A Type 1 Diabetes Blog
In this section, i will analyse my experiences of section 1.
Please click below to proceed.
It is now January 2020 at the time of writing this so I will update you on my current situation.
Diabetes, or, to be more precise, my actions, have taken so much from me:
And yet, I feel generally better than at any time since my teens!
My mental health and general outlook is superb. I don’t feel that there is a black dog on my shoulder at all.
My relationship with T1D is completely changed, I no longer resent it, it is a part of me and we share a cooperative coexistence. My relationship with food is functional, my diet is normal and probably, just on the right side of the balanced line. As I write this, my right eye is almost normal vision.
Since 2018, my eyesight has seen the biggest journey. Upon the rapid HBa1c improvement, my eyes actually went worse and I went more or less blind at the start of that year.
This was treated with vitrectomies which were totally successful in my right eye, but not so much in my left, My right eye does still haemorrhage periodically, but these clear up within about 10 days without needing surgery. I believe this is the advantage of stable targeted Hba1c, the eyes recover their natural self-healing properties.
My left eye, however, went completely in the other direction. In August 2018, I had a further vitrectomy in this eye. This one got infected and at one point it was touch and go about whether it could stay in-situe. Thankfully, medication was successful in making the eye pain free and stable to remain.
However, it is now completely black blind and it will never recover. Since then, my right eye has had 10 day blindnesses on 3 occasions, Obviously, at these times, I am totally blind. However, with careful planning and adaptation, I am still able to stay entertained and productive at these times, so I don’t fear them! I describe my single eye eyesight as “90%, 90% of the time” and I’m perfectly ok with that.
Medically, I am on statins and cholesterol is fine, thyroid medication is doing its job as it should. I have a tiny leak of protein from my kidneys into my urine, signifying the start of kidney damage. I have very high blood pressure. I have started on a course of blood pressure tablets which also benefit my kidneys.
Professionally, although, I do know that with my improved diabetic health and subsequent energy, I would perform as a teacher much, much better, that chapter is now closed.
I feel that my experience and knowledge in T1D has given me a new purpose in life, to help others. For that reason, last September, I went back to university and started doing a masters… MSc Diabetes, so that I can take my advocacy to the next level!
Thank you for reading this Biography section. The next section will be on Mental Health issues,
At the same time as my eyesight started to change and my career effectively ended, in January 2016, I visited my surgery and saw a new GP, who to this day has been incredible
My HBa1c was ridiculously high at 126 or 13.7%. I restarted antidepressant and lessons learnt from my previous experience resulted in me not stopping them, and I remain on them to present, although they have been changed to a dual use alternative that as well as treating depression, also relieve neuropathic pain, which had increased significantly, particularly since retiring from refereeing and being less active.
At the same time, I was persevering with my T1D, still struggling, but, I think the fact that I was not working meant hypos were not feared.
My GP then did a “full M.O.T.” on me. We found that I had underactive thyroid and a folic acid deficiency and both were treated. My next Hba1c was 75 or 9.0%.
Although my mindset was better, I was still clueless and I did suffer regular burnouts and in August 2017 my hba1c had increased again to 96 or 10.9%.
I was offered the Dose Adjustment For Normal Eating (DAFNE) course, incredibly quickly, for the first week of the following month! It was an incredibly rewarding week-long course. My mathematical background meant it made sense, but it did not go far enough for me. However, it did provide me with the starting principles and motivation to research and develop it further into something that worked even better for me.
I had a Hba1c just 3 months after I did DAFNE, in December 2017 and it was 52 or 6.9%. It has remained between 6.6% and 7.0% in every test since and my mental health remains very positive.
I had my first warning sign, regarding my eyesight, a month upon my return in January 2014, I had a haemorrhage in my right eye. It created a red mist within my field of vision accompanied by some red “worms”.
I had an assessment and referral from my optician and was seen by my ophthalmologist very quickly. Over the next few months, I had external laser treatment and relatively quickly, it had improved somewhat.
However, due to picking up the slack and not sharing the work equally, my left eye had started to show deterioration also, so laser treatments followed on this eye, and thus became the pattern of alternating treatments. It wasn’t long before
the right went bad again. Furthermore, the frequency and severity of bleeds seemed to be increasing.
In January 2016, the lack of response to external lasering prompted an internal surgery, a vitrectomy, to my right eye. Recovery was longer this time, but vision did return to a good level.
In August 2016, my teaching career officially ceased, In November, I applied to be a Christmas delivery driver for a major high street store. However, two weeks into that job, driving home from my last delivery of the evening, I had the severest bleed in my right eye to that date.
Although my teaching career had ceased the previous August, I effectively hadn’t worked since the previous Christmas. I believe my eyes weren’t strong enough for this driving job, and the subsequent pressure placed on them prompted this haemorrhaging.
This also signalled the end of my refereeing career. I had been continuing to referee in between treatments and when vision was good, but I have not participated in the game since December 2016.
Over the next 12 months, I received treatment to both eyes, but at Christmas 2017, I was more or less blind in both eyes, and I was registered as partially sighted.
At about this time, I was also losing feeling in my toes and I was having problems with my erections.
I plodded along in my career for the next few years, treading water again and doing just enough to stay out of trouble but that would all change, when, in September 2013, there was an allegation of violence made against me by a child. The expected next step in this process would be a suspension, not as a sign of guilt or culpability, but purely from a safeguarding point of view. This did not happen (presumably, because the school knew there was no foundation to it, although this was never communicated to me). This process should have taken weeks to resolve, but it was left hanging over my head for 8 months before being cleared. I was working throughout all this time. Add to that, that an ultimately unsuccessful inspection took place during this period which put myself and the whole workplace under increased pressure.
The allegation was finally resolved in June and the school year ended in mid July. At this point, it felt like a massive pressure valve had been released and I had a mental breakdown that had been building over the previous 9 months.
I was diagnosed with depression, which I believe had been present for the majority of that year, due to my behaviours throughout it. It was only due to my meltdown, that I admitted these issues to my wife, doctor and most importantly, myself. I was placed on antidepressants and had counselling to discuss my behaviours:
During my counselling sessions, I placed a large emphasis on self-esteem and in particular, my lack of teeth. During my time off work, I registered with a new dentist and a few months later, I had a set of dentures. Incredibly, I believed that
these two pieces of acrylic were my magic cure! I returned to work in January having been absent for 5 months.
I felt fine at first, very positive, so much so, I believed my depression was cured, and I stopped taking my antidepressants. It wasn’t cured and I slipped again.
I should have used more time to not only resolve my self-esteem and mental state, but also my always underlying diabetic issues. It was around the time of my return to work that I had my first warnings of my impending eyesight deterioration, which I will discuss in the next part.
A year passed, where I plodded along, feeling left to my own devices, knowing I was the liability of the faculty, and then the inspectors came back. I had a lesson observed, which didn’t go too well, and I was hauled in front of the head, I was placed on performance proceedings, which were entirely justified at that time.
It was, therefore, time to go into the “when the going gets tough” mode! For the next few months, I did everything asked of me, I raised my game, but then when it came to be reviewed, I felt, the goalposts were moved and it was clear my face no longer fitted.
I realised my only option was to play the long endgame, doing enough to survive until redundancy applications were asked for and then getting out on my terms.
At the next school holiday, Christmas 2015, I had another meltdown due to stress and depression. I did not return to school on medical grounds after that holiday, Redundancy applications were invited in May of that year. Mine was accepted and my career officially ended in August 2016.
Since then, my focus has been solely on “PROJECT ME”. I feel like I’ve deconstructed myself from the ground up, and put all the parts back together in a way that works better. I believe I am, mentally, as healthy as I have ever been, although, the same cannot be said physically.
Over the next few years, I got married, started my family with two children. When I look back at my wedding albums, I don’t think I looked healthy at all! I was overly thin and pale.
I was struggling at work, failing to keep up with marking and planning, it was starting to get noticed. However, another part of my life was flourishing.
I trained to be a football referee. I rose through the ranks quite quickly. I believe I was well rated and respected in the community. At my peak, I was an assistant in the Welsh second tier and a referee in the third tier, I was very active and I loved it!
Looking back now, I actually believe that refereeing had been my salvation at the time. Exercise being the most effective thing a diabetic can do to reduce the need for insulin, and general health. I used to do as much as I could possibly fit into a weekend. I did, probably, an average of 4 games.
It is my belief, now, that I was spending all week building up ketones and all weekend detoxing them out! In fact, I did used to take some insulin with football too, simply because I could not function without it, although, I am amazed, now, I could function at all.
In order to progress up the ranks, I had to pass a fitness test, usually in August. I was always on the borderline of pass or fail. The football season ended in May, usually, and the weekends became like my weekdays, by taking minimal insulin. During the course of the season, I would maintain a weight of between 12 and 13 stone, but by the end of July, I would be 11 stone and I observed that I could run more comfortably at this weight, with no wobbling bits.
This was not a researched or conscious abuse to lose weight, in the first instance, at least. It occurred by osmosis, it happened by accident in the first year, but because it created a preferable result, I deliberately repeated it in subsequent years as diabulimic episodes.
The next few years were a struggle, my behaviour continued and it put a huge strain on my relationships. I missed out on quality time with the kids and with my wife. I was so mean, grumpy and nasty.
It was also about this time that my career also started to fall apart. I was literally put in the position that if I didn’t quit, I would be sacked. So, I resigned.
I was starting to experience some mid-term complications: although I had already begun to lose a few teeth, this was becoming more widespread, and whereas previously, this had been confined to non-visible back teeth, it was now occurring to the “smile” teeth also. I was also experiencing some circulation issues. My feet were beginning to hurt after football and small blemishes on extremities were taking longer to heal, and scarring.
I then registered as a supply teacher for my local schools, this provided motivation for me, both in a personal and professional capacity. I was more compliant with T1D, despite the fact that I was still flying blind and not understanding my condition. I then applied for a permanent position at another school. I was successful in securing this job.
The next year, or so, were very successful, but evaluating myself today I know I had a severe flaw in my psyche at that time. I had a habit of “when the going got tough, I got going”, but when that pressure subsided and the novelty wore off, I had a tendency to slacken off, go into survival mode and fall into old habits. In the years that followed, my diabetic fallow periods returned, although the motivation spurts were more frequent and more prolonged.
I had my first inclination of my future diagnosis when I was 21 in the summer of 2000. I had just finished university had a job interview at a factory, upon arrival, we were sent to do a medical, which involved a “wee in a bottle”. I was then informed that there was sugar in my urine. I was sent home and advised to visit my doctor, which I did the next day. My Doctor instructed me to provide a fasting urine test, which I did, and a few days later the result came back as “all clear, no action required”.
Fast forward a year to winter 2001, I was now working at the accounts department of a local government office. Throughout November, I was experiencing pain and huge swellings in my ankles. It was getting to the point where I was having difficulty walking and in early December, I was admitted to hospital where I was diagnosed with a condition called Sarcoidosis. The Sarcoidosis was treated with steroids but they then had another bombshell for me. Admission testing had revealed that I did have T1D. I remained in hospital for 7 days and I cannot fault the care I received. I had long discussions with a diabetic consultant and a dietician. The information was thorough, but, in truth, overwhelming. I have to admit, my head was completely fried when I left hospital and frankly, I was winging it. I was initially placed on a fixed dose, mixed insulin where I had to carefully monitor food intake, it was very inflexible. Despite my initial motivation, I never felt successful on this.
The week after release from hospital was the week before Christmas. I had to go out to buy presents and I had my first hypo. I can’t remember the number, but I can remember feeling like rubbish, over eating – a vanilla slice and a glass of full sugar coke – in a cafe. The Christmas food shop had already been done also so the house was full of selection boxes, Roses, Quality Streets and shortbread biscuits. It did not make for a good combination. This was a bad start and a sign of things to come……
Fast forward to the following September, I had made a big decision on my career. I went back to university to retrain as a secondary school teacher of maths. I completed my Post Graduate Certificate of Education and I secured a job at a local high school.
I honestly cannot remember how long I was on a mix. I don’t think it was long before I got moved up to the next level of diabetic treatment: separate long and short acting insulins. This combo should have allowed me more flexibility, but despite my best compliance and efforts, I honestly did not have a clue what I was doing or why I was doing it. My blood glucose would be high and I would over dose the hyper and end up low, then I would over eat the hypo and go high again. As an intelligent man, that I think I am, I was looking for patterns and perfection, but never found any.
The result was that I was always scared of having a hypo at school, in the classroom, so I used to skip or minimise daytime insulin, because whenever I did do insulin, I often had hypos in front of classes and I hated it! I would try more in the evening, but the sheer unpredictability I had, often led me to just give up then too.
I can’t remember what my Hba1c was at this time, but it wouldn’t have been good. Consequently, I started to miss appointments and fall off the radar of the NHS, out of ambivalence, laziness and shame.
I firmly believe that I was in a permanent state of ketosis and I would just do enough to stave off serious trouble.
I had made a stupid mindset decision. It wasn’t like I sat down and thought,
“Right, this is what I’m going to do, I’m going to run hyper”.
It just crept up on me over a long period of time. The fact is that hypos made me vulnerable to short term, immediate consequences, hypers much less so. Yes, I felt like garbage, tired, inefficient every day, all day, but I could still get on with life, to an extent. My experience was that my body got used to it. My reason for this belief is the fact that, despite my worst efforts, my entire diabetic journey has resulted in one hospitalisation for diabetic ketoacidosis. I personally find this unbelievable, as will you, when you read on.
The consequences of hypers are the long-term complications rather than immediate risk. Subconsciously, I accepted this as the lesser of two evils. It felt safe! My subconscious mindset was:
I am still young, I’ll deal with this later. I know about complications, but they are years, decades in the future and I’ll be sorted by then, or I might get lucky…. Because they don’t happen to everyone, probably just “could happens” , “might happens” and “possible consequences”
In this section, I will tell you the story of
I want you to read this and trust me that I know and understand:
I want to gain your trust that:
You might be thinking, what can this guy who has gone blind teach me about succeeding with T1D!
Let me use this section to attempt to convince you. Click link below to proceed. Thank you.