhere, and to make themselves feel better than you!!!! I would self train that chip to deposit itself down the nearest drain, where it belongs, & let you live your life to the full. Here's wishing you well.....
     
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  11. prancer53

    prancer53 Type 1 · Well-Known Member

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    You do a lot. You are doing well, very well. I admire you, I am very aware of how difficult it sometimes becomes. We all have to go through the "do I need more carbs, more insulin" and so on several times a day, it is, unfortunately, part of life with diabetes but necessary to remain well & to be able to do all the things you need to/ want to. Personally it needs to be put into some sort of perspective like reminding yourself that it is a small price to pay to remain well, to have precious energy, to look after yourself, your 2 boys & husband, to work, to drive, to look good (in a previous post I whinged about high sugars making me look like the beast from hell and expanding my stomach so I look as though I am just about to give birth (no joke)!!!! Remind yourself of why you do all the things you do then let it pass, don't dwell on it. If it is a wrong decision you can self correct later. You work hard, do you treat yourself regularly ? (visit to a beautician, new clothes, new lippy, a good read, a meal out, a coffee out, a visit to the pub, dancing---even in the kitchen---whatever turns you on, we are all different....what is a treat for 1 person is absolute hell for another)!! All the very best xx
     
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  12. prancer53

    prancer53 Type 1 · Well-Known Member

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  13. kitedoc

    kitedoc Type 1 · Well-Known Member

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    Congratulations !! Occasionally my doctor will ask me what he is there for as everything is under control and I say, well, they will not let me drive without your say-so to which he replies, ah! at least I am not totally redundant !!
     
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  14. BrixtonType1

    BrixtonType1 Type 1 · Active Member

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    Great loved the read good video
     
  15. margarett89

    margarett89 Family member · Member

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    looking at my friend I can say that his main and the most difficult moment was to organize his life, change his lifestyle, physical activity, diet ... more frequent visits to the doctor. the beginning was very bad. he was depressed and unwell. With each subsequent month it was better. today he lives as normal ... but I still see that he suffers from illness
     
  16. Cam49

    Cam49 Type 1 · Newbie

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    I have been diabetic for 34 years since the age of 13. While I appreciate all the positive comments made in this forum and the reminiscing about previous treatments, am afraid that mine will not be in this vein.
    Personally I've just had enough.
    Changing the expectations , treatments and a lot of clueless medical professionals telling me that this is what I am doing wrong has me rather at the end of my tether. Following their guidelines to the letter and finding that my body will not adhere to what they say should happen leads to me being told that I must be doing something wrong.
    Hence I've had enough. Am honestly and completely lost. Apologies for being such a downer but it was either post here or scream into the ether which never looks good
     
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  17. Juicyj

    Juicyj Type 1 · Moderator
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    Hi Cam,

    Unfortunately alot of advice given by some of these professionals isn't relevant, you can't give advice in my book unless you've lived with this, therefore the best people to talk to about living with type 1 are those who have it. I learned within my first year of diagnosis and being told 'I had to do this to achieve that' and became incredibly disillusioned when it never worked. So over time and after becoming as knowledgeable as I could, have what I call a happy medium for me and if anyone ever tries to tell me otherwise I tell them to take a walk in my shoes,(admittedly it doesn't work all the time but don't tell anyone that..).
     
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  18. Moggely

    Moggely · Guest

    I really never knew how hard it is for type1's. I don't have it and hope you don't mind my joining in. It sounds so very complicated and i did ask about it somewhere else but never ever knew how very hard it must be. You guys are great and i'm not sure if i would ever have coped as you do. I'm recently diagnosed with type 2 and thought it all depressing but nothing compared with what you all are going through. Wishing you all the best each and everyone. Please i hope nobody writes back and says "we don't need pity" because it's not that i'm giving, it's admiration.
     
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  19. LooperCat

    LooperCat Type 1 · Well-Known Member

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    Thank you @Moggely - I’d never have thought I could cope with it either - and in fact for many of my 20 years with it, I haven’t very well - just done the bare minimum I needed to not die. But tbh I’m not sure I’d be able to cope with the restrictions T2 can place on people either - similarly a lot of people don’t. I suppose none of us ever know what we can handle until it’s placed before us. I think something has to click in the brain, and we all just then pull up our socks and get on with it. It’s a case of “get busy living, or get busy dying” scenario, I suppose.
     
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  20. static192

    static192 Type 1 · Well-Known Member

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    u doing really well mel iv had diabetes for some time most of my diabetic life my hba1cs were in 7s even when i was in 7s i developed autonomic neuropathy symptoms ED bladder neuropathy carnt tell if bladder is full stomach issues also gastroparesis like or is. and hypertension blood pressure in 140s is wierd how diabetes affects us all differntly also forgot to say i had aliver transplant before i was diabetic so not sure if this added and made me more prone to diabetes problems
     
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