MY FIRST DKA & HOW I DISCOVERED I HAVE TYPE ONE DIABETES.

Status
Not open for further replies.
NealSawyer

NealSawyer

New Member
Relationship to Diabetes
Type 1
Howdy

I am Neal Sawyer. I am a newly diagnosed Type One Diabetic. It is in the gene pool but at the age of 35, I thought I'd dodged the bullet. Unfortunately, it caught me and got me in the end and it did so with an act of great vengeance in the form of a DKA.

I'm still in the first few weeks of mist. While it is all very overwhelming, I am attempting to maintain a positive outlook. The temptation was to bury my head in the sand. The thought of announcing my disease made me feel vulnerable and insecure. Anyway, I put that to one side and have yesterday published a blog about my experience and diagnosis. Writing about this was a huge step in accepting what has happened. Not only that, if someone out there might gain a drop of comfort from realising they are not alone it has been worthwhile.

If you fancy, you can read the full story below:
https://nealsawyer.wixsite.com/nealsawyer/post/the-sawyer-post-issue-4-my-first-dka

I work as a freelance writer and musician. I'm hoping to be vocal about this as much as I can. I want to face it head-on While I haven't got a massive audience, I hope that every little helps.

It is lovely to meet you all anyway my new friends.
I wish you health in body and mind.
Stay safe.
Neal
 
Hello Neil and welcome.
If you have the mind set that diabetes is a condition and not a disease it does help 🙂 Welcome to the club no one wanted to join.
 
Welcome to the forum @NealSawyer

Sorry to hear about your DKA, hope it’s your first... and last!

We have lots of experienced T1s on the boards whose brains you can pick about any and all questions, uncertainties, quandaries, or simply to have a good ole moan about the fickle and frustrating nature of the whole silly business of pancreas impersonation. 🙂
 
Hello and welcome @NealSawyer glad you’ve joined us- sorry you needed to!

I hope you’re feeling a whole lot better with an insulin supply re-established. DKA is so frightening.

I followed the rules and was diagnosed as a child none of this hanging around until I was older stuff. I hope things are settling for you.

You’re fast out of the blocks with your blog! It’s taken me 42 years to write a few thoughts down.

Wishing you well🙂
 
Hi from me too. I was diagnosed last year at the age of 55 so I am a significantly later starter than you but by no means the oldest. Thankfully I dodged a DKA by drinking pints of water as soon as the thirst hit and then cutting carbs.

I hope you find this forum as hugely beneficial as I have. Sharing your experiences with people who understand is really helpful with diabetes and there is a wealth of knowledge and experience on this forum.
Pleased to have you on board.
 
Thank you all so much for the welcome and kind words. It means a lot and I'm happy to have joined the forum as your words are comforting.
It is quite amazing how uniquely the condition (thanks @Pumper_Sue) affects us all. I was led to believe I was somewhat of a late starter at 35 but reading the posts this seems quite the contrary.
You all have my admiration for openly talking about this though. It is all new to me at the moment and I know there is a long road ahead but I will be sure to try and get involved.
Huge respect!
 
Hi and welcome. As with all chronic diagnosis it will take some time to adjust and you’ll have your ups and downs but it’s a manageable condition and there’s some nice kit around that can make it easier as time goes on.
 
Partha Kar tweeted a really interesting table of all those diagnosed with diabetes 1 & 2 in 2018 and which age brackets they were in. I will try finding it and posting it, or a link
 
Just read your blog and can relate to a lot in it although as I said, I have so far managed to avoid DKA.... long may that continue.
Your hitchhiker analogy is a good one. We often refer to it as the Diabetes Fairy (DF).... probably more a mischievous elf in reality. Think I would rather have the DF visit than be constantly checking my rear view mirror for the psycho hitchhiker in the back seat! 😱 .
I remember in the early days things were all pretty scary eg. those first few hypos feel like you are going to die, but after a few months you get used to them and your body doesn't panic so much and you accept that sometimes they just happen and I take my treatment and usually continue with what I was doing. Sometimes it is my fault because I get things wrong and sometimes it is the DF throwing a spanner in the works. You learn to roll with it, but every now and then it gets really frustrating and then the forum is handy to come and have a rant, because we all need that pressure release occasionally and we understand that and sometimes someone will come up with a corker of a suggestion to make life with the DF a little easier.
 
Hi Neal, welcome to our merry band!

I wasn't quite such a late starter but as you have noted each of our experiences is unique - for the simple reason that each of us is unique! OK some things are very similar at times but by no means always so when something happens we're not too sure about why or how, it's very useful to be able to canvass other folks' own experiences. But having done that if we don't get the same answer from a majority and hence be inclined to believe that - we have to go with our own judgment.

Only time and experience will inform us whether we should now trust our own judgment!

None of us claims to be a diabetes expert - except with our very own (unique) diabetes, eventually. Cos you will !
 
I'm still finding it hard to comprehend why it happens when it happens. Out of interest more than anything. I do ruminate with guilt that somehow I could have prevented it but I have read that this is not the case?

The diagnosis age is so broad and doesn't seem to follow a trend. It is like a ticking time bomb for anyone with the gene. I suppose it is one of those mysteries. I think technology and research are rapidly improving and big discoveries are likely to be unearthed in the future. I must admit, I am convinced I had COVID back in February. Reading the reports of a link with the virus and the onset of Type One would make a lot of sense in my story.

This is a great place to vent, and I'm sure in due course I will. I'm already compiling a list of annoyances. :D I am also considering writing a blog post for newly diagnosed. Mainly outlining the basics and everything you can expect in the early days of meeting the Diabetes Fairy (always learning @rebrascora). The information is so overwhelming for a newcomer. For instance, I have never had a repeat prescription in my entire life and now I have a full-on shopping list. Can't complain though as that's the magic that keeps me ticking over. Just more the practicalities of re-ordering the meds.

I hope everyone enjoys their day in the sun this beautiful Friday. A Gin and slimline tonics allowed right? 😉
 
Hello again Neal,
You can not prevent type 1 so waste of energy even dwelling on it. 🙂 It's odd the way it runs in some families and yet none in others. If you look through your family history you might find other autoimmune conditions though which could be the trigger for faulty genes.

Re prescriptions......... have you filled in the forms so you can have free prescription. (diabetes perks) The prescription is not automatically free it's the certificate you need.
 
Hello @NealSawyer welcome to our and yours now wonderful forum.🙂

Lots of advice on the forum so take advantage of it and ask any question you like
nothing silly on here, from ED to the back tyre on my bike won`t stay up.o_O:D
I`m a late starter 63 when diagnosed T1 like you DKA took me into hospital with
blues and two`s and siren going, without this forum I probably wouldn`t be here now.:(

Learn as much as you can without overloading your brain keep in touch with your hospital
team especially the DSN, haven`t read your Blog yet but will do, take care stay safe.
 
NealSawyer said:
A Gin and slimline tonics allowed right?
Click to expand...
If it’s not then I am breaking the rules every weekend!!
Welcome to the forum Neal and thanks for posting the link to your blog. A good read, but not such a good experience for you.

I am another late starter with DKA at the age of 53. It is a shock at any age and a very steep learning curve. This is a great place for practical advice as well as support. More than once I have emailed when away on holiday and been glad of the knowledge that I can access on here.

I was recommended the book Type1 Diabetes in Children Adolescents and Young Adults by Ragnar Hanas. Ignore the age reference. As you have seen this happens at any time, and the info in the book is very useful, with clear explanations and regular updates in the new tech available.

What insulins have they started you on ? Tap into the help from your Diabetes Specialist Nurse (DSN) who will work with you to get your levels settled and enable you to make adjustments to your doses.

Fire away with any questions you have . Nothing is considered silly and someone will come up with an idea. The Diabetes Fairy will find you at times and just when you think things are sorted decide to play nasty. We can only do the best we can and just tell her she is not welcome (Could she have her own song? I read your original post soon after I had finished a singing lesson in which we were talking about composition. A whole new area to look at for me which I have never done before. Loving it)

Keep in touch.
 
@NealSawyer - avoid Fevertree Tonic water when you can - it is absolutely lower carb than 'normal' tonic but is not actually carb free, trouble is it's much nicer tasting than Schweppes Diet ......

Here I am, 48 years after diagnosis, and how the hell do you imagine I have survived? :D

As the Spanish (men) are inclined to toast each other, Amor sin suegra! 😉
 
The gin and tonic advice is music to my ears! I'm glad one of my favourite drinks doesn't have to be banished to the history books. I prefer slimline anyway so I am delighted with this news! I will be sure to try the book @SB2015, thank you!

I'm on 6 units before breakfast and lunch, then 7 units pre-dinner. My dosage of long-lasting insulin has been reduced to 22 units before bed as I was dropping quite a lot during the night. I feel like I am in a holding bay at the moment as I'm yet to see a specialist due to COVID. I am currently relying on phone contact but they are eager to get me in once the backlog is sorted. That's when they'll give me a "thorough once over" in their words. I imagine that is when I can start tweaking insulin levels to suit and allow me more freedom.

A few of you have kindly mentioned posting some questions on here. I've plucked up the courage to ask if that is OK? I didn't know whether to start a new thread or continue in here so excuse me if I am not abiding by the rules. I will use the helpline soon but writing these down is easier at this point.

Firstly, I seem to be suffering from chronic fatigue. I just can't seem to shake it and onsets as soon as I wake up. I'm sleeping fine, I go out like a light, better than I ever have. Usually, I will have around a good 7 hours. I've tried keeping hydrated, I have an app that instructs me when to take water on board. I also exercise daily (other than Sunday). I burn 360 calories on a step machine one-day and do weights and floor work (planks etc.) the next day. I have had my first two hypos and both have come on weight lifting days interestingly enough. Fatigue does seem a major issue and I am struggling to focus on the easiest of tasks which makes me concerned.

The next question is quite embarrassing to bring up but the doctors and specialist are persistently questioning my BMI (even though I weren't weighed in hospital). This is a frequent dig, the only time a specialist has said different was one helpful specialist who aided with the adjustment of my long-lasting insulin. I raised my concerns not being able to lose weight and he said this is just the way I am which was reassuring as I didn't feel blamed in any way. Frankly, other than the aforementioned specialist, the constant judgement is getting me down as it feels like it is something out of my control. The reason I am so frustrated about this is I am very broad in stature and I also feel so helpless as there seems to be nothing more I can do. Here is the thing, I'm very strict with my diet. I weigh all my food on scales and calorie count to the gram on an app. 6 out of 7 times a week I will be within what is considered the correct calorie range or under. I will have one cheat day but even still this is nothing too drastic. A typical daily diet is a breakfast of two boiled eggs and seeded wholemeal toast, lunch of wholemeal tortilla wrap with white meat and lettuce, then salad and a grilled chicken salad for dinner. This is my own diet that has helped me maintain my blood sugar levels to be fair but the BMI still comes up into question. If I have dessert it will be greek yoghurt and nuts. Even with this prolonged diet and alongside the exercise, I cannot seem to shift weight and insulin seems to affect this. The doctors and specialist are quite judgemental about the BMI but I honestly feel like I would struggle to do anything more without delving into skipping meals, starvation or frequent marathons. It seems ill-informed and unsympathetic. It is so frustrating, I don't feel like there is anymore I can do to improve my BMI. Does anyone else have similar issues, could this be down to some kind of diabetic metabolism problem?

All in all, I suppose it has effected my mental health. Another blow to deal with. I feel judged and helpless on many fronts. Maybe the more the dust settles it feels more difficult everything seems to deal with. Every day seems like a battle of overcoming the odds and screaming to be heard. I lost work after COVID hit and tried to remain positive but this has kicked me down. When I fell on hard times I'd often turn to manual labour but that seems like a recipe for disaster at the moment. I'm determined to overcome this but I fear I may need some emotional support somewhere down the line.

Sorry to go on and on, as I previously said it does help to write these things down. I will overcome this and pluck all the positivity when it comes but today might just be one of those days!

I hope that you're all keeping safe and well.
 
Status
Not open for further replies.
Back
Top