Type 2 Diabetes with Complications -20 years

Next up in the series of guest posts is Fenella Lemonsky

I was diagnosed by accident. I had always struggled with my weight. I had a history of multi-impulsive bulimia which meant overeating mixed with typical bulimia since adolescence. Back then we didn’t have a diabetes online community like gbdoc or NHS leads like Dr Partha Kar, DSN leads who worked across the board and engaging people with diabetes themselves whether T1 or T2. Hospital & primary care senior  managers kept their doors shut.

I was about 27 years old and went to see a gynaecologist about very heavy bleeding. At the time the heavy bleeds didn’t worry me beyond understanding dysmenorrhea. I mean T2 diabetes never ever crossed my mind. The gynae ran bloods and 6 pm December 23^rdI get a phone call to say my glucose was 28.

It was a very traumatic 24 hours although  my GP and practice nurse ( now Siobhan Harrington is CEO of Whittington Health NHS Trust) were good. However the struggle post diagnosis to get into a good Hospital consultant clinic was frustrating and upsetting. The GP believed he knew best however I had complications with mental health and found metformin very difficult. I was seen by one GP who was rude and ignored my MH difficulties with an eating disorder & emotional instability. Other GPs really got it’, the support was unconditional. However I was able to get into a good hospital consultant multidisciplinary team clinic. The consultant a tough academic was honest with a twinge of gentleness in his body language and voice. The DSN & dietician kind and never ever made me feel ashamed. I found  the podiatrists ( and still do) helpful but I had an issue  with stigma upsetting . Once arriving very early eating toast & peanut butter the podiatrist in the broom cupboard room said ‘ that won’t do your feet any good ‘ when I had my first ulcer. However it was a good move elsewhere and the best thing as  overall the diabetes podiatry service was friendly and clinically effective.

The hard inspiring work by the consultant clinical health psychologist I felt  so good but the feet problems  pushed me  over the edge. The move to a new clinic at a new hospital was a fresh brilliant start. . It was a time of huge NHS transformation in diabetes care.

I’m now in a good team at another Trust however the history is complex. A very  good MDT However podiatry whilst much better as completely different it’s very hard for me, I had really highly skilled podiatrists however they were turned into ‘operational managers’. It’s the transformation thing. The young new podiatrists will hopefully not leave for management now they have good diabetes skills.

Chronic foot ulcers & infections over the years and finding a balance with juggling multiple insulin injections. Then adherence and finger pricking. Sliding scales, Victoza in the mix.  Not easy however important I mention the pain consultants whose support has been outstanding. Negotiations over pain management not easy. Any higher opioids push me into delirium and dissociative states so the delicate balance of breakthrough pain relief in pain relief in chronic diabetic neuropathy important . I’ve had private health care and the luxury of consultant time without in/ out door going and the one to one privacy was a remarkable experience. However he was tough at times too ( ‘you ARE go8ng back on Lantus’….and that was painful to hear as I was told my foot ……) and it was never a walk in the park. Yet the clinical skill in NHS is outstanding however the overload of diabetes services is huge, the growing Type 2 Group only means more hospitals will have to think about how they support and empower earlier on. The employment of peer support like in mental health should not be discounted. In mental health this has been going on for years successfully.

I had a successful NHS career in both academic and NHS Trust / DoH work. I effected changes locally and worked with corporate teams who I had mutual respect for . It was a huge shift to give that up . Coming from progressive MH work with brilliant teams to now  just referred back into a specialist personality disorder service due to the complex trauma.

I was unfortunately diagnosed with osteomyelitis & sepsis last year and had my big right toe amputated. A huge shock as my blood glucose levels were very good. HBA1cs of 7-9. However I know it was the 15 odd years catching up . The add on of retinopathy and eye bleeds was the most frightening however an outstanding team support me and the nurse specialist there and her team smile as I arrive with a bag of chocolates. Can only be in diabetic retinopathy clinic. The consultant does international aid work in his own time training nurses & doctors abroad in war zones. He smiles as he walks up the corridor saying ‘ hi!’ with a cheeky grin. In the room he says ‘ can I see your app please .’ Blood glucose results. He’s bothered .

Finding myself on dark days eating the foods that spike my glucose and I shovel in extra novorapid & lantus however the support around me keeps me going .

A very last but not least mention to the community nurses who look after my feet in the week.  I’m about to start on the Freestyle Libre. Not cheap but I’m so anxious to prevent further deterioration. The online buzz around this important tech is inspiring. So yes I’m not on a pump but I still need tight control. It will help. Huge thanks to you all. Each and every one of you.

Thanks for reading this.

IV AB Day 5 – Flying Solo

 

 

Day 5 saw me flying solo with my IV and self-administering for the first time on my own at home.

Nothing to report.

Everything went to plan and was uneventful.

Which is good.

I made sure that I was on my own so that I had no distractions.

I did take a longer time to set it up than when supervised at the hospital.

Doing this for the first time I guess I checked everything 3-4 times more than needed.

But I do understand that this is serious shit and that getting it wrong could cause me additional issues that could at least be a pain in the arse……

 

Again, this reminded me of my Diabetes diagnosis and the first injection that I did on my own when I got home……

Everything went to plan and was uneventful.

Which was good.

I made sure that I was on my own so that I had no distractions.

I did take a longer time to set it up than when supervised at the hospital.

Doing this for the first time I guess I checked everything 3-4 times more than needed.

 

I think that these are both like driving a car.

You are shown how to drive.

You get behind the wheel under supervision.

You learn and become more confident.

You pass your test and get released into the world to drive on your own.

Your first trips out unsupervised are hesitant and you double-check every move and maneuver.

With experience your confidence builds.

It becomes second nature.

Before you know it, you are driving with the music blaring, your arm out of the window and your feet on the dashboard……….

 

As I carry on with my DIY IV I will get quicker.

It will become second nature.

It will become more familiar.

However, I must ensure that familiarity does not breed contempt.

That it does not lead to mistakes or errors.

 

Live Long and Bolus.

Grumps.

 

IV AB Day 4 – Released into the Wild

The plan for today:

• Get new cannula (Mid-Line) fitted by DR
• Set-up own drip again
• Get dripped (is that a thing?…)
• Bugger off home for Sunday roast!

Had a longer wait today as I needed to see the Doctor to put in the “Mid-Line” cannula.

Why does it need a Doctor I wondered?…

Well, as I found out, because its fucking long!…..

This is the original Standard cannula. It needs to be changed every 3-5 days. It is also in a bloody annoying and inconvenient place!

Because I will be on IV daily for at least 6 weeks I was offered a “Mid-Line” cannula that can stay in place for at least 3 months. Sounded good to me so I agreed.

When I was called in I was asked to lie on the bed type thing.

The Doctor comes in and tells me about this thing…..

“I will insert it here (pointing at the place my bicep should be) and it will go in your vein up to here (pointing just below my shoulder)”.

“Okay” my mouth said.

“OH FUCK!” my brain whispered….

The Doctor proceeds.

Uses an ultrasound scanner to find the best route.

Unpacks his sterile gown.

Puts a sterile sheet thing with a hole in it over the insertion area (stop sniggering please).

Injects my arm with local anaesthetic (Oh. Numb left hand. Useful…..)

Sticks in a big needle thing.

Feeds in what seems like 123 metes of cannula.

Withdraws inserter (he told me it was a safe method…)

All done!

 

I have to be honest, this is 100 times more comfortable than the other one.

I can bend my arm ok without catching the cannula.

So even though it was a prolonged procedure it was worth the wait.

After that I set-up my IV as I did yesterday and got my daily dose.

 

Bonus for the day?

I got given everything I need for the next 7 days to do this solo.

I need to go back every Sunday, get my bloods taken and pick up the next week’s supplies.

The guys at my hospital have been fantastic!

The extra time that they have taken in teaching me to do this on my own allows me to continue to live my life how I need to and ultimately earn a living.

So, tomorrow I fly solo.

But that’s another blog post….

Live Long and Bolus

Grumps.

IV AB Day 3 – Under Scrutiny

I’m going to try and keep these short and quite soon I expect them to stop.

Once I’m up and running on my own this will just become part of my daily routine and there will be no story to tell.

So, the plan for today was….

• Go to Ambulatory Care
• Prepare my own IV drip, under supervision
• Get a longer term (up to 3 months) cannula inserted

As soon as I walked in I could see that there were only two staff in and a lot of people waiting for treatment, so I know I’d have a bit of a wait. This is fine with me. People are getting the care and attention that they need so I will never mind waiting my turn.

The nurse calls me in when it’s my turn. “were you hoping to be trained how to do this today as we are short on staff and it takes a long time to do”.

This is not really what I wanted to hear as I’m impatient to get signed off and let loose with IV in the wild.

I explain that the plan was for me to do the setup but I totally understood if it’s not possible. However, I was on the clock a bit with this as ideally, I would be going away for work on Tuesday (3 days’ time). I explained that I have already had the process explained and was ready to try myself.

“Ok, let’s see if you can recall any of the steps with all of this then” …

Yesterday I found it easy to remember what to do. Having been around syringes, sharps and solutions it had all felt very familiar to me. So, I rattled off the process step by step without hesitation.

“Oh, you did remember well! How do you feel about trying to do it yourself or would you like to be shown a few more times?”

My reply “Well, you won’t let me go it alone with this stuff if I don’t will you? I’ll do it now”

Sudden flash back to the week I was diagnosed almost 24 years ago.

A nurse comes to do my pre-meal injection (syringe back in those days).

“We will show you how to do this as many times as you need and then when you feel ready you can try yourself”.

Grumps – “I’ll do it now please”

Nurse – “Are you sure you are ready?”

Grumps – “Will I you let me out of here until I can do this myself?”

Nurse – “Well. No…..”

Grumps – “Then please pass me that syringe”

Clearly, I haven’t changed in the last 24 years.

I am still a stubborn bastard!

Everything went to plan an I started myself in my very first #DIYIV

Unfortunately, there was no Doctor available to do the cannula insertion but that has been moved to tomorrow.

At least it will give me something to write for Day ……..

Live Long and Bolus

Grumps.

Starting on IV – Days 1 &2

I’ve never written a diary.

Nope.

Never.

It’s not really me, is it?

I don’t need to write down my feelings. In fact I try to never have any…..

I don’t really have private thoughts. I tend to spew them about on social media.

However, I have decided to document the next chapter of the treatment of my foot issues on this blog.

Why?

Simple really.

At some point, someone about to start on daily IV antibiotics may stumble across this and it may have some information that helps them along their own journey.

I think of it as possible future peer support……

A short background to all of this.

A foot ulcer that has taken 10 months of treatment so far.

A fantastic team that tailor my care to my needs and life.

A list of old broken bones and trauma that I have no recollection of doing. Clearly alcohol must have been involved at some (or many) point……

So, this week I started the next chapter of this long and at times cheesy (its hard to wash a foot you have to keep dry) story. Before I was lucky enough to go to ADA in Orlando, myself and my team had agreed that the day after I got back I would start a 6-week course of daily IV antibiotics. That due to having to work away, I would be taught to self-administer these so as not to impact my life and importantly my income (no work, no money, no bills paid).

Day 1

Foot clinic first.

The ulcer was looking a bit worse for wear after a week on my feet and all that travel, but the general consensus was that it had fared well and the plan of self-care that we had agreed had worked in the main.

I was also fitted with a new offloading boot. Much more robust than the previous one and it will help aid the healing once the infections (yes, 3 to be exact) in my foot and bone have been banished. Of course, I look like a total knob! However, I managed that with ease even without foot issues so it’s not a problem.

Then, off I hobble to the Ambulatory Care Unit…..

First bit of good news was that they were expecting me and knew all about the need to self-administer.

Day 1 here was easy.

Cannula inserted.

IV drip set up.

30 min later I was on my way home to return on Day 2 for my first bit of instruction.

All that was left to do was to put on the new boot when home (you can’t drive in these things. To be honest you can barely walk in the bloody thing!), make a cup of coffee and over share the whole experience on Social Media…..

Day 2

Off I head to the hospital armed with a pad and pen!

Forcing myself to try and be a grown up always hurts but IV stuff is serious and whist I’m a dick head most of the time, this is the time to not be.

Today I was shown how to mix the antibiotics and set up the drip.

I wrote it all down step by step.

My writing is shit!

I mean, really shit.

So, had to take a bit of time to make sure I could read it later.

It’s a fairly simple process to be honest. The things I have had to do in the last 24 years that Diabetes has been living with me make it all easy to understand and there is no likelihood of me being overwhelmed with is because this just feels like and extension of what I already do….

My biggest challenge was actually to not tell myself “well that’s easy” and switch off my concentration.

With this going straight into my blood stream, I need to focus on infection control (because an infection whilst administering antibiotics for existing infections would really be taking the piss right now).

Anyway, there I am with 20 min on my hands as the drip is started.

Only one thing to do…..

Tweet it all out there…

I am very grateful for everyone’s best wishes that have been received.

For all that have voiced their concerns for me. I appreciate that too.

However, this is me, I am genuinely ok with this and this will have a successful outcome, and…..

You will have to endure endless tweets and posts about it too…

I am fully aware that my “resilience” can be my downfall. I am my own worst enemy at times as I push myself too far to prove to myself that I’m immortal. Not this time though. You don’t get rid of Grumps that easily…….

I’m back at the hospital again tomorrow, but will tell you about that, well, tomorrow.

Live Long and Bolus

Grumps.

Complications? What complications – Gwyneth’s Story

About me

Ok, where did this all begin? It all started on 10 December 1975, a date etched in my memory, the date of my diagnosis of Type 1 diabetes. My mother took me to GP ( with a urine sample) cos I’d been drinking loads. GP didn’t believe her til they tested the sample! She was told to go home and pack me a bag then take me to the children’s ward of the local hospital. So there I was at 10 years old, 15 days before Christmas being admitted to hospital.

So began the education we all know so well from the early days, injection practice with empty syringes into an orange, learning what a hypo feels like. Thankfully I didn’t spend Christmas in hospital that year (that was to come much later) but of course eating habits changed.

Complications

Where do I start? Suppose I should really start with the first complication that occurred, retinopathy. This happened when I was pregnant, I was so anal about BG control that I had slight bleeds in both eyes and as a result laser treatment in both eyes, it was fun trying to get into the relevant position on the machine when you’re 8 months pregnant, not!

That was a minor hiccup, the major stuff (I suppose you could call them major) started happening in 2008. At my annual check in the November, the podiatrist noted I wasn’t picking up some of the pin point tests she was doing so I was referred to a vascular surgeon. April 2009 saw me have an angiogram in my right leg – result was that artery in my ankle was calcified and I was losing circulation. Ok, so now I had to really watch what I was doing. I lasted 5 months when an accident in work (a chair landing on one of my toes) sent me rushing back to hospital ( by this time I had the podiatrist on speed dial). I had to have the toe amputated that September and after a lengthy process of waiting for it to heal, eventually had to have right leg amputated below knee.

So far, so good but there I was thinking it’s happened to one ankle, I wonder how long I’ve got til the other goes. I returned to work in April 2010 and I was coping well, however things took a bit of a turn in August 2011. Nasty swollen, red foot. This resulted in me losing a toe on my left foot and this seemed to be healing well until December 2011 when a 2^ndtoe turned black. The date? 19 December, guess who was in hospital that Christmas and New Year? This time having my left leg amputated below knee.

The latest complication happened in January this year (2018), I suffered a heart attack (not realising for a couple of hours that the chest pain wasn’t just indigestion). Rushed with blues and twos to local hospital, straight into the Cardiac Lab where they were successful in inserting 3 stents. Heart issue solved but kidneys threw a hissy fit about the highlighting dye they used in the procedure (kidneys had been working steadily at 30%). This caused admission to HDU, a central line going into neck & dialysis for 5 days.

Coping mechanisms

I’ll be honest sometimes it’s tough but it doesn’t stop me. I’m currently studying with Open University for  BSc (Hons) in Psychology, I’m half way through but I want to use my experiences to help others, whether it be amputees or diabetics. The story of course still isn’t finished, my kidneys currently working at about 19% and my wonderful daughter has volunteered to have tests done to see if she can be a living donor for a kidney. You could say I’m still a work in progress.

Gwyn

Type one complications – Kath’s Story

So I’ve had to give myself a little push to write this…partly as I’ve moved on and partly because it still hurts just a bit…

A bit about me…type one Diabetic since being diagnosed aged 9, so approx 34 years. Admittedly throughout my teens and early 20’s I thought I didn’t have to test my blood sugar as i felt “fine” ….of course I didn’t…that daily tiredness and feeling sluggish I just accepted was how I was meant to feel…and that the unexpected hypos when I did something different was a circle of being low, over eating and then being high but not ever really testing to enable myself to treat the high and get on a level. I pretty much only tested if I didn’t feel “right”! Thankfully after diagnoses I have only had 2 admissions through being hypoglycaemic and have to date never experienced diabetic ketoacidosis.

Attending diabetic clinics at the Gp surgery was always a bit unfulfilling to say the least… “you need to get your blood sugar levels under control” was the 3 monthly advice with no real concerted effort to say how but starting with testing would have helped and that was down to me.

So fast forward a few years and various diabetic related complaints….numerous retinopathy eye operations and laser surgeries, almost losing a toe to an infected toenail removal and then the unthinkable happened…(Not a single offered consultant appointment I might add)

“I’m 38 and I’ve had a heart attack” … this was going to be the distorted mantra that was to plague my mind for the next 6 months. (And occasionally still) Round and round it went. I was sat in hospital for 5 days waiting for an angiogram to confirm the myocardial infarction, I had been working nights for the preceding two weeks as a mental health nurse on my own in an office experiencing what I told myself was a trapped nerve…id been to the Drs 3 times, had ECGS and was simply told I was too young to be having heart problems and that it was probably anxiety..…I turned down an ambulance when I had chest pain at an evening out and drove myself to the out of hours Gp…then a lovely old school Gp took some bloods and sent me up to the hospital for a chest xray, which of course came back negative. I didn’t have raised cholesterol or high blood pressure either. The consultant was about to send me home with a confirmed trapped nerve and some Diazepam when she said” oh but we will just wait for your bloods and then send you on your way”. She actually said on her return some 90 minutes later that “that’ll teach me”… “You’ve had a heart attack and I must admit you straight away”.

So angiogram aside (which is the oddest feeling in the world…being awake and feeling something moving up inside your arm and into your heart which isn’t necessarily where you think it is!, lying bare bummed on a cold metal table that I thought I was going to fall off and hearing lots of figures being bandied around and the surgeon asking for a 2×2 (whatever it was) and the assistant coming back and saying they didn’t have one! What?! but I need one!) Recovery from that is really quick and I finally went home the next day. Then the real recovery started…being good to myself, testing my blood sugars…for a few weeks I was really convinced that all I could eat was chicken salad for the rest of my life.. I attended cardiac rehab with all the other heart surgery patients of an average age of 70 plus! The stress wasn’t helping my blood sugars at all and I decided I had to join a gym! Plus I didn’t want to die and became a little obsessed that that was going to happen imminently….depression comes with any chronic disease and I was slipping down that slope.

4 and a half years later and having stuck with the gym and starting running, also having had an insulin pump for the last 2 years has all really helped! Ive had the best Hba1c ever (it still needs improving) and last year I ran my first ever half marathon albeit at a snails pace but I did it with 30 plus other type one ‘s and had no dramas! I attended the Animas sports weekend at Loughborough which was also really valuable. If I had my time again or could have spoken to my 13 year old self id definitely have had a word with myself sooner!! There really shouldn’t be anything a diabetic can’t do !! It just takes a whole lot more planning!

Be kind to yourself is my motto these days, I didn’t ask for this blooming disease (none of us did) but I have it and I can manage it with support. Technology is immensely helpful as is the online support! So ask for help before it gets too much!

Kath

Thanks to Grumps for getting the #talkaboutcomplications  started!

Let’s not talk about it – Rachel’s Story

So let’s go back to January when I did what I normally do on a Friday. I come home from work, do my housework and then meet a friend for a coffee and cake at hers which was a short drive away from my house.

Last thing I remember is 2pm as I’d treated my low and had sat down and eaten my lunch taking a bit less insulin as I was low. Normal procedure for me on a Friday as normally my blood sugars zoom up and I end up swearing as too high for cake.

Some 2 hours later my son found me at the other end of my house, collapsed, face down in sick. I was barely breathing and non-responsive. My jaw was seized shut and I was inhaling vomit. He put me in the recovery position first and rang 999. He had even said ‘Bye Mum@ as he thought there was no way I was coming round. He did manage to open my jaw which was apparently very hard and remove some of the vomit.

Next thing I heard was from a Dr saying ‘lay still, we are the paramedics you’ve had a nasty collapse but you are fine’

In my house were the air ambulance ground crew and they were looking to land a helicopter nearby as they were concerned as all my vital signs and signals were not looking good. I had an emergency response crew. These arrived within 5 mins carrying defibs not just 1 but 2! I then had an ambulance crew.

For over half an hour they put a line into my vein and pushed through 500mls of glucose. Finally I came up to 38mmls but dropped again to 4mmls. They asked me questions as to my name – I got that bit correct, the day – after thinking I achieved that one and then they asked for the year – this took a little bit longer, I mean it was January.

So once they had stabilised me, changed me, I walked feeling very sick to the ambulance and went off to the hospital.

However on the way to hospital my bloods started to drop again, by this point I was feeling so sick and shivering like mad as my body couldn’t warm up. The paramedic said I needed to eat 4 Jelly Babies, she counted them out as they had nothing to give me and told the driver if I couldn’t physically eat them then could we go sirens on full pelt to the hospital. To this day, it was the slowest eating of Jelly Babies and keeping them down she had probably ever witnessed, but I did it.

At hospital they gave me an injection to stop me from being physically sick and hooked me up to a saline drip. My bloods at this point were still not rising too well. I was popped into a cubicle and the lovely doctor had a super bedside manner and asked me what had been happening. Thankfully he realised I was human and was capable of talking. I had a chest x-ray as I’d inhaled vomit and after several hours as no beds were available and my family were around me I was allowed to go home. Once home and several hours later I went to bed with a cracking blood sugar of 38mmols feeling downright awful.

The following Monday I had a long chat with my DSN at 8.00am (thought I’d get in before they did and leave a message on the answer phone) but they were awaiting my call. As I had, had a seizure I could not drive. My hypo awareness was non-existent they listened, never blamed and reassured me that everything would be fine and I just needed time. They also said the length I have had diabetes can play a huge part in having no awareness and that it is nothing I have done.

3 months later my hypo awareness has started to come back albeit very strange, either get splitting headaches, tiredness or a cold right foot! The hospital cut my insulin back by over 20% and found out that I was in fact highly sensitive to insulin. This means if I exert myself in any way it can have profound effect on my blood sugars.

Hypos are now treated at 6 and they have said it’s ok to go over 14 after eating its very normal. But by listening and doing what they advise its working and I am hoping in the next 2 months to be able to drive again.

Lessons learnt – we see all this crap online about post prandial being not more than 7 after a meal and to maintain levels at 4-6 but for me this led me to no hypo awareness, as I was told at a psychologist app this isn’t even normal for a non-diabetic let alone a diabetic person so why do we feel we need to adhere to this as it just not normal.

Ask anyone if they have hypo awareness and I guarantee they will all say yes, but recently I have learnt that 1 in 4 don’t. If you don’t please speak to your team there is help out there and 9 times out of 10 it does come back.

Just don’t be scared of telling them, these are complications that can occur whether you’ve kept to the correct levels or not.

My advice go talk as I am extremely lucky to be here today talking about this.

Fear of Complications or Inspired by Them?

I remember the conversations started a few days after I was diagnosed. A throat infection had masked the symptoms and I was admitted to hospital in a DKA coma, I would remain in hospital as the medics brought my blood glucose levels down and I have no memory of those first few days.  One of my first memories after diagnosis were of my Nan coming to the hospital to visit me and she told me that one of her friends had diabetes and she had to have her feet cut off because she did not look after her diabetes, that was the first of many negative conversations about diabetes throughout my life.  I was just 5 years old and this conversation happened in Basildon hospital in 1977.  I am sure that my Nan was trying to make me see how important it would be for me to take care of my health and my diabetes, I could not understand how something that made me use the sugars I ate that had broken in my body was related to the possibility of having my feet cut off but the fear she created in me with her well-intended comments has never really left me.

Please don’t judge my Nan badly, in 1977 the impact of psychology on physical health was ground breaking research and had not been adopted by health care professionals or laymen. Tools for managing diabetes did not really exist either, to put this into context there was no self-monitoring of blood glucose, that technology did not exist yet, I was prescribed just one injection per day of an insulin called Monotard, an insulin that was derived from cows or pigs.  We soon found out that I was allergic to cow (bovine) insulin and we switched to pig (porcine) insulin which I could just about tolerate.  The HbA1c test did not exist yet either, or if it did was not available in my hospital.  My expectations of life with diabetes were set at that early stage, it soon became clear that good ‘control’ was important but without any tools to bring about control or ways to measure that control we were unable to make any informed decisions to bring about any form of control, instead we were in a battle for daily survival.  As a teenager, I rebelled against my diabetes skipping injections, eating what I wanted, when I wanted, transition care for diabetes did not exist and I refused to attend diabetes clinic for about 10 years before I finally realised in my late twenties that if I wanted to live with diabetes on my terms I had to make some concessions.

I could write many stories about growing up with diabetes but in this article let’s move the clock forward to 2006. It is now 29 years since diagnosis, I am married to Denise and we have two daughters and we are now living in South Wales.  I am attending diabetes clinic regularly and I have settled into a routine with my diabetes, my family and my life.  I decided that I wanted to be an early adopter for an insulin pump and I had worked with my HCP team to make this happen in 2006.  My insulin pump provided me with the tools to improve my diabetes management, everything was good, I felt better than ever, my HbA1c dropped to 7% (that is 53 for all of the newbies out there) and life was treating me well.

I have secretly made a pact with myself that I am going to see my great grandchildren, my own daughters are just 4 years old and 2 years old at this time. I had already been told that there are changes in the blood vessels in my eyes that needed to be reviewed more carefully and more often and I had been seeing an ophthalmic surgeon once a year for the past 3 or 4 years.  On this day in 2006 I went to see the surgeon feeling surprisingly relaxed, I knew that improving my diabetes management via my insulin pump were going to stabilise the changes in my eyes.  After the examination, the surgeon would always chat to me about the changes he had seen, or not, and then we would tell me to come back in a year.

I could not have been more surprised that day when the surgeon said that there were significant changes that were threatening my sight since my last appointment. I explained that my HbA1c was better than ever, that I was on an insulin pump and his response hit me like a bolt out of the blue “that explains the changes we are seeing, in people with long term type 1 diabetes who rapidly improve their control we sometimes see significant changes in the eyes”.  This felt like diabetes giving me a real kick in the teeth, I had worked my arse off, brought my HbA1c into target range for the first time ever and this is the benefit?  The surgeon went on to explain that continuing to maintain, and even improve, my diabetes management was still essential in maintaining my eyesight and that the long term benefits would certainly outweigh the short term ‘bad news’.  The surgeon then told me that he needed to perform laser surgery on my eyes and he explained what he would do, how he would do it, what were the risks of doing the surgery and the likelihood that if the surgery was not performed I may experience a bleed that could permanently damage or destroy some or all of my vision.  As I began to process this news I asked him when would the surgery take place, I could never have been prepared for his answer when he said in about 10 minutes.

I was given another dose of the drugs which dilate the eye and I was asked to go to the waiting room to allow the additional drops to work. My wife and daughters were in the waiting room and as I walked out half blinded by the drugs in my eyes I knew that I wanted to see my daughters grow up and although my own children were only 2 and 4 years old I made a pact there and then that I would see my great grandchildren, I knew then that I would do whatever it takes to maintain my health for as long as possible.

The surgery went well and over the course of about 6 rounds of laser surgery my retinopathy was stabilised, the treatment I received was excellent and once I recovered from the shock I knew that the treatment approach was right, find a problem and deal with it immediately.

At the time of that surgery I was a 35 year old guy who was carrying too much weight and an active day was walking down the stairs at work, but only if the lift was broken. So, what has changed for me since then?  I started to become more active doing some walking (because I really hated running) in the hills and mountains in the UK and I then went on to do the Welsh 3 Peaks challenge and the 3 Peaks challenge, then after too much wine one evening in 2013 I agreed to run a 5k race, did I mention that I hated running?, and this inspired me to train for a run a half marathon.  I was now 41 years old, and I thought if I can run a half marathon after living with type 1 for 36 years anybody can do it.

On the 2^nd of October 2013 I completed the Cardiff half marathon, I never anticipated that it would lead to a phone call from JDRF inviting me to join them for a little challenge and on the 21 June 2014 along with 16 others with type 1 diabetes I watched the sunrise from the summit of Kilimanjaro.  Throughout my training to climb Kilimanjaro I continued to run, did I mention that I hated running?  I found that my diabetes was easier to manage if I took part in regular physical exercise and running was something I could just about anywhere and this is a huge advantage when your job takes you all over the place.  I began to realise that the running was offering me benefits that I could have never anticipated, my blood pressure was now dropping, my cholesterol was dropping, my weight was dropping and I had more energy.  These factors all lower my risks of diabetes complications.

This year I celebrated 40 years of living with type 1 diabetes and to mark the occasion I ran 40 half marathons in a year (did I mention that I hated running), finishing the challenge in Swansea on 26 June 2017 just a few days before the anniversary of my diagnosis. My running campaign had a number of goals, for me personally it was an endurance challenge that pushed me and my diabetes well beyond my comfort zone but it was more than that, it was a campaign to raise awareness of the symptoms of type 1 diabetes.

The next chapter in my story is that my retinopathy remained stable until a few months ago and it has now become maculopathy, I continue to receive excellent care and the situation is being closely monitored. When treatment becomes necessary for my maculopathy it will be dealt with immediately.  Will I get to see my great grandchildren?  I certainly plan to.  However, whatever complications that my diabetes puts in my path I will continue to make every single day count, is that my old fears of complications coming through or is it a realisation that my health is a gift?  I am not sure of the answer but I certainly like the results.

For the last few months I have been enjoying a rest from the running and investing my time into the creation of the website which is dedicated to type 1 diabetes and exercise (1bloodydrop.com). I am working to create a resource which answers the questions what should I do to manage by blood glucose before, during and after I exercise?  We have created video blogs which discuss long distance running, mountain climbing, swimming, weight lifting, football, 5-a-side football and we have some amazing interviews with experts in the field of diabetes and exercise.

What is next? 1bloodydrop.com is putting a team of type 1 ‘athletes’ (an athlete is anybody who is willing to give it a go in my book) together and we are going to set a new record for the most people with type 1 diabetes to run a half marathon together.  The current record is held by the team at 1bloodydrop and is 29 runners with type 1, now we are aiming to get 101 runners with type 1 diabetes to run with us at the Swansea half Marathon on 24 June 2018, join us at http://1bloodydrop.com/videos/swanseahalfmarathon2018/

The Poetic Diabetic