What advice would you give to a Newly Diagnosed Person with Type 1 Diabetes?

Way back when I was diagnosed with diabetes and once I was discharged from the hospital the first thing myself & my mother did was to go talk to someone my age and her mother who already had diabetes. My mother (I was still in shock at this stage) wanted to know what was in my future.

So off we went to visit the house of some people we vaguely knew. I left that house determined not to fall asleep that night in case I didn’t wake up. Thankfully, the next day I had my first appointment with a diabetes nurse (this was 1990’s Ireland remember).

I think that going to talk to people who had first hand knowledge went wrong because the wrong people did the talking. I didn’t know what to ask so I said nothing; the other person with diabetes was only 19 and didn’t say much either. So the “mammies’ were “have at it”.

Today, I’m quite often in the other position – the person who is sought after for comfort and I wonder to myself “Am I saying the right thing?” I’m also wondering “what do they want to hear, what are they looking for?”

I remember the isolation I felt in those first years after diagnosis and how angry I became at all things diabetic. I got off on the wrong foot without support and it took me about 7 years to find a way of dealing with my diabetes. So I’d like to do “a bit” to preventing others from putting that first foot down badly.

With this in mind I compiled a list of things I’ve said to others or things I’ve read that I’ve found true and motivational and maybe some people can add to this list for me.

• Diabetes can get you out of stuff you don’t want to do but it will never stop you from doing anything.
• You can be at war with diabetes or you can co-exist with it – Diabetes will always be there so you have to decide if it’s a friend or enemy.

• Handbags & backpacks will accompany you everywhere to carry your gadgets & supplies.

• Diabetes is life changing and there is a period of adjustment.

• You will become your own doctor, dietician and diabetes nurse because your diabetes team do not live with you 24/7.

What piece of advice did you receive that has stayed with you since you were diagnosed?

Aaahhh The Dreaded Appointment!

You know what I’m talking about! You look at the calendar and realize that your Diabetes appointment is only two weeks away and you let out a deflated sigh a couple of times.

It’s because you know what you’re facing. The doctor will go through your Blood Glucose diary and highlight all of the high readings and then you will realise that there are so many of them. You then have to sit through the judgement and lecture that you’ve heard time and time again. You’d think the doctor would know by now that this tactic doesn’t work and that (s)he should try a new one.

I finally realised after I don’t know how many years that my doctor is supposed to help me not hound me. My attitude has changed; I prepare for my appointments now. I go through my blood glucose diary beforehand and walk into my appointment with my own opinion of what changes need to be made to my insulin regime and if my doctor thinks otherwise they have to convince me of it.

If I feel that my doctor is not educating me about how to better manage my diabetes then I shop around. I mean if we don’t get a good meal in a restaurant then we don’t go back for more do we? Why should I settle for less where my health is concerned? (Aside; it paid off because I now have the nicest, supportive & competent doctor I’ve ever had).

What my change in attitude means is that there is a two way conversation about the management of MY diabetes and that I’m not pushed around. I understand that my doctor is depending on me to provide him/her with the information (s)he needs to serve me best and how can (s)he get that information if I don’t speak up?

The level of understanding we get from healthcare professionals is limited because not very many people with diabetes go into the profession – why is that? Maybe that’s a question for another blog entry?

Golden Blood Glucose Day.

I woke up on a regular morning and I took the first BG test of the day. Low and behold it’s 4.8. I smiled and thought “what a warm fuzzy feeling to start to the day”.

As the day went on my BG readings seem to check all the boxes. I tested 7 times on this day which is my usual and the highest reading was 8.2. I though “Well that’s a little above the recommendation but thank god it’s not 10 or more”. As the day went on the nice feeling of “job well done” continued. The rest of my readings fell between 5.6 and 7.3 – I mean how did that happen?

It’s like all the stars & planets in the universe aligned – just for me. The only difference between me on this day and me on any other day was a much-relished lie in and not running around like a headless chicken. I went to bed feeling so proud of this one day.

“Pride comes before the fall”!! Yep, it was so nice while it lasted.

Diabetes Support Groups, Why bother?

Apart from the multiple daily rituals such as blood glucose testing, injecting, carb counting & exercising, I perform as management of my diabetes, I also thrall through a dozen or so websites from the online diabetes community.

Why? I suppose I’m looking for more information on how to make my life with diabetes easier, or maybe I’m keeping tabs on the possibility of a cure but I think that the biggest reason is that I’m looking for someone who is like me.

I’m lucky enough to be a member of a Diabetes Support Group where there are quite a few people “like me”, but you never know who else is out there.

It’s part of the human condition to seek out others like ourselves. This is why a large number of immigrates in New York all live in the Bronx. It’s why when we go on holidays abroad we have a finely tuned ear when it comes to spotting the other Irish.

It’s only in recent years that people with Type 1 Diabetes are being more open about their diabetes and the internet has helped in that respect. Prior to this a large number of us would have lived in silence for many reasons, some of which could have been the feeling of being different or appearing weak because we have an illness, or overlooked for promotions because of our “sickliness”.

Thankfully all of that has changed and we are actively seeking each other out to find out what our future holds and joining support groups where we find positivity about the future.

What do I get from my support group?

Well for starters it’s great to talk in “Diabetes Jargin” without having to translate and to talk to people who can relate. At each meeting, I always pick up some piece of information or tip to try and improve my diabetes management. And I always find motivation!

Exercise or Torture??

I know that as a person with diabetes I should try and include exercise as part of how I manage my diabetes. I’ve read all the articles relating to how it works miracles and I’ve received all the lectures over the years from Health Care Professionals (***********).

But, I really don’t like exercise! I never have. And the normal types of exercise, such as walking, cycling, jogging, etc. just don’t do it for me. The not so normal forms of exercise for example Salsa Dancing or Pilates is just too flipping expensive and not often enough.

I used the excuse of being on the basal/bolus or the Multiple Daily Injection (MDI) insulin regime as an excuse to not even bother. I felt that I couldn’t plan that far ahead with my long acting insulin.

I was not going to add insult to injury by exercising and then having to stuff my face to treat hypos. I mean what’s the point! I wasn’t going to risk adding to the number of kilos that I needed to trim off.

Now I do have to add that at the time my children were very small and trying to exercise, even the boring walk, was just extremely difficult. And this I feel is a legitimate excuse but I suppose an excuse none the less.

So what’s changed?

Well, I’m not a spring chicken anymore. Things don’t work as well as they once did. It’s time to make time for exercise.

I moved to Insulin Pump Therapy and so eliminated the first excuse I had. Then with trial and error I eliminated the second excuse (although I’m still not shaving any kilos off the hips). And of course the darlings are both in school 5 mornings a week pretty reliably which helps.

I’m still not “excited” about the walk around the block and I won’t go out in all-weather but I am feeling benefits. But I will persevere and hopefully end up just like my mother-in-law; a 61 year old kicking a ball with the grandchildren.

Happy World Diabetes Day

November 14th was chosen by the International Diabetes Federation because it also happens to mark the birthday of Frederick Banting who, along with Charles Best, first conceived the idea which led to the discovery of insulin in 1922.

Anyone with insulin dependent diabetes knows how important these two chaps are and I personally owe my life to them.

But it’s bitter sweet to wish people a “Happy World Diabetes Day” when maybe I should save my wish and wish that I didn’t have diabetes in the first place.

Why should I celebrate this day? Why am I celebrating having an illness??? I could roll over and say “to hell with it”. I could decide to not care anymore and give up – let diabetes do its worst and painfully make my life miserable until death.

But I choose to fight! I choose to want to live a good life for a long time and watch my children grow up and maybe even become a grandmother. I want to keep all of my digits and my sight; I don’t want to be on a waiting list for a donor kidney. I want to live life to the fullest.

So, I work hard at trying to stay on top of it. I take my insulin, I test my glucose levels multiple times a day and then some, I weigh my food to find out the carbohydrate content and then calculate how much insulin to inject, and I try to eat healthily.

So I’m not really celebrating having diabetes. I’m celebrating life and the quality of it.