Does it ever go away? Does the hope that, if I wish hard enough, I will just stop being diabetic ever go away? Do I ever stop wishing this was all just a really bad dream and I’m going to wake up soon and realise that I’ve just been having a really bad nightmare and I’m six again and the reason I threw up last night was just a simple, short term case of food poisoning that won’t be with me until I’m an old lady? Do I ever get the same blissful ignorance I had when I was in hospital when I was six, the week I was diagnosed, where I thought that diabetes was cool and checking my sugars and injecting were fun? Do I get to stop carb counting without reducing my life-span? Am I allowed just one day off or is this hellish nightmare going to be with me for every single hour of my life? Why when I dream at night am I never diabetic then? Why can’t I just have a few hours where, when I feel short of energy, I don’t have to stab myself in the finger because I think my sugars are low? Why can’t I eat a bar of chocolate without having to look on the back of the packet to see how much insulin I need because of it? At what point does carb counting become knowing not guessing? Why can’t I see ‘now with new, healthier ingredients’ without it meaning I’m going to have to look again to see how much I need to take for it? When will the next time I have a bottle of Lucozade be because I want it rather than need it? When do I get to shake off the fact some idiot in a restaurant has given me sugary coke not diet because it doesn’t matter because my body knows exactly how much insulin I need for it? When do I get to wake up every morning for just one month and my first thought not be ‘I think I’m low’? When am I going to be allowed to go for a bike ride without checking my sugars before, after and at least once in the middle because I know my sugars are going to drop I just don’t know when, or how far, or how fast? When can I walk past a door and get a bit close to the handle without ripping my infusion set out? When can I never see another infusion set or pen or needle or insulin cartridge again? When does it stop being part of who I am? When do I get to drive somewhere without checking my sugars before I go and having to wait until my sugars go up if I’m low? When do I get to feel a vibration in my pocket and it be because someone is ringing me or texting me, not because my pumps running out of insulin, or battery, or has an occlusion, or reminding me on the hour that I’ve got a temporary basal rate set or that my bolus has finished going in. When do I get to not know what basal and bolus mean? What CSII means? What a CGM is? When can I never in my life have heard of Bayer or Medtronic or Roche? When do I get to be upset without feeling like my sugars are going low? When am I allowed to get pregnant without worrying what awful things I could do to my unborn child if my sugars aren’t perfect? When do I get to pay for my prescriptions because I haven’t been put into a group that entitles me to them for free? When am I allowed to consider moving abroad without the worry of how I would pay for my diabetes? When can it not be my diabetes but be yours? When do I get to not feel guilty for thinking that, because I wouldn’t wish diabetes on my worst enemy? When can I feel thirsty and not think ‘oops my sugars must be high’? When can I say I’m high and mean on drugs or say I’m low and mean in mood? When can I stop walking across the kitchen, looking like I’m really drunk and it be because I’m actually drunk, not hypo? When can I go out without having to take a bag because I need to take my meter, water (for if I’m high), lucozade (for if I’m low), glucose tablets (for if I run out of lucozade), glucogel (for if the lucozade and glucose tablets aren’t working), a spare infusion set, syringes (for if my sets fail) as well as my purse? When will someone telling me there’s a new pump out with CGM built in not fill me with excitement? When will my highlight of the day not be that I managed to not go above 10mmol/L all day? When will that be my highlight of the day? When will I not hope that that is the highlight of my day? When will the prospect of the NHS paying out over £2000 a year for me fill me with dread rather than hope? When can I be Amanda Smith, born in April 1991, about to move to Leeds to start my teacher training rather than Amanda Smith, born in April 1991, about to move to Leeds to start my teacher training, diagnosed with Type 1 Diabetes Mellitus on 18/08/1997, two days before my little sisters 4th birthday, on insulin pump therapy using Humalog since 26th November 2003, on my dads 44th birthday, most recent BM 9.2 mmol/L? When am I allowed to say that without people criticising me for letting diabetes define myself? When does diabetes stop defining who I am? Am I letting it define me? Because if I am, why am I failing so much when I’m trying so hard not to let it? Why does my side ache because I’ve been crying so long because I just want a break? When can I be normal? When can I be like you?
When will I get my hba1c below 7%? When do I get to have a day where I don’t go low multiple times? When do I get to have one where I don’t go high multiple times? When do I get to not make my finger bleed 14 times in one day just to get good results? When will asking for a CGMS become a realistic request rather than wishful thinking? When will the decision about what treatment I’m entitled to be made by someone who cares about people not numbers? When will my doctor be allowed ignore the guidelines that say I have to be doing x, y and z to be allowed to stay on my pump and let me stay on it because it doesn’t make me want to kill myself? When am I going to be allowed to not feel guilty because I’m ‘lucky’ to have a pump? When can I stop hating the fact I love my pump? When will having a really bad month not make me worry my pump will be taken off me because my only way to relieve a bit of stress is to let my control slide a bit? When do I get to stop wishing I wasn’t diabetic and just accept it, because at the end of the day, while I may hate many aspects of it, I’ve met lots of great people because of it, have a heightened awareness of what food is good and bad for me and it doesn’t allow me to slack on exercise because I have to do it very regularly or it affects my sugars. When do I get to do a long drive and not have to run my sugars high because I can’t risk going hypo at the wheel? Why do I have to wait to get a piece of technology that has the potential to make my life so much easier and so much longer? When do I get to have really tight control without risking my driving license? Which do I value more, my driving license or my health? When will I be allowed to know exactly what is going on during the night without having to wake up every 30 minutes to test? Why do hospitals seem to think that testing every 3 hours during the night tells you anything at all about what’s happening? When will a doctor listen to me when I present them with my readings and tell them that yes, my early AM readings are averaging at 14mmol/L, but that is because the only time I wake up at those times is when there is something wrong, if my sugars are fine, I don’t wake up so I don’t check and anyway, that average is based on 3 readings across 6 hours in 2 weeks and I am not stupid enough to increase my basal at those times based on 3 numbers however I am also not stupid enough to disagree with you so I will nod my head, say mmm and pretend to memorise what you just told me with the full intention of completely ignoring it and just do some night time testing to see what is really going on. When will a doctor listen to me when I say I am following all the rules in the rule book and it’s just not working, probably because I am not the norm (if I was, I wouldn’t need to follow the rule book would I?) When will the majority medical professionals stop being so short sighted as to assume that every single time something happens to me it’s related to diabetes? Amazingly, I too can collapse in a very hot, very loud arena and it be because it was very hot and very loud, not because I’m diabetic. I’m not diabetic, I’m Amanda. When will I be listened to when I say no, it’s got nothing to do with my diabetes, I just had a panic attack? When will I not have to introduce my BM machine to a class full of children and explain to them that Miss Smith has to make a little bit of blood come out of her finger and make the machine look at it to tell me a number that tells me if I need to have something sugary to drink or not? When will I be able to go out without a bag because all I need to take with me is my purse and some glucose tablets? When can I make another facebook page for my CGM enabled pump and set it as the child of my previous pumps? Why do I have to wait until I get my first full-time job until I can definitely use CGM because at that point the hospital has no say in it because I will self fund? How is it fair that the NHS gets to decline me something that makes my life just a bit more normal?
I don’t want a miracle. I don’t want to live forever. I want a lump of plastic that I get to wear every minute of every hour of every day. I want it guaranteed. I want to be able to see what my sugars are doing all of the time, not some of the time. I’m not asking for a cure. I’m not asking for the impossible. All I want is to be allowed to be a bit a more normal. Normal. Like you.