Some Statistics

I was just browsing the TV channels and in one of those health programmes  the guy was getting his swollen, red and ready to explode feet checked; they looked horrible, the paramedic women commented that 100s of people’s  get their feet chopped off because of diabetes every week.  You cannot avoid negativity surrounding diabetes even when trying to watch relaxing TV channels after hard day at work.  In fact some of the statistics are horrific: The estimated diabetes prevalence for 2010 is 285 million and is expected to affect 438 million people by 2030. There are 2.6 million people who have been diagnosed with diabetes in the UK (2009). By 2025, there will be more than four million people with diabetes in the UK. It is estimated that up to one in 20 people in England has diabetes (diagnosed and undiagnosed). UK-wide, it is not quite one in 20. But when diabetes is not well managed, it is associated with serious complications including heart disease, stroke, blindness, kidney disease, nerve damage and amputations leading to disability and premature mortality. Cardiovascular disease is a major cause of death and disability in people with diabetes, accounting for 44 per cent of fatalities in people with Type 1 diabetes and 52 per cent in people with Type 2.  Almost one in three people with Type 2 diabetes develops overt kidney disease.- Diabetes is the leading cause of blindness in people of working age in the UK. It is estimated that there are 4,200 people in England who are blind due to diabetic retinopathy. This increases by 1,280 each year.- 100 people a week lose a toe, foot or lower limb due to diabetes. Up to 70 per cent of people die within five years of having an amputation as a result of diabetes.The emotional well being of people with diabetes is important and is integral to the overall health of an individual; coming to terms with diagnosis, the development of a complication, the side effects of medication, or dealing with the daily responsibility of self managing diabetes can take their toll on emotional well being. In some cases this can lead to depression, anxiety, eating disorders, or phobias. The prevalence of depression is approximately twice as high in people with diabetes as it is in the general population. Babies of women with diabetes are three times as likely to die in their first months of life.- Diabetes is the fifth most common cause of death in the world. Life expectancy is reduced, on average, by more than 20 years in people with Type 1 diabetes.  These figures in my opinion show how evidently badly managed diabetes is, as the number of people who suffer from diabetes-related illnesses is too high. Depsite the fact that NHS still spends 10% of budget on diabetes, which amounts to £286 per second and £173 million per week. I am really not sure if that money goes to proactive management of diabetes or reactive management of diabetes such as chopping off feet and removing damaged kidneys. (More statistics can be found //www.diabetes.org.uk/Documents/Reports/Diabetes_in_the_UK_2010.pdf )

 Everyone seems to have an opinion about diabetes and if they hear you got it, they are on your case.  I remember mentioning to one of my colleagues at work, every hour or so she was asking whether I was OK, and if she saw me eating chocolate, God forbid she was giving me an earful in front of everyone. She was driving me mental. I just wanted to tell her to leave me alone as she had not got a bloody clue about this illness. She might have meant well, but the last thing you need is someone on your case all the time and especially if they are not glued up how things work. It just does not feel helpful at all.

Diabetes can be a really scary illness; going blind, kidney dialysis, amputations, multiple organ failures, heart disease, depression and so on. It is an underlying condition of pretty much every horrible things that could happen to a human body. Even to think about them is depressing and already bringing my sugar levels up for sure :). It is very hard to control sugar levels because your body is quite mixed up, tired and you are getting different messages from different hormones. Unless you check quite often you do not know what the readings are at that moment of time. From my experience, the sugar readings can change rapidly from hour to hour. One minute it may show 16 and the next half an hour you can get an unexpected hypo. I have heard about something called Continuous Blood Monitoring but need to ask my doctor whether I can have it. Somethimes, NHS denies these types of new technologies as they are more expensive. I think I am going to buy it regardless, as it sounds like a must have item for diabetics. For a start, it means less pain on my fingers. My poor fingers have black spots all over them where I pricked them. Sometimes if you press them hard they start bleeding without pricking. How sad is that.The general understanding of diabetes is that you should not eat sugars and you need to give injections to yourself, but in reality it is a lot more than that. It affects everything in your life, including sleep patterns, what you eat, how you feel. Trying to explain, let’s say you are a car and you need petrol to continue and they give you a different type of petrol, so you maybe eventually reach your destination but it won’t be a pleasant journey. I never put the wrong petrol in my car but as I imagine it would be something like that, a broken car plodding along to reach its destination.  Unfortunately, diabetes is an internal illness; if it was an external illness it would be something like a beaten up man going to work the next day, I bet people would be more sympathetic then. More than anything, being diabetic is boring and creates a lot of work. The health care system/doctors/nurses think that you have nothing else to do other than your diabetes and they keep calling you for more appointments, and in your head you are thinking ‘I am sure you won’t be able to help me but let’s try one more time’. It is also funny that they want you to record all your blood levels, something like a food diary, of which when you go see them, they barely look at 10 sec. I am not sure what they are hoping to find with 10-30 sec analysis, a cure for all your problems :). Unless you eat pretty much the same amount every time of the day and have similar emotions with similar exercise, how are they going to find a pattern just from basic sugar readings? It seems to be just pretending to be doing a good job, rather than actually doing it.

It is so boring to check your sugar levels 4-5 times a day, inject yourself 4-5 times a day and yet have crap/unexplained readings with high sugars most of the time. It feels like all the hard work you are doing is wasted and your life/sugar levels never can be perfect. It almost feels like a failure and you are not good enough to pass this impossible subject. I am not sure if it because I am depressed that I feel this way, but to be honest it feels more like a reality in my case. I think that with every chronic or serious illness, the emotional side of the things should not be ignored and I dare to suggest that every person diagnosed with serious conditions should also receive psychological therapy as well as the medications they may need to take until the day they die. It may not sound much having to do 4 or 5 times injection a day and finger pricking and keeping your food diary but when you think over the years, they will add up to 100,000 of injections or something like that. Please do the maths for me :)! I admire people who keep their sugar levels OK for most of the time and not sure how they manage it. Whether they are super-organised, educated or controlled, I just cannot get my head around it. In my case I feel that whatever I do, there is no way my sugar levels will be controlled or that I can fully understand them. Even the things supposed to be good for you like exercise; you don’t know how your body is going to react. Well let’s say you have some high sugar levels and you would think, if I go and do some walking they should get lower. Well it is not the case at all, sometimes, yes, it gets lower or even too low so you get a hypo and sometimes it gets even higher. Is it another hormone that caused this like adrenalin, or is it because I did not inject enough insulin, is it because I walked so much? There are 10 unknown equations every time you try to do something like you feel like doing it. You almost need to over think and over engineer every action you do. If not, you get random readings on your meter to remind you that you are a failure.  One of my driving instructors, and I have had plenty of them over the years since it took me five times to pass,  commented that  he would kill himself rather than doing 4-5 times injection and living a life with something like diabetes. Well, he sounds harsh but, believe me you question yourself at times, is this how life is supposed to be. Is it my fault, is it my family’s fault, is the day going to ever come when they find a cure, why me and not someone else? What did I do so wrong that this happened to me? I remember, one of my diabetic friend remembers that he had a hypo at the park with his little daughter and he did not have anything to eat with him at that time. He remembers not having any energy to push the pram, getting warning signs from his body to find some food urgently. Diabetes can cause this kind of unexpected inconvenience and lack of energy even for 1.85cm strong man pushing his daughters pram. Always, carry some food with you just in case :). Fair enough, more than half of the world is hungry or sick and have other problems and I am not saying that diabetes is on top of the list but, what I am saying is that it is not something we should be de-prioritising, building more knowledge about diabetes will also help earlier diagnosis and better controlled sugar levels. It is not just diabetes, there are other illnesses like asthma. People just think ‘take a bit deeper breath then’. Well, it can be a bit more serious than that. Perhaps, we should give more education in schools on how to deal with diabetes or asthma but also recognise early symptoms in ourselves and help others who have to live with these conditions that they did not ask for. Also, students should get a general check up every year. Schools should be more practical, emphatic and improving people’s life for better surely? It is funny that, whenever I go to have a massage to relax, these massage ladies keep talking to me. It is hardly relaxing :). Anyway, this lady had a funny accent like she was from eastern Europe somewhere.  She said she was English but had Polish neighbours when she was little. One English lady apparently asked her in the past as well and she said I am from here and the English lady asked slightly annoyed, no I meant originally and she said well, from here.  It was funny though, she did not sound English at all, I found it hard to believe her as well :).  She mentioned that her dad was a diabetic and he was in an out of the hospital all the time. She also remembers him being naughty as he did eat a lot of sweets. She remembers her mum and dad’s arguments and how horrible he was and she said she always associated horrible people with diabetes.  I am not sure, if it can be the case. As a diabetic person your blood sugar levels affect your mood a lot, and if they are consistently high and you are feeling depressed, you almost feel like despising the people around you as they get on with their lives and you feel left behind with no care. Perhaps, diabetic people can be seen as horrible people by others or they can be horrible to people around them because they are not feeling that well inside. I wonder, what is the ratio between mental illnesses and diabetics? :) Because, I feel sometimes diabetes pushes you too to the very edge as well. Well, she also said that a strange thing about her dad was that he was also a cross dresser. Her mother knew this before they got married, but she thought she could change him, but obviously he did not change and with very badly controlled sugar levels in and out of the hospital all the time escalated to arguments, mood swings and a separation afterwards. She hardly remembers him, only the diabetic, selfish, horrible cross-dresser father. They have not seen each other since she was little. I wonder if he had controlled his sugar levels better whether he would have been a better, more supportive father to her and his family. Anyway, I love massages and I think it is really important to find some time and treat your body and get a human touch :). After the massage she also recommended an Aromatherapy product for relaxed deep bath and shower oil. She suggested rather than following the instructions just put some above your chest, underarms & ears and it knocks you out. It pretty much does that actually. Because of my sugar levels I find it quite difficult to go to sleep and relax and am hoping this aromatherapy will help. Apparently, in old days the stuff inside was used to relax patients before operations and I need something strong to keep me relaxed :).

Visiting a professor

11th March 2012

It has been a miserable weekend - I must have caught a cold on the train or tube coming back home from a business trip to Leeds. I have man-size Kleenex tissues to keep me going. I haven’t had any energy to go out, apart from a quick trip to Sainsbury’s to get some food and medicine for myself.

Whilst I was feeling miserable, my housemate, who by the way had only a couple of months earlier separated from the love of his life fiancée, brought back home another girl called Claudia. Apparently, they knew each other previously, and spent the whole weekend together in the flat. I was in my room coughing to death and I heard how Claudia kept screaming with pleasure, or that’s what I was assuming it was unless she was diabetic too :). Well sex is another issue for diabetic people or rather the lack of it, but I possibly will talk about it later :). I am surprised how quickly my housemate got over her fiancée; I generally find it quite difficult to get over emotional things but not sure if it has anything to do with diabetes.

Staying on the subject of diabetes and housemates, my doctor had referred me to an endocrinologist, due to my sugar readings being 63mmol with the target being 58 mmol or something like that. My housemate works for a private surgery and he offered to book me an appointment with a good professor at his surgery - I am always having trouble with fully understanding and controlling my diabetes and I thought what would be better than a Professor. At the time, I did not even know that there were specific professors for diabetics, also called endocrinologists and it looks like my housemate did not know it either! He booked me to see an endocrinologist but it turned out he specialised in thyroid! By the way, he charged £300 to confirm that I did not have thyroid problems and he did my initial analysis and referred me back to his diabetic endocrinologist professor colleague to nearby private hospital.  Not to mention, I had to also book a 1 day holiday not to give diabetics a bad name. Paid £35 car park charges in central London and also £10 for congestion and took a friend with me to support me :). Well let’s hope I will get some money back from my insurance. Because, I cannot deal with the stress telling him, you moron booked me a wrong doctor and argue with him, who is right and who is wrong. Sometimes, you feel it’s just easier to pay some money and move on.

Thyroid professor said in his letter to me; … “although trained in diabetes, I have not practised it full time many years and I do not consider myself to be a sound source of diabetes care over and above that of a competent General Physician. She is 34 years old, just over a decade ago type 1 diabetes mellitus was diagnosed. Her recollection of events is rather hazy, but she does remember weight loss and being told that her capillary blood glucose was 40mmol. It seems that she may have been discharged from an endocrine clinic in Reading in a rather punitive manner after a single missed appointment, and what emerged during quite a lengthy consultation was a dynamic in which hypoglycaemia is somehow her fault. I am referring to will be helping her to wrestle control back, such that she fits the condition around her life, as opposed to her life being a slave to the unpredictability’s of glycaemic control.

By her own admission, her life is a little chaotic in that routine and order do not come naturally to her. Her diet seems to be reasonably sound, although there are some possible areas for improvement. But even the against the above background, I thought she was doing pretty well with her condition. Her weight is stable, she has not had regular episodes of decompensated acidosis, menses are regular, she has no immediate plans for fertility and it was not clear to me whether she was robustly plugged in to regular retinal surveillance. She continues twice-daily basal insulin (levemir) and Novrapid around the time of each meal, but it was not clear to me whether she understood the principles of anticipatory insulin, as opposed to reactive/rescue insulin.

I do not think it clinically appropriate at this stage to be looking for coeliac disease, thyroid disease or glucocorticoid- related diagnoses, which can sometimes lead to erratic glycaemic control. Rather, I though the situation should be handled as though the diagnosis of type 1 diabetes was much more recent and she was in the learning/empowerment phase. To this end I have given her a simple programme, which will not be too intrusive, of monitoring some pre and post prandial finger glucose measurements. I have encouraged her to buy a book written by Dr Rachel Besser on how to live with type 1 diabetes, which is actually aimed rather more at the paediatric population but the message is equally applicable to adults learning about diabetes. With these two things under her belt, I think she should try to get an appointment with Professor M. sometime towards the end of March to take things. With the right help, I think she is going to do extremely well.”

Except few misinterpretations, I think he is spot on. I do nothing at all about diabetes after 13 years of plodding along with good old NHS support for diabetics. Well, private diabetic care efficiency is yet to be seen of course. This first attempt was a bit of a disaster.  

Old Times

My mum and dad’s recollection of my illness are quite hazy. Although, they are both teachers and have daily interactions with various children they said they knew something was not quite right but could not link my behaviour/lack of energy directly to diabetes. You assume they would be spot on something like that but no. I also have a brother at home to compare to, so I potentially had had diabetes undiagnosed for over ten years. How I lived was perhaps was a miracle but how no one could see that I was ill was another miracle!

 I am not sure whether it is ignorance, whether parents/ people are too busy with their own worries and cannot see what’s wrong in front of them or whether they just don’t want to accept that their children might get labelled with a disease, who knows. If you ask my opinion, I felt that it was ignorance and no one really cared about me. That kind of feeling made me feel even worse and sicker I think. I could see my brother, going to a private university and my mum & dad fully supporting him yet there I was, a miserable girl stuck in her small room crying and wishing to die with no hope. My dad says he did not see anything wrong with my behaviour and felt many teenagers lock themselves into their rooms.

The most important thing is education and awareness of course, as I did not have anyone with diabetes in my family no one seemed to even having considered I might be diabetic. Of course, now that I have been diagnosed, for example if my brother’s child had similar symptoms I am sure they would be more alert. They know what kind of symptoms might occur and would not dare to just ignore them.

When I have chat with them about symptoms and whether they notice anything at all, they say well ‘you were not a very energetic or a switched on child, you were walking a bit shaky but we thought it was because of your flat feet :). Well, you would ask for a chocolate and couple of hours later ask for a new one and I would get angry saying, I can’t keep up buying chocolates for you are not a kid anymore you know!

My dad reckons I was much more switched on as a child up to the age of 12. He says after that my eyes did not look quite right :). He remembers I almost had a pointy/weird eye and my eyes were wandering and not quite there most of the time. My mum also recalls taking me to an optician and they could not get a correct reading. She said one week we went and they gave a reading and the other week we went they gave a different reading so I had to keep changing glasses quite often.  On reflection, my mum says she cannot believe the eye doctors did not refer me to a diabetes check. In the end they said that I might be making this up or was maybe too young to understand the importance of this test and then gave me eye drops and glasses. My mum accused me of making up my eye readings to get glasses for years! She was convinced that I was jealous about one girl’s glasses and wanted to get some too. I can’t remember the full story to be honest, all I remember are the black ugly cheap frames which mum used to buy for me, and which I did not wear. Me and my mum did not get on very well as you can imagine. She is a harder battle than diabetes :)

My mum also recalls one of our neighbour’s children being diagnosed and we were only a few years apart and she thinks that I possibly had diabetes around the same time but somehow did not get the correct diagnosis.  I also remember going to their flat, and her mum was making him to show us him checking blood sugar levels and somehow he was shy and embarrassed about it. His mum was also complaining about his dietary requirements and how hard it was to get it right. His grandma had diabetes and he got diagnosed after he went into a coma. His dad also left to go to abroad around the same time like my dad. Poor boy, I feel sorry for him, hope he is doing well these days. I think that because he was diagnosed at the early age and got full support from her mum controlling his diet, he might have had adapted better than I have. Let’s hope so for his sake. I believe he was around 11 years old when he was first diagnosed.

My parents also recall a time when I collapsed when I was around 7-8 years old. I was attending a school assembly and collapsed and did not feel good and was taken into ambulance. They gave me some water and food and I felt all right afterwards. To be honest my memory is not very clear on this event but I remember eating some food and feeling much better. My mum remembers telling me that I had not eaten any breakfast that day. So, anyhow, I did not get any further checks to investigate this issue.

Also, in another event, my blood or urine test came up as diabetic with high sugar readings. I was then around 13 years old.  I remember this because, as soon as I heard, I thought God please do not make me a diabetic person, the only thing I enjoy and love in this life is chocolate and sweets :).  I also remember having read that boys are more likely to get diabetes so I thought it could not really happen to me. If someone had to get it, it would more likely to be my brother. But of course, we were all wrong! Rather than any further investigations, the health worker claimed that they had a new starter and he had messed up people’s test results. He said I was too young to have anything and looked OK. Thanks to him of course, my life deteriorated over the years. If he had been a bit more vigilant in his work, or if my family had been a bit more knowledgeable about diabetes, they would have had carried out a couple of further tests to make sure everything was really OK, rather than making assumptions. Of course, as the time goes by, the diabetic research, understanding and awareness are increasing but I still feel there are lots of untreated and undiagnosed cases carrying on with their miserable lives and wondering what is wrong with them.  In addition, since the health advisor confirmed that I did not have diabetes, I did not really think twice about diabetes again. I always assumed there must have been something else that was wrong with me. As helpful as health workers can be, do not take their word for it - get a second or third opinion and further tests done, and listen to your own body and be persistent in following it up.

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 :)