I am annoyed!

Life with diabetes is pretty bad - it sucks and it makes you feel miserable most of the time. And the most upsetting part is that everyone seems to think managing diabetes is easy and that you lead pretty much a normal life. I don’t think that is a true reflection of how most diabetic people feel. I, for one, don’t agree at all.

I was diagnosed with diabetes in the UK thirteen years ago and my illness has never been very well controlled. I was around 21 years old at the time. I remember clearly how thin I was and how sick I was feeling back then. Every day, very often I would go to a biscuit tin located on top of the fridge and the rest of the day I was thinking of them :).

They say you lose weight when you have diabetes, but I had been thin pretty much all my life and did not see any alarming signals. I did not feel particularly thirsty either, as I come from a hot country and generally was used to drinking a lot of water. The symptoms I was having, however, were pretty alarming but no-one seemed to be able to put a finger on what it was.

For example, I did not have much control over my own legs. I was feeling depressed and crying most of the time. I wanted to die and kill myself to make the pain go away but felt that I was not brave enough to do so. I was praying for death for most of the time. I could not see any hope for the future. I was getting bruises the size of a £2 coin on my legs very often, but could not recall having bumped my legs on anything. I did not fancy eating any proper food and wanted to live pretty much on chocolate and sweets. I was feeling so depressed that I was convinced I was going to lose one of my arms.  As I write this, I know it sounds funny but trust me, being in that situation wasn’t any fun. In fact, I am not sure for how many years I had not laughed or smiled at all.  I assume, only after starting to take my insulin I began to smile again and I remember my cheekbones hurting as a result :). 

The funny thing is, though, that when I was going through this I was not on my own. I was with friends and family and they made comments like “walk straight”. Well, obviously if I could have I would have! Or comments like “are you on drugs”? Or my mum used to comment something like “your face looks like a dead person’s face” or “you don’t have feelings on your body”. These comments were really hurtful to me and difficult to get over with. I guess diabetes can be damaging to relationships with family & friends, as you may not have the support you require. I knew something was seriously wrong with me, I just did not know what it was, what to call it, or how to explain it. To be honest most of my life was so blurry that I almost felt it wasn’t real, a computer hell horror story or something and I wasn’t one of the normal human beings. Perhaps it wasn’t so obvious to people around me or people couldn’t figure out, just like I couldn’t, what was wrong and they thought I was just a miserable person. I thought I was losing my marbles and perhaps they did too J. It was so sad though, a very sad way of life. Luckily, today I am in a much better state compared to that and my personality is very different compared to who I was before, when living with uncontrolled sugar levels. Basically, it also played with my emotions.

I was diagnosed eventually in the UK. Having learnt that my dad had had a heart attack and I had been going through some stressful times myself, my heart was beating so loud that I could not sleep at nights. I thought that I might have had heart problems like my dad and also my granddad had died of a heart attack. When you complain about your heart to doctors they pretty much check the sugar levels at the same time or perhaps I was lucky to get a good, caring and clever doctor :). Without this, I could have continued living like I was but who knows for how long. It wasn’t that I hadn’t been to doctor’s before him. In fact, I went to see several doctors on many occasions and they all said I was fine and sent me back home! When he diagnosed me, I was so shocked and scared but also relieved at the same time – such a rollercoaster of emotions going through me that I did not even thank him. He immediately put me on Humalin twice a day and asked me to cancel my holiday to Barcelona as my sugar levels were horrendous and I mean absolutely horrendous. The machine simply read “HI” at the beginning which meant that my sugar level was so high that it couldn’t even give an accurate reading. When it finally started to give readings, they were generally around 40s which is more than seven or eight times the highest recommended blood sugar level.

Despite being on insulin, I remember going to a shopping centre once and being so tired. I can tell now how tired I was, because I can now compare how I’m today as opposed to back then, but when you are drifting into diabetes you do not necessarily know what is acceptable and what is not. You pretty much expect that that is how your life is going to be from then on and do not know any better. Even with 40/50 sugar levels, when asked by the doctor, I just simply answered I felt OK, not too bad thanks. I am not sure why, perhaps I just did not have any energy , or perhaps I did not know how to articulate how I was feeling or perhaps I had felt worse before and comparing to those times I was actually feeling OK.

Highs and lows in sugar levels shake you both emotionally and physically. Despite having been to see many doctors, diabetic nurses, dieticians and nutritionists over the years, they all seem to offer a quick and generalised approach. They do not necessarily have the time to appreciate the fact that each person has unique emotions and metabolism, for instance. A half an hour appointment with a piece of advice before being sent home may not be enough to patients, who are trying to be able to comprehend the full workload laid on their shoulders from day one after living with diabetes. When finally getting the correct diagnosis, you are in a very lonely place and you feel you are pretty much on your own to fight it without enough information, tools, technology or support. In fact, it feels the doctors cannot get rid of you quick enough. Sure, they keep you alive but what about the quality of life?

Take today for an example - when I woke up this morning my sugar level was 23. As it’s Friday and a work from home day for lucky ones like me, I woke up around 8.30am, having gone to bed around 12am as I was reading a book called “think like a pancreas”. One of the things you do read as a diabetic person. Anyways, my body did not want to wake up of course. In fact, when I woke up, I was already too tired. It’s difficult to explain as after all that sleep I should have felt fresh and energetic. Trying to describe how it felt was, rather than having slept the whole night, I actually had had to stay awake and work and as a result I felt like, as I would imagine, labourers feel after carrying stones on their shoulders, with a few hours’ sleep and earning not so good money :). When you try to wake up it is such a mission and you have to battle with your body to make it move and also to get your brain and psychology to go with it. Obviously, not one of your organs is happy and your brain is trying to find a meaning and power to continue. With all this going in inside your body, you still need to get ready and go to work.

In terms of dinner, I had had some mixed boiled vegetables including broccoli, onions, and tomatoes and a slice of beef and one brown bun bread. Was it healthy enough? Yes and no. My sugar level before bedtime was 26 but I did 4 extra Nova rapid and 12 Levemir to reduce it, however, it looks like I should have perhaps injected more of Novarapid! Honestly, you almost need to be a scientist or a doctor to get your head around on how to control your diabetes. The problem is that things keep changing, such as the food, exercise, emotions, waking up & going to bed times - as a diabetic person you need to also figure out how to adjust your insulin levels depending on all these variables. Honestly, they should not expect diabetic people to find a formula to calculate and apply to their lives on a daily basis. This is crazy. There should be an application or a database to help and guide you. The food supermarkets sell should also have some diabetic /insulin/portion guidance on them. I am sure this kind of extra guide would also be helpful to people who are trying to control their weight, and promote healthy eating more. Food is medicine for body yet we do not have much understanding of how it works. This is evident from obesity, the health problems and also uncontrolled diabetes. Until we have more tools to help diabetics, whatever it may be, such as insulin pump or continuous blood sugar monitoring systems, pretty much most diabetic people, in my opinion, will suffer from poor health and quality of life.

How can it be like this and why is this being allowed to happen? How did I let this happen to me over the last thirteen years? Is it ignorance, is it the lack of technology, is it the lack of money and budgeting why people do not get what they want and need from the health system? Is it the lack of support systems for diabetic people? I imagine it’s a combination of all this - it is hard work and as a chronic illness there isn’t a one-off cure but a requirement for continuous management & battle. It is not that I don’t want to battle diabetes, as I mentioned before I go to doctors and nurse visits via NHS and have sacrificed a lot of time and effort, but the most disheartening thing is that nothing seems to change. Fair enough, my sugar levels improve for a couple of days but then it goes back to how it was before. In a way it is not sustainable as I do not have a full understanding of my body, food, emotions and hormones. When you go to see doctors you just nod and agree that, yes, I have heard this before and it feels like a memorised version of the same story. Yes, I can live a normal live, yes I need to eat healthy, yes I need to exercise but it is not that simple a formula for diabetes I am afraid.  As doctors are not able to live in my body and feel the things I do, I cannot really blame them. So, is it perhaps my fault then? With that in mind, this year I am really focusing on my diabetes and trying to see how I could turn my life around - even if it means giving up hope on NHS and going private.

It is strange that, I have been using pretty much the same medications and blood check machines for the last thirteen years with a slight but not significant improvement. The rest of the developed world seems to be using insulin pumps with continuous blood monitoring systems. To be honest I did not even know there was a machine called CGM. Why are we so far behind in all of these technologies? Surely a proactive management of diabetes could save health system and insurance companies a fortune considering how diabetes can have an effect on all the organs in the body. Businesses also could save money through reduced number of sick days. So, what is the hold up?  Why aren’t we even made aware of these options? Is the NHS, or the GPs, geared up to help us at all? NHS keeps calling us for regular check-ups to make sure we are not getting blind, which is very nice of them, but would it not be better to prevent these beforehand with better controlled sugar levels and proactive management of diabetes. What I mean is a more results oriented and get it right the first time type of approach, not the come for a chat with the GP to check your test results. OK it may require more time and effort but surely, it will help people’s lives.  It isn’t good to diagnose someone and run a few checks on them and send them back home, on their own trying to master this illness with the help of a few leaflets.  There seems to be quite a relaxed approach towards diabetics by the healthcare teams from my experience.

This year I am going to take an extra good care of myself and investigate what can be done to improve my 13-year-old doomed diabetes. What options are out there for me, and what works and what doesn’t work for me?  To get feedback from other people, share experiences and raise more awareness and support for other diabetics. Starting this blog is the first step in that journey. Follow me and let’s work on diabetes together for better :)