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

[videoman]

Well after 56 years of a type1 diabetic , I get into such a routine I some times forget my injection which I soon remember so no problem .If you look after your self and do not over eat drink you can last a long time as I have with more years to come?

 

[donnieboy]

I'm a T1 for 30 years and a new pumper. The pump has great advantages but some disadvantages as well. For one, the infusion set can become kinked. In my case, that meant a trip to the ED, and two days in the ICU (US). Plus I was not feeling very chipper in my DKA state. However, I have managed to keep a pretty good glucose control and regularly exercise playing racquetball and squash. I plan on playing for many more years.

My sister died of Multiple Sclerosis, my parents cancer, my grandparents Strokes. There are so many worse things to deal with. Diabetes is not fun but totally manageable if you take it seriously.

 

[Lynne C J]

Hi There
I am hoping that the fabulous community here will post replies on this thread about the subject in the title.
or possibly provide links to people's blogs on the subject , or even copy a link to an old topic that covers this area

this topic could then hopefully be something that could be shown to gather support from family members, it could be helpful to newly diagnosed families as well as families with a D peep going through issues at the present time.

thanks so much for reading and for posting if you are able.

all the best !!

Can I suggest diabetics contact the Independent Diabetes Trust or IDDT. I found this charity two years ago and for an annual donation they will send you a pack about T1 or T2 diabetes. I'm T1 for 39 years now and it was the best information I have ever been given on Diabetes . Their updates are also informative and topical.
I manage my diabetes with a good diet and lots of exercise. Running or walking outside is good for your body and your mental health as well as helping you to determine stress. Not saying living with diabetes is easy and some days are better than others but I've travelled all over the world (lucky me!), jumped off the Sky Tower in Auckland, climbed Sydney Harbour Bridge and so on. Diabetes isn't the end of your life unless you let it. Go out and enjoy your life but do lots of BG tests while you're doing it.

 

[kimlouise1502_]

Hi There
I am hoping that the fabulous community here will post replies on this thread about the subject in the title.
or possibly provide links to people's blogs on the subject , or even copy a link to an old topic that covers this area

this topic could then hopefully be something that could be shown to gather support from family members, it could be helpful to newly diagnosed families as well as families with a D peep going through issues at the present time.

thanks so

 

[Yug]

I’m replying to Magicfirefly not sure if I’m doing right. Anyway I liked what you had to say! I’ve been type1 since 1985 at 32 yrs old am now 66. I have found that ignorance is one of the biggest issue. I’m pretty quiet about my diabetes. I am very fortunate in that the only time I have hospitalized due to my diabetes was when I was diagnosed at the VA. Heres a syringe and Orange to practice with. I told them to keep the orange, what do I do.
I learned both at work ( paper mill ) and at home or friends, family, that because I’m on the ground flopping around or just laying there tying to talk and it’s not working that NO I don’t need an insulin shot. At my moms once working on her sink laying on the floor and went into low bd sugar ( I can’t feel my lows anymore) until I’m at 30 maybe 40. And I heard my brother saying his kit is here he needs a shot. Now granted we have our down moments but I know he wasn’t purposely trying to kill his big brother lol. Now at work one yr I had transferred to a department that had lunch breaks. And yes I worked most my 20 yrs there 8,10,12,14,16,hour days, swing or graveyard no breaks but we had time to eat. The one issue I had when I did have breaks, sitting in the lunch room still in the 80’s was this one guy told me to check my blood sugar in the bathroom. You can imagine how that went over!! It didn’t!! I told him that I would never go into bathroom to check my blood. Well that got union and foreman trying to come up with a solution. And that was to send me across the mill to a paper machine foreman friends office just to check my blood)) my work ethic didn’t allow me to take advantage. I’m 6’2” 190 my last A1c last week was 7.9. Which is good for me. I went checking my blood 5 to 10 times a day. Taking LANTUS and fast acting novo log as needed for many yrs to going to the Dexcom G5. For a yr? Then tried the 670 minimed pump best on the market. I was told. Tried it for close to 7 months and it was NOT for ME I hated it. I won’t get into why right now. I am now back on the Dexcom g6!!!! The newest version and I love it. I am very fortunate in that I pay for only my medications at a very very small co pay that to 10 month Vietnam tour. I will get into my reasons for my pump issues and reasons for my love the Dexcom g6

 

[Yug]

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

I tried the minimed 670 pump for close to 7 months, after around 8 months with the Dexcom G5 which I really liked. My drs felt that the low sugar problems I was having and not being able to fell my lows that the pump would help and was touted the newest technology for pumps. I was excited. About trying it. Maybe it’s my age 66 or you shouldn’t teach an old dog new tricks. Or I didn’t Wharton’s to think so hard to control my diabetes or maybe it was for me probably the most stressful time I have ever had with my diabetes. I wasn’t used to having something such as the tub stuck to my body so with the pump every 3 days you had to change the insulin in the pump, along with the tubes Sensor. Then every 7 days change transmitter. Alarms galore. I’m going to cut this short but my thoughts are that for young people it would be better for at 66 it is not what I wanted to deal with I’m retired from a paper mill and the type of work I did and changes from day to swing to graveyard and the shear physicalness of the job I wouldn’t have been able to use it. I love my Dexcom g6 and the insulin pens

 

[Ledzeptt]

Hi @Yug

Thanks for the interesting post. If you don’t mind talking about your war experience; how on Earth did you manage your diabetes under those conditions, with that stress?

 

[kitedoc]

Hi @Yug - in the end you chose what you can live with.
But can I just give you something to read about Lantus? see diabettech.com - Lantus: Lethal or Life Saviour?
I am 65 but been on a pump for a number of years.
Decom is currently too expensive for me and I do not believe the Libre is accurate enough.

The other thing to think about is diet - as I have said on other thread (or two)! - over 50 + years on insulin
no diet has really been satisfactory - until I took the plunge and went very low carb.

Now less hypers and hypos - I wish I had known about it before going on a pump even.
I read Dr Bernstein's 'Diabetes Solution' (I chose the e book for convenience).
The approx. 30 g carb diet is not for everyone (and 50% of protein is counted in the carb count)
but it is for me. His personal example of being on insulin for 75 years is pretty impressive too !!

If you wish to try low carb please read the book, discuss the diet with your doctor (as the carb amount is small the short-acting insulin doses need to be adjusted accordingly). And dietdoctor.com is useful in the early stages of starting such a diet !!

You have to be convinced that saturated fats and cholesterol do not matter, and they do not according to what I have read (see references below) but your doctor is less likely to be flexible - the refs should help though!!

Best Wishes whatever you decide to do !!

I suggest subscribing to zoeharcombe.com (she is Welsh nutritionist, independent of Big Food, Big Pharma, Government and any of their lobby groups - who has researched all the saturated fat and cholesterol literature and shown up the false statistics and misleading results plus debunked the fake news and misleading reports about low carb diet.)

Your doctor really needs to read her work to understand why low carb diet works and is worthwhile).

 

[Jantib]

Currently, life as a type 1 for me is scanning my arm with my Libre every half hour or so and taking a series of small injections (typically around 10 a day at present) through the day.

Injections and Libre scanning is the relatively easy part.

Needing to sometimes wait to eat until your sugar comes down so that you don't spike your sugar levels super-high from an already high level is one of the annoyances.

Having to make dozens of not easy decisions about how much to inject and when, what to eat, how and when. Taking into account a range of different factors every single can be mentally tiring some days.

Never being able to go much more than 500-yards without taking kit and glucose with you just in case your levels start dropping (or sometimes rising -depending how far you're going).

Having your emotions and ability to cope (physically and mentally) tied to your sugar levels. Low sugar levels making you slow and unable to cope with usual tasks that would be a doddle. High sugar levels making you irritable and/or lethargic plus can also initiate short term depressive symptoms. Both low and high sugar levels amplify emotions making it that bit harder to keep one's head together under some situations.

Having to delay or interrupt sex because of low blood sugar.

Urinary tract infections being more likely if sugar levels have been high for several hours or over a number of days -particularly if stressed at the same time.

Occasionally having to battle off feeling depressed about the risk of developing long-term complications if sugar levels having been high for longer than I'd like.

Mostly for me, type 1 diabetes is fine to deal with when control is good. But, when control goes a bit skewiff, the little persistent things can add up to the short term difficulties and that's when things get tough and you want to scream a bit inside or out.

Type 1 can amplify things. When life is tough, the type 1 makes everything that bit harder. However, perhaps the dealing with the tough stuff makes us a bit sunnier and brighter when the good times do happen?

Ed

 

[Lulu9101112]

Funny, I started a temporary job recently from work experience and I told the staff members I was type 1 diabetic at start of work experience. A year later my duty manager and line manager forgot.
(I don’t really mind as I’m aware of it myself, just random how they forgot, anyway it just shows diabeitics can be like any other normal person). My volunteering is aware but hardly notices it as well

On the safe side I also wear a medical alert bracelet (and it’s not a metal one) which says underneath.
(Name)
Type 1 diabeties, (my mums phone number)
If conscious: give sugar, if unconsious (call (emergency service number)

It just gives me a peace of mind and if something happens when I’m out, then someone would notice

 

[ert]

I'm still hoping they're wrong. It gets me through the day.

 

[adheco]

Have just moved into 70 years as a Type 1, diagnosed at the old Royal Free in Grays Inn Road in March 1950. Things were very different then and I am extremely grateful for all the help, advice, comfort and understanding I have received from the staff and others at the Royal Free over all those years. I am very aware of what I owe to others not least members of my family, and the obligation I have not to inflict my condition on others. Diabetes has a sociable aspect that is often ignored. I was told recently that a trip to and from the Royal Free by ambulance plus a couple of hours in A&E to treat a hypo costs around £4,000. Very sobering thought.

 

[Mike d]

Good heavens ... 4000 quid? I have an annual (Australian) subscription for $120 ... unlimited free rides

 

[michita]

I think it meant A&E hypo trip would cost £4K to the hospital or in cost but free for the patient ...

 

[Grant_Vicat]

I think it meant A&E hypo trip would cost £4K to the hospital or in cost but free for the patient ...

I'm sure it does, but I'm still trying to figure out how it costs that much for a couple of hours of nurses's fees, paramedics' fees, consultant's fees, use of ambulance plus fuel and glucose drip. Thirty years ago I was sitting in a tea break when one of the 12 male employees started a conversation on the justification of public money being used to support those who were "of no benefit to society". Needless to say he was rounded on and I sat there awkwardly pondering what I had cost the state since July 1959. It must have been easily six figures at that time. In 2013 I was on Valganciclovir for 6 months at the cost of £1,400 per month. I have been assured by those work colleagues and many others since that nobody should feel guilty as this is what the tax system and Welfare State were set up to accommodate. As was said at that discussion "Those who in your estimation do not benefit the state,still can bring great joy to their families and carers". You could argue @adheco that the likes of us keep people in jobs!

 

[Rylando88]

Good morning my beautiful friend! I hope that you are very well today!
You do know that I am going to write a whole thesis on this topic... I can visualize the full 150 pages dissertation project already...
Regards
Josephine

When you do this I’d love to read it!!! If possible! I’d be so interested! X

 

[Robinredbreast]

When you do this I’d love to read it!!! If possible! I’d be so interested! X

I would love to read it too @Bluemarinejosephine

 

[Robinredbreast]

Have just moved into 70 years as a Type 1, diagnosed at the old Royal Free in Grays Inn Road in March 1950. Things were very different then and I am extremely grateful for all the help, advice, comfort and understanding I have received from the staff and others at the Royal Free over all those years. I am very aware of what I owe to others not least members of my family, and the obligation I have not to inflict my condition on others. Diabetes has a sociable aspect that is often ignored. I was told recently that a trip to and from the Royal Free by ambulance plus a couple of hours in A&E to treat a hypo costs around £4,000. Very sobering thought.

70 years living with Type 1, wow that is incredible and with so many changes over the decades too, thank you for posting, I feel very humbled indeed X
Take care and be safe

 

[Steve Fisher]

I’m a type 1 diabetic, since 1961 who, has had 2 transplants of insulin cells and I’m 67 years young. When the Covid pandemic started some weeks ago I obviously shielded myself. I some how expected a letter from the Government confirming that I should shield myself. After the deadline date for issued letters I started to wonder who was responsible to ensure that I had been put forward by either my GP or the Transplant clinic / diabetes clinic I attend.

When I contacted my Transplant Clinic I was told to self refer myself ( implying that it was my responsibility ) os that’s what I did ! The reply from NHS England was a section cut out from the current legislation. This section basically said it was the the duty of 3 areas, these being My local council, My GP and my transplant/diabetic clinic. I informed my transplant team and attached the email NHS England sent me. Now some 4 and a bit weeks of self isolation I still await any sort of a letter even though I’m now told that all the transplant insulin cell patients had now been listed and sent to NHS England, but still I await. Is this what the NHS England think of other diabetics like me?

 

[rubypops]

Currently, life as a type 1 for me is scanning my arm with my Libre every half hour or so and taking a series of small injections (typically around 10 a day at present) through the day.

Injections and Libre scanning is the relatively easy part.

Needing to sometimes wait to eat until your sugar comes down so that you don't spike your sugar levels super-high from an already high level is one of the annoyances.

Having to make dozens of not easy decisions about how much to inject and when, what to eat, how and when. Taking into account a range of different factors every single can be mentally tiring some days.

Never being able to go much more than 500-yards without taking kit and glucose with you just in case your levels start dropping (or sometimes rising -depending how far you're going).

Having your emotions and ability to cope (physically and mentally) tied to your sugar levels. Low sugar levels making you slow and unable to cope with usual tasks that would be a doddle. High sugar levels making you irritable and/or lethargic plus can also initiate short term depressive symptoms. Both low and high sugar levels amplify emotions making it that bit harder to keep one's head together under some situations.

Having to delay or interrupt sex because of low blood sugar.

Urinary tract infections being more likely if sugar levels have been high for several hours or over a number of days -particularly if stressed at the same time.

Occasionally having to battle off feeling depressed about the risk of developing long-term complications if sugar levels having been high for longer than I'd like.

Mostly for me, type 1 diabetes is fine to deal with when control is good. But, when control goes a bit skewiff, the little persistent things can add up to the short term difficulties and that's when things get tough and you want to scream a bit inside or out.

Type 1 can amplify things. When life is tough, the type 1 makes everything that bit harder. However, perhaps the dealing with the tough stuff makes us a bit sunnier and brighter when the good times do happen?

Ed

Thank you for this post. I share all of these difficulties. Reassuring to know you're not alone in it!