Hi again!

So it’s been a while since I’ve had a chance to write anything lately! Life’s been kind of crazy for me, but thankfully all in a really good way.

Unfortunately, as with all things in my life, it’s been having a major impact on my blood sugars! I’m really excited about all the changes going on, but I’m also really nervous which is causing massive drops in blood sugar. Last Friday, I didn’t do any insulin until 9pm (other than my background insulin that’s always in my system). I had to keep a tight check on my bloods but it was a really bizarre feeling, eating and drinking knowing that I didn’t have to do an injection. Surely my reaction should have been “This is amazing!” but it just gave me such a feeling of uneasiness.

As with any change, no matter how exciting, it also causes some stress. Of course, this has thrown in some pretty high blood sugars, along with all the lows. All it means, is that I’m having to keep an even tighter check on my sugars, which lets face it, can only be a good thing.

Hopefully I’ll be all settled with some free time by next week so I can get back to rambling to all you lovely people! But for now, I just wanted to thank you all so so much for all your comments, likes, shares etc etc. When I begun this, I never thought I’d be getting views from all over the world, or comments from complete strangers that honestly make my day!

So thank you all and please bear with me!! Xx

A Parents point of view

Something a bit different tonight. Below is a post written by my dad, giving a parents point of view on life with a Diabetic child. I’m forever grateful to both of my parents for what they have been through, what they have done and the support they always have for me. As always, please view, subscribe, comment and share my website to help me keep raising awareness.

Ours was not a typical introduction to this most insidious of diseases.

Kelly, over a period of several months had noticed a subtle change in our daughter; headaches, Hollies pallor usually if she hadn’t eaten and for Kelly, an overwhelming feeling that something was not quite right.

Hollie was a happy, well-nourished child, but never fat, an allegation frequently leveled by a misinformed public; so we visited our general practitioner and so began a run of tests, taking my wife’s concerns seriously as he himself said you should never underestimate a mother’s intuition.

We were called by our GP practice telling us to take Hollie to A&E as they had reason to believe she was diabetic. Numbly we did this but blood and urine tests were normal. We were advised the original test results must have been a blip and if we had any further concerns to return to our GP.  We did, and asked if she could be beginning to develop diabetes.  The GP said this was his thinking, he would repeat the fasting blood test and if this was again borderline he would refer her back to hospital.  They were and we were referred to a specialist at Alder Hey.

When we met the specialist, she asked Hollie was she worried and what was she worried about.  “Diabetes” she replied.  The specialist told her don’t worry about that, whatever it is we will find out but you’re definitely not diabetic. We were all kind of relieved but that just gave us fresh concerns over what was actually wrong.

The first test we were called back for was a glucose tolerance test.  Hollie arrived at the hospital having fasted, a blood glucose reading was taken then she was given lucozade to drink and her blood sugars were taken again at set times.  When we saw a nurse rushing off we asked if everything was ok and he replied “No the reading is very raised.”

 The same consultant came back to apologise for her earlier statement and she was then diagnosed with diabetes.  Hollie was referred back to a consultant at our local hospital who stated it was diabetes, but highly unusual in its presentation.

Most diabetics are discovered when they are taken to hospital in ‘crisis’; meaning their blood sugars are dangerously high and causing them a lot of harm. In some small way we were lucky Hollie’s diabetes had been realised early, but it doesn’t change the diagnosis. So unusual were Hollies symptoms the consultant speaks of her in his lectures

Initially Hollie’s treatment required one injection, every evening. Personally, I went a whole gamut of emotions, so desperately sorry that Hollie now, at nine years old would have to face a life time of injections, a constant burden of self-awareness, a balancing act of insulin and blood sugars.

I took the turn of the first injection. Previously I had done my best to rationalise and not so much deny the situation but not think about it, but there was to be no more hiding. I did what thousands of other parents have to do every day, against every instinct of protecting your precious child I gave her an injection. Fortunately for Kelly and me, Hollie decided she would be the one to do all further injections, and she has ever since.

As I said, initially it was one injection and Hollie had to eat only as much as the medication allowed, very cruel at Christmas, but by Easter, having initially progressed to two Hollie was on four injections a day and as unpleasant as that was, it gave Hollie the flexibility to eat what she wanted and medicate accordingly. Now she is over eighteen we have the compounded issue of nights out, everyone worries about their child going to pubs and clubs, now add the fact alcohol again alters blood sugars but also impairs people’s judgement. You don’t sleep too well those nights especially if they don’t come home and stay with friends.

We get to be very proud of how grown up and responsible our daughter is, but you never escape the flip side. The constant fear at the back of your mind, when Hollie get a cold or an infection, small ailments can get big quick due to higher blood sugars and that’s before you factor in hormones, that crazy chemical roller-coaster that leads to a reduced effectiveness of insulin, so you have to administer more, carefully, your best guess, as too little can be ineffective and lead to organ damage, too much can put you in a coma.

This is not once or twice, this is every day. You do get used to it, but as a parent you are always vigilant. You have to trust your child more deeply, even though sometimes you know you are not getting a true picture. To further complicate matters for Hollie, in a cruel twist she has a couple of times appeared to produce her own insulin again, this has muted a possibly theory that Hollie’s pancreas is dormant not destroyed, as in other diabetics and perhaps she is lacking a trigger enzyme which activates her pancreas. Who knows it may turn out to be another classification of diabetes (as there are more than 1&2). As far as we know no further investigation is being conducted in this area, who knows with this blog maybe someone will.

So if you’re out and about and you see someone who appears to be drunk or confused take a moment, smell for alcohol, they may be a diabetic in need.

“Sorry, I’m low”

After how serious my last post was, I thought I’d go for a bit of a lighter topic today!

I’ve been really suffering all weekend with hypos (low blood sugar), and I’ve done a couple of stupid things, and it got me thinking about all the weird things I’ve said and done when I’ve been low.

Now I know low blood sugars aren’t really something to joke about, I’ve been on the end of some really bad ones, but you need to be able to see the humour sometimes! I’ve mentioned before, hypos cause me to shake, feel sick and I can become really confused and emotional.

As I said, I’ve suffered some bad hypos this weekend. Not entirely sure why, but I’ve adjusted my insulin and I’m not suffering as badly today, thankfully. I spent most of yesterday in bed, but managed to drag myself out to the shops about 4pm. I hadn’t hypoed for a couple of hours and finally felt a bit more human. I went into town, picked up a couple of little bits and headed back to the bus stop to go home. Well I was half way to the bus stop before I realised I was still pushing the trolley from the shop and I was attracting some weird looks. I stopped and realised I didn’t even remember getting to where I was. I then felt myself begin to shake and I suddenly felt so nauseous. Yep, I’d gone low. Ignoring the urge to abandon the trolley and walk off like nothing had happened, I turned round, took it back and rang my brother asking him to come meet me because I’d gone low again and needed a hand.

In the past, I’ve done some even weirder things. Or at least I’ve been told I have, I don’t always recall what I’ve said / done after a bad episode. A favourite of mine was from when I was about 13/14. My mum came in to check on me before she went to bed and I was asleep. She tried to wake me and ask if I was okay. I’m not entirely sure what got said, she must have asked me how old I was or something (when they suspect I’m low, they sometimes ask questions like this, you’re about to read why) and my genuine response was “I’m 21, I’m driving the night bus and I’m wearing a funny hat.” (Yeah, I think I’d watched Harry Potter before bed). She woke me enough to test my blood and sure enough it was low.

I use to have one of those sofa beds, with a little ladder leading up to the bed and I remember once being low, trying to get out of bed and attempting to climb down the wrong side. It didn’t go well, how I didn’t break something I have no idea.

However a firm favourite of my mum’s, and a story that still gets brought up every now and again, was the time my brother went upstairs to tell her “Hollie’s finally lost it”. She came downstairs to find me in the kitchen with tea all over the counter, and me stood there, seemingly completely fine, trying to make a cup of tea in a bowl. She asked me what I was doing and I informed her I was making a cup of tea in the microwave. Naturally, she asked why I was trying to use the microwave and I turned to her in disbelief and told her “because that’s how you make it!!” She still to this day laughs at how determined and confident I seemed in that I was right and she was wrong, to a point where she even questioned herself for a minute. Obviously she realised I was low and sat me down while she brought me something to eat.

Other times, I’ve been out shopping and gone low. I start snarling at everyone, glaring and muttering under my breath. (more than usual). Once I just sat down in the middle of an aisle and started crying. It can come on so quickly, sometimes I’m not even sure myself what’s wrong. I’m lucky that family and friends normally spot the difference in pretty fast and are pretty understanding. I’ve lost count of amount of times I’ve come round from a hypo and had to go and apologise to people for the way I spoke to them, but normally they’ll laugh it off.

That’s what’s so important with this disease. Having people to laugh with and be supportive. I know I don’t need to be embarrassed or worried about anything I might say or do when I’m not quite myself. It’s like that Snickers advert, “You’re not you when you’re hungry”. I feel like it should be my little motto or slogan or something, “You’re not you when you’re bloods are high / low!”.

Depression & Diabetes

I want to start by saying that this post took a whole lot of courage for me to even consider publishing. I have put it off and put it off, I’ve written it, deleted it and started over so many times I’ve lost count. However, I really do believe in trying to raise awareness, and the only way that this will be achieved is to speak up. I think even people who have known me a long time will be surprised by this post. So a forewarning, this might be miserable, but it has a happy ending, I promise.

Diabetes does have a big stigma around it. I’ve said it many times before, but it really is true. Another condition which suffers in the same way, is Depression, and unfortunately the two are often linked. After all, there are times when it is depressing to feel like a human pin cushion, like your blood sugars will be never be in range, realising that there is no break from this disease.

Depression affects a massive amount of people and still there is not enough help or support for those who suffer. It is another condition that leaves no visible trace, and it’s so hard to explain to anyone who has never felt it. I would know, as I was diagnosed with depression at 14.

Now what is important to keep in mind, is there a difference between being a bit miserable and being depressed. I’ve felt both and they are not the same in any way. I’d take feeling miserable over the dark numb ache of feeling depressed, any day. Sometimes I can feel it creeping up on me, it comes and washes over me until I feel like I’m drowning. Other times it hits me out of nowhere, and it’s as if a wall has been thrown up that I just can’t get past. All I want to do is lock myself away but I know that is the worst thing I could do.

I suffered from an eating disorder around the same time I was told I was suffering from depression and the issue I have with my weight has never gone away. I can go for a long time barely eating and sometimes when I do, it takes all my self-control to not go and make myself sick. I’m convinced about 95% of the time that I’m overweight.  It didn’t help that when you suffer from high bloods, it can make you lose weight and when I was younger, to me, it was worth the risk. I wish 21-year-old me could go and tell 15-year-old me that her weight is fine and she needs to look after herself.

As I said, I was first diagnosed with depression at 14, going on 15. There were varying underlying causes of this, but a big focus was on my diabetes and how I could get to grips with it and start looking after myself better. I was in counselling for a while and although it never truly helped, it was a bit easier to deal with. I was about to write that I was okay for a few years, but even in those few  years it was hard. You can try and keep your head above water as hard as you like, but eventually it will wear you down. When I was 19, various events occurred and I really lost my ability to try and battle through. I began to suffer badly with panic attacks, nightmares, I was a bit of a wreck and if I didn’t look it on the outside, I more than made up for it with the way I felt inside. I was so desperate to not let it show and to keep up the image that I coped with everything fine that I think even people close to me were surprised when they found out how much I was dealing with. I knew I needed help and it took a lot of courage, but I eventually went to my GP and broke down. I was offered a new type of counselling (which I took) and put on anti depressants and as silly as it sounds, I was gutted. I just wanted to be happy, I didn’t want to be questioning whether my happiness was natural or induced by tablets, but I knew I had no choice.

The first two weeks were even worse. The tablets knocked me out, to a point where I had to stop taking them in the morning and switch to the evening as by 10am I was like a zombie, I just didn’t function. The nightmares were made even more vivid and intense, whether that was a result of the tablets or just me being knocked out into a deeper sleep, I’m still not sure. I was grinding my teeth all the time, something I never do and I just generally felt restless. After a while the tablets kicked in, the panic attacks eased and I found it easier to go about my day-to-day life. I think a lot of people believe that anti depressants are some kind of magic that make everything better, but in my experience, they make it bearable, not better.

After about 5 months, I knew I needed to come off them but I was so worried about how I’d feel once I did. What I found was that after a while, it wasn’t so much they were picking my mood up, it felt as if they were pushing it back down. It felt like there was a lid being kept on top of my emotions, restricting me from feeling anything much. It was a new kind of numbness and it was horrible feeling so detached from everything and everyone around me.

“Just snap out of it”, “Stop being so negative”.

I know that there are times I’ve not been able to make sense of how I’m feeling myself, to try and explain it to others is damn near impossible. It’s not as easy as that. It’s not a case of trying to feel a bit more positive, it’s trying to feel anything at all other than your own personal darkness.

In the same way it irritates me when Diabetes is joked about, it irritates me even further when Depression is mocked. It’s so hard to face up to, to admit that in fact you think there is something wrong and you aren’t just having a bit of a rough time. So to finally come to terms with it, get the help you need and then feel as if people don’t believe you or are laughing at you, is crushing.

I promised a happier ending to this post and there really is. I’ve been off anti depressants for over a year now, and there are still days when it’s hard for me and I just shut down a bit, but I feel more able to cope with it then I did before. If you or someone you know is suffering from depression, it’s important to know you have got support and I can guarantee that you will from somewhere. I wish I hadn’t bottled everything up for as long as I did because I think it builds up to a point where it has to explode in some way and it isn’t healthy.

Talking helps, writing helps, knowing you aren’t alone helps.

“Be kind, for everyone you meet is fighting a hard battle.”

Diabetic Baggage

Living with diabetes is a huge responsibility that also requires a lot of organisation, and those two words probably aren’t the first ones that come to mind when my family and friends think of me.

In spite of this, I try my hardest, but when you are diabetic the simplest of trips or days out require a lot of forward thinking. How long will I be out? Will I be able to test or inject somewhere clean and preferably quiet? What / Where will I eat? How much medication do I need to take? I want to say that I miss the days I could just go out, but truthfully, I don’t even remember a time that I could.

Whether I’m out for the day, or out for the night, I need a lot of stuff. Blood testing kit, Insulin (both kinds), Needles, Tablets, Glucose Tablets in case I have a hypo, snacks in case my bloods start to drop, the list is endless. Not great when you want to take the gorgeous, dainty clutch bag you’ve just been bought and it’s looking more like you’ll need a rucksack to get out the door. Travelling light is not always an option.

In a more emotional sense of the word, being diabetic often feels like major baggage.

I’m lucky that my friends and family are understanding, but to be perfectly honest, it’s hard to not feel like a burden a lot of the time. There have been times, on a family day out where my bloods have dropped and I’ve begun to hypo, only to realise I had no glucose tablets or other form of sugar, and we’ve had to head back to the car or even call it a day. On a night out with friends a few months back, I underestimated how much alcohol I would drink and sent my blood sugars too high so whilst they were dancing, I was just stood fighting the urge to pass out or be sick.

Most recently, I’ve had to pull out of going to Ibiza with the girls for my best friends 21st because I’m too worried about how my body would react, my GP couldn’t recommend I go and I wouldn’t want to even risk messing up her week. I love her to bits and she was understanding, but it makes me feel so guilty, as if I’m ruining things for everyone else, purely because I can’t get a grip of my own body. As much as I like to just get on with things, I hate when reality hits and I have to accept that I’ll never be entirely “normal”. But who wants to be normal anyway hey?

Relationships are hard, at least at the beginning. From not wanting to tell any potential boyfriends, to having to try and talk them through it all and explain as much as he will need to know without scaring him off, is something I put off for as long as physically possible. It’s daunting enough for me, but I don’t have a choice, I have to face this and do my best. A partner doesn’t have to, they can walk away and it is always a worry. I’d never judge anyone who decided they couldn’t handle what being with me entails. In some ways I would respect them more for at least having the guts to walk away. After all, I’d rather have someone who really wants to be with me and face all my battles alongside me, than someone who would rather be elsewhere but was staying out of guilt or some sense of duty.

I do try bury it, but sometimes I get a genuine sense of grief that I’ll never get to be as spontaneous as I may like. Me and my best friend constantly joke about running away together. It’s often our first text to each other when we get into work, “Can we just run away? Why haven’t we ran away to somewhere hot yet?” And obviously it’s a complete joke and we never really would, but how sad that one of my first thoughts is always “Where would I get my medication??”

I don’t think the sense of guilt, or feeling of being a burden will ever truly go away. It’s something I’ll just have to get on with, and I hope that in surrounding myself with people who love me for me, needles and all, the feeling may at least ease slightly.

Taking back control

A few people I know like to believe they know the ins and outs of this disease, when they really don’t. But there are people within our healthcare system that really should know most of what there is to know when it comes to Diabetes.

Personally, I’ve never had a great experience with my hospital or the consultants / specialists / nurses. Now don’t get me wrong, this hospital has saved my life and I will forever be grateful for what they did for me. However, when you are visiting a clinic where the people are supposed to be specialists, it’s always worrying and kind of upsetting when you go, just to be made to wait for hours, for someone to look at a few numbers on a page and tell you everything you are doing wrong.

I understand that diabetic specialists have trained for years to learn about this disease, and I genuinely respect them for it, but it will never top living with Diabetes day in, day out, 24/7. I’ve said this before but it really is true, each diabetic is different and different things will work for them, but I’ve learnt that I prefer a little trial and error on my part rather than someone telling me what “should” work. I lost count of the amount of times I would be questioned on something I had said, as if I was making things up. They did not understand that maybe my diabetes didn’t always follow the rules, and I am almost 100% sure I was not the only one who felt this way.

There have been times when I was younger and my parents would ring the hospital for advice, the general hospital as it was normally at a time when the specialist clinic was shut, and the general nurses had no idea about Type One Diabetes. My mum once got told that they would call her back once someone had “read up on it”. Not very encouraging when you have a young unwell child.

I began my current job when I was 17, and it became harder to make hospital appointments. My work were very understanding, but the problem was within the hospital itself. I once had an appointment for 2pm so I took the afternoon off work. It was a good job I did, as I was sat in a waiting room for 2 hours before a nurse saw me for 10 minutes. It wasn’t anyone’s fault as such, they just didn’t have enough staff and they were doing their best, but it’s hard to plan an appointment, say to work that you would be back for a certain time when you could never guarantee it. Another time while I was in there, a nurse who had never spoken to me before, just skimmed over my notes, looked up at me and snorted with disgust as she told me “I was going the right way to end up blind, or with my foot chopped off”, as if that was what I was aiming for. I was 18, sat on my own in hospital, fed up and that comment not only scared the life out of me, but angered me to the point where I had to walk away.

I was constantly having to change appointments and it resulted in me being discharged and labelled “non-compliant”. I was so angry, after all I was trying my hardest, but I wasn’t risking my job for an appointment where I wouldn’t get to see the right people or I’d just be treated like some kind of idiot when I eventually did get seen.

It spurred me on to get a grip of things and look after myself better, to prove a point. Admittedly, I should have had this attitude the whole time, but this really was a turning point for me. Fast forward a couple of years and my Hba1c is the lowest it has been in for a very long time, all my other blood test results are pretty good too and that’s all down to me and my handling, not to mention the amazing support I get from my family and friends.

(Hba1c is a blood test that, to put it as simply as possible, gives an average figure of how my blood sugar levels have been over the past 3 months)

I really want to stress that I’m not just attacking nurses or the NHS, etc. I understand that a lot of health care systems are currently over worked, under staffed and not on the wage they deserve. They do the best they can do and I am grateful, but there have been times where I’ve just been treated with an ignorance or a rudeness that’s unacceptable.

I know there will be at least a few people reading this, who will feel the same, or will be experiencing the same right now. If you are, then seriously, you need to know that you will get there. I would come home from the a hospital appointment and cry for what felt like forever, convinced that I was never going to get the hang of this and I was destined to never get to grips with being diabetic.

Now, I might still have some way to go, but I’m doing better than I ever was before, and that’s down to my hard work and I really am proud of how far I’ve come.

Highs, lows and being diagnosed.

Diabetes revolves around blood glucose levels. (Also called blood sugars/bloods/sugars/levels).

A non diabetics blood sugar would be between 5mmol and 7mmol. I know this is measured differently in different countries, but I’ve only ever used mmol. I have had lows of 1.2mmol and highs where my meter has lost the ability to read exactly how high my blood is, I just knew it was above 30mmol. I’ve mentioned before, anything can impact my bloods and I have to monitor them constantly.

When I was 9, I became ill. If I didn’t eat enough, I developed a headache, I felt sick, and I went white as a sheet. I also lost a lot of weight, although this wasn’t noticed by anyone at first as I lost it so gradually. So my mum took me to the doctors as she thought I was suffering from hypoglycemic episodes, which is basically low blood sugar. I was referred for some blood tests, and it was a case of wait and see. About a week later, my family and I were shopping at a big outlet type shopping centre. It was one of those days where you were treated to a McDonalds and some sweets in return for behaving as you were dragged around a bunch of shops you didn’t care about.

When we got home, there was a note through the door from the doctors. They had been trying to get hold of us all week, and after a few failed attempts, they had turned up at the house. The note said that my blood test results indicated I was diabetic and I needed to get to A&E. We rushed up there where I underwent some more blood tests. After the day I’d had, with the food I’d eaten, you’d expect high blood sugars. Nope, all fine, all normal and I was sent on my way after a pretty scary few hours.

We thought that would be the end of it, but my GP requested a repeat of the original fasting test, as my results were borderline and he wanted to see if it really was a one-off. To cut a long story short, the results came back the same and I was referred to Alder Hey Childrens Hospital for further testing. Now the first consultant I saw, told me not to worry, as I was “definitely not diabetic” … Imagine telling that to a scared 9 year old. I thought I was off the hook, I thought that was it, the tests would be fine and I could go back to normal.

Nope. I went back again a week or so later for a glucose tolerance test. It basically meant me sitting in a hospital bed all day, playing games and drinking a big bottle of Lucozade so they could do my blood sugar again and compare it to my blood sugar before I had drunk the Lucozade. A few hours pass and I’m called in. My blood sugar was 24. It was the most crushing, heartbreaking feeling. My first thought was honestly “Does this mean I’m going to die? Why isn’t my body working?” It sounds silly, after all, this was 12 years ago, but trust me, you don’t forget a moment like that.

The months that followed were a complete re-adjustment of my life. Learning which emotions did what to my bloods, what foods I could eat and what foods to avoid. (This was before the 4 injections a day begin. At the beginning it was just 2). My entire world was turned upside down and it was never going to go back to how it was before. Growing up is bad enough, growing up with this hanging over everything you do, is even worse.

Nowadays, this is just my life. It’s the norm and I get by most days just fine. There are still days when I drop too low and some days when I go to high, it’s all trial and error, hoping you judge things correctly and hoping that if you do get it wrong, you realise quickly enough to fix it before it gets too serious

Diabetes is like walking a tight rope, but as time goes on, I’d like to think I’ve gotten pretty good at balancing.