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Is anyone else EXHAUSTED by this disease??

D

Debbie Downer

Newbie
Messages
1
Type of diabetes
Type 1
Treatment type
Insulin
I can barely keep my peepers open when writing this. It's a combo platter of the physical AND mental/psychological being tired. I was diagnosed with adult onset at age 45 almost 20 years, and many tears, ago. Being a bit of a luddite...no pump, no CGM, and still pricking fingers the old fashioned way. At this point I would gladly join a study to help with finding a cure so peeps in the future will be able to have fuller lives than mine!
 
Hi there Debbie and welcome to the forum. This is a great site with many knowledgeable members only too willing to answer questions. There is a LADA sub forum here for late onset Type 1’s with members who may well be able to relate to your physical and mental exhaustion. Feel free to take a look around the discussions in the sub-forums. Members have asked all sorts of questions. There is a search function in the top right hand corner.

I‘m going to tag @Antje77. She is late onset type 1 LADA.

Mel
 
Hi @Debbie Downer also diagnosed later in life 10 years ago and 65 this year. It came on very quickly. 24 hours in I was on basal bolus and carb counting with daily phone support from my DN. I cannot say it exhausts me but I do get frustrated with the daily grind of it. I also get tired more quickly but quite honestly I think that is the natural process of aging. I certainly take longer to recover from looking after my grandchildren than I did just 5 years ago.
I have not been a Luddite and embraced cgms early on. Did various trials via the hospital and paid for my own until I was NHS eligible. Though too well controlled for a pump.
That would be my suggestion to you. Embrace the technology, it is there to help us. Going forwards there will be closed loop. My consultant hopes to have all his patients on it eventually and even though I’m going towards my 70s I will not be saying no to something that may help with easier future care as I age. I wish to maintain a young mindset and keep up with all technology.
 
Hi @Debbie Downer and welcome.
Whilst i've had it since a small boy and now in my 50th year of it I find my control is better now than its ever been......

Why?

Freestyle libre.

As soon as i got one i analysed the data to the nth degree and with alarms telling me i'm too high or low i cannot tell you the joy i felt and still feel now.

The tiredness is understandable but last night was interesting.......

Home at 6 and had chicken salad with a jacket potato and an hour later i analysed my tech.
Libre showing 5.6 and step counter just over 14000 steps.
Jackets are funny things as they spike and drop within 4 hours (my body).

Weather up north is grim for the rest of the week but my lawn needed mowing and if i didn't do it last night it would be the weekend at best.

I'm tired at this point but had energy as my levels are bang on and the insulin is fighting the jacket potato.
The insulin will win as the jacket will only last 4 hours and the insulin 5.

I mowed the lawn and once i got going the tiredness left me and the evening went swimmingly.
I had a cheeky bottle of beer too just to lift my levels before bed.

Forgive the boring story but its the libre that lets me get about my business and the alarm goes off if necessary.

Keeping my levels level LOL gives me the energy i need and the tiredness comes and goes.

I hope this makes sense and add this is how i view my diabetes for my body as we are all unique.

I wish you well

Tony
 
Debbie Downer said:
I can barely keep my peepers open when writing this. It's a combo platter of the physical AND mental/psychological being tired. I was diagnosed with adult onset at age 45 almost 20 years, and many tears, ago. Being a bit of a luddite...no pump, no CGM, and still pricking fingers the old fashioned way. At this point I would gladly join a study to help with finding a cure so peeps in the future will be able to have fuller lives than mine!
Click to expand...
Hi,

Welcome to the forum.

I don’t pump but I do use a CGM.
I remember the days of pee testing regarding diabetes management?
CGM tech monitoring certainly contributes to getting me through what I do…
 
Hi @Debbie Downer,

Yep - its exhausting - can eat your life and make it very difficult to be around family and friends who don't understand.

Reached a point of exhaustion about 14-15 years ago and new I needed to change from my no-tech living to 'give it a go'

Worth considering options to help you stay in range more - helps with sleep and physical exhaustion and allows you to live rather than exist.

I love my Libre (continuous glucose monitor) for helping me feel better, love my pump as it replaces a missing body part (pancreas) and I'm the other end of the extreme now where I'd had enough of it so completely automated my pancreas with gadgets - don't do anything, when I eat - it sorts it out for me (Fully Closed Loop or artificial pancreas) - thats a hell of a lot of work and don't advocate that for people who don't want to study for a loooooong time to learn it - but I'm so much healthier and happier (and safer) with it, I love it.

Hope you can find a solution for you - keep an open mind to small changes - they will help you live rather than exist
 
Welcome @Debbie Downer
I think we must have been diagnosed around the same time - my diagnosis was in January 2004.
I too am a fan of using a CGM. However, these are not for everyone and can be especially challenging for people who experience anxiety related to their diabetes. So, don't feel this is the only way because everyone else has technology.
My concern from reading your message is around the impact diabetes is having on your mental health. This can feel as if you are stuck in a constant loop - high or constantly bouncing BG can affect your mental health and mental health issues can make it feel even harder to manage your diabetes which means my BG goes higher or bounces more which means ...
Have you attended a DAFNE course (or similar) recently? A refresher on BG management may help.
My other thought is asking for time with a councillor to talk through how you are feeling.

Doing the full time job of a major body organ is hard work but it doesn't have to be exhausting. I recommend asking your diabetes team for assistance.
 
I like many many others here have had diabetes for many many years , and in times when even blood sugar testing wasn’t available and list of foods you couldn’t eat, a bit like the old Bullseye program years ago with the “ and here’s what you could have one “ scenario, these days thank fully there is no list. technology being what it is these days makes life so much easier even the simpler things like smaller needles, anything that makes things easier needs to be embraced. My advice is to try and take small steps and try and overcome one issue at a time a CGM will definitely aid your bs control which in turn may improve your tiredness which in turn may make you feel more positive , and trying to stay positive is definitely the key. There are lots of people trying to find a cure and new technology is all a part of it
 
Could it be that your lethargy is unrelated to your diabetes ? my diabetes is quite well controlled but only a couple of months ago my doctor advised me to double my statin dose which I did for 2 weeks , tiredness , falling asleep in the afternoons ,generally feeling knackered I stopped the statins completely and within a week was feeling fine , yesterday I had a phone appointment with him and he's put me back on my original dose , not everything is diabetic related .
 
Hope you can find something to help you feel better. When I found out was wrong with me, at age 68.. I was thankful I didn’t have decades of dealing with needles and medication ahead of me.
I get the impression the medics here like newly diagnosed T1 ‘s to ‘serve their time‘ using finger pricks and MDI’s before prescribing CGM’s and pumps. I found the finger pricks painful ….and I knit…so finger tip damage is not a good idea.
I happily took up CGM use but so far have declined a pump, my excuse being…the more tech = the more things to go wrong! That might change for me though since my BS levels have been going up and so a pump might now be a good idea.
Can you justify to yourself why you don’t want to embrace any of the technology available?
I asked for and was prescribed some smart pens which help track my insulin doses. Though, cautionary tale, during the first week of having them I managed to mix them up and gave myself over double the dose of fast acting insulin one morning.. fixed it by chugging a few boxes of fruit juice and polishing off a large carton of fruit yoghurt! As too upset to eat the breakfast porrage I had just started eating before I realised what I had done. Now keep the 2 pens firmly part with a little woolly tag on the fast acting pen case!
I can understand that having a whole load of data available might be a bit overwhelming for some people. Maybe understanding your reluctance to make use of the tech would clarify things for you, also making a list of things you want to do and finding out what’s stopping you.
I was still teaching when I was diagnosed, though on school holidays and my boss offered me the chance to take some weeks off work. I declined as I needed to figure out how to cope with this condition and do what I felt I wanted to at the time, which was carry on teaching!
I find I cope better when I am travelling or doing something. Now I am retired it is very easy to let the diabetes and my BS levels rule the day, rather than the other way round.
Best wishes from sunny, this morning at least, Norway.
 
Hello @Debbie Downer It's a shock at any age, I was 38 and dealt with quite a hard year following the diagnosis, sinking into quite a deep depression, it took alot of effort from me to find my way out of it, I thought it would dissipate in time but it just got progressively worse, meditation got me out of the dark hole and from there I had to make some changes to ensure I didn't go backwards, one of the main points that helped me was taking ownership of my t1d and not relying on others, I found if I didn't take ownership that my t1 d would take over my life, so putting myself firmly in the driving seat of managing my ratio adjustments and then it was to self fund the Dexcom G6 so I knew what was going on and could manage the information I was getting from using it to my advantage, I found finger pricks were just giving me a snapshot of information but the CGM was telling me what was going on 24 hours a day, if levels were rising or falling and helping me to plan ahead and also to give me confidence, the finger pricks were ok but they didn't give me enough information to really work out what was going on through the night or if I was coming up for a hypo or hyper.

The one thing I can tell you is that despite what ever level of tech aptitude you have, the CGM is the easiest tech to grasp and will start to give you your life and confidence back, am sure I should be on commission but I cannot stress to another t1d how important this tool is in helping you to manage your condition more easily. Hope you have the confidence you need to ask for help from your team and at least trial a CGM to see how it can help you.
 
CGM has helped no end but yes, it's exhausting.

The CGM told me my blood sugars were spiking into the high teens overnight while I was asleep. So I'd go to bed on 7/8 and wake up on 7/8 and just feel shattered. Now I know this rise happens I'll take 1/2 unit before bed & it has really helped.

But yes, a lot more tired that I used to be
 
Debbie Downer said:
I can barely keep my peepers open when writing this. It's a combo platter of the physical AND mental/psychological being tired. I was diagnosed with adult onset at age 45 almost 20 years, and many tears, ago. Being a bit of a luddite...no pump, no CGM, and still pricking fingers the old fashioned way. At this point I would gladly join a study to help with finding a cure so peeps in the future will be able to have fuller lives than mine!
Click to expand...
HI @Debbie Downer, I am sorry that you feel exhausted. It may or may not be diabetes related.

Being luddite is ok. However, Libre CGM does not require much attention. You attach a new sensor every 14 days. Once you have a Libre on prescription, just contact Libre (UK telephone number is on the box) and ask for a Libre reader. You then will have a choice of using either a Libre reader, or a Libre app on a smart phone. When you lift the reader to the sensor on your arm, then the reader will show you the glucose reading. You will still need to use the finger-prick reader, but less often.

I recommend that you contact your hospital diabetes team and ask them to request that your GP prescribes Libre CGMs.
 
ElenaP said:
It may or may not be diabetes related.
Click to expand...

Good point, there's other auto immune conditions we need to be aware of alongside t1d, best to get a health check from your GP and get some blood work done just to check things like iron levels and thyroid function too, just in case.
 
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