From Diagnosis to the Here and Now with Type 1 Diabetes

 

 

 

I was diagnosed with type 1 diabetes relatively later in life​, I was the wrong end of 40 and looking 50 straight in the eye and i was living life to the fullest.

my only big problems back then was when i held my hand out to pay for something in a shop, I had a tremor or shake that I had no control of, and i felt like someone who had an alcohol problem, but hadnt made it to the bar that day, yet !!!!!

my vision had become quite blurred, and my eyes were sensitive and watered easily and with the slightest draft, the wind make me look like i was crying continuously. It was then that i gave up wearing mascara because i always looked like someone out of the Adams family.

I dreaded getting a cut or scratch anywhere on my body because even a graze with no bleeding led to sore, wet, deep wounds that literally took months to heal. gardening and pruning roses was a nighmare.

I always had a kidney infection, there was never that burning stinging sensation people usually talk about, and I certainly never went more often than I usually had, but the pain in my back was that bad I would’nt be able to straighten from a bent position. I could wake up in the morning just fine but an hour or two later id be doubled over.

my energy level was good, and as a matter of fact id be up and dressed for work by 7am and more than willing to continue with whatever I needed to do until the early hours of the morning, every single day.

Now for the good part.
I had no issues maintaining a slim figure with absolutely no effort what so ever. No matter what I eat I remained slim,

The classic 4 Ts of Diabetes symptoms are:

– Thirsty – excessive thirst
– Tired – lack of energy / tredness
– Toilet – frequent urination
– Thinner – weight loss

If you are experiencing any of these symptoms it would be a good idea to visit your GP for testing.

As you can see I didnt exactly follow the typical symptoms, but in fairness Diabetes wasnt on my radar. What eventually got me to a GP to voice my concerns was the shake / tremor in my hands and the kidney infections. that I was constantly on antibiotics for.

I had been in remission from full blown Graves Disease for 5 years and I knew the signs and symptoms of Graves very very well.

Graves Disease is and Autoimmune Disease that effects the Thyroid Gland, in my case it gave me an overactive thyroid, and because the Thyroid Gland controls all the other organs in the body there’s not a part of the body it does’nt effect.

Over Active thyroid ? ( in simple terms ) meant every part of me was in overdrive all of the time.

I was reluctant to go to my GP and say I suspected my Graves was back because I knew medication would make me gain weight as my blood tests went back within normal range.
Yes ! I hear you say. VANITY !
Thats right it was pure vanity, I looked good with little effort and I was happy about that.

I will never forget the GP saying NO ! I had only had my thyroid bloods done a couple of months before this and they were fine, but, he said, “lets do a glucose test” first thing in the morning. fasting, then drink a bottle of lucazade and exactly 2 hours later we do another glucose test.

 

The rest as they say is history:
Shocked, horrified, very upset, confused, frightened, shame and mortified are all words I could use to describe my initial feelings at diagnosis. In fact I cried that much in the weeks that followed that tissues or kitchen roll just didnt have the absorbtion I needed for the tears I cried. I cried into towels, wouldnt leave the house and didnt want to tell people.

 

I too, had heard the  opinions of people of how they thought  diabetes happened to a person, and I sure as hell knew I didn’t cause this but didn’t have the strength to argue or educate the ignorant. I just wanted to crawl into a corner and hide from it all.

The months that followed were very tough and very isolating, people said “it could be worse”, “aw your not pricking your finger in front of me, thats gross”, “please dont inject here, people will get the wrong idea, just leave it and sort yourself out when you get home”.
Then when id get home and just cry some more. I had stopped going out to lunch with friends, I was becoming an isolated recluse..
My dominating thought was that as food was causing a problem I was ok to just skip that part of the day until i was desperate.

I clearly remember having my lunch on a plate on the kitchen table one day, beside it was my insulin pen all ready for what had to be done. I looked at that image for hours and then threw my lunch in the bin and put away the insulin pen.

I hadnt had my Dafne course or much educational information at that point so I did’nt understand that insulin would be needed even without food but the one thing that was loud and clear was that there was no way out of this and i felt doomed. It was like living a nightmare.

Yes I was that low emotionally and my confidence was totally gone. I was now unsure of everything, I was lost and I just could’nt imagine a way forward. Those were very dark days for me and my daughters who worried endlessly about me.

The only way was up !

Slowley I began to try and seek out groups where I could meet and chat to others just like me but without much success until one day the hospital phoned and said they had a 3 day course starting and requested I attend it, which I gladly did just so I could meet other type 1’s. The actual education was of secondary importance to me at that point.

I  got to sit around a table with others and tested blood publicly, this was part of the course I was doing on carb counting and learning about food types and groups, how to weigh food and calculate insulin doses, how to calculate corrections, basically all the stuff I was going to need in order to live, and have a healthy and safe life with type 1 diabetes.

It was the first time since my diagnosis that I felt included in anything, a part of something, just one of the gang, and I began to feel normal again.

This was my turning point, this is where I gathered my thoughts, started to research and learn as much as I could, this is where I started to question everything.
Not that i wanted to be difficult, but i wanted to gather as much information as I possibly could about the kind of life I now had to live.

I found online support groups, met lots of people who had lots more information, and the learning continued.

Being comfortable again !

I knew that the “Me” I knew so well was back when I ventured out and tested and injected when ever, and where ever, was necessary.
I knew that “Me” was back when I started to react to things that people would say to me that was incorrect while they felt free to comment on my diabetes.

I knew that I was back when i stopped suffering fools, and I stopped being silent about what was important to me. I was well able to put the Diabetes police well and truly back in their box, ( we all know some of these ) and when I heard people quote chapter and verse about ” curing, reversing, and getting rid of diabetes with exercise and diet i was well able to step up and correct them, all in the name of diabetes awareness.

I knew that i was back when i began to speak out about things like the lack of services for us and the difficulty I encountered when trying to access technology that would make my diabetes management a bit easier.

The more research I did the more I realised the shortcomings of our health care system. I remember needing so much more than my hospital visits were giving me but i do consider myself one of the luckier people in the system.

I attend Naas general hospital in Co Kildare, so im one of Dr Kevin Moore’s patients, Kevin is well known for his up to the minute information on latest technology, he is extrememely easy to talk to and approach, and he is in no way judgmental.

Dr Kevin Moore also attends Thriveabetes, the 1 day conference for people with type 1 diabetes. He comes as one of the conference speakers and educators. At the last Thriveabetes one of the topics we requested he talk to us about was weight management in relation to type 1.
As insulin can increase weight it’s important to chose foods wisely as the higher the carb content the bigger the dose of insulin required. He also spoke about the medications available to us for reducing weight, how exercise effects our blood glucose levels, and many other topics we as patients put questions to him on. I found this talk hugely beneficial.

the next conference is only weeks away, 24th February 2018 and im so looking forward to it.
if you want to register there are a few places left but not many so so dont delay securing your place. Here is the link you will need to register.

http://thriveabetes.ie/index.php/2018-thriveabetes-register-here/

With every day that goes by it’s easy to establish where the services are lacking for people with type 1 diabetes.

Diabetes Advocacy was born in me when I realized There’s no regular and routine foot care even though we are at greater risk of amputations.

There is no regular and routine cardiac examinations or scans even though we are at a greater risk of heart problems because of having Type 1.

Emotional and psychological support was never mentioned when I was struggling so badly after diagnosis.

An adult requesting an insulin pump goes on a wait list if they are lucky but many hospitals don’t have a pump start clinic so transferring to another hospital to avail of a pump clinic often means traveling great distances taking many hours. A pump start is not a 1 day appointment. its done over several full days as you prepare to actually pump insulin for the first time.

If we request a CGM ( continuous glucose meter ) then we must be prepared to fight a hard and persistent fight with an outcome that’s not a forgone conclusion.

This is not by any means a failing on the part of my diabetes team, this is a failing on the part of the HSE who don’t provide such services.

Still we must manage our type 1 every day and night for the rest of our lives. We seek out the technology available to make sure we have the best chance at a healthy life, and in turn this would cost the HSE less on diabetes complications in the future.

Now here’s the bit I don’t understand. If every person with type 1 who wanted to use a Freestyle Libre flash glucose meter were able to access it there would be a saving to the HSE of Aprx 1% on every patient using it, and a further saving on future diabetes complications.

Then they announced the Libre will only be available to a few hundred
children / teens, but not adults.

And that’s why Diabetes Advocacy is necessary.

 

 

 

From Diagnosis to the Here And Now?
Iv gone from some of the darkest days in my life after diagnosis.

I Somehow managed to rise like a phoenix from the ashes and I found the strength within me to start learning. To connect with those who felt just like i did about important matters and to start advocating.

 

 

 

Im Davina Lyon, I’m not a professional, just a person With Type 1 Diabetes sharing experience.

*IMPORTANT INFORMATION*
For those who think diabetes is caused by an unhealthy lifestyle let me clarify a couple of things.
I have type 1 diabetes. It’s an autoimmune disease. Nothing I did, or didn’t do caused it and nothing I do will cure it. There’s is currently no cure for Type 1 diabetes.

 

davina-lyon

 

Type 1 Diabetes happens because our own antibodies attack and destroy an organ in the body. it’s an autoimmune response where antibodies that normally fight disease mistake a part of our body (the pancreas in this case) as foreign and attack to destroy it. When those antibodies attack the insulin producing islets in the pancreas we stop producing insulin so we need to inject or pump it.

Without insulin a person with type 1 diabetes would die. At present it is not known what causes this to happen, and there is no cure.
A person with Type 1 diabetes MUST inject or pump insulin to stay alive.

There are many factors that contribute to a diagnosis of Type 2 diabetes so pre judgment of a lifestyle choice is unfair at very least.
A person with Type 2 diabetes, while still producing their own insulin for various reasons their body cannot use it correctly or efficiently.
These people are generally treated with oral medications and sometimes with insulin injections.

Please support me to help raise funds for
Thriveabetes or Diabetes Ireland.

Thriveabetes is completely organised by volunteers. The financial cost of Thriveabetes is subsidized through fundraising, event ticket sales, sponsorship and an adjoining exhibition.
If you would like to make a donation to Thriveabetes – we appreciate every single donation.

http://thriveabetes.ie/index.php/donate-2/

Diabetes Ireland have been a huge support to me and our Type 1 Community.

Diabetes Ireland Fundraising link :

https://www.diabetes.ie/fundraising/donate/

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