Donna H.

Category: Diabetes

Diabetes blogging

My idea when starting this blog was to write a lot about diabetes but also have posts about general things like holidays I’ve been on etc, in an aim to get non diabetics reading.  That’s one thing I think is missing from the world of diabetes blogging – blogs which reach people with and without diabetes. I can read diabetes blogs for hours and hours taking in every word, feeling grateful other people feel the same way as me, understanding what people are going through and comparing my experiences to theirs. But would my friends read them with the same interest? I doubt it.

The trouble is, even if I did blog about both – a diabetes post followed by a “I went for lunch with my friends” post – I think people would just pick and choose what they read. (If I got any readers at all that is!)

Trying to get people without diabetes to have any empathy for diabetes is something I see as a huge problem. I don’t understand what it is about things like cancer that is so emotive for most people, that just doesn’t work with diabetes. Let me know if you have any views on this, even if they sound offensive!

Anyway for now the aim is to do more diabetes posts anyway, as they are much harder to write than posts with photos of what I’ve been up to. This has meant that 90% of the posts I do are posts like those, with only about 10% diabetes, which is never what I wanted this to be. So I’m planning to do a few posts called “What it feels like to…” on being hypo, hyper, injecting, going to clinics, carbohydrate counting etc etc.

Here goes!

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Why can’t I take care of myself?

It’s 02.45am and I’m lying in bed at 33mmol drinking as much water as I can manage without puking…

For those of you who aren’t diabetic 33mmol is DANGEROUSLY high.

So why am I this level?  Pretty much my fault.  This is something I find hard to say and tend to avoid.  I can usually make up excuses like “I don’t know my insulin ratios yet”, “I give myself insulin and still go high” etc etc.  And both these things are true.  But 33?  Neither of these excuses equate to a crazy level like that.  I had a lovely meal last night with my friends which was carb heavy and ended with brownie and ice cream.  
Now I’m all for advocating the fact that type 1s are allowed to eat what they like and this is true.  But for this to work I need to get over my fear of giving myself more than 12 units of insulin at a time.  This fear goes back years and stems from an awful consultant I had back at my children’s clinic at home.  When I was around 16 was when I think my HbA1c first started running high.  This woman didn’t handle it well and I think that’s where all my problems started.  She used to ask me if I was skipping injections on purpose, if I was doing it to lose weight.  I wasn’t at all and I didn’t need this blame for something I was already struggling with.  I was also told that the amounts of insulin I said I was giving myself were huge.  Since then I’ve tried never to go above this as it’s just stuck with me.  Only last year, at 20 years old, did an HCP say to me, “If you’re high, you need to take more insulin.  The amounts you’re taking aren’t that much.”  This shocked me and it definitely shouldn’t have.

Aside from the fear of over medicating, I also lack motivation.  This comes from years and years of trying with no result.  Every 6 months or so, I get a huge surge of motivation from somewhere and think “Right, I’m going to sort this, once and for all.”  Then I begin the rigorous demanding process of keeping a food diary, monitoring BGs every 2 hours, weighing all my food, tweaking insulin, looking for patterns, sending diaries to nurses and dietitians and so on.  This will go on for a few weeks and is completely exhausting.  I’ve figured out, with help, that my insulin:carb ratios are different at different times of day, which makes medication difficult, but not impossible.  Plenty of people do it.  My problem is that after this intense process for weeks, which is very difficult at the same time as working or studying and also just trying to lead a normal life, I still don’t see the perfect 4-10mmol results I’m looking for.  And although, I know that it takes a long time, this is hard to deal with and makes me feel as though all my effort is going to waste.  Then somewhere along the line, I’ll let it slip a bit and stop putting in so much effort.

Now, I don’t skip injections and I do my blood sugar tests.  I try to get the correct amount of insulin.  But I don’t keep my control as tight as I could.  For example, last night after the carby meal I spoke of, I didn’t take a correction dose before bed.  In hindsight this is just ridiculous but I can’t explain how this happens.  It’s not like I consciously think, I’m not going to sort this.  It just happens.

I definitely need more help that I’m getting, in coming to terms with, and controlling my diabetes more rigidly.  I feel like it completely controls me, rather than me controlling it and although it’s been 12 years, I still haven’t fully come to terms with the life changing condition.

For now, after this incredibly honest post, I need to monitor my BG closely and keep drinking water, so that hopefully this won’t turn to DKA.  In the close future, I need to reach out for further help and try again with the food diaries etc, but hopefully with more guidance along the way.

Previous diabetes posts here:
Diabetic Clinic & HbA1c
Diagnosis

Diabetic Clinic & HbA1c

Time for my second diabetes post.  Every 2-4 months most of us diabetic folks go to the “diabetic clinic” to check our HbA1c (reflects your average blood sugar readings), height, weight, bloods and have a chat about how things are going.  

For years and years my HbA1c has been too high.  I think I first “lost control” of my diabetes  when I first started doing exams in school. It’s hard enough to pretend to be a pancreas but with added exam stress and comfort eating it gets even more difficult!
For a while it’s been around 11-12% which is far too high. After seeing a dietician and adjusting my carb counting and insulin to carbohydrate ratios I got it down to 9% which is still too high but I was delighted with getting it under 10 and was aiming for the next one to be closer to 7. But this time I went back and it’s back up at 10.6%. I was absolutely devastated. It’s a horrible feeling when it’s too high anyway but when you know you’ve been putting your all into it and thinking about it constantly it’s even worse. It makes me feel like a bit of a failure.

Explanation of what an HbA1c is and what it should be from http://www.diabetes.co.uk/what-is-hba1c.html:

What is HbA1c?

HbA1c occurs when haemoglobin joins with glucose in the blood. Haemoglobin molecules make up the red blood cells in the blood stream.

When glucose sticks to these molecules it forms a glycoslated haemoglobin molecule, also known as A1c and HbA1c.

The more glucose found in the blood the more glycated haemoglobin (HbA1c) will be present.

How does HBA1c return an accurate average measurement?

Due to the fact that red blood cells survive for 8-12 weeks before renewal, by measuring HbA1c, an average blood glucose reading can be returned.

  • For non-diabetics, the usual reading is 4-5.9%.

  • For people with diabetes, an HbA1c level of 6.5% is considered good control, although some people may prefer their numbers to be closer to that of non-diabetics.

  • People at greater risk of hypoglycemia may be given a target HbA1c of 7.5%

 

Luckily the consultant I had this time was a LOT more helpful than others. So my grand plan involves testing 8 times a day to figure out where I’m going wrong with my doses, weighing out all my food carefully and getting a proper grip of this. I’m not sure exactly how I’ll keep on top of it and stay motivated. Looking at pictures of diabetic neuropathy on Google sometime helps! 😉 (warning – don’t search it unless you have a strong stomach!!)
So now that my WordPress finally (touch wood) seems to be working, I’ll try to keep up to date with how everything goes.

In other news – EXAMS ARE OVER! Summer is here. Stress is gone. So I’ve been able to spend the last few days relaxing and enjoying the rare Glasgow sunshine, with maybe one or two drinks involved. I’m also going to Oban on Sunday to visit my boyfriend’s Gran for her birthday so hopefully the weather holds.

Yes, I need my fringe cut!

Yes, I need my fringe cut!

Wish me luck on the dosage alterations! And if any diabetic people have any tips, let me know.

Daily Prompt: Million Dollar Question – Why Do You Blog?

http://dailypost.wordpress.com/2013/04/16/daily-prompt-the-question/

-I deleted Facebook and think blogging is a much more creative, healthy way of social networking.

-I like having it as a sort of ‘diary’ to look back on in years to come.  I had a blog when I was 15/16 and like looking back every now and then 

-As a newbie, I currently just blog for myself but if I do get any followers I’d like to raise awareness of Type 1 diabetes

 

Diagnosis

I wasn’t sure how to start blogging about diabetes but I suppose the beginning is as good a place as any…  I was about 8 when I was diagnosed, although unlike most I don’t know the date of my actual “diaversary”. I need to try to find this out at my next clinic. Maybe I could try to use it as an excuse for presents!

This is me and some friends before I got ill. I'm the nurse!

This is me and some friends before I got ill. Ironically I’m the nurse!

I had been ill for months and months. I looked scarily thin and still, to this day, I don’t like looking at photos of myself at that age. My poor mam had been tripping me back and forth to the doctors. It, shockingly, took 3 different doctors and Mam actually asking for a diabetes test before I was diagnosed. I remember in the days leading up to get the test done, she explained to me all about type 1 diabetes (not that any were concerned with type 1/type 2 at that time – very different story now). I think she almost knew, and was trying to soften the blow for me. She must have told me about exercise putting blood sugars down and sweet things putting them up because I can remember turning down juice my dad bought me the day before and cycling frantically in and out my road… trying to cheat the test!

I think this is when I'd started losing a lot of weight but certainly not at my worst.

I think this is when I’d started losing a lot of weight but certainly not at my worst. (on the right)

I can’t actually remember getting the test anymore but what I can remember is when the results came. I was playing at my house with my best friend at the time, Becky. We were supposed to be having a sleepover. Mam came in and said she had “a story to tell me”. I don’t know if it was the way she said it but I just knew. I had diabetes. That’s one of my most vivid childhood memories.
I ran upstairs crying, locked myself in the bathroom and refused to come out. I had to go into hospital that night. I’m not really aware of Becky leaving or me being coaxed from the bathroom!

The next thing I remember is arriving at hospital… I got about 10 injections and drips etc. (no biggie now!) I’m from Shetland, which is a beautiful group of islands North of Scotland – we’re actually closer to Norway than the UK mainland. At the time I think there were only 14 other children there with type 1 diabetes, so the next day I was flown to Aberdeen Royal Infirmary. I was really really upset by the idea when I found out but when I got there I had a great time! I was on a children’s ward with playworkers and got to do arts and crafts, play games and stayed up late with the older children to watch the Big Brother final. My mam had already gone to bed then and I remember feeling like a little rebel.

This is Chubby, the teddy I got from Nanny when I was in hospital.  I made him diabetic and injected him for a while too!

This is Chubby, the teddy I got from Nanny when I was in hospital. I made him diabetic and injected him for a while too!

Of course it wasn’t all fun and games. I had to learn all about injecting myself, food, doses, hypos, hypers etc etc. I even had to skip breakfast and run round the hospital to learn what it was like to feel hypo, which is when your blood sugar is too low! I can remember being asked the same sets of questions over and over by lots of different staff, one of which was “are you feeling a lot better now?” The strange thing was, I had become so used to feeling that way I didn’t realise I was ill. I didn’t even know what it was like to feel hungry or thirsty. I kept saying “I felt fine” which annoyed my poor mam I think because I was so frightfully ill but I made it sound like she was exaggerating everything! She told me I used to come home from school crying because I was so tired. I never even thought of how hard it must have been for her at the time. I suppose you don’t at that age. My dad was in hospital too then, something about his back, so she was all alone trying to comfort me and I just thought she was evil for taking me to the doctor in the first place! She has told me since then though that she was actually relieved when I was diagnosed because she thought I was going to die. I can’t even imagine what that must have felt like for her.

So although I was devastated at the time, all I was actually dreading was injecting myself. I now know that doesn’t even come into my top 10 hardest things about diabetes.
Didn’t expect to write this much so I hope I haven’t bored you too much!!
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My aim is to blog about a wide variety of things and hopefully get people who wouldn’t normally read about diabetes learning a thing or two! But if that’s you’re here for, here’s a few diabetes blogs I read:

Ninjabetic

The Bad Diabetic

Betes Blether

T1 HbA1c