It’s coming to the end of Diabetes UK Awareness Week. And that’s something I never thought I’d have to talk about on here. But here I am. And this is now a part of who I am. And as much as I find it difficult talking about this at the moment, I refuse to lose my voice, or submit defeat, or try to hide. This post follows my internal thoughts as I reflect on questions or statements that I have received, many daily. All these are true. It’s hard to share, but it also feels good to share, not for pity or sympathy, but merely for awareness.
And if it helps you understand me a bit better, or perhaps give you an appreciation of anyone who is chronically ill, then I’m willing to take the chance, because I don’t want anyone else newly diagnosed to have to think these dilemmas over and feel like they are alone. And I would hope that society can change to be more sensitive, and more understanding. But equally, I realise they can’t do that without us being honest. And, fittingly, this year, Diabetes UK have called on people to share their stories, talk about Diabetes, its perception and its complications. So here we go.
Warning – this is quite long… but this is because this is also a record for me, to work through some of the emotions and difficulties. So feel free to skip and skim, I don’t mind at all 🙂 If you would like shorter, more literary or more abstract reflections on chronic illness, you’re probably better off here and here.
1. “I didn’t know you had Diabetes.”
Well, to be honest, neither did I until very recently. I am now at the 75 day, 2 and bit months mark. It’s still new. From my HbA1c results, blood tests which show Diabetes control over a 3 month period, it seems I could have been developing it for well over 3 months. A good HBA1C will range from 48-58 mmol. Mine is currently 99, though when I was first admitted, it was 123. So yeah, I have Diabetes. But we didn’t know. Before you say it – I didn’t experience any of the normal symptoms: increased fluid intake, increased urination, dramatic weight loss. I was just tired. But at that point, I was in the middle of studying for 4 A levels in amidst all the other chaos of life. I was allowed to be tired. We didn’t know.
It all changed on Easter Sunday. I was away, trying to escape A levels for just a quiet weekend in the country, walking with the family, eating roast dinners, ticking off another Cathedral on my list, and celebrating the resurrection in a tiny parish Church, fulled to the brim with the faithful, the strains of ‘Jesus Christ is risen again, aaaaaaaaalleluia’ accompanying the background moo of the cows in the next door field. That was how it was supposed to be. It didn’t quite go to plan.
I’m not professing to be the fittest girl on the block. Not by any stretch of the imagination! But standing up to sing hymn is well within my regular abilities. In fact, I do it pretty much 8 times a week. On Easter Sunday, in that idyllic little Church, where the Lady of the Manor stands with a basket of foil wrapped Easter eggs to follow Communion, I could not stand to sing a hymn. I couldn’t even stand, let alone stand and sing. My breathing got faster and faster, and then I couldn’t breathe. I couldn’t do anything but collapse in a heap. I don’t remember much of what followed, until I woke up in intensive care in hospital on the Tuesday morning, in bed 1, labelled ‘Critical condition,’ with only a hazy recollection of being poked, revived and jabbed in a resuscitation room. Two Doctors, Dr James Orr (Dr Jim), and another affectionately labelled ‘Dr Chirpy Cheeks’ by my parents (heaven knows what his actual name was), sat me down, looked me straight in the eyes and said: ‘your life isn’t going to be the same again.’ Ward Round always carried a sense of fear from that day onwards. That’s when I found out.
More thoughts on this experience and diagnosis are found here.
2. “But you don’t look like you have Diabetes”
Really? Well I guess that’s a compliment? Or not. What should a diabetic look like? Are we supposed not to look normal? Or do you mean that I don’t look like how the media portrays diabetes? The media makes diabetics feel like a failure. They make it seem like all diabetes is caused from over-indulgence in sugar and a lack of exercise. Obesity is pinpointed. It’s just not true. And it’s not fair. 90% of Diabetics are type 2, sure. But type 2 equally has a range of causes, not just obesity. It’s not fair to judge someone like that just because of their diagnosis.
I’m one of the 300 000 people in the UK who make up the other 10%. The Type 1s. Type 1 has no one known cause. It’s triggered by an autoimmune disease that no one can quite pinpoint. It is more likely in people who suffer from a virus simultaneously to a period of stress. There is 0.8% chance there is a genetic predisposition. But it is not hereditary.
So yes, I don’t look diabetic, because I refuse to let ‘diabetic’ define me. But also, no, I would contradict you and say that I think I do look diabetic. Because diabetics look just like you.
3. “But it’s just an eating thing, no big deal”
Actually it kind of is a big deal. Especially at the moment when it’s all so new. I woke up on that Tuesday in the hospital and it felt as if life had come crashing down. Yes – I am so grateful now that I have a condition which is manageable. But it has no cure, and comes with many complications.
So it is a big deal. A lifelong deal. And a deal that there is no answer to. My blood glucose changes day by day, and not just on what I eat. I have had two pieces of buttered toast with marmite and a cup of tea, basically every single morning for breakfast since I have come out of hospital. I don’t think I have ever had two readings 2 hours post breakfast that have been the same. It varies on the weather. It varies on my activity level. It varies on my mental activity. It varies on my stress level. It varies on how I’m feeling. It varies on how much sleep I have. It varies on the time of the month, on the time of the day, on the time of year. It’s impossible to predict. You just can’t. I have to check it at least 8 times a day, and mostly more.
And it’s not just about eating. For sure, I count carbohydrates, calculate an insulin dose accordingly and give it. I test my blood sugars and ketones daily. There are safe ranges and unsafe ranges, and it feels a bit like walking on a tightrope to try and keep within range. Most days I start off low, and by the end of the night I’m soaring high. I have to treat lows and highs. That’s the bit that most people are aware of. And most people are aware that I can’t just eat whatever I want whenever I want it. I have to eat meals, and really nothing in between. I can’t let anything pass my lips without considering counting the cost. And last night, all that I could have for dessert were 5 Maltesers. They looked pretty meagre in that tiny bowl. And it was really hard to watch my brother measure it out on the scales. This isn’t just changing my life, it changes everyone’s. It hit me a bit, but maybe that was also because of the wine..! But this is also so so much more than Maltesers.
It’s about the time it takes. 10:30 every Saturday morning, you’ll find me in the surgery, having a weekly check up. It takes about half an hour to walk there and half an hour back, and I usually spent at least half an hour there. My blood pressure is low. I’ve lost more weight. The checks go on. Over half term, I spent two days in hospital. I have meetings with DSNs (Diabetic Specialist Nurses), Diabetic Consultants, Dietitians, Ophthalmic Consultants, Podiatrists, and for the last few weeks I’ve spent time in Phlebotomy getting drained of more bloods, and I have had to have IV fluids of Potassium and Magnesium Sulphate.
It’s about the complications, though much of it is precautionary. I am at risk of developing a loss of sensation in my hands and feet. I am at risk of a form of blindness. My eyesight has deteriorated so I wear my glasses permanently. I lose approximately 1kg of weight every week. I am a lot weaker, and get tired more easily (though the plus side is lots of naps!). I have low blood pressure, and my electrolytes are having a heyday, revelling in the chaos they are causing. I may be developing Coeliac disease, and I am anticipated to develop thyroid problems in the future. I am losing my hair at a stupidly excessive rate. I bruise super easily, partly due to my pre-existing blood condition; you would have been forgiven for supposing I had had a tattoo when I came out of hospital, had you seen my left arm, dark purple with green tinges around the edges, from the elbow downwards, an effect of all the cannulae and injections.
My long acting insulin (I have two types) is currently not working as it should, and I am developing insulin resistance, but I can’t change until after my exams are over (2 more weeks…) which means I am gradually experiencing great pain when injecting, and a sharp stinging response to my insulin which lasts about 10 minutes after each injection. I have to up my insulin by two units every two nights to counter resistance; I started on 8 units, and I am now on 33 units. But every time I increase, there is a risk that I will hypo during the night. So most nights, I have to wake up at 3am to test my blood sugars. Once a week I should do it more often at night. It’s exhausting.
And for everyone who asks me ‘does it hurt?’ when I inject myself, I’m lying when I say ‘you get used to it.’ At the moment it still feels very unnatural to jab myself with a 6mm needle 6 times a day. And yes it hurts, whoever only felt ‘a sharp scratch?’ There are more bruises to prove it…
There’s a lot more to this than eating. And that’s just the practical side.
4. “You’re ill? But you look so well, better even!”
I guess so. Who tries to look actively ill? Some days are better than others, I grant you, but I don’t try and look ill. Truth is, I’ll be ‘ill’ for the rest of my life. I don’t want to be. But I don’t get a choice. So I choose to look well, even when I feel down.
There’s an outside, and there’s inside. There are a few people who see glimpses of the inside. The me when I’m so angry and frenetic that I don’t know where to turn and I sit and cry in the middle of a concert. The me that breaks down on the sofa, surrounded by my revision notes, frustrated that I’ve lost so much time. The me that is struggling to come to terms with the fact that this doesn’t go away after a bit of treatment, that this will affect every ounce of my life henceforward. The me that wakes up at 5:30 am on a Saturday with a hypo when I was angling for a lie in, is forced to down food when feeling incredibly nauseous, and then collapses on the chair in the living room, just staring out the window because she can’t get back to sleep for fear that next time she won’t wake up.
The me that doesn’t always know me anymore. Because the me I saw myself as in my final few weeks of school, enjoying A levels and summer concerts, and ending my school career on a high, is far from me. The me of today has to be in separate invigilation, take enforced rest breaks and spent the last few weeks of lessons desperately getting through as many lessons as possible before going home to sleep all afternoon because I was exhausted. The me who eventually admitted defeat on a 100% attendance record, and only did 3 days a week. The me whose university offer, once more than achievable, is now thrown into question, and for whom deferring by a year is increasingly recommended. I don’t want to, but I’ve lost control. Who sees that me, so frustrated, so angry, so confused, questioning why me, questioning why now, questioning what I did wrong? Nothing, I know, could have stopped this. But that doesn’t stop the confusion.
Maybe only myself knows me. Because I have a strong outer person that knows how to say ‘it’s fine’ or ‘I’m doing OK’ or ‘yes, I’m better now.’ A strong person who doesn’t want to burden other people with all the inside stuff. And I’m only beginning to get there, though I know one day I will. But as far as it goes, I will never be ‘better.’ Or at least, ‘better’ takes on a new definition. I may look well. Most days, now, I even feel vaguely well. But please don’t tell me that “I know you’ve been diagnosed with Diabetes, but you look well, better even!” Because you don’t always know what’s going on inside.
5.”Can’t you just forget about it”
Oh boy do I wish I could. And sometimes, just for an hour, or an afternoon, with particular people, or doing particular things, I do. I feel absolutely myself again. And that’s how I know I will get to a point eventually, where this isn’t such a big deal, and can just be another part of me. But it will take a while to get there.
Right now, it feels like there is a big before/after divide. And I hate describing it like that, because it really doesn’t help. But that’s sort of the only way I can think of to describe it, or via the jigsaw puzzle explanation. Places I go to regularly are now fringed with new dangers, and it’s difficult to go back to somewhere where you’ve always felt comfortable, and now don’t. My independence is challenged. I can’t just do things that, before, would not have been an issue. I have to re-learn how to drive. It stops me from going out to certain places alone, taking up opportunities my way, travelling in certain ways, and staying in certain places.
And, at the moment, the times when I think I can forget are the times when I am most vulnerable. If I don’t check my blood sugar, I don’t know how close I am to being hypo, or hyper. If I don’t give my insulin, I will go hyper and be so fatigued that I will just sleep all afternoon. If I give too much insulin, by even a unit or two, I risk my life. My insulin cannot get to over 25 degrees, or below 0, or else the hormone doesn’t work. So it’s quite important I don’t forget the practical stuff.
And it’s hard to speak about, but what I went through in hospital classifies as both medical and mental trauma. So there’s a lot of mental stuff that I also can’t forget.
It’s hard to forget lying on a bed, in intensive care, being told that you are in a critical condition. It’s hard to forget a Doctor covering your face with a sheet, closing you in and coming at you with savage looking equipment to cut open your neck and insert a line to give you fluid, because ‘if we use the wrist cannula, it will be too late.’ It’s hard to forget being moved from the ‘critical’ bed into the regular intensive care unit, but being told that ‘you’re by no means out of the woods yet.’ It’s hard to forget the first time someone tells you that you’ve got a condition that’s got no cure, and you will have to learn to deal with it because otherwise you will die. It’s hard to forget coping with that, and then someone telling you that there are no real answers. It’s hard to forget seeing your parents cry and that they butter and feed you your toast and send texts on your behalf because you don’t even have the strength to hold a piece of bread. It’s hard to forget lying there, quite conscious, whilst the man in the bed next to you passes away. It’s incredibly hard to forget that it could have been you.
So no, at the moment, I can’t ‘just forget.’ And actually, whilst I’d like to manage how I remember, I don’t think I want to ever forget completely, because knowing how frail life is has made me cherish it all the more these last weeks.
6. “I wish I could lose weight as fast as you have.”
Well I wouldn’t wish it on you for all the world. This is not how you want to lose weight. And I know maybe my weight loss is all you see. But it’s not glamorous. It’s having one pair of jeans that fit, and everything else vigorously pulled in with belts. It’s suddenly having your school suits not fit, and being safety pinned into your skirts and drowned in your jacket. It’s losing muscle strength and it taking a lot more energy to open a door, or lift a heavy book. It’s not being allowed to do strenuous exercise or go on long walks. It’s being advised to use a wheelchair for the week after I came out of hospital – I didn’t, but I should have done. I am building up my strength, but this is never something you want to go through.
And who says I should ever have wanted to lose this much weight? This weight loss is not desired at all. It’s a result of medical trauma. So why are we, as a society, constantly pressuring people to lose weight, and congratulating them when they do, when it’s not always something to be proud of? (More on this here) Just think about it – could that person be struggling, or is there something else going on? Is this their choice? Is what you are about to say going to make them feel self-conscious, or uncomfortable in their body, either how it is now or was before? Just think it through.
7. “At least it’s happened to you. I mean it’s bad timing, but A levels were always going to be a breeze for you, so just chill”
Thanks. I guess that’s another compliment, that you think I’m smart? Once I might have agreed with you, that with all the two years worth of work beforehand, and at least a month of concentrated revision, A levels shouldn’t have presented an insurmountable challenge, though I don’t think you can ever class them as a ‘breeze’ for anyone, no matter how well they perform on a regular basis. But now, well now it’s different.
Now I have missed out on approximately the nine preceding weeks before my A levels. Much of what I am relying on to get me through each paper is the initial work I did in Lower Sixth, and a morning or afternoon of massively crammed revision prior to the exam. And don’t get me wrong, I’m glad I put in the work then, and that I have it to fall back on, but this is not the only thing that I should be relying on. It’s not fun. And this would not be how I would choose to do it. It makes the whole experience so much more stressful. It’s frustrating to look at a question and think, ‘if I’d been in class in those last few weeks, I would have gone over this’ or ‘I’ve actually never done a history source question of this type before, because when they did practices, I was in hospital.’ It’s frustrating. It’s certainly not a ‘breeze.’
And I can no longer just go and sit an exam. I have to eat directly beforehand. I have to be in a separate room, with a separate invigilator who sits and watches me for any sign of descent into hypo. Within 10 minutes of my first exam I had to be stopped because my hand was shaking. Even if I exhibit no worrying signs, I have to stop at least every hour to check my blood sugar, if not every half hour. Stress and mental power uses up a lot of sugar. I have to take with me a whole box of different types of acting glucose, meters, insulin, needles, lancets, lancing devices, ibuprofen and drink lots of water. 3 hour exams tend to take at least 4 hours. My invigilators and I have a red phone which has the nurses and 999 on speed dial. I get home and collapse, without the energy to carry on for the next exam. The process is isolating, and it’s frustrating. But I need it. And I’m halfway there now.
But what’s also stressful is not knowing how it could turn out. We have absolutely no idea what my grades will be. My predicted grades were based on me working as I would have done, flat out, in the last weeks. That didn’t happen. Grades are up in the air. I can apply for special consideration, but it will only up me a maximum of 2%, and I can only apply for it to apply if I have a hypo or exhibit signs of deterioration during a specific paper. As a lifelong illness, Diabetes doesn’t qualify under recent illness or bereavement, since you should have been managing it forever. It doesn’t seem take into account what happens if it’s all new. We have no idea what is going to happen in August. And although I keep telling myself it will all be fine, it’s not exactly breezy.
8. “When does it stop?”
Easy answer: it doesn’t. Charities like JDRF are researching to try cures for Juvenile Diabetes Mellitus. But there is no cure yet. We wait.
We can manage it for the moment, with subcutaneous injections, IV fluids and blood glucose monitoring via finger pricks and monitoring strips. I carry these, and my hypo treatment with me everywhere. I have a medical ID wristband to identify me should I pass out alone, or be treated as drunk when I am having a hypo alone and in public. My insulin has its own passport, which I have with me all the time, and especially when I travel. It doesn’t go away.
My specialist team are hoping that I will qualify for some new whizzy devices that continually monitor glucose by having a sensor permanently on your arm, which you can swipe with a reader and it will not only give you a reading but show you a graph, and see whether you are trending up or down. I may yet transfer onto a pump system which can calculate your dose and administer insulin automatically. But that’s all the future. And it still won’t stop it; it’s only about management and control. I’m Diabetic 24/7. There’s no escaping it.
People usually remember that I’m diabetic only when I’m eating. And then they think that’s all it is – a food thing. But I still have diabetes when I leave the dinner table. I’m diabetic when I wake up and when I’m sleeping. I’m diabetic when I’m stressed and disappointed, excited or in love. Angry and ashamed or lonely and hurt. It doesn’t go away when I put the cap back on the syringe. It does not retreat once I fall to sleep. ~An anonymous T1D
9. “Stop eating that, diabetics can’t have that”
Ah – this is a fun one. I can, technically, eat anything I want. So please don’t try and make decisions for me; I will tell you if I can’t eat anything. Some ‘diabetic’ food can also contain chemicals which act a bit like laxatives…so is best avoided, though Boots’ ‘no added sugar’ chocolate and shortbread have been life savers in the last few weeks, with half the carb value of normal brands. But I just have to be careful.
And sometimes it is harder for me if you try and avoid carbs, because at the moment I do need at least a small amount of carbohydrate with everything I eat to help me calculate a dose, as well as to keep at a stable weight. I have a book with lots of fun pictures of different size portions of food, which is helping me judge quantities without having to weigh all my food and on a day to day basis I work with a specialist dietitian and my school catering team to eat food that is both healthy and enjoyable! The only advice I’ve had and heeded (!), is that I should avoid chocolate, ice cream, and cake. But once in a week, and maybe twice, it’s ok – and whilst I can’t just snack freely or eat with no restrictions, if I want some chocolate, and believe me, there are times when all I want is a square of chocolate or 5 Maltesers, I will factor it in!
It often makes me feel more self-conscious of what I am eating, and makes meal times generally more stressful than they already are, if you stop me from eating what I feel comfortable eating. So trust me, although it is new, I do vaguely know what I’m doing, and fear not – I will speak up if something’s not right, or ask for a bit of bread with my salad 🙂
10. “You’re a bit of a mess, then, huh duck?”
Yep, someone said this to me. It was probably a side comment, and I’m not going to get mad with people because they don’t understand. But telling me I’m a mess goes to my head. It makes feel messed up. Different. Alone. A problem. It brings everything back. It makes me remember the things which are hard to process. It makes feel like I’m going to a mess for the rest of my life. For if I’m a mess now, so shall I be in 5 years. In 10 years. In 20. And who wants a mess in their life?
Maybe I am a bit of mess. I am still trying to learn, trying to process it all mentally, and trying to talk about it in a way that is helpful both to me and those around me. I don’t want to be a mess. I don’t want to cause mess. I don’t choose to create mess. But this me. And maybe it is messy right now. Maybe it still will be in a few weeks, and in a few months. Maybe even in a year. But it won’t always be messy, and I won’t always be coping like I have to now, with everything colliding at once. I’m stronger than mess.
11. “It’s a bit of a pain to be around you at the moment.”
Tell me about it. I feel guilty every day for feeling like a burden to those around me. It’s really hard to feel like you are responsible for someone else’s heightened fear. Or to feel like you are bombarding them with a load of information that they might not understand. It is hard to know that there is the chance that you might not wake up every night you go to bed, and there are people out there who are also trying to cope with knowing that. To feel awkward before going into the canteen every day, because I have to slip out to test and medicate, and count my carbohydrate intake before I eat. Their food gets cold, and so does mine.
Most of those around me day to day tell me that they don’t feel like it is a burden. And as the days go on, we settle into a new routine where there is a trust that I will say when and if things go wrong, but that I have enough independence to deal with day to day management. But it doesn’t stop me from being struck by guilt if I am out alone with my friends. The thoughts run through my mind: would they know what to do if I started acting like I was having a hypo? Would they recognise it? And the worst of all: with all this going on, I hope they can see that I am deep down still myself, even that I am trying to grow to be a better and bigger person because of this, trying to understand and develop the compassion to help and reach out to others in a similar position. I hope they don’t think, with all this going on, it would just be easier to continue gradually walking away. Because that would break my heart.
It’s hard. But it won’t be like this forever, and I would trust you with my life.
13. “But your Mum has Diabetes, so it’s not really an issue for you.”
This is something I get a lot. And it’s actually quite a rational argument. My Mum was diagnosed with Type 1 Diabetes when she was 15. It could be that I have a genetic pre-disposition to the condition. But as I said, there’s hardly any evidence to suggest it is directly hereditary. Anyway, it’s happened, we can’t change it.
In some ways it’s great. She knows what it can feel like to be in hospital and diagnosed. She knows what it can feel like to have hypo, and what the balance is between a hypo treatment that works fast, and a hypo treatment that doesn’t taste absolutely foul. At the moment I’m on a mix of Cadbury ‘fudge’ bars, and full sugar coke. It’s pretty disgusting, but has to be done about once or twice a week. She can also look at a plate if I’m struggling, like when we’ve gone out sometimes, and mouth across the table ‘approximately 50g,’ to help me calculate my dose.
But it can also be really hard. We are completely different people, and we lead different lives. We’ve been diagnosed in completely different ways: hers was what you might call a pretty regular diagnosis. She experienced all the regular symptoms and they caught it earlier on. I went from seemingly healthy and active, to bed-bound in ITU in the space of 24 hours. She can bend the rules, and feel when things go wrong. I still rely fully on my meter to know where I am. She has different insulins to me. She has been dealing with it for 35+ years. I have had it for just over 70 days, and she can’t impose her Diabetes control, both practical and mental, on me. We work in different ways. She is a lot more matter of fact. I get a lot more emotional.
And knowing what is like probably makes it a lot harder on everyone in the house, because there’s now twice the worry, twice the fear. She knows what it’s like, so she can be more anxious about the things I do and can get up to. She has her own experiences which affect how my diagnosis is processed. As one of the first endocrinologists I saw explained, it’s like how often when you learn to drive, you use a driving instructor, and not your parents. The same is true with your DSN and your parents.
So as such, we made the decision early on that my Dad would be my chauffeur and waiting room accompanist at all my Doctor’s appointments. I’m actually old enough to do it all by myself. But I need someone to at least drive with me at the moment, and it’s him. In fact, it’s easier because Mum’s at work during the week anyway. But we tend to keep our Diabetes separate. Because it has the potential to actually be worse, rather than mutually beneficial.
14. *Orders ice cream* “Haha – Diabetes here we come!”
This is quickly becoming one of my pet peeves. So just a quick note. Please don’t joke about getting Diabetes. As I have explained, Type 1 has no known single ‘point-your-finger-at-it’ cause. There are a huge range of causes of Type 2. I don’t take offence too easily, but this is hard to hear on a daily basis. If you don’t know, just don’t even go there.
You won’t get Diabetes from eating ice cream, or chocolate, or sweets. And it’s not funny to joke about, so enjoy everything in moderation. I do too, and I’m diabetic.
15. “Seems like there’s nothing good about it.”
So here’s where I make the counter argument. Maybe a lot of this has been a rant. But I hope it’s also been educational, and made you a bit more aware of how much more to this there is than Maltesers.
I don’t want to end on a negative. So here I share the positive. I am gradually beginning to realise that Diabetes may be a sort of blessing in disguise. Let me explain. I don’t want anyone ever to have to have Diabetes. But if you have it, you can’t escape it, and it really is a life or death thing, so whilst it’s super hard, and there are rough days, and it takes so much time, you do begin to come terms with it, and even begin to find little glimpses of silver lining. I’m just at the beginning of that journey.
Diabetes sucks. But there’s a whole community out there. One of the first things my housemistress did when I was diagnosed was send an email round to all staff on site. Having been a boarder, is was important that everyone knew, so if I was found at any time of night or day, someone could help out. So many members of staff have come up to me and offered their support, understanding and stories about people they know with Diabetes who have gone on to do amazing things. “It might not feel like it now,” they say, “but you will go on to achieve just as much, or more, than you would have.” And week in, week out, I am overwhelmed by so many members of other communities I am part of who come to, or reach out to me, and just say “hello” or “are you ok?” Sometimes I lie and say “I’m fine” when I don’t feel at all. Sometimes I absolutely mean it. But either way, I know they care, and that means so much.
And one of the best things I did for myself, was reach out to the community. There is an absolutely fantastic charity which is America-based, called “Beyond Type 1”. It is a community of people of all ages and genders across the world, who have type 1 diabetes. You send them your name, age, diagnosis date, and address, and preferences, and they match you with a similar Diabuddy, or someone else who has Diabetes, and for free, send you a starter pack of postcards, notelets and stickers to start a pen-friend relationship, called Snail Mail. That’s how I met JM. A training nurse who lives in Maryland, USA. Diagnosed at pretty much exactly my age, 2 years ago. It’s so good to have someone who understands, and whilst our medical systems are completely different, I don’t feel so alone. Thanks JM for everything, and for everything you will continue to be for me; I have a feeling our letter writing will last a long time. You make me feel a bit more normal.
It’s also been the most amazing concentrated time of prayer and support from my closest friends and extended family. I have felt alone, but never alone at the same time. I have received so many messages, so many letters and cards, the most beautiful flowers, pens to write my heart out with, books to write in, books to read whilst I’m stuck waiting for appointments, or hooked up to IVs, pictures of baby elephants from Sri Lanka to make me smile, and countless hugs, chats, phone calls, texts and many instances of “I don’t know what to say, except that I’m here for you, and I’m thinking of you.”Countless “my thoughts and prayers are with you and your family at this time.” Immeasurable love.
And I have also felt like I’ve understood another part of the world. Much of this I can’t understand. I want to know why: why me, why now, why this, why not that. I can’t. But what I can now understand is a bit of everyone’s life who experiences pain. A bit of those lives where you wake up in the morning and think “I can’t do this today.” A bit of those lives where you wake up in the morning and think “Yes! I’m going to smash it today.” A bit of the lives of the chronically ill. A bit of lives of the dying. A bit of the lives of those who love unconditionally and freely. A bit of lives of those who are scared. A bit more of the lives of all of us. And I have felt moments of absolute extraordinariness in the ordinary.
So I guess, this isn’t all bad. And it will get better. Everything, as M would say, is going to be fine.
If you’ve got this far, you 100% deserve at least 5 Maltesers. Thank you for all your continued support. You can watch this slideshow for a more pictorial idea of life!
Reflecting on where God is in Chronic Illness Diagnosis
Where I spend most of my life at the moment!
Sometimes I found it too hard to go to lessons at the end of last term, so I worked from my bed. Grateful for my friends who help me document my journey!
My hair is falling out…
Love from Czech Republic!
Mail went to Maryland for the first time…
Day of doctors’ appointment supplies. And breakfast. Because fasting blood tests are horrid 😦
So much love from my Cathedral family
The infamous 5 Maltesers
I told you my hair is falling out…
Yes, it really is falling out!
Love Love and more Love
My catering team are my ifesavers!
More flowers which lasted my whole first two weeks of exams to cheer me through
So much thoughtfulness
Sometimes I feel like I can take on the world!
I mean when I say I’m losing my hair…. I mean it!!