This week’s blog post comes from Ashling O’Kelly in Limerick who had a difficult journey to her diagnosis with type 1 diabetes in 2018. I met Ashling through the Limerick and Clare support groups where she continuously has me laughing. She’s got my kind of sense of humour.

Ashling’s journey began with being misdiagnosed with type 2 diabetes and three months later she was admitted to hospital through A&E and correctly diagnosed with type 1 diabetes at the age of 42 years.

Ashling’s Diabetes Journey….. So Far

My name is Ashling O’Kelly.  I have roots in Roscommon, Galway and Mayo, I worked in Dublin for years and have been living and working in Limerick since 2014.  Connacht first and then Munster, bring on the red army!!!!  I have a twin (non-identical) sister, two half-sisters and two half-brothers.  Since lockdown and working from home, my neighbour’s cat has more or less moved in (my neighbour knows), recently the cat brought me in a live bird.  This is one of the most exciting things to happen so far in 2021.  The bird survived; you will be glad to know. 

My Diabetes Journey

I was diagnosed with Type 1 Diabetes on 12th November 2018 at the age of 42 but my diabetes journey began in May 2018 when at a health check provided by work, the nurse picked up a BG (blood glucose) of 8 mmols/L and advised me to go to the GP to check for diabetes.  My blood test via the GP came back with a HBA1C of 46 mmol/mol (6.4%) and I had a BMI of 27.7.  While BMI is not an exact science, it put me in the ‘overweight’ category.  I cannot remember exactly how much weight I was told to lose, but my GP advised that I was on the road to becoming T2 (type 2).  He gave me an information pamphlet about T2, advised to lose weight and to come back in 3 months for a repeat blood test.

Onset of Type 1 Diabetes Symptoms & Misdiagnosed

In June and July, there was lots of sweating which I put down to the hot summer.  By August, I had not lost much weight and not understanding the significance of the three month repeat blood test, I decided to throw myself back into the gym and gave myself until October to go back to the GP.  The weight fell off and I was so proud of myself!  Around this time the incessant thirst and multiple trips to the bathroom began.  I also had cramps in my calves which had me waking up shouting with the pain.  The other side effects I had was that my hair was falling out and I developed thrush.  The hair loss really concerned me, along with in work, I had trouble concentrating in meetings and some days I found it difficult to complete simple tasks.  My eyesight became blurred and one evening driving home from the gym, I blanked out for a few seconds and came to after the turn for home.  That really frightened me, I thought I had the beginnings of Alzheimer’s and/or the menopause.

I had my return GP visit mid-October, my regular GP was on leave and the other GP diagnosed me with type 2 diabetes with a 1 ½ stone weight loss, HBA1C of 124 mmol/mol (13.5%) and fasting bloods of 13 mmols/L.  ‘Take Metformin for a month and come back to me’.  THAT WAS IT!!!!

Dealing with Misdiagnosis

My Aunt is a Dublin-based GP, I have a relation who is a pharmacist and a close friend in Limerick who is Type 2.  I contacted them over the coming weeks and let them know of the T2 diagnosis.  Between them all, they advised to have the GAAD test (GAD Antibodies Test) done, apply for the LTI (Long Term Illness Scheme), get referred to an Endo (endocrinologist – specialist consultant doctor) and ask for a blood glucose monitor.  I rang my GP to ask about all of this and he was dismissive and annoyed that other professionals were interfering.  I insisted though and he agreed to the LTI form and Endo referral.  My wonderful Aunt rang me to check in a few days after I told her.  I had had a rotten week.  I was utterly exhausted and was either crying or angry for no reason.  She of course suspected T1 and told me to take myself to A&E the next day.

That Saturday in A&E, I had fasting bloods of 18 mmols/L and ketones in my blood but not in the urine (I am not sure of the number).  This was the first time I had heard of ketones and I remember thinking that must be good if they are gone from the urine.  There is no Endo on duty in Limerick hospital on a Saturday.  The A&E doctor was very kind, she got me pumped full of fluids and sent me home with a referral to the AMAU (Acute Medical Assessment Unit) clinic the following Monday.  She described the AMAU as a clinic in the hospital for people who presented at the hospital/GP/ShannonDoc over the weekend who needed further medical assessment. 

On Monday in the AMAU, I drank 6/7 litres of water, I had lost another ¾ of a stone in the previous two weeks and my clothes were falling off me.  I remember several dizzy spells that day and finding it hard to have a conversation.  I had ketones of 4 and finally got a T1 diagnosis at 2pm.  The consultant praised my aunt for telling me to go to the hospital.  This advice alone meant I had avoided a DKA (Diabetic ketoacidosis).  I was admitted that day and stayed in the hospital for two nights.  I received some information from a diabetic nurse and had a short conversation with a (non-diabetic) dietician.  I did get some good leaflets to read up on when I got home.  I did not absorb much those first few days however!!  The BGs were still high and my head was in a spin.  I had a frank and honest discussion with the GP after leaving hospital and am happy with the measures they put in place to try and prevent a misdiagnosis with potentially serious consequences in the future. 

Official Diagnosis of type 1 and The Emotional Impact

I felt such relief at the diagnosis that I wasn’t going crazy.  My Mum was also T1 and passed away from complications at the age of 37 in 1986.  My Mum was a nurse and was diagnosed in 1969 after she and her student nurse pals were practicing taking blood tests on each other and she registered a high blood sugar reading.  When Mam was diagnosed, it was one injection of insulin a day and glucose monitoring in the urine.  There are many, many T1s around now who would have been diagnosed at that time, unfortunately my Mum got every complication there is.  My diagnosis was a hugely emotional time for the family, I will not forget the pain on Dad’s face when he visited me in hospital even though he tried to hide it.  My Mam’s brother also visited and smiled all the time, but I could see it brought back memories of the tough time Mam went through.  I feel such empathy for what my Mum must have gone through over the years.  I feel so fortunate to be able to have access to a CGM (Continuous Glucose Monitor) and (an insulin) pump, what a difference they could have made to her.  I mention my Mam not to worry anyone, or because I have a fear that I might have the complications.  I am T1 less than 3 years, but it has been a part of my life since birth and Mam will always be part of my diabetes story. 

Finding my Tribe

I left hospital on 14th November – World Diabetes Day and I love the coincidence!!!  I found Diabetes Ireland on Facebook and they advertised an Adults with Type 1 conference in a hotel up the road from me on 27th November.  I took a seat in the front row - notebook and pen at the ready absolutely bursting to learn more.  A question was asked by someone from the Limerick Adults with type 1 Diabetes Support Group.  I nearly gave myself whiplash spinning around to see who was talking.  I made a beeline for Averil and Jill after the meeting and contact details were exchanged.  My first meeting with the Limerick Support group was in January 2019.  The friendships I have made there are nearly as important to me as insulin.  The meetings are fun, there is respect, trust and sharing sound advice.  Through the Limerick meeting I heard about the Clare meetings.  Even more information and more friendships there, woo hoo!!!  I went to a patient advocacy meeting in Diabetes Ireland, a technology conference in UCD, to the Thriveabetes conference and to a Diabetes Ireland event in Limerick all in 2019.  Education, advice and experience gave me confidence in that first year.  I experienced the impact female hormones have on insulin needs and I learned to deal with the ‘you can’t eat this’ and ‘have you it under control by now’ comments.  I will admit to eating an enormous chocolate muffin that I didn’t even want in defiance to being told I couldn’t eat dessert.  My honeymoon period ended in November 2019.  I remember that day, I needed hardly any bolus (mealtime) insulin, my beta cells had their farewell party in the islets of Langerhans.

My Diabetes Wish List

I would love to see technology available to all as standard, if desired of course.  I also believe there should be psychological support available as standard for all diabetics.  The number of decisions T1s have to make every day to try stay in range is immense.  I have read about diabetes burnout; we should have qualified psychological support available; prevention is better than cure.  Mental health support is vital whether we are newly diagnosed, an experienced T1 or going through teenage years or menopause.  I have done a tiny bit of work contacting local politicians with the aim improve services both in Limerick and across Ireland for all types of diabetics and will continue to do what I can to push the agenda forward.

Thank you for taking the time to read this and a huge round of applause to Banting and Best.  It is the 100-year anniversary of the first insulin injection on 11th January 2022.  I have a dream to travel to Toronto at some stage in 2022 in recognition of this very important event.

Thank you Ashling

Thank you so much for sharing your emotional diagnosis journey with us Ashling. Every time I read it I chuckle but also reach for the tissues!

If you have a diabetes story that you would like to share please do reach out to Thrivabetes - we are organising a summer series of people with diabetes in blogs post but also in recorded video interviews. Email me, Gráinne at Grainne@thriveabetes.ie