My Diabetes Story
Hi December (2023) How is it nearly Christmas? Anyway let’s get to it. If you didn’t already know in this year in June (28th to exact) I was diagnosed with Type 1 Diabetes.
I started writing this post a month or so after I was diagnosed. In reality that was too soon to take everything into account and there has been many challenges along the way.
That first month was a whirlwind (life still is) and after finally discovering that my pancreas had given up the ghost and my body needed regular injections of insulin to survive I felt a million times better. But things soon become really bloody hard. So here’s my story some five months into this mad journey. I hope at least someone might find this useful. It’s pretty in-depth (approx 12 minutes) so settle in...
Diagnosis 🤒🤕 #
So I guess the first thing you want to know is how was I first diagnosed? There are four main symptoms for potential diabetes known as the four T’s (thirsty, tired, toilet and thin). The only one that I recognised initially was thin. I’d lost a stone fairly rapidly and after a weekend in London that left me feeling exhausted I decided to do something about it. Looking back all I wanted was sugar it turns out I was craving it because my body was getting very little.
So with that in my head I took myself to the doctors who luckily managed to fit me in on the same day (Monday). Initial consultation usual questions. With that I was asked to provide a urine sample and to come back for blood tests on Wednesday. Urine sample delivered and bloods drawn I returned home for a spot of lunch. Within ten minutes of sitting down it was the practice nurse on the phone to say she’d dipped my urine and that it showed high levels of glucose (turns out you don’t want this in your piss nor should there be any signs of Ketones 🤕). A short drive later and my first of soon to be many finger pricks returned a blood glucose level of 29.9 mmol/l. With that I was dispatched to Gloucester Royal (suspected ketoacidosis a pretty serious complication. Two hours of fluids later and a shot of Insulin that was it… “I was diabetic. Welcome to club!”
As for the other T’s, at the time I really didn’t put two and two together but looking back I was definitely drinking much more and not only that, craved sugary drinks like hot chocolate. I also went mad for fruity cider. I was also more tired though I just put this one down to just getting old and working too hard. I remember moaning to my dad at one point “Is this what being old is like? I fucking ache all the time” or along those line. All pretty damn obvious now looking back. Also when I look back at photos my face was always red and blotchy.
I often wonder how long this had been going on for, it seems red face pics start around December last year but I guess we will never know? How long can you live diagnosed I guess you can in theory being type 2 for a while?
Information overload 🩸💉 #
After a night in my own bed it was back to Gloucester Royal to meet my specialist and diabetic nurses for my induction into my new world of diabetes. The amount of information that you need to grasp is overwhelming; finger pricking for both glucose and ketones and what are considered normal/dangerous levels, insulin doses basal (daily jab) bolus (jab to account for carbs in meals), what foods to avoid, how to treat a hypo (when your levels go low), driving and informing the DVLA, how to decipher food packaging. What do I do with a prescription (first time in 38 years getting my own)? What forms do I need? The list goes on. Thank god for the NHS and not having to pay for any of this!
So that was my first week of diabetes… In at the deep end! It felt like “Here you go Richard here’s the basics, crack on” a bit like starting a really complicated job with the bare minimum of information and training but it’s your body and life that your in command of I guess the reality is it is life of death if you do get it wrong - pretty scary stuff. Until you have to deliver your own insulin you really don't appreciate what an amazing job the body does at keeping you in check!
This is shortly followed by learning to count carbs and understanding what’s in your food and how this all then effects your blood glucose levels. After not really paying too much attention to what fueled me for 38 years things were about to get interesting.
As mentioned at the start once on insulin I soon started to feel much more like the normal me. You soon learn that bodies are incredible at trying to sort themselves out and it was soon going to struggle to adapt from being a body full to the brim of sugar to one that returned to something more like normal in a reasonably quick time so what have been the struggles along the way. I feel like I’m actually managing the diabetes side pretty well it’s the other aspects (the ones that aren’t really discussed) that are proving much more of a challenge.
To be fair my first big one was not taking it easy. It can’t be underestimated quite how hard diabetes is. Looking back being right in the middle of a complex project with a tight deadline for the end of July whilst at the same time trying to grasp this completely life changing condition didn’t help mu my cause. It’s no wonder that come September I was absolutely exhausted and burnt out - it's always when you stop isn't it?
Also thinking I was still the same person with the same energy levels as before was a little naive (hindsight is a wonderful thing). Maybe some of the below wouldn’t presented themselves if I would respected/understood the condition more. I think you see other diabetics going about their lives “normally” and presume “oh it’s only diabetes it’s all manageable” (not true)
What is wrong with me legs and feet? 🦶🦵 #
Early in August I remember the day vividly. I remember thinking “What is wrong with my legs?” there was a weird ache that I’d not experienced before. I gave it a couple of weeks (more like a month) in the hope that things would improve. But it got to a point where it was impacting my ability to walk, there were days that I remember feeling like an old man whilst attempting to walk even a short distance. It got too much, so it was back to the GP who arranged to see the practice diabetic nurse. She did the usual checks for diabetic neuropathy but said there was no issues with nerves or circulation and thought it was my body adjusting to the change.
Things were still no better come the start of of November so I tried a private GP who seemed to think it was a foot/leg injury and that I should see a Podiatrist/Physio. I’ve since seen both and after three weeks of physio they do seem to be better still by no means perfect but I have more good days than bad, so fingers crossed in a few weeks they will improve further.
Sleep 💤🛌 #
A knock on effect of the above, plus I think the anxiety of a potential night time hypo led to sleep issues (I soon learnt that I hate coke, jelly babies in the middle of the night). I’ve never had issues with sleep previously getting at least 8 hours a night. September saw something like 5 hours average, with regular 3am wake ups for a couple of hours. This then throws out the whole of the rest of your day and makes you feel shit through the rest of the day effecting your concentration and ability to get anything done. Thankfully I slowly seem to be getting into a better routine and have recently adjusted my daily injection which has really helped me to keep a steady level throughout the night and avoid hypos most nights.
My relationship with food 🥘 🍔 #
Apart from the obvious adjustment required to try and live a somewhat normal life ie. Reducing the amount of “instant” release added sugar stuff (unless required for a hypo). So no more share bags of chocolate in an evening, no more full fat coke (massive sigh), handfuls of biscuits with my tea. Though I’ve been surprised at my self control and that I can actually eat a sensible amount of chocolate without smashing a family sized bar in on hit. I also don’t crave that sugar hit so much anymore. I guess in reality it’s going to be more healthy for me in the long run but it still doesn’t stop me missing those treats.
At first I cut these things out completely but as time went on I realised that you can still have them but in moderation (coke and jelly babies aside). I mean no one enjoys low sugar chocolate do they? For me I’ve found I can get alway with 10/20g without any insulin. I also try and time my treats for when my level are sensibly in range. Not much point having a couple of biscuits if you’re sailing along at 12/15. As with a lot of this it’s taking a common sense approach.
One thing I have noticed is my relationship with food has massively shifted. I mean I used to love bread but sandwiches seems to make me gag nowadays, especially when it comes to breakfast sandwiches which I used to adore. I’m not sure if this is a mental thing as I’ve found that bread in whatever form is one thing that sends my sugars high and quickly. I should probably try and find an alternative but it’s always been the quick lunch fix and seems like the only thing you can seem to find especially when you are on the go! I also found I didn’t want to eat so much anymore.
The best thing you can do is try and prepare you meals ahead. Especially when it comes to lunches, once your in town with only quick options available it can be tricky to find things that will work. Especially when everything seems to be full of sugar, it’s actually crazy once you start looking in supermarkets how much "shit" is in EVERYTHING!
Obsessed by numbers 📈📊 #
After a couple of months once my blood test to actually confirm the diagnosis as type 1 was confirmed. I was finally prescribed my Freestyle Libre. This is a little sensor that goes in your arm and can track live your glucose levels. This is life changing but if like me you are a big fan of data and numbers it can quickly become overwhelming and addictive. Also being pretty competitive means I’m constantly striving to keep within my current target range of 4-10. I guess this could be seen as a positive but it can become a bit of an obsession and I think it is important to find a healthy balance between staying in range and not being obsessed by the numbers.
Initially I was worried about spikes but over time I’ve slowly accepted these as the norm. I think unless you fully go no or low carbs (something I really can’t bring myself to do) then these are inevitable. It’s then a case of finding which cause the spikes (so high GI stuff) and trying to bolus accordingly and at the right time. As an example I initially stopped Crunchy Nut Cornflakes in the morning due to the spike but I’ve recently discover 40g (top tip get some digital scales for portion control) doesn’t send me much above 13/14 with my levels returning to a normal range within a few hours. As with everything it’s all learning and I can’t forget it is still early days.
You’ll also be given “numbers to target” (see below) before and after a meal before you go to bed, when you wake up. In my opinion these are unrealistic. I’m not sure I ever get anywhere close well not consistently. I mean my levels are up and down and literally all over the shop with very little consistency (See above). I think that giving a blanket range across the board for everyone is unhelpful. The reality is everyone is going to be different and there are literally so many contributing factors that can influence these numbers. I think as long as you are trying your best (as with anything in life) what more can you do?
|Target Levels by Type
|Before meals (pre prandial)
|At least 90 minutes after meals (post prandial)
|4.0 to 5.9 mmol/L
|under 7.8 mmol/L
|Type 2 diabetes
|4 to 7 mmol/L
|under 8.5 mmol/L
|Type 1 diabetes
|5 to 7 mmol/L
|4 to 7 mmol/L
|5 to 9 mmol/L
|Children w/ type 1 diabetes
|4 to 7 mmol/L
|4 to 7 mmol/L
|5 to 9 mmol/L
For context my current time in range is 81% so I’ll take that. With 5% > 13.3 and 14% > 10.1 to 1.3 accounting for my carb intake (maybe it could improved with a more accurate carb/insulin ratio 🤷♂️)
Mental health 🧠😶🌫️ #
It’s not really a surprise but over the past few months, I’ve really struggled with my mental health. Coming to terms with the diagnosis and the new way of life has been hard. There is a huge element of grief/trauma involved in terms of wishing for the life I had before when I didn’t have a zillion decisions to make in a day (planning ahead, actually considering what I am going to eat and how it will effect me, making sure I remember to take my insulin everywhere etc etc).
After the initial learning period, comes the reality that this is now for life and there will be no going back. It really does take its toll! Added on top the debilitating pain issues which in the grand scheme of things have been the by far the worst aspect of the whole saga.
Having felt like I am invincible for 38 years to suddenly be presented with a constant pain is absolutely zero fun and really starts to effect your ability to function normally. Even more so when you are trying to keep a small business functioning. The physio seems to be really helping but is there and end to this or is this me for life now?
I'm in a lucky position where by I can afford to see a private counselor which is really helping me with both my diganosis and other general life stresses. I am currently 4 sessions in and things seem to be going really well. It’s been really cathartic to just have someone to offload on. Living alone means I've dealt with alot of the above by myself and in my own head wondering what I doing wrong, getting frustrated when I get things wrong with no shoulder to cry.
Where is the support? 💪😓 #
With all the above in mind it does make you wonder where the support is for coping with the mental side of a new diagnosis. A a lot of the health care support is purely based on what are your numbers and targeting things such as your HbA1c. I think that what is really lacking is any kind of mental health support for dealing with how this really does impact your way of life. There should be more emphasis on improving the quality of life element and less on numbers and targets (much like most of life).
Few other things (for those in the same boat)… #
With all the finger pricks and four/five injections a day it’s inevitable that you will feel like a pin cushion and sometimes that injection just doesn’t go in nicely. Oh and all needles aren’t the same I really hated GlucoRx Finepoint but was told that all needles are the same but once I swapped back to Omnican I didn’t want to avoid injections and 95% they are pain free. Find what works for you and listen to your body, you’ll know what is working and what isn’t much more than your health care team (I’m not knocking them as they do a fantastic job)!
Along the way you will make mistakes - that’s ok try not stress just try and learn from it (write down) where you went wrong for next time.
I’m lucky in that I’ve got two close friends who are also Type 1 so it’s been great to have them to bounce ideas off and ask questions of thank you to Pete and Slap ❤️. Also Twitter/X has been a great source of help if you find the right crowd try the relevant hashtags #GBDoc seems to be pretty good. Plus the website and forum at diabetes.org.uk is a fantastic resource, they also do a great little free booklet that explains Type 1 diabetes with all the key information in really easy to digest form. Carbs and cals book and app are really great introduction to how much carbs are in popular dishes/food with pictures of varying portion sizes which really helped me initially.
Like I said at the start…pretty in depth. But hopefully it gives an insight into the life of a newly diagnosed diabetic and the struggles along the way obviously these are unique to me and EVERONE will be different. I am by no means an expert on this it purely what I felt and experienced on this mad journey thus far. Someone on Twitter said it took them five years to adjust to life with it so the road ahead looks like it could be a lengthy one.
Thanks for sticking with me I got this (although some days it doesn’t feel like it)💪 I’m always free for questions and open to a diabetic based chat.