Thinking about it, it seems really stupid that something that happened over 10 years ago can still make me screw my face up and cry like a baby (but silently because I don’t want my flat mate to know that I’m upset because it would be too hard to explain to her that I’m crying about something that most people think is a breeze).
I’ve had diabetes since I was six. I was diagnosed just over a month after my birthday but was almost definitely suffering from it before my birthday, in fact I went into hospital two days before my little sisters fourth birthday.
I have only two clear memories of pre-diabetes. The first one being that I was on the yellow table in reception and the second one is the memory of being in bed and being sick over the side (it was a bunk bed). I got out of bed to go and tell my mum and dad I’d been sick and I remember my mum telling me I should have called her if I thought I was going to be sick instead of getting out of bed and being sick on the carpet. I remember thinking that I didn’t get out of bed when I thought I was going to be sick I got out of bed after I’d been sick and couldn’t understand why she didn’t know this. This memory must have been about 2 weeks before I was diagnosed.
The next thing I remember is being in hospital and having something put on my arm to stop me from moving the drip. When I realised what they’d done I was quite annoyed because I sucked my thumb and it made it difficult. I remember being asleep and waking up to find two nurses trying to put pads on my chest, I’m not sure what for but there was no way I was letting them so I pulled them off. I remember getting loads of get well cards from my classmates, all hand drawn. I still have the books with them all in. I remember my best friends grandparents coming to visit me and giving me a leopard puppet which I called Spotty, I don’t remember my friend coming to visit me but I’m sure she did. I remember playing a really good game on the computer and going away and coming back to find the computer gone, I was quite disappointed. I remember talking to the nurse as she took my drip out and it bled a bit more than it was supposed to. I remember the doctors stopping me from having my breakfast on the last day in hospital to see how I coped with low blood glucose. I remember the fact I had already chosen what I was having (Rice Crispies, no sugar, no sweetener, like I’d had every day I’d been in). I remember being really upset because I was really looking forward to my cereals. I don’t remember the first time I tested my bloods. I don’t remember my first injection. In fact, I don’t remember my last one and that was yesterday. I don’t remember any injection I’ve ever done and I’ve done lots.
I remember being in school shortly after I was diagnosed and my sugars were high, the teachers didn’t know what to do so they rang my GP who dealt with adults with type 2 diabetes. He told them not to give me any lunch. I was not pleased and have disliked that doctor ever since even though I now know he was just doing his job and it was probably the best thing they could do for me.
I remember how whenever I went high I’d get made to run around the playground. I remember my first proper hypo. I was at my grandma’s house and the children had gone to bed but the adults were still up. I was being chased by a witch. She was chasing me down this yellow road trying to feed me poisonous cake. I was scared. Really scared. After running away from her for what must have been hours I reached the end of the road and the witch caught me. She forced the poisonous cake into my mouth pinning me onto the ground. I screamed to get a doctor, if she carried on feeding me this cake I was going to die. I woke up. I’d been having a fit. The witch was my mum, the poisonous cake was hypostop to get my sugars back up quickly and I had actually told my parents to get a doctor. They thought it was because I was hypo, I told them it was because of the witch.
I remember when I was about 9. I was in a reading competition with school were we had to recite a poem and I was also doing a bible reading. I was sitting in the teachers classroom near the corner and I was about to do my bible reading. I was feeling quite annoyed because I didn’t want to do it. I wanted to go into the playground and play with my friends. I didn’t like the teacher. I didn’t want to reach my stupid bible verse. The next thing I remember is sitting in the library with my best friend next to me asking the teacher if they’d checked my sugars (she was fantastic). They hadn’t. She helped me check and they fed me something sugary. I remember my mum arriving; I can picture her walking through the doors. I remember a few days later walking to swimming club and the teacher told me she’d saved my life. I knew she hadn’t. I remember talking to my best friend about how she hadn’t and she hadn’t even thought to check my sugars. I remember laughing and I remember how we still laughed about it occasionally years later.
I remember another time I had a hypo. Well, that is partially a lie. I remember waking up one morning with a pounding headache, feeling sick and incredibly ill. I remember my mum walking in and asking me if I was alright and wondering why she was asking, after all, as far as I knew why wouldn’t I be, all that had happened the night before was I’d forgotten to feed the rabbit. I have a memory of leaving the hutch open and the rabbit escaping but I don’t know if that ever really happened. My mum told me I’d gone unconscious the night before and I’d ended up in casualty because I wasn’t coming round. I was quite upset. I’d always wanted to go in an ambulance and the one time I did I was unconscious.
I remember going on a residential trip with school in year 6. They did a talent contest one night and one of the groups had done levitating (not real levitating may I add just something with making a square of people leaning on each other and removing the chairs that had been supporting them). I remember dreaming about how I couldn’t levitate and waking up being scared still. I knew something was wrong and tried to call out to the people I was sharing a room with so they could help me but as much as I tried to scream I simply couldn’t make a noise. I rolled to the side of my bed and tried to wake the person next to me but succeeding in smacking her in the face, which did actually wake her up, surprise surprise. I remember being given lots of sugary drinks and I remember being embarrassed because my bra was on the back of one of the chairs and my male head teacher had come into the room. I remember my mum saying when I spoke to her about it that it was hardly surprising I had taken so long to recover because they weren’t giving me sugary enough stuff. I remember lots of other things in primary school, most of which are good but the ones which bother me the most have to be the ones I’ve just described.
I remember when my cousin got diabetes. I remember sitting in the back of the car talking to my mum about it and it was dark. I remember getting upset because I suddenly realised why she wasn’t dealing with it as well as I did. I remember realising that she could remember not being diabetic and I couldn’t. I remember not being sure whether this was a good thing or a bad thing. I know think it’s a good thing. I think my mind has repressed the memory to protect me. it is easier for me to only remember being diabetic because then it doesn’t feel like I have lost anything. But, I remember being upset when I realised that with the exception of a few, all my memories were when I had diabetes, not all about the diabetes, but all when I had it.
I remember getting cross with my siblings because they learnt that when I said I felt low I usually got food so they used to say it. They didn’t say it to be mean, simply because they wanted food and didn’t understand. I remember one time it actually hurting when they did it because they really didn’t understand.
I remember high school. Don’t get me wrong, most of my memories of high school are positive. I really enjoyed it and partly wish I could go back but it’s not these memories I need to get out my system. It’s the bad ones that need to leave.
There was this girl in my form called Jodie. She wasn’t a very nice girl; in fact not very nice is a bit of an understatement. She was a bully. At Christmas in year 8 I went from doing two injections a day, one at breakfast and one at tea, to doing four injections a day, one at each meal and one before bed. This meant I had to inject at lunchtime in school. School were alright with me doing it in my form room and so I did. One day however Jodie decided to open her mouth and tell me I was disgusting because I had to do injections. This was obviously quite upsetting for me but I don’t think I did anything about it. It was when, about a year later she made a similar comment which really upset me that I filled in an incident form and could have got her suspended. Another incident at school was when a lad called Myles told me it was my fault I had diabetes. Although in a sense it is, it’s in my genes, the fact of the matter is it was an extremely insensitive comment to make, one which I recall landed him in a fair amount of trouble with my art teacher.
I think the one thing that still amazes me is my music teacher. Children I can understand making comments, they don’t understand and can, at times, be tactless, I know I certainly was but a teacher should know better. I had this music teacher called Miss Lunn. Now, Miss Lunn and I weren’t best friends (for some reason she just didn’t like me and made this obvious enough for me to dislike her back) however she still should have known better. I was part of the school production of Grease and because we had a late rehearsal I needed to have my tea time injection. The school toilets were, at best, disgusting, and so using them to inject in was not going to happen so to ensure that I didn’t bother anyone I went to a corner of the hall and got a few of my friends to stand in front of me so that anyone who didn’t want to see didn’t have to. Miss Lunn saw me doing this and told me off, telling me I shouldn’t be doing it in public and should go to the toilets. I presume the staff toilets must be cleaner than the pupil ones were because no one in their right mind would use them, we liked to avoid even using them to pee in! Regardless of the cleanliness of the toilets however she should have considered what she was saying before she opened her mouth. My theory on it is, you wouldn’t tell a wheelchair user to go use their wheelchair out of your sight so why tell a diabetic. I am still human. If you don’t want to see, don’t look. It’s fairly simple. I mean yes, I shouldn’t shove it in your face, but why would I anyway, it’s not exactly something I’m proud of, ‘hey look at me, I’ve got diabetes and I’m stuck with it until I die, which may I add will probably be sooner than you’. I don’t think so somehow.
Another thing I remember from high school is PE. I’ve never been the sportiest of people I will admit but I suspect it is my memories of high school PE which cause me to dread exercise quite so much.
I remember athletics. I enjoyed the winter and spring terms mostly where we got to play hockey and volleyball and do gym, I enjoyed them, but the summer term I dreaded. Right from the start of year 7 I dreaded athletics. I was scared the first time we had athletics, I actually felt ill. I remember the first time we had to do a run. The 100m I was alright with and the 200m I could deal with but anything more than that I went low. I didn’t actually necessarily go low but I felt it. The feeling you get when you have a sudden drop in energy or sugar is the same as the one of being hypo and with the knowledge that a hypo could potentially kill me there was no was I was going to risk it, especially if it meant I got to stop. It didn’t help that I hated my PE teacher and I don’t think she was my favourite fan either, aided possibly by the number of her lessons I ended up seeing matron in. I remember one time I went low and went to matron and she gave me a cup of lukewarm coffee with sugar in it. I hate coffee and lukewarm coffee is even worse than hot coffee. I was nearly gagging drinking it because I didn’t have the confidence to tell her I didn’t like it. I remember how I used to lie to matron when I went to see her and I wasn’t low. Not because I had faked feeling low but because I was worried I would get into trouble because they would think I was faking it when I wasn’t actually low. As I result I lied about being low because it was easier, I didn’t think they’d understand and I still don’t. It’s a hard one to explain to someone who’s never experienced it.
I remember one time I had my breakfast and had my insulin and suddenly thought oh no, I’ve already had my breakfast insulin but I had no way of checking. I remember going low in geography and sitting outside the classroom eating thinking this is it. I don’t know why but I was sure right then that I was going to die. It was a completely irrational thought as I hadn’t had enough insulin to kill me and I wasn’t that low but I remember thinking it.
I remember how I learnt in PE that the best way to get out of a lesson was ketones. I knew that trace ketones weren’t actually going to do me any harm but I had learnt that if it was athletics and I told the teacher they could kill me then I wouldn’t have to run. I only used it a few times and most of those times I did genuinely have quite high ketones, mostly due to worrying so much about PE I’d send my sugars up and get ketones as a result of the high sugars. I was too much of a goody two shoes to completely lie to a teacher but I had a friend who told me she used it frequently.
I remember how I used to dread going home. I live near a bridge over a railway from which I can see my house and I used to reach the bridge and slow down just to delay getting home. I didn’t want to get home. Not because of anything to do with my family, they were fantastic, I couldn’t have asked for a better one but because home was where my diabetes was. There was something at home that made it become more of a reality and stopped me from being able to pretend it didn’t exist. Although it wasn’t something I could see I always picture it as just this grey ‘thing’. Just think of a depressing shape in a really depressing colour and that’s how I picture it. I think it was because at this point I was feeling quite depressed about it and had started to skip injections. I’d got so mad with it at one point I threw my insulin pens out the window to try and get rid of it. Needless to say, it didn’t work. It just meant I had to use syringes until I got some new ones. I think I missed my evening injection that night. My mum told me I’d regret it if I didn’t and even though I knew she was right I didn’t want to listen. I woke up the next morning feeling absolutely atrocious and missed school. It was around this time that I learnt that I could miss any injections but my night time one and still feel alright. I started to quite frequently ‘forget’ my breakfast and tea ones and just skip my lunch ones. Although I very rarely missed all three I was missing enough to have to start making up readings in my record book so the doctor and nurse and the hospital wouldn’t suspect anything. Why I thought that putting in perfect readings would stop them suspecting anything I don’t know but I don’t doubt that they knew something was not quite right.
I remember going swimming with my friends and one of them annoyed me and I got in a mood with them. I was really annoyed and got out the pool. They came after me and told me to check my sugars because I was probably low. I temporarily hated them for this. It made the situation about ten times worse. I refused to check because I didn’t like being told what to do with my diabetes and they went and got a life guard to try and talk me out of the cubicle. I think I must have got rid of her by saying my sugars were fine and I was alright because I can’t imagine she’d have left otherwise. I did actually check my sugars and my friends were right, I was low, but there was no way I was going to admit this to them. Another incident with my friends that upset me was one time at school I got cross with them over nothing and refused to check my sugars. They kept telling me to and one of them suggested pinning me down and doing it for me. Although I’m sure the intention was a good one it came across badly and is something I have never forgotten.
I remember how much I detested doing injections. Sometimes it would take me over ten minutes just to get the needle in because doing an injection actually made me feel sick and quite often would make me cry. I would go into the bathroom at home to do my injections so no one could see how bad it was. The main reason I skipped my injections is because of how it made me feel. I quite often simply couldn’t face the tears and the sick feeling. I just didn’t want to do it.
There were a good few times during high school when I thought about how easy it would have been to end it. I had the perfect tool. I could overdose on insulin, go to sleep and die. It would be painless and easy to work out how much I needed to kill myself. I seriously considered it and several times came to the conclusion it simply wasn’t worth it and I couldn’t do it to my family and friends. Had they not been there for me I dread to think where I would be now. Possibly buried in some graveyard being remembered as that lass who killed herself by most of my classmates. Not a thought I particularly want to dwell on.
I think the missing the injection was probably a cry for help. I knew I was struggling and didn’t know how to talk to anyone. They say self harm is attention seeking and I guess that’s what I was after, not in a bad way but in that it was the only way I could come up with of getting help and missing injections and making myself ill because of it comes under the category of self harm in my book. Although I did have a fantastic support network I still found it hard to make the first move in talking to someone. In the end I ended up emailing the Samaritans who were fantastic. Even though I only emailed them a few times it helped a lot.
I have another memory, albeit a vague one but a memory nonetheless, of having a dream about my diabetes. It was a bad one and I was upset in it and was crying. When I woke up I had actually been crying. I remember thinking I’ve never cried in a dream before and just being incredibly sad.
In 2004 I got lucky and got an insulin pump which meant I no longer had to do four injections a day. It has to be the best thing that’s ever happened to me diabetes wise because I honestly cannot see how I would have lasted this long had I remained on injections. I was meant to get my pump two days before my dad’s birthday and arrived at the hospital to be told the pump rep was ill and was unable to come and give me my pump and train me in how to use it and I may have to wait until after Christmas to get it. To start with I thought it was a joke, I don’t know whether I genuinely did think it was a joke or whether I just so desperately wanted it to not be true I decided it must be. When I found out it was true I was absolutely gutted. Even though I knew I was still getting one it was an awful feeling to think that I may have to wait for a month to get it. I had arrived at the hospital in the morning on four injections a day expecting to leave on one injection every 3 days being able to suddenly start living my life like a normal person. To find out I may have to wait a month for this to happen was not what I wanted to hear. I was however lucky because the pump rep was, in the end, able to come down two days later. I left that day the proud owner of a Disetronic DTron Plus being the happiest I had been in quite a while. I proceeded to name this pump Ralph Scott Lee (my current pump is called Gemima Parkington-Smythe Scott Lee and is ‘married’ to my Ralph. They even had a wedding. They also both have facebook accounts). Weird I know but it helps me a bit because it gives my diabetes a slightly fun element even if it is petty.
A memory I have from about the age of 16 is being out with my friends and we were sat eating sweets and one of them told me I shouldn’t eat so many being diabetic which I corrected her on saying that as long as I had insulin I could eat as many as I like. She told me I was wrong and that I shouldn’t eat them. This argument continued until another of my friends arrived. I remember being extremely annoyed with her because she had no right to be telling me how to live my life especially when she was wrong as the doctors, nurses and books on pumps would back me up on. I was annoyed that she wouldn’t listen to me especially as I was the expert not her. Her best experience of diabetes was me!
I remember before I got my pump I went on an exchange to Germany. With all the excitement I forgot my bedtime insulin and woke up extremely high having wet the bed. I was incredibly embarrassed especially as I didn’t speak good German so couldn’t even apologise to my exchange partner’s mum properly. I remember sitting in a cafin Germany injecting because I had to have insulin every two hours to make up for the fact I’d forgotten the long lasting insulin.
I remember how recently I realised partly why I hated PE so much and why I didn’t go to the gym even though I’d paid for it. I was scared about going low. It upsets me that at 18 I worry about something happening and no one knowing what to do. I worry that one day I’m going to me in my room at university and I’m going to go hypo and no ones even going to realise they haven’t seen me until its too late. I worry that I’m going to go out one night and pass out and people are going to ignore me and leave me there because they think I’m drunk. It scares my that I am allowed to get in a car when if I get my insulin wrong I could kill someone because I’ve made a mistake most people don’t even have to think about. It scares me that one day I’m going to get pregnant and something’s going to be wrong with the child and it will be my fault because I didn’t control my sugars well enough.
I recently did a pregnancy test and got a positive which was followed by 5 negatives and when I saw the doctor he said I’d possibly had a miscarriage. Now I didn’t want to be pregnant but I couldn’t even bear to think about the fact I could have had a miscarriage because if that had happened I’d blame myself and I’d blame the diabetes and I don’t know how I’d cope with the thought that my lack of control had killed something even if it was still at the stage of being just a bunch of cells.
It scares me that I’m going to die early because I have diabetes or that I’m going to get some disease because of it and its going to be something that I could have prevented by having better control. It scares me that one day the funding for my pump might be taken away and I might have to go back onto injections and it will stop being me who controls the diabetes and become the diabetes that controls me.
I hate the fact that when I go low I have to eat. Not as in I have to have some sugar to get my sugars up but my brain just keeps telling me to eat. If I am on my own when I am low I can quite easily eat ten times the amount I need just because my body's telling me to do it and I don’t have the willpower to fight it.
I hate the fact that it feels like no one understands. I hate the fact that people don’t know how bad it feels to be low or high or have been really high and be recovering from it. I hate that I try to explain it to my boyfriend and he doesn’t understand even though there’s really not reason why he would.
I partly hate the fact I can hide it. I can not let anyone know about this part of my life if I want. I can keep my pump clipped to my bra. The meter in my bag out of sight, I can hide the hypos. Hospital visits can be covered up; the medic alert bracelet I’ve worn for the last 12 years can be taken off and left at home. I hate the fact that it’s a secret unless I let it show because that means it’s up to me to tell people even though to me it’s just such an obvious part of me that sometimes it surprises me that people don’t know.
I hate the fact that something goes wrong and its instantly assumed it’s got something to do with the diabetes, I hated it when I collapsed and ended up in casualty that everyone assumed it was because of my sugars when it wasn’t. I hate the fact it can make me ill yet I’ve got so used to it to most people I seem fine. I hate the fact that I can go in on some days feeling absolutely awful because of it (the sort of feeling that would cause man flu sufferers to claim they were dying) yet to everyone on the outside seem perfectly normal. I hate the fact that my quality of life is controlled by money, that if the government decided to they could withdraw funding for pumps and I’d be put back onto injections and would lose everything I’ve gained since getting a pump just because it saves a bit of money.
I hate how people assume I’ve got diabetes because I ate too many sweets when I was little. I was six, I’d hardly had enough time to damage by body that much! I hate the fact that people like the media don’t feel the need to make it obvious that there’s a difference between genetic diabetes and diabetes caused by obesity!
I hate the fact that I feel guilty for hating it all when it could be something so much worse that would kill me rather than something I can control. I hate the fact that I’m sat here crying writing this. I hate the thought that I’m going to be old and still have it. I don’t want it that long; I just want it to go away. I hate the fact that sometimes I resent the people who I love, the people who have helped me through it just because they don’t understand.
I’m scared that one day it might start to win and I’m even more scared that one day I might let it.