Welcome to part 2 of Aileen O’Reilly’s guest post on her diagnosis of, processing and recovery from Charcot’s foot. Aileen from Dublin was diagnosed with type 1 diabetes almost 40 years ago at age 10 years and is a travel, health, and features writer (Travel Extra, Herald, Irish Times and Irish Examiner). You can read part 1 of ‘Running to Standstill’ here.
Our second post in our Summer Series of Super People with diabetes living in Ireland is part one of a two-part post from Aileen O’Reilly from Dublin. Aileen was diagnosed with type 1 diabetes almost 40 years ago at age 10 years and is a travel, health and features writer (Travel Extra, Herald, Irish Times and Irish Examiner).
I first came across Aileen when she wrote this piece in July 2018 in the Irish Examiner in where she gave a very honest account of how health issues, both related to diabetes and unrelated to diabetes, affected her life and how she “never fully dealt with the fact that she was a diabetic”. This all changed around the time she had her first amputation which saw the removal of two of her toes.
Aileen has written previous posts for Thriveabetes, which details overcoming the diabetes related health issues and I’m happy to report her career has found its track again. You will find the links to those posts at the end of this one.
Running to Standstill talks about Aileen’s most recent experience with her feet and having been diagnosed with Charcot’s foot last December.
I know it’s another thing to add to our diabetes to-do list but it is so important for ALL people with ALL types of diabetes have an annual foot check with a health professional to prevent serious foot health issues. Sometimes, this can be done as part of your diabetes clinic appointment saving you a ton of that extra work to organize a separate appointment, if done well.
The HSE’s Model of Care for the Diabetic Foot document states:
3.1 Foot Examination Frequency
All patients with diabetes should have their feet examined at a minimum on an annual basis whether they attend their primary care physician or a hospital based diabetes clinic. If the patient with diabetes attends their primary care physician or hospital diabetes clinic on a more frequent basis, the feet should also be examined as part of the routine clinical visit.
The HSE’s Model of Care for the Diabetic Foot is not clear about who should or is qualified to perform this exam and the community podiatry services are not even all over the country. BUT this should not stop you from asking for it at your diabetes clinic appointment.
The Model of Care for the Diabetic Foot is very clear that the person doing the foot exam should be “appropriately trained to examine foot pulses, vibration, and monofilament testing.”
3.2 Examiner
A practice nurse/primary care nurse in the patient’s general practice who usually reviews the patient’s general diabetes care and is appropriately trained to examine foot pulses, vibration, and monofilament testing. This clearly has resource implications both for nurse training and time for delivery of service.
I also wrote a post on BloodSugarTrampoline.com back in 2015 that was a review of a talk given my our community podiatrist on the why and what of a foot check. Link here. Here’s a another great webpage from Diabetes UK on what to expect at your annual foot exam
By Aileen C. O'Reilly
I walk a lot.
From March of last year, it has been my chosen method of dealing with this cursed pandemic and the unceremonious halt to my (up to that point) blossoming career as a travel writer.
Walking has also helped immeasurably with the daily control of my type 1 diabetes. As a person who spent years running from acknowledging that I had the condition (I got it when I was 10 and have it 39 years now) feeling fit and healthy goes a long way towards helping me realise that there is precious little you can't do with it when it's well controlled (there are a growing number of international gymnasts, marathon runners, footballers and rowers who will vouch for this).
Having diabetes is far from the life sentence it was once deemed to be - we are not invalids, we have a condition that requires we mind ourselves and eat well.
Last year I returned from a foreshortened trip to Pittsburgh and, along with everybody else, stepped through some awful looking glass into a world of facemasks, elbow bumping (still ridiculous) and the bizarre practice of sneezing guiltily into the crooks of our arms.
Walking every day helped me cope as my normal life tilted precariously on its axis. It quickly became my "thing", my Zen, my happy place, my way of dealing with stress - 8 am, sunshine or rain, I was out stomping along for 10 or 15 km.
There were no more travel events to rush off to photograph, no 5am trips to the airport to jet off to sunny climes and write about. Every day I continued my normal routine of pitching articles to features editors - every day less and less of them replied.
I felt useless.
While my initial goal in walking had been physical fitness this was quickly surpassed by the mental health benefits of communing daily with nature - there is nothing quite so soothing to a troubled mind as the cheep of ducks at your feet while the rain gently falls on lily pads at a quiet canal bank or the sun rising majestically on a frosty morning as you sit on the sweeping steps of Castletown House in Co. Kildare, the lichen covered facade blushed pink as if painted by Manet.
… and then in December I was unceremoniously stopped in my tracks…
All of a sudden, I had a pronounced limp, and the stairs was transformed into an extremely painful Kilimanjaro (going up was bad enough but coming back down was intolerable). I'm not a fan of painkillers either and suddenly I was desperately swallowing extra-strength Brufen and wondering why they didn't appear to be working.
What the hell was wrong with my foot? I hadn't fallen or hit it so it couldn't possibly be broken (I had broken toes before, so I knew what that felt like).
Initially of course I was oblivious to how serious a matter this would turn out to be. I naturally consulted Dr. Google at 3 am when a visit to the bathroom elicited howls of pain as I tried to hobble the short distance.
An emergency appointment with my podiatrist followed quickly by x-rays and an MRI revealed not only that I had fractured 3 of my 5 metatarsals but that I had developed the diabetic condition known as Charcot foot.
For the uninitiated among you Charcot foot is a serious complication that can affect people with diabetes with peripheral neuropathy. Charcot affects the bones, joints, and soft tissues of the foot or ankle. The bones become soft and can break and the joints in the foot or ankle can dislocate.
Put simply - in my daily efforts to catch up with the racing of my mind, my bones had softened and quietly fractured - the existing nerve damage had apparently dulled the pain to a very large extent.
I didn't deal with the news about my own Charcot foot very well. I stared balefully at my orthopaedic surgeon as he told me I needed a half leg cast for a minimum of 6 weeks non-weight-bearing.
"and will that fix it so I can get back to my walking?" I gasped, wondering how in the name of God I was going to cope without my daily escape.
"Wearing a cast is what we call the Gold Star treatment, but it can take months for this to heal" he quietly cautioned shaking his head, "on the plus side there is no bone displacement visible in the x-ray so it looks like we caught it early which is good. Come back to me in 6 weeks and we'll see how it's progressing.
In a daze I limped down to the cast setting room where a lovely chatty nurse encased my lower left leg in a fibreglass cast for the foreseeable future - at least I had a choice of colours and went for the most lurid bubblegum pink as a badge of my swiftly gathering defiance.
Next it was time to get my crutches and it was at this point that the non-weight-bearing aspect of the nightmare hit home and became crystal clear - non-weight bearing, I realised, meant the cast couldn't touch the floor...
I live in a 2-storey house. How the hell was I supposed to get up and down the stairs on crutches? How could I carry a cup of tea? Food?
After a cursory training session in a corridor full of the walking wounded, I was dispatched as the next patient at the top of a long queue hobbled up to the overworked physio - it took me 25 minutes to get to the hospital's main entrance. It normally takes me 3.
My sister drove me home, offering help and support and reminding me she only lived 200 yards away if I needed anything at all. By the time we got back to my house and I fumbled to get out of the car I was in tears, angry, frustrated tears brought on by the vision of what could quite possibly be months of enforced dependency - something I have spent years fighting. I made it indoors before I fell on the sofa exhausted, flung the crutches across the room and howled, screamed at my sister about the injustice of it all and generally berated her because she didn't have a clue what I was going through (because she had the cheek to be standing there on two working legs). After she beat a hasty retreat, I gave in to my sense of utter helplessness and cried and cried and cried some more.
She returned later that evening armed with a rather extensive care package - shopping, a heavy-duty waterproof cast cover I could wear in the shower and, inspiringly, a large thermos which would cater to my caffeine addiction without causing howls and further crutch hurling.
In the meantime, my brain had calmed enough for me to realise that if I took the padding out of my velcro strapped surgical boot and just wore the frame over my cast I could hobble up and downstairs and in and out of the kitchen safely without crutches (I rang my surgeon to check if this was acceptable and felt the joy of a minor victory when he agreed it was a rather novel idea). The showerproof bag also fitted over the surgical boot, so showering was far easier too.
I ensconced myself on the sofa with several knitting projects lined up, ordered the most colourful wools from my good friend Bernie at The Glass Doll craft shop and started knitting flower corsages whilst watching Sky Arts documentaries on cinema, painting, sculpture, and writers.
At least if I was forced to sit around I could assimilate large tracts of interesting information with which to impress people at dinner parties when they were finally permitted again…. especially as lack of social interaction was turning my brain to wet sponge cake.
By week 2, I was having long motivational chats with my encased foot, telling it things were going to be fine and we would be out walking again before we knew it.
… at this point I started worrying about my sanity and decided it was time to rejoin the human race in some shape or form, so I rented an all-terrain knee scooter.
It arrived at lunchtime 2 days later (you can rent them plus a variety of mobility aids by the week from mobility Ireland) and after quickly assembling it (a 5-minute job) I sallied forth through my estate enroute to the garage to stock up on provisions and truly reveling in the sense of independence I had recaptured.
Despite having quite a high level of fitness from all my walking I was exhausted after 200 yards and had serious thigh cramp in my bent leg - none of this was helped when I encountered a 3 year old on her scooter who freely admonished me for not wearing my helmet but proceeded to challenge me to a race on my "funny" scooter….
Her mum apologised profusely while I was eyed disparagingly from beneath a floral lopsided helmet. By the time I made it to the garage I had nearly gone over the handlebars 4 times and realised Minnie the Moocher probably had a valid point.
~~~~~~~~~~~~~~~~~~~
Thank you so much Aileen for sharing your journey with us. Part 2 of Running to Standstill will follow soon.
Aileen was diagnosed with type 1 diabetes almost 40 years ago at age 10 years and is a travel, health and features writer (Travel Extra, Herald, Irish Times and Irish Examiner).
Aileen set up a knitwear label, Crack'd Bird Designs during lockdown as a form of colour therapy and creativity which she desperately needed to give her a daily sense of achievement.
Aileen has written previous posts for Thriveabetes, which details overcoming the diabetes related health issues and I’m happy to report her career has found its track again.
Diabetes Education needs more Carrot and Far less Horror stick
Toe-ing the Line Part 1 - Diabetes Can, Sometimes, Get in the Way but It Doesn’t have to Stop You
Toe-ing the Line Part 2
Irish Examiner - Putting it all on the table - Diabetes, eating disorder, depression, cancer
I’m launching our Summer Series of Super People with diabetes living in Ireland with my friend and fellow Clare blow-in Erin Dolan.
Erin is a certified Health Coach based in West Clare, mother of two, world traveler and person with type 1 diabetes. She shared some of her diabetes life in a 2019 blog post here where she talked about the difficult battle, especially as a kid, feeling different from everyone else but then making it a way of life becoming active in the community to make your stronger mentally
In this post, she talks about why she has decided to devote more time in her busy life (did I mention she also works part time for a company in Galway) to helping people with diabetes through coaching.
The story for many people with diabetes begins with the initial diagnosis shock – “…you have diabetes!” Just when you’re overcoming the shock, you get a quick introduction on how a pancreas works and how your pancreas does NOT work. Part of your diabetes 101 briefing consists of managing your “new” diet (without much detail) and injecting yourself with insulin. If you’re lucky, you meet with a dietitian to learn about carb counting and insulin ratio (Huh?!). Finally, you are sent home to handle this complex disease on your own with very little follow-up support.
Quickly you realise there is more to diabetes than just testing your blood glucose. What about – dealing with the daily stress of diabetes, accepting diabetes as part of your life, or trying to cook “diabetic-friendly” meals? It would be great if your diabetes consultant listened to you more, maybe asking you what you want or need. Instead of telling you what to do, what if your consultant gave you guidance on how to get there? There is a huge gap in diabetes healthcare with guiding diabetics to achieve their goals. Additionally, emotional well-being and diabetes is often overlooked. So, I became a health coach to bridge this gap and provide a 360o approach to diabetes support.
I have lived with type 1 diabetes for 30 years and have experienced the stress, mental burnout and diet struggles from diabetes. During my first few years of diabetes, I lacked confidence in myself trying to hide my diabetes from others and just wanted to live a “normal” life. I have overcome these challenges, and it has pushed me to achieve ambitious goals like cycling over 4,000 km across Central America and backpacking through Europe and Asia. I learned to embrace my diabetes while making my health and happiness a priority. It would have been great if my healthcare team gave me the “real” diabetes crash course at the start. This desire encouraged me to become a health coach and fulfil my passion for helping people with diabetes lead a healthy and stress-free life.
A diabetes health coach helps clarify and achieve your goals and put your doctor’s advice into action. A diabetes health coach is like your accountability partner guiding you to make realistic, lasting changes. As a diabetes health coach, I offer customised programmes for all types of diabetics. Like individuals, diabetes is not one size fits all, and that’s why the consultation or programme is customised to fit your diabetic health goals. I support the whole diabetic rather than one aspect of diabetes to bring about healthier lifestyle changes for the long term.
So, what does this mean? It means that as a diabetes health coach, I support you with all the extra diabetes things that your doctors don’t cover like
Finding foods and cooking exciting meals that don’t spike your blood glucose
Understanding the confusing nutritional labels on food packaging
Making smart choices with eating out
Curbing your sugar cravings
Implementing an exercise routine to lose weight or stabilise glucose levels
Finding the confidence to self-manage your diabetes in a positive way
Reducing STRESS, so it doesn’t impact your blood glucose
Diabetes doesn’t have to hold you back from living a life you love. My main goal as a diabetes health coach is to empower people with diabetes and help them overcome emotional barriers. My services include personalised nutrition programmes and group or one-to-one consultations. Each virtual coaching session is 60-minutes and will identify specific areas of your diabetes that need some love and attention. All sessions include email support and an online resource folder to manage your personal diabetes goals.
Check out my website to learn more about me, my services and my blog at www.crazyaboutdiabetes.com. Be sure to follow me on Instagram @crazyaboutdiabetes for recipes and other fun diabetes bits!
Erin Dolan, Diabetes Health Coach
+353 87 705 3922
www.crazyaboutdiabetes crazyaboutdiabetes@gmail.com @crazyaboutdiabetes
I really enjoy Erin’s videos and posts on her instagram and Facebook pages especially on some of the things we don’t really think about anymore because we consider them normal now.
I hope to feature more people living with diabetes over the summer months in written form but also in recorded interviews. If you would be interested in sharing your diabetes story please contact me via email at Grainne@Thriveabetes.ie
