This week is Diabetes Awareness Week (13th-19th June) and it’s a week where many people will be highlighting the importance of getting the right treatment and support for people with diabetes.  Diabetes is a condition where the body doesn’t produce the right amount of insulin.  Insulin is vital for the body to control blood sugars and if there’s not enough insulin people can get very sick.  There are several forms of diabetes that affect people including gestational, type 1 and type 2, and diabetes for many, especially type 1, is a life-long diagnosis which can cause no end of frustration and difficulties for those affected.

Every year I see people raising awareness for diabetes, but in reality I find it hard to see so many positive posts on social media where people talk about how successful they often are, how they ‘have diabetes but diabetes doesn’t have them’ and many other supportive posts.  I find it hard to see so many posts from medical people and institutions too, because the one thing I don’t have is good control or good support.  I have a few family members who truly understand how hard it is for me and how I struggle sometimes but when it comes to professional support I haven’t had any for a long time. 😦

What is type 1 diabetes?

I was diagnosed as having type 1 diabetes when I was just nine years old.  The diagnosis changed my life forever and I struggle these days to remember a life without this horrible disease.  I remember being diagnosed, spending two weeks in hospital as a child and then coming home with a whole new medical kit, blood test strips, finger pricker, two insulin injections, that I’d have to use for the rest of my life.

Type 1 diabetes differs from the more commonly known type 2, and I hate it when there’s so much misinformation about type 1.  Type 2 diabetes is caused when the pancreas, which produces insulin, is overworked, and people don’t produce enough insulin, but they still produce some.  This is why some people can control their diabetes with a change in their diet alone and even get rid of it (put it ‘in remission’ as some call it) if they lose weight, become more active and are careful with reducing their carb intake.  Some type 2s do need to use medication, sometimes this can be tablets and sometimes insulin.

Type 1 diabetes on the other hand is a complete lack of insulin.  The pancreas stops producing insulin completely and people have no choice but to inject insulin for the rest of their lives.  People either inject two different types of insulin, several times a day, or they have an insulin pump, a device permanently attached to the body (with a needle into the abdomen) to put insulin in the body.  But regardless of the method of getting insulin into the body, both injection and pump users still have to live with the daily struggle of working out how much insulin to take according to what they eat and what their blood sugars are like.

The daily toll

In a non-diabetic, your blood sugars are taken care of by your pancreas and liver.  If you eat a lot of carbs and your blood sugar goes up, your pancreas quickly adds insulin to your body to keep the blood sugar down.  If the opposite happens and the pancreas released too much then the liver will balance it out by adding sugar.  This happens naturally and if you don’t have diabetes you won’t notice the changes.  You may feel hungry if you haven’t eaten a long time but it won’t cause your blood sugars to be too low and you certainly won’t have what is called a diabetic hypo.  But as a type 1 diabetic (or a type 2 taking insulin) it can be such a struggle to get your blood sugars right because so many different factors affect them.

Every day I have to wake up and check my blood sugars and correct them if they’re too high or too low.  Correcting them requires counting how much my blood sugar might be high, for example, and then I have to work out how many units to inject to fix it.  On top of that if I’m eating any carbohydrates then I need to inject for those too, which is also a struggle as I have to work out how many carbs I’ll eat ahead of time and work out how much to inject which is sometimes a mathematical nightmare if I’m tired.

Working out the daily requirements of insulin and having to stab my finger with a special device that has a needle to draw blood so I can test it, is hard enough.  Injecting the insulin can sometimes be painful, occasionally it goes wrong, and that is if everything is normal.  But sometimes working out the cause of high or low blood sugars can be difficult because sometimes there is no logical reason.  If I ate too many carbs then it would make sense, but sometimes you wake up and you don’t know what caused the high blood sugar, it could be the time of day, the temperature, how dehydrated you are and even things like having a period!😒

Never a chance of a holiday

There is never any chance to get away from the illness.  You never get a day off.  For some other chronic illnesses people may have good and bad days.  Sometimes people find themselves able to do things on some days or feel fitter/better than on others.  But with diabetes, though there can be good days and bad, every single day you must test your blood sugars, inject the right amount of insulin and hope it will be okay.  This must be done every day and knowing that every time you just want a bite to eat, you have to work out the amount of carbs and make sure that you didn’t suddenly get distracted or forgot to eat on time, you can never have a day away from it.  You can never take a day to not think about it because if you forget to inject when it matters, you’re blood sugars will be high later and you’ll feel the effects: tiredness, thirty, nausea and desperate to urinate all the time.  And after so many years, I find it hard to live with the condition day to day.

A lack of support

A lot of people with chronic conditions find themselves lacking support or the understanding of others.  Diabetes can be the same, especially if you have the complications of having to inject all the time.  Growing up, I unfortunately had no fellow diabetics as friends and for some bizarre reason it was discouraged by my diabetes doctor at the time as they said that it was important to integrate into a normal society (What the?🤬)  And while I had friends at school and into adult life, most people fail to understand important aspects of diabetes that affect me, and affect how I do things around them sometimes.

When spending time outside if a diabetic hypo occurs (a severe lack of blood sugar in the blood) I have to stop anything I’m doing, sit down and quickly drink or eat something sugary to bring the blood sugar back up.  It can take about five minutes to feel normal again, but sometimes it takes a lot longer before I feel normal especially if the blood sugar has been especially low.  Having a hypo is scary, my vision is severely disturbed, I see lights flashing in my eyes, I can’t see anything properly, things sound far away but also too loud, and if it’s not treated properly it’s possible for me to collapse as I have in the past.  But the friends I’ve had around me over the yeras, most have never understood how severe this is and I remember many times when someone has been impatient with me because I had to stop and sit down and in one event a person walking off to go shoe shopping because I was taking too long, leaving me terrified in a severe hypo, on a bench in public.

Having a lack of understanding from friends and people you work with is bad enough, but I have also experienced a lack of support from medical professionals too.  I use a rare type of insulin (animal) which these days is very old, and I can’t find a doctor who will help me with it.  No doctors even understand how my type of insulin works, some don’t even think it exists anymore!🙄 And I’ve been given useless advice by many on what to do to treat the diabetes.  I’m usually offered basic advice that I already know or some wild theories on how much to inject according to modern insulins (which if  I did try would have probably killed me or sent me into a diabetic coma🥺).

Most nurses and doctors have no clue how to treat my complex condition, my blood sugars which seem to be erratic at times with no understandable cause.  And apart from that, ever since moving house I can’t even get to see a diabetes specialist doctor, because the GP surgery I’m with and can’t change for the distance another is at now, refuses to let me go see a specialist (like I’ve always done which all type 1s should) because they believe their nurse led clinic which specialises in type 2 is enough (it really isn’t!).😫

Final thoughts

Type 1 diabetes is a life-long condition and I struggle with it daily.  I have good days and bad, but ever since the pandemic, I’ve had worse control and found it an even bigger struggle due to GP surgeries not returning to normal.  I don’t like talking about my condition much, especially when I see so many positive posts on social media with people successfully ‘beating’ their diabetes and having perfect control.  When I see people talking about how they control their diabetes, it doesn’t control them, I sometimes want to cry in frustration because I wish I had the perfect control they have.  I wish I could take a day off from this illness, I wish I could be a ‘normal’, non-diabetic, like everyone else I know.😢

So while this is diabetes awareness week, I’ve decided to share with you my story.  I could tell you much more about my diabetic struggles but I’ll leave that for another day.  It’s not easy to live with this condition and I find it a struggle, especially recently.  Having diabetic hypos and hypers (high blood sugars) is tough.  It makes you feel tired, sick, thirsty, shaky and all sorts of other things.  Diabetic ketoacidosis (DKA) is another severe complication (which can require hospital treatment  if it gets too bad), which has affected me badly several times in recent months.  It’s so hard to get though the day sometimes, especially if blood sugars are off and you feel tired or hungry all the time.

Sometimes I really do want to cry…But then I see some other people posting about chronic illnesses and I start to think that maybe I shouldn’t be so hard on myself.  It’s not so bad, if I think of all I do,  because even though I might struggle to achieve perfect blood sugars, to do all the daily activities and tasks that I need to do, maybe I shouldn’t be so hard on myself and stop comparing how much I achieve to those without diabetes, because I’m managing to get though life despite this horrible condition.

I find myself laughing and smiling, blogging and doing so much more, and I achieve all these things with this chronic illness inside me.  I want to do more than I can sometimes, but I’m achieving a lot despite my struggles.  So although I struggle and, yes, I’d like better support, because we all need support sometimes especially hidden disabilities, but maybe instead of being annoyed at myself when I don’t manage to finish all the tasks i gave myself, maybe I should look at what I HAVE managed to do.  Maybe I should be proud of myself, because every day I manage to life life, despite having type 1 diabetes and all the struggles it brings.

Do you sometimes struggle with any health problems?  Do you know of anyone with diabetes?  Let me know what you think in the comments below 🙂