Welcome to part 2 of Aileen O’Reilly’s guest post on her diagnosis of, processing and recovery from Charcot’s foot but she also talks about the challenges this presented as someone also living with diabulimia.
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.
Running to Standstill – Part 2
By Aileen C. O'Reilly
After 6 weeks I returned to my specialist and was thrilled to be informed that my bones "looked good".
When you're in the midst of a Charcot foot trauma these two words are equitable to a six-figure lottery win. I could feel several deeply rooted fears evaporate as I quietly marvelled at my foot's ability to repair itself despite all the shouting and screaming and impatience, I had hurled at it.
My joy was soon doubled when I was told I didn't need to wear the cast anymore. However, this was quickly followed by the further news that I would need to be non-weight bearing for 6 more weeks…
Temporarily putting on my grown-up head I asked my specialist what course of action he would recommend at this point as I needed the best outcome in order to be able to return to my walking as soon as possible.
Twenty minutes later I left the hospital with my left leg swathed in a fresh bright pink cast and the knowledge that "this could take months to heal” had become just 6 more weeks. I was hugely cheered by the fact that my bones, which had so silently fractured, were now quietly healing.
Without doubt the biggest challenge I faced during all of this was the re-emergence of the internal struggle which I have battled for years - Diabulimia. I say "battled" - I willingly gave in to it and kidded myself that I was controlling my diabetes as opposed to encouraging my own skewed perceptions to control and damage me.
Insulin, to my mind, was the root of all evil.
From the age of 21, I have tried to keep my insulin levels low as I was diagnosed in the early 80's when the prevailing doctrine was that you took a set level of insulin and fed it all day long. Not being hungry had nothing to do with it - you spent your day snacking. Injecting "adequate" amounts of fast acting insulin had left me permanently hungry and cranky and sleepy and rapidly gaining weight. Insulin, to my mind, was the root of all evil. Diabulimia is awful. It leaves you in a constant state of self-loathing, exhaustion and hating yet craving food.
These days, thanks to ongoing education and the wisdom only hard-earned experience can imbue, I eat healthily, carb count and use exercise to achieve better control of both my blood sugars AND my demons.
After years of fighting my body, I can honestly say that nowadays mushroom, cheese and pepper omelettes and salads are my answers to the majority of my dietary problems - however I shall be doing a more in-depth blog on the psychological nightmare that is Diabulimia very soon as it is the hidden and insidious eating disorder which more and more type 1 diabetics are having to deal with on a daily basis.
So, forced to a complete standstill, I panicked - my body still had the same appetite as it usually did despite the fact that walking had been removed from the equation. It didn't take very long for my old demon to rear its ugly head - "if you're not exercising, if you're sitting on your ass all day then you are going to be F. A. T. by the time you get through this" it taunted me.
Thankfully, I felt some measure of release with the use of the knee scooter as one kilometre on that thing left me more physically exhausted than any 20km trek ever could (exhausted enough to quiet the demon too).
I quickly set about establishing a new daily routine and refused to let myself waver - up early, shower, very loud dance music blaring, make bed, have breakfast, go out on knee scooter to shops, return and knit (scarves, headbands, floral corsages, floral dog collars).
I set up my ‘Crack'd, Bird Designs’ knitwear label and then a Facebook page with photographs of my growing range of creations.
‘Crack'd, Bird Designs’ knitwear by Aileen O’Reilly
Basically, I decided to redirect my obsessive urge for control which had fuelled my Diabulimia for 20 odd years - I started using that drive to help myself and forge positive habits day after day after day until I got through this hiatus which I constantly reminded myself was only temporary.
Everyone else was in lockdown - I was still on track to walk out of it with them.
April 21st finally arrived - "Trainer Day"! Woooooohoooooo! The day I finally walked out of the house in matching runners, waved blithely to my neighbours as I marched past, finally got back into my stride, and blew off 4 months of accumulated cobwebs. Freedom!
In anticipation of this momentous event (and as a means of never forgetting what I had gone through) I gathered together all my jeans which had had their left leg unceremoniously ripped open to accommodate my cast and I sewed them up using brightly coloured wools (my own take on the Japanese art of Kitsugi which involves mending broken pottery with liquid gold so the crack becomes part of the piece's history as opposed to something which is invisibly mended). I'm rubbish at sewing anyway so this seemed like the logical alternative.
I had taken the added precaution over the previous 2 weeks of walking around the house barefoot in the evenings to give both my foot and my ankle some unrestricted exercise as my specialist had warned me that the ligaments, tendons, and muscles would have atrophied after so long in a cast and a rigid surgical boot - my ankle was surprisingly fine. I went up and down the stairs without any problems both barefoot and in my trainers.
Everything felt 100% normal.
The feeling of putting 2 matching trainers on again was indescribable. My foot looked perfect, no tell-tale signs of any trauma (2 small toes missing but all the healthier for that). I had dreamt of this moment for months, worked towards it. The country was coming out of lockdown, and I aimed to be out there front and centre enjoying every minute of it.
I walked outside into the sunny morning, heard the birds, felt the sun on my skin, the air in my lungs and...
Inside of 100 yards I knew something was wrong. Pain shot up the back of my ankle, I started limping. I was in agony.
I breathed deeply and told myself to walk more slowly. It was a shock that was all. The muscles were just stiff. Walking towards the leafy entrance to my estate I knew it was pointless. I sat on the wall as my dream of freedom evaporated in front of my eyes. It took me 10 minutes to retrace my steps back to the house, wincing with every limping footfall.
10 minutes later again my foot was elevated with an ice pack while my mind raced. Surely to God I couldn't possibly have refractured it in that short walk!? I gingerly tried to put it to the floor and stand - I howled and looked at how my ankle had morphed into a small football.
The walls started to close in as visions of a further 6 weeks in a cast bloomed grotesquely in my mind's eye. Memories came back to me of my specialist cautioning that this condition could take months to heal. I remembered how happy I had been only the previous day as I handed back my mobility knee scooter. What if I needed it again??
I spent the remainder of the day desperately ringing to try and talk to the hospital's physiotherapist who I had not been transferred over to yet, bringing forward my appointment with my specialist (not due for another 2 weeks) and as per usual Googling "is chronic pain normal after wearing a surgical boot for a fractured foot?" According to Dr. Google chances were I was one of those unlucky people who would be in chronic pain for the rest of their days...
Needless to say, at this point there was quite a lot of swearing and crying and general angst venting before I marshalled my emotions and had the bright idea of ringing someone on my orthopaedic team. That at least secured me an appointment a week earlier - any more immediate attention would require a trip to A&E.
I decided to sleep on it before I committed to a one-way trip to downtown Beirut.
Thankfully a rather circumspect and hassled physio rang me the next morning after I had blocked her inbox with frantic messages the previous day. "Were you referred to us? I've no record of any appointment or anything here". I explained the situation and how I'd been told I could finally get back into my trainers after getting rid of my surgical boot.
Her exasperated response was immediate… "Who in the name of God told you could do that!!!??? Of course, you're in bloody agony!!!" Suffice to say we had a protracted chat about ankle strengthening exercises and the importance of physio for regaining the use of my ankle which had basically forgotten what to do.
The following day I sallied forth again in my matching trainers - this time armed with one crutch and an ankle support. While the ankle took a few days to ease out it became pain-free again relatively quickly and I was able to walk to the shops and regain some semblance of scooter/cast/surgical boot-free mobility.
I'm thrilled to say I'm now back walking again both pain and limp free - not back to my 20km a day yet but I'm happy to take my time and do it the right way without putting my foot at risk of any further trauma. I've also started wearing trainers that really support my arches now (for some reason this became quite necessary after the metatarsal bones healed) and my feet feel very comfortable again.
Just last night I walked back up the avenue to Castletown House and sat there on the steps listening to the evening chorus of birds singing excitedly as the sun quietly lingered on the intricate stone facade.
It was pure Heaven.
Thank you so much Aileen for sharing your journey with us. Part 2 of Running to Standstill will follow soon.
Type 1 Diabetes, Your Feet & Your Annual Foot Check
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 tonne of that extra work to organize a separate appointment, if done well.
The confusing part of this is by who?
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.”
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
About the Author
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.
Find more of Aileen’s Thriveabetes Posts here:
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