Im experienced but not professional.
At the tender age of 49, the spring of 2008, & training for yet another Women’s Mini Marathon, I was all to aware of a very unwell feeling. I blamed, my change of life / menopause, middle age and getting older.
Yes that’s it ! A mid life crisis, “my imagination”
Permanent kidney infections, bad skin problems, watery sensitive eyes, vision problems while reading, constant headaches, and boy the joint pain was so bad. I wasn’t drinking lots, or pee’ing lots, But yes a permanently upset tummy, ( diarrhea ) within a half hour of eating anything. What I couldn’t dismiss was the shaky feeling I’d developed, not always visible to others, but constantly with me.
Thinking my over active thyroid was out of remission, I finally took myself off to my GP.
Then he said the word “diabetes” my head was on fire with panic, blindness, wooden leg, kidney failure etc. I was nearly ordering the white stick and the old people’s quad bike.
At 8.30am the next morning I reported fasting, for blood tests, at 9am I drank my bottle of lucozade ( as per instruction ) and was back at 11am for more blood tests.
The results were to be back the next day, I went straight to bed, I felt so sick and then came the phone call from my GP ( same day ) 25.5 I think it was. My prescription was like a shopping list, and came to the counter in a carrier bag. “Endless crying” into a tea towel happened, a tissue just wasn’t big enough, like that was going to help lol.
Yes I was carrying weight, a few stone. I’m 5ft 8in tall & I was a tight size 16
Losing 3st in 2 months was no bother, ( the glucophage was great, it took pride in promoted the diarrhea that well, that ( size 12 ) happened fast.
But my blood glucose readings were not great, and my “ill” feeling was with me every hour of every day, and here’s me thinking losing weight would “cure” it. I continued on this road as instructed by my diabetes Team for 4 years, injecting was something I was NEVER going to do, but in the spring of 2011, while preparing for my daughters upcoming wedding at Christmas, I was now a size 6-8, looked awful, and felt that if I’d died, It would have been a relief.
With clinic / hospital appointments only every 6 months, and my head full of my daughters wedding, I just kept going, as best I could.
It was that following spring / summer in 2012, that I decided “no more” tablets, I didn’t care any more. I was all set to turn up to the clinic with meds in a bag, to say ‘here you are, I’m done & I won’t be back”. When I got to the clinic that day, I told the doctor, “no more, I just couldn’t do this anymore” that’s when he first mentioned type1, you could have wiped the floor with me I was that shocked, (so much for never going to inject) apparently I was a type1 all along, but because of age and weight, type2 seemed the more likely.
Antibody tests were done, the results were announced, and type1 was confirmed.
Type1 and an insulin regime that would need at least leaving cert maths, the whole thing was enough to send me into a spiral that would change life as I knew it, and I wasn’t happy.
Now there would be carb counting, ratios, sick day plans, Basel, bolus, and diabetes chat rooms where the launguage they spoke was “diabetes”, o did you not know that diabetes was also a language ? Well it is. ……….
I’d silently watch, and then google the terms and abbreviations they used, and one day after studying very hard, I took to posting with as many abbreviations as I could get into a sentence or question, I thought that made me look clever.
It can be a bit intimidating in diabetes chat rooms. They know so very much, but you know if you watch for long enough “some call it stalking” lol, you can learn so much from those hardened Type1 Diabetics.
You see, the problem is, the nurses show you how to inject, carb count, work out ratios and introduce you to the carbs & cals app and book. They will even send you on a DAFNE course. You leave this thinking your so very clever and now qualified to control your own diabetes.
However as the time slips by, you soon learn that in fact you don’t know a whole lot at all.
You’v learned a fraction of what you actually need to know.
Your feet are burning unbearably, skin problems, weight problems, hearing problems, sexual problems, etc, the thing to remember is, as your blood sugar goes above or below the recommended level, this effects our entire body, and the nerves and blood vessels to organs and extremities.
I can count carbs, but I’v no recommended carb intake per day, try as I did, iv never been told what this is. I was just told to eat as normal, count the carbs and inject appropriately. Problem here was, they had NO idea what my “normal” was. Result ? Weight gain.
Gaining weight plays havoc with diabetes control, but helping you lose, or control that, is not part of the system. I was told to stop looking at the scales, when I was concerned about the speed of my weight gain. ( and me with a history of heart problems since I was 40 ) I’m my mind this was not good, so I took matters into my own hands.
I repeatedly get my HBA1C done, ( the big exam ) and get my results, but no one explains exactly how this works, I’m given the result, it’s either good or bad, but without understanding it, how can I hope to manage it properly or achieve it. Is this rocket science ?
I said I was going deaf, but was told it had nothing to do with my diabetes, by my diabetes team, ( this is false ) and the audio clinic in tallaght hospital confirmed this is quite common in people with diabetes, but here’s the thing, if your 60, you get refer’d straight for a hearing aid. If your 55 you go on a lengthy process & wait list that will see you when your 60 hopefully.
Meanwhile, the tv is volume is up, speaking to more than one person at a time means ” muffled sounds” & I can turn around and be shocked to see someone right behind me.
Blood glucose meters are given to us at our clinics, and these are a “one size fits all” as they tend to favour just 1 or 2 types of meter. The new Abbott neo (as an example) has individually packed and sealed BG strips, that I can’t open, and it’s accuracy reports are not great. Other meters have a smaller screen not as easily read without glasses. Then there’s the ones with the tiny buttons, the basic bog standard meter, and the one that could nearly cook the dinner it’s so high tech. Really there should be a selection of meters to chose from, and an accuracy rating attached to it. Meters should fit the individual, not the other way round.
No company shouldn’t get priority treatment when it comes to our meter or any of our other needs. The choice MUST be ours for various & personal reasons.
Our clinics have very professional nurses, so don’t get me wrong, I do think, they do a very challenging job, but it’s like the text book they learned from is a touch out dated. The other problem is they have a vast knowledge of blood glucose, carb counting, & ratios etc, but little or no knowledge of the effects diabetes has on the rest of our body.
Alternative ways of dealing with our diabetes eg: low GI foods, & lower carb diets, are not even considered, so after weight becomes an issue, we are left to search for solutions ourselves, and sadly some discover Diabulimia along the way.
Basel testing wasn’t a term I ever heard, until I stumbled across it in an online support group, I found this information of extreme importance, but was never informed about it at my clinic.
Tummy lumps were mentioned, if it happens just don’t inject there. Lipohypertrophy was a word I had to google after it landed in a conversation I was having, I just kept nodding like I knew what was being talked about. I went on to learn as much as I could on the subject, so I’d never be caught short again. This was also information of extreme importance.
When new products come along like the iport for example, we have access to it, have learned all about it, are using it, and are members in chat rooms and specialised support networks before our diabetes teams have even seen one. We, as a diabetic community make sure we are well informed and as we are the ones actually living with diabetes we tend to search out solutions to make life easier even though we’v been told it’s not possible, & That’s how it should be !
I suspect this is partly because getting something new introduced to our hospitals, for our use is a tough and lengthy process, but Diabetics tend to discover these devices online and are waiting with open arms when it finally hits our Irish shores.
So what’s the bottom line here:
If you have been diagnosed with type1 or type2 Diabetes,
“It’s your Diabetes” & your probably going to have to live with it for life.
Once you get over the initial shock & fear, dry your eyes, grab it with both hands and
Learn everything you can about what having diabetes means, how it can effect you, & how best to control it with your lifestyle. Join a Diabetes community even if you only watch, listen and learn, at least if you have a question, someone there will have experienced it before you. These people will understand anything you throw at them.
Your diabetes team will undoubtedly be brilliant, but that shouldn’t stop you from seeking out information you didn’t already have.
“It’s YOUR Diabetes”
“It’s YOUR Life”
Davina Lyons is the founder of Diabetes T1 Ireland. Davina has Type 1 Diabetes, and has been an amazing source of inspiration, strength and support for people living with Type 1 Diabetes in Ireland. Davina liaises and works with Diabetes Insight to help advocate and bring awareness when dealing with diabetes. To Diabetes Insight, Davina is the ‘Voice of Diabetes’ and helps Helena, the founder of Diabetes Insight, better understand through the eyes of those that really know, what it is to have diabetes in Ireland today.
To learn more about the wonderful work that Davina and Diabetes T1 Ireland does please click here