Monday, 24 June 2019

Support

Support. It's the very foundation that the diabetes online community is built on, we're there for each other because we understand each other, we look out for one another. Or so I thought.

When I was fourteen years old I opened a laptop and wrote my first blog post, and I posted it. I was a teenager trying to navigate the world at the same time as navigating a chronic condition and writing blog posts was my way of venting, of clearing my head, I didn't expect that people would read my thoughts, but they did and that's why I'm where I am today.

That's why the past 10 years of my life with Type 1 Diabetes have been an absolute whirlwind but also full of cool events and speaking opportunties and volunteering, and I hope it continues that way. Being an advocate for this disease has given me a purpose and made me feel like all those nights I've spent in hospital or been up at 3am treating a hypo, or worrying about what my retinal screening results will say, haven't been in vain. I don't feel like there are reasons for everything because some things are just crap, but I feel there was a reason for this, for my Type 1. Maybe.

In life lots of people get lots of different opportunities, some don't, some don't want to put themselves forward and some don't do much to get themselves there. For example in school, in schools there's often a Head Girl or Head Boy, they're chosen because they have something to say, they're good in school and they deserve that recognition and they want to represent their fellow pupils. Now not all the pupils can undertake those roles, but it doesn't mean their voices are any less or that they don't deserve to be heard, but just because they're all pupils at the same school it doesn't mean they're entitled to that title and there are still other ways they can contribute.

I want you to keep that analogy in mind, as a loose explanation of what I'm about to write.

Twitter has been a hub of negativity for the past couple of days in light of recent events, one being the dxLisbon bloggers event with Abbott and the other being the invites to No.10 Downing Street. Two wonderful opportunities full of wonderful people all of whom deserved to be where they were. However as with any high profile diabetes event, they didn't come without their negative perceptions. Many were confused about the bloggers event, questioning motives and whether or not it was ethical, others questioned the Downing Street event wondering why some were invited and others weren't.

I won't get into the details, but what I will say is every single event or conference attended by people with diabetes is always on behalf of the wider community, they're representative, and the bloggers event with Abbott is full of learning and positive experiences and skills they can bring back to Social Media and no one is obliged to speak about their products or services. The Downing Street event was to celebrate those who work tirelessly to improve the lives of everyone with diabetes - so what is with the jealousy and the tearing down of those who were lucky enough to attend?

There is no harm in celebrating other people's successes and being proud of their achievements. And the only reason they are there is because they have dedicated their time to the greater good. Yesterday I was told that by accepting invites to speak at conferences I'm taking away someone else's opportunity and that we need to make way for others. They're right, it is so important for everyone to be heard, but it's not fair to say I'm taking something away from someone else, I have spoken at conferences on something I'm passionate about and have experience in, and I hope other people will take up and/or seek out opportunities to do the same with aspects they're passionate about.

When I was fourteen years old I did not wait for someone else to pave the way for me to get my voice heard, I just did it, and people listened and it's opened up a whole new world which I am grateful for, and I encourage others to do the same. Shout louder if you want to be heard but always remember we are in this together and no one would intentionally drown out someone else's voice.

It's seen as a massive problem that some go to events and conferences and others don't get invited, and this might be an unpopular opinion but I will say it anyway, some people just don't put themselves out there enough and that's fine and that does not mean that you do not have a story to tell, but just because we all have Type 1 Diabetes it doesn't make us all entitled to do the same things as everyone else, and that's where that analogy comes in.

And it is not fair to put others down for accepting opportunities that are presented to them because I'm sure you would do the same if you were invited.

Yes, organisations could work to be more inclusive and online events could be considered an option for certain things but they do not hold the same value as a face to face event. But the truth is sometimes people are asked to do things because they're the right person for the job or they stood out, and we all deserve that platform we really do. Blogging was my escape, then it became my passion and then it became the reason that living with Type 1 is "ok" but going to Twitter and seeing people refer to blogs as "tedious" and "weak" because you're unhappy you didn't get an invite to an event is wrong.

Do not forget that there are so many things you can do to make an impact, if you are truly passionate then look for ways to help. Volunteering my time at Diabetes UK events is so much more rewarding than any high profile event will ever be, and while I love public speaking, things like volunteering are the things that make a huge directly positive impact on lives.

Another thing we are all entitled to is an opinion, and mine might be just as unpopular or popular as the next person's so continue to speak your mind on social media if you want to, but don't pin it all on people who are doing nothing but trying to do good. And if you are someone who is trying to "intimidate" others on social media then do stop, it only creates a bigger rift. I've never had a personal agenda and would never dream of it, I also never imagined I'd get the opportunities I've had.

There shouldn't be a divide like this, we're all in this together even when it doesn't feel like it, just because one PWD with diabetes is at 10 Downing Street and you aren't or another is at a bloggers event or is speaking at a conference, it doesn't mean you aren't worthy of recognition it's just the way things are sometimes, but also remember that no one gets a free ride, and I hope one day that more people will put themselves out there and can get involved and trust me you can be, where there is a will there is a way.

People can choose to be hostile and fight with each other over who should be where, or we can celebrate one another's successes and look for ways that we can get involved ourselves no matter how big or small. I hope I've managed to get my point across with this post, and I hope to continue advocating and taking up opportunties if they arise but this "problem" also isn't that much of a problem if we just put things into perspective, and there is more to us than diabetes always remember that.

Friday, 22 March 2019

Transitioning to adult services | My talk at the Diabetes UK Professional Conference

This month I was fortunate enough to be invited to the Diabetes UK Professional Conference to talk about my experiences of transitioning to adult clinic and share a platform with Reza Zaidi and Fulya Mehta - two incredible diabetes consultants who do so much wonderful work to improve the lives of those living with diabetes. It was a privilege to speak along side them and contribute to their session on Transitioning to adult services.

The conference took place from the 5th - 7th of March in Liverpool. It was a fabulous experience and I'd never been to Liverpool before, so I was very excited to see a little bit of Liverpool and I even got a photo with the infamous Beatles statue! I'd been to the Diabetes UK Professional Conference before, back in 2016, when it was in Glasgow and I got the opportunity to attend as a Blogger; so it was a lovely feeling to be back at the conference but being a speaker this time it was a little bit more nerve-wracking!

I'm so glad I was invited to speak at the conference, I feel like it's helped me get my mojo back a little bit. I took a step back from diabetes advocacy for a little while but it's nice to be back into it a little bit. I have no control over the fact that I got Type 1, but what I do have control over is what I do with it, and advocating for better health care and a better life for those of us with Type 1 is my little way of taking back control I think. I also just love making a difference, and if my experiences can help other people then that's perfect.

If you want to read my speech I've inserted it below...it's a little bit long, but I hope you stick it out!

Good Morning all, I’m Ellie, age 21 and I’ve been living with Type 1 Diabetes since the age of 11. Thank you for giving me the opportunity to come up here and share my experiences with you all of an aspect of diabetes care that I have come to feel strongly about.

Whilst I have experienced much first-rate care from hcps, both as an adult and especially as a child and adolescent, I feel that the transition from paediatric to adult care in diabetes is often treated as if
turning 18 brings a sudden and complete change in physical and psychological needs. This strikes me as a gross over-simplification of the reality of becoming an adult.

I’ve reflected upon my journey through transition to adult services and picked up some key points and a couple of pivotal moments that shaped my journey to adult services, with comparison to my experience in children’s services, and all this kind of set the scene for the months that followed.

We had a good start, I had a transition appointment with my old consultant and my adult
clinic consultant. As I approached 18 my consultant spoke to me about transition, my team were incredible, and I was more than disgruntled to leave them. An appointment was set up with my consultant at the time and the new adult consultant, this was a good move, it was sort of a “handover” so to speak. It was a long appointment, I’m probably not the most straight forward of cases so there was lots to talk about, and plenty of opportunity for me to huff and puff and express my discontent at this change, but I liked the new team and decided to be open minded and embrace becoming an adult.
But then it all went a bit pear shaped. After the transition appointment I didn’t get another one for 10
months, I had one but it was cancelled, I was told I’d get a new appointment through but it took me
calling and asking why I didn’t have an appointment to get one scheduled. I felt like I’d fallen through the cracks and for almost a whole year felt as though I didn’t have a team anymore.

When I finally got that long awaited appointment it was with a DSN, and at that appointment,
my first DSN appointment in adult clinic, she told me - “We don’t have the facilities to get to
know you” I always say that moving from children’s clinic to adult clinic is a lot like moving from secondary school to university; you go from a place where everyone knows you, you grew up there, and then suddenly you’re thrown into a whole new world where no one knows you and you’re among thousands of others. Children’s clinics are generally smaller, whereas with adult clinics like mine they’re huge, and often crushed under the weight of their own success, I know my clinic is good, I just can’t seem to access the good parts, at my very first appointment the DSN said to me “We don’t have the facilities to get to know you”. I was not expecting her to say this, and while I know her intentions weren’t bad, I think she just tried to set my expectations, and that’s sad, she knew how it was going to be and how things would change for me.

I was on an insulin pump when I left children’s clinic, I was on a “break” but a
pumper nonetheless. My consultant and team in Children’s services were very tolerant of my approach to managing my diabetes, I liked to do things my own way with their support and they accepted this, it was a good approach! I loved my pump, but sometimes I needed a break and so just before leaving children’s clinic I was on a “pump holiday”, but a pumper, nonetheless. I was back on injections during the transition process but struggling. Between transitioning to adult services and my first appointment with someone in clinic I lost my insulin pump. I didn’t know this until I went to order supplies and realised I couldn’t, I had to email the only email I had for one of the DSN’s at clinic and she told me via e-mail that they decided it probably wasn’t the best idea to stay on the pump because my Hba1c was too high. This I understood, I know the reasoning, I know the rules, but what I didn’t understand is why someone didn’t at least get in touch, I know they couldn’t offer me an appointment as they were too busy to see me, but I had barely been there 6 months, had minimal contact and no appointments set up and I just felt betrayed. They made this decision with out me, but I also recently found out that you must see a consultant within 3 months of transitioning to ensure the funding gets transferred properly, I didn’t see someone for 10 months, so I suppose I would have lost it inevitably.

The years leading up to turning 18 and transitioning to adult services, were emotional and hard, big
things happened in my life, my mum had jsut been diagnosed with cancer for a second time, I left sixth form with no idea what I wanted to do with my life, my great nan died just before I turned 18, and it’s safe to say that at 18, the transition age, I was a bit of a mess. So, to me diabetes came last, it was not my priority and I struggled immensely with controlling my blood sugar, I just had no interest in it, I know this of course wasn’t the right thing to do but mentally I was in a bad place, I also found it difficult to properly manage my diabetes in general. This meant that when I had my transition appointment, my new consultant asked me if I was depressed. Again, I know his intentions weren’t bad, but I immediately noticed the different approach, they didn’t have a psychologist at the time, and I was advised to contact IAPT. But I was so down because my life wasn’t going the way I wanted it to, my blood sugar was constantly through the roof, I needed help controlling my diabetes through all of this, through the hard stuff and through generally becoming an adult with diabetes – someone from IAPT wouldn’t understand.

It’s no secret that access to psychological services in adult clinic is not common, I had been seeing a
psychologist in children’s clinic and I knew that leaving children’s clinic also meant I’d have to say
goodbye to psychological support for the time being. I’m very fortunate in that I did get the chance to see a psychologist in adult services, she was newly hired and I was told the wait would be 6 months, but she had a huge backlog to work through – so I didn’t see a psychologist for a year but she was worth it. She is proof that my clinic are good, the fact that they even have a psychologist is something I know is not common in adult services, so I made the most of it. But saying that, how sad is it that something that should be a staple part of diabetes care, in both peadiatric and adult services, isn’t a thing in most places, so an adult clinic that actually has a psychologist makes it a really great place to be…this frustrates me a huge amount - diabetes is more of an emotional burden than someone without diabetes will ever know, when I wanted to curl up in a ball and forget about everything I couldn’t, because I have a condition that if I take my eye off the ball for even a few hours things can go seriously wrong – and the issues that I was experiencing at 17 years old in
children’s services did not disappear when I stepped foot in adult clinic at 18 years old.

I saw the same consultant and DSN’s for six and a half years, in adult clinic I’ve seen a different
person almost every single time I’ve been to an appointment I have a lot of “history” so to speak. So when I had my very first consultant appointment in adult clinic and it was with a consultant I’d never met, a registrar, who I wasn’t going to see again, I was more than irritated. Seeing the same consultant and DSN’s in children’s services for six and a half years was something I valued so much, they knew me, they knew my way of dealing with things and why things were the way they were and I had a really good relationship with them. I’ve seen a different person almost every single time I’ve been to an appointment in adult clinic, and while each of these individuals have been lovely, my appointments turn into me sitting there having to explain myself all over again, to a stranger. I just wondered how I'm ever going to build a relationship with this new team if I barely see them.

At one point my DSN appointments turned into seeing a dietician all the time, I’d seen a DSN once before this, and while I do not doubt the dietician’s knowledge or deny her integral role as part of a diabetes team, she couldn’t help me – she couldn’t help me, there was only so much she could do.

I’ve seen my adult clinic consultant twice and I’ve been in adult clinic for three years, I think I’ve seen a DSN the same amount of times. While this length of time between appointments is ok for some it’s not ok for me. One size doesn’t fit all. And while I don’t feel the need for 3 monthly appointments anymore, I feel like at least every 6 – 8 months would be better. When I do see my consultant I think he’s great, very intelligent and very helpful and really understands the psychological impact diabetes has, but the lack of resources means I never get to see him, at my last appointment he wanted to see me again in six months, I didn’t manage to get another appointment booked in for a year and a half.

I saw my consultant every three months in children’s services, sometimes less when I was 15/16 and a moody teenager who stopped taking her insulin properly and had a HbA1c of 15%. But when I
was 18 and starting adult clinic I still had a HbA1c of 12.4%, in a worse place in the grand scheme of my life than I ever was in children’s clinic, struggling on injections, wanting to go back on my pump, losing my pump, getting my appointments cancelled time and time again, eventually seeing someone 10 months later, completely disengaged with this new “team” and feeling like a lost cause, I fell through the cracks at such an important time, transition, it’s meant to be smooth!

It was anything but.

Transition: the process or a period of changing from one state or condition to another.
I dreaded transitioning to adult clinic before it even began, before the moment I stepped foot into a
whole new clinic for the first time – I was acutely aware that it would be different, and I knew the
change would be something I’d have to adjust to, and I’d have to get to know new people. But you
expect the transition to be smooth, to go without a hitch, but several bumps in the road meant I was
ready to disengage completely by the time I got to my first appointment and the months after, and not
even bother trying. However, the moments I got to see the good in my team, the intelligent, caring
people limited by a faulty system, kept me involved.

In the bigger picture we are all just a number, we’re a patient who has outstayed their welcome in a
paediatric setting; but before I’m a patient I’m a person and I’m complex and real life isn’t as straight
forward as a referral to adult clinic. It’s not a secret that children’s clinics get more funding than adult
clinic, the idea being that they’re supposed to prep you well for adult life with diabetes, but what they
can’t prep you for is the fact that the needs you have don’t disappear when you turn eighteen, and
transition is a gradual process that needs to be nurtured the right way to ensure you get that young
person engaged. Even through my involvement in the online community, I have heard of similar experiences from many young adults, and I also hear from older friends with diabetes that adult care can be very minimal.

There’s lots of good work happening around improving transition with sessions like these. Let’s try and make experiences like mine uncommon; make it the norm to have a smooth transition and an easy process, we shouldn’t always have to lower our expectations because of the fact that like my DSN told me, they don’t have the facilities to get to know you.

I want to feel as supported as an adult with diabetes as I did a child with diabetes and that starts at
transition.

Thanks for reading!

Friday, 14 December 2018

Ramblings

It's that time again - it's 9:45 on a Friday night! Coincidentally the exact same time and day that it was that I posted my most recent blog post, which actually isn't so recent since I posted it in June, and it's now December. I've started calling myself a sporadic blogger these days, I neglect this blog not because I want to but because I struggle to find time and motivation. I need to get better at it! It feels right, and good, sitting here word-vomiting all over the internet.

I suppose I should talk about diabetes, right? It's funny, I spend my days thinking about diabetes, about what my blood sugar is, how much insulin I should take, but I often run out of things to say about it. It's a small part of my life, and as much as it has taken up residency here, I still manage to keep it small, I keep it in a corner, sometimes that's good and sometimes not so good and sometimes I can't really control what it does and it runs up the stairs even though I've told it it's not allowed up there - and to stay off of the bed!

I took my words and my ramblings and my diabetes onto a stage again this year - at the Diabetes Professional Care Conference, to talk about how important the 'Transition' stage is in young people with Type 1 Diabetes. Thankfully it was received very well, it was my first public speaking jaunt for a long time - still got it! I was humbled by the amount of Healthcare professionals who approached me and the other speakers afterwards to ask about how they can make transition smoother for their patients and how they can get them to engage after they've moved to adult clinic. I don't get much time to do loads of advocacy stuff anymore now that I have a full time job, but when I get the chance to do it it feels really good.

I'm still on injections, still trying to get my pump back. I get it out of the draw every once in a while and just stare at it - something so expensive, and so valuable, collecting dust. I understand that I'm not quite "there" in terms of getting it back but I wish someone would just let me try, let me prove it's worth. I feel like it's the motivation I need and it's so close (literally, in my drawer) but so far away, in the hands of my diabetes team - it's a shame we don't get trial runs. I feel like 12 year old me again, fed up of injecting 5+ times a day, the difference being it was much easier to get a pump back then.

I'm hoping for a Libre, the consultant I saw in clinic a few weeks ago told me she was going to ask the wider team about Libre funding for me - she still told me it's "unlikely" - at least she's not giving me false expectations...however, I can't have my pump back so let me try this properly, I've already proved the Libres worth with days and days of data showing how much better I am at controlling my blood sugar with it. It's so frustrating having to prove everything to someone who is so far removed from your life. Don't get me wrong, I believe in my team and I do think they're good people, it's just frustrating. Note to self: Use words other than 'Frustrating'.

I am thankful for the psychologist at clinic though, psychologists are a luxury in the world of diabetes it seems, especially in adult clinic. It's so helpful to go through my thoughts and feelings and understand why sometimes I feel the way I do. One huge thing I found is that I tend to invalidate my own emotions, especially when it comes to diabetes. I don't do it with everything, but I do it with things that are ever so slightly negotiable, like getting upset over a boy or something.

I've been learning that to be emotional doesn't make me weak. I never thought that, nor do I think that about anyone else either, but it was something I always held against myself. Everything is relative.

Speaking of teams, I saw my old team a couple of times this year, they asked me to help them out with their 'transition days'. They hosted sessions for the young people under their care who are about to transition to adult clinic and I was there as a kind of, "Hey, I've been through this so I can answer your questions!" It was a lovely experience and so nice to see my old diabetes team, especially my old consultant, who did so much for me.

Twitter-land is still a significant part of life with diabetes, I have taken a step back though, I don't tweet much at the moment. It's a very divided world at times and I just can't be bothered to get involved. One thing I did get involved with though was the whole Diabetic/Patients with Diabetes debate - I feel like my opinion is so controversial on this but I'll say it anyway, and I'll say it even louder for the people in the back - I do not care what I am called. If someone says "Are you diabetic?" I say yes. I am diabetic. You are correct. Because I know that it isn't all that I am and I don't for one second think that other people think that either. But then again, each to their own, if it upsets you then sorry, it's just my opinion and I respect other people's opinions too but these days, if I can, I choose my battles, and this is not a battle I care to fight.

I think I'm going to wrap this ramble up now. Well done if you read all the way to the end. I don't imagine many people will read this but if you did read it - thanks! Hopefully I can write something a little more interesting to post other than all the thoughts that are swirling around in my head, but at the same time, it feels nice to write them down.

Friday, 1 June 2018

It's been a while...

It's been a while...I haven't written a blog post since October last year - my blog posts have been few and far between for a long time now, so much so that I don't even call myself a blogger anymore, not even sporadic.

I can't pin point one specific reason for my stopping, my passion for blogging just gradually faded and along with my fading passion I found myself fading. I found myself not enjoying the things I used to enjoy, I lost my mojo, I lost my spark, I lost myself. I didn't know who I was anymore, I wasn't a blogger anymore, or a diabetes advocate, or bubbly (albeit irritable ha!) anymore, I didn't realise who or what I was until I finally came out of the cloud I was in and looked back and realised I spent most of the end of last year sitting in my room, in the dark.

I used to have a very thick skin, I liked to see myself as "strong" and prided myself in my ability to control my emotion and not be overcome by it. However as the years have gone on I have found myself more and more consumed by emotion and my terrible lack of ability to accept things that I can't change. People have a larger influence on me now than I ever thought possible, and for the most part that's not a good thing because I opened myself up way too much, it's one of those things that you look back on in retrospect and wonder why you didn't see it coming. However those who have a positive influence on me I'm incredibly grateful for.

I find my intense awareness of myself and my emotions and life in general both a blessing and a curse. I can hold the deepest of conversations with you about the world and life until my brain hurts, and enjoy thinking about it all or I can be completely overwhelmed by everything. There's no in between. I think I'll always question the meaning of life and why certain things happen and why grass is green or why cats meow and dogs bark and why animals don't talk and why some people fall in love and others don't and what DID come first the chicken or the egg?! I'm inquisitive and always have been and my mind is a constant stream of thoughts.

Sometimes the thoughts aren't helpful to me, I have OCD and it makes your anxieties and your fears and your worries 10x worse because a worry will pop into your head and it won't leave. It's almost torturous, it just spins round and round in your head and you're forced to think about it and worry about it until something else takes it's place. My old psychologist said to me - "the more you try not to think about something the more you think about it!" and it's so true. I see a new psychologist now because my move to adult clinic back in 2016 spelled the end of my appointments with her. The new psychologist is lovely too, I wasn't sure about her at first but she really wants to help me and I just have to trust that opening up to her is fine.

I have a job now. I really enjoy it, it also really helps with my diabetes. I have a routine now and it feels good. Not to mention my manager has Type 1 and so does someone else in the office. I love hearing pumps beeping and test strip pots popping open and insulin pens being wound up while I'm typing up the minutes from a meeting or sending out e-mails. I also work with a bunch of wonderful people who create a wonderful working environment.

I also have a car now. I passed my driving test on my fourth go earlier this year. What an adrenaline rush that was!

When I stopped blogging and I took a step back from all the diabetes advocacy I found myself in other ways, I started practicing hand lettering more and I focused more on getting a job and I found a different identity to the one I'd been identifying with for so long: a diabetes blogger and advocate. While I love being an advocate for Type 1 and helping others and I am so proud of this blog, I never had a personal agenda when I started this - and I was determined not to let blogging become a chore or something I felt I needed to do to stay relevant or get invited to diabetes events - when I feel the want to blog, I blog, if I don't, I don't blog, and when I do blog I want it to offer some sort of insight or advice or comfort to someone else, and if none of that, to myself.

I assume no one is reading this, because, well, why would you read my ramblings at 9.45pm on a Friday night? I suppose I just needed to vent and to get my feelings out. As always with life I've had good and bad moments and I suppose I need to learn to go with the flow as hard as that may be for certain things. I used to be so good at being present, and being in the moment and enjoying good things for what they are and not worrying about what will come next but now I struggle to be in the moment and I think I need to learn to find that again. And I need to learn to let certain things go, no matter how much it might hurt or how much I care.There's lots of things that my mental health taking a dip in the deep end took away from me but also I see it as a chance to come out stronger.

My HbA1c is 10.2% now. Sometimes I think that my struggle with staying on top of my diabetes will be a perpetual struggle but I often remind myself that I can do this, I absolutely know I can. I'm realising my new team actually aren't all bad, it's just a shame they fall victim to the time constraints and everything else that's wrong with the NHS, as wonderful as it is it doesn't make the discrepancies that we come across any better. As I'm typing this I just hit the giant bruise that my most recent Tresiba injection left on my stomach, a reminder that I'm working on getting my pump back so that my skin won't look so much like a pin cushion.

On the bright side, I'm ok! And I feel a bit more like me again these days. I smiled to myself when I typed that first sentence into this text box, because while it has been a while since I wrote a blog post I'm back to write this one. I hope I can get back into the swing of things with my blog and I hope for good things and good thoughts and sunny days.

Friday, 20 October 2017

Living Beyond

This week's tweet chat was all about living beyond Diabetes and how we live beyond. The first question was all about if we see diabetes as a barrier, if we see it as something that stops us from achieving our dreams and it's safe to say that was a unanimous no. Most of us do not see it as a barrier and in fact a lot of us see it as something that spurs us on to do better, to prove people wrong, to prove that actually we can do anything we set our minds to despite having diabetes.

The thing about living with Type 1 Diabetes is that it's 24/7, it doesn't stop and we can't take a break from it, so Type 1 can have an affect on your general life let alone trying to live beyond and do amazing things. However, for the people who achieve incredible things like running marathons with Type 1 or scaling mountains, Type 1 diabetes is irrelevant. It's a challenge, it's an extra precaution but in the grand scheme of things, in the bigger picture, Type 1 diabetes is not a barrier. In fact, it makes the achievement even sweeter, because you did it all while proving Type 1 Diabetes cannot stop you. You will however, not find me up a mountain, not because I have Type 1 Diabetes but because I'm lazy and I hate heights, and that was the general consensus with a lot of us who don't harbour the desire to be adrenaline junkies or do extraordinary things, it's not Type 1 that stops us...it's our character as people, ha ha.

We also got into a discussion about personal achievements. I think it's really easy to forget that everything is relative, and people's circumstances are different and living beyond your circumstances alone can be an achievement. What may be something really insignificant to one person, might be really significant to another and to the person achieving it. You don't have to do something extraordinary to live beyond, everything is relative. For example, Jules (hope you don't mind me mentioning you Jules!) wants to walk down Clacton Pier again and for her, that will be a hugely significant personal achievement.

I'm rambling a little bit but I hope I'm still making sense...

Life with Type 1 Diabetes is a challenge and it's not easy and it's not a barrier, unless you want to fly a commercial aircraft or join the army! Plus we make small achievements in living with Type 1 every day that all add up, like having good blood sugars all day or trying a new cannula site you were nervous about using or getting your repeat prescription in on time! Life in general is full of little achievements and extraordinary achievements and they all matter.

Type 1 Diabetes seems to have the ability to either make or break you, and I think it's better to let it make you. Let it spur you on, let it make you live your life to the full because it may be a challenge but as I said, it's certainly not impossible to live with Type 1 and it's certainly not impossible to live beyond Type 1.

Saturday, 14 October 2017

Volunteering for Diabetes UK

This year I made the decision to start volunteering for Diabetes UK on their Family and Children's Holidays. These events take place every year and they're run predominantly by volunteers, most of whom have Type One Diabetes or are affected by Type One Diabetes. I was diagnosed with Type One at 11 years old, I was always a home bird so didn't ever have the desire to be away from home let alone go away for a week. By the time I was around 18 and too old to go on a Diabetes UK Holiday I realised that I really regretted not going on one of the holidays as a child and decided that volunteering would be the next best thing and I knew it would be super rewarding. I've always done the "high-profile" things to raise awareness of Type One Diabetes like going to Parliament and attending cool events and writing this blog and although I have loved and love doing it all, I wanted to do something on a personal, smaller scale, something that will have a more direct and positive impact on the lives of those with Type One Diabetes and even their parents.

May 2017 saw me take part in my first event as a volunteer when I went to volunteer on a Family Weekend. On the Family Weekends the children go back to their parents in the evening and our jobs as volunteers are mainly during the day. The Family Weekends are a wonderful and thoroughly enjoyed by both children and their parents. It's a chance for the children to meet other children with Type One Diabetes but it's also a chance for their siblings to meet other siblings of a child with Type 1. Furthermore, it's a chance for the parents to meet other parents and essentially get a little "break" from dealing with Type 1 for a few hours each day over the weekend. This was my first experience of volunteering on an event so of course I was a little bit apprehensive and not sure exactly what to expect, but the other volunteers made me feel so welcome and I couldn't fault them in any way. it was a wonderful first experience and spurred me on to want to do a week-long event.

That brings us to August this year, I volunteered on a week-long Holiday for 8-10 year olds. On the week-long events the children get dropped off by their parents and all spend a week playing games and doing fun activities and getting to know other children with Type One Diabetes, it's also a chance for them to try to be a little bit more independent. The week-long events are definitely more full on than the weekend because our responsibility not only lies during the day but during the night too, it's pretty much guaranteed that you won't be in bed before at least midnight, unless you're on night-check duty then you won't get to sleep until the early hours! It all sounds intense, but when you have an amazing group of volunteers around you it's actually really good fun.

The activities on the week-long event included High Ropes, Canoeing, Abseiling, Campfire, King Swing, and loads more. I only had one reservation before Volunteering on this event, I'm terrified of heights! However, I think this made me want to volunteer on the event more, because I wanted to set myself a personal challenge. Haha! Every single day is filled with fun and adventure, and watching the children take part in the activities was so lovely, to see them forget about having diabetes and just have fun. As volunteers we took part in the activities too (it's definitely not compulsory but it's nice to take part, and you'll find the children really want you to take part too!) and the activities that required me to be any more than a foot off the ground made me quite nervous to say the least, however looking back I am proud of myself because I managed to abseil. I had every expectation of getting to the top of that tower and wanting to go back down...however there were a few things that stopped me coming to this decision:

1. You had to climb ladders to get to the top, and climbing back down all those ladders did not appeal to me.
2. I would have really regretted it if I didn't at least try.
3. One of the little girls in my group exclaimed: "I'll do it after Ellie does it!!"

...Damn. However, I knew as soon as she said it that I had to do it, for her, for me, to get to the bottom! I had a little girl who was just as, if not more scared than I was relying on me, so I sucked it up, felt the fear and did it anyway. I'm so glad I did and straight after me she did it too and I was so proud of her, and me! Another activity I was apprehensive about was Canoeing, but again I put on that life jacket, picked up that ore and got into the canoe. I have never stepped foot in a canoe in my life, let alone be in a canoe with three 8 year old girls and having to teach them how to use their ores! It was an experience to say the least, one of the girls is terrified of spiders so she spent a lot of time trying to move from the spiders that were on the bottom of the canoe and almost capsizing the boat when she slid from side to side! I stepped on a few so she could have a good time and not worry about the spiders and all was calm until "There's a mouse in the boat!!" Oh hell no. I was determined not to get wet so all I was saying was "Please stay sitting!" Anyway turns out it was a Shrew and the girls did amazingly well in ignoring it and it enjoyed it's journey with us around the lake. We also had a competition to see who could turn their canoe 360 degrees the quickest and we beat the boys! It was little moments like during abseiling and canoeing that I sit back and dwell on now and think, I totally made the right decision volunteering.

Seeing the children get the most out of it and learn how to be a bit more independent with their diabetes and being the ones to help them do that is so rewarding and both the weekends and the week-long events are a truly amazing experience. You do have a lot of responsibility on your shoulders though, because despite it being truly fun, they are children & the children do have Type One Diabetes and as we all know, that requires a lot of attention! Blood sugar checking is in abundance as well as cannula changes and injections and boluses...all of which volunteers help out with and oversee. At meal times everyone carb counts and this is a good chance for the children to learn more about it. There are Health Care Professionals such as nurses and doctors and dietitians who volunteer on the camps too.

Every second volunteering on these Holidays is enjoyable and post-camp blues are truly a real thing. You spend a weekend or a week with all of these wonderful people and children with Type One Diabetes or who have been affected by Type One. Your fellow volunteers are a support network, all looking out for each other and helping one another and you all get to know each other fast. You also realise the resilience of children and although I have Type One myself and was diagnosed as a child too I'm always in awe of children with Type One because they deal with it with such grace and they're there to have fun, and let me tell you, they bounce right back even after a low or a high blood sugar or a stressful cannula change.

It's rewarding and it's character building and I wouldn't change the experiences I've had volunteering for the world. I hope I get accepted on the Holiday's that I apply for next year. If you're thinking about volunteering I really, really recommend it, you won't regret it.

Tuesday, 10 October 2017

Mental Health Awareness Day

Today was Mental Health Awareness Day. I feel like mental illness is an incredibly taboo subject, people don't like to talk about it, they don't like to acknowledge it, perhaps because some people don't believe that it's a problem, or they don't understand it, or they're scared to explore it and accept it for what it is, an illness. Our minds can be broken just as an arm can be, only I think the healing process is a lot tougher. I've never had perfect mental health, I get anxious, I've struggled with OCD...and in some of my darkest days I've disliked having OCD more than my Type One Diabetes, more than my physical, potentially life-threatening illness, disease, condition, whatever you want to call it. I won't go into too much detail about it, but I'm of course not ashamed to admit my mental health struggles and admit that they have caused me hardship on a par with my diabetes.

You can't escape your mind, that's the bottom line and I think what makes it so difficult, thoughts and feelings are what determine our day, they're what determine our reaction to things and what make up who we are. Think about it, you have your own voice swimming around your head 24/7 and when that voice is negative, or scary or not what you want to think about, it's distressing and it's unpleasant. My psychologist always said to me that the more you try not to think about something, the more you think about it, and I've never heard anything more true. None of us are perfect and I'm yet to meet someone who hasn't struggled mentally, we of course to an extent are in control of our minds, but when that mind gets sick and doesn't work like you want it to, you in a sense are at a loss.

The mind is so powerful and despite it being mental, it invokes very real, very physical symptoms in people. Being anxious is me having a panic attack on top of the Empire State Building on a visit to New York last year because I'm so afraid of heights and the hustle and bustle of so many people 80 floors up is so overwhelming that my physical state went to pot. It's scary and it's the lack of control over what you're thinking and how you react to that situation, to this day I'll always be annoyed that I couldn't enjoy my time up that building because I was so anxious.

I've spent nights crying because dealing with OCD to me is not just wanting everything to be tidy and colour co-ordinated as people jokingly portray it: it's trying to push out negative thoughts and stop the "routines" that I carry out every day because my mind convinces me that if I don't do it, something terrible will happen. Mental illness is so real and so common and the stigma that people with mental health issues are crazy or that they're doing it for attention or it's "not real" needs to stop. I am incredibly normal! I'm one of many.

Thankfully, I get on ok with it all now, and I'm thankful that it's not worse and that I can function, lots of people with mental health issues aren't that lucky.

Your mind is so complex. Every day, every second your thoughts and your emotions are changing and your mind is trying to make sense of things and it's a busy environment. Honestly, who is normal, who can honestly say they've never felt anxious or affected by their mind and it's state?

It's like with Type One Diabetes, I'm sure none of us can say that we haven't been affected by it mentally. The fear of hypos, the fear of going high, the anxiety surrounding needles, the mental effect that physical exhaustion from dealing with a condition that requires your attention 24/7 has on you can be significant. Diabetes burnout...we all make the decision every single day to check our blood sugar and to take our insulin because we know we have to and if we don't it can have detrimental effects, but when you're going through diabetes burnout that mindset goes out of the window, your mind is tired, you get tired of the tedious everyday grind of living with Type One Diabetes. Thankfully for some these periods come and go, and for others they can get stuck in a rut. One of the many reasons I think psychological support for people with diabetes is so important, it's so psychologically complex, we have a lot on our shoulders, we make important decisions every single day and the toll it can have on your mental health is real.

I suppose what I'm getting at here, is that your mind and it's function and purpose in our lives is significant and when it doesn't work properly, life can't really work properly can it...we make decisions, react to situations, feel emotion...all with our minds...and if that busy environment that is swimming around your head is negative or impacted in some way by mental illness or the mental effects of something like living with Type One, things can get a little bit messy. It's hard to heal a broken mind, it takes a lot of strength and determination, to battle your own thoughts and be mindful and not let whatever you're going through take over. It can be done though, and of course, there is always hope and you're never alone.

Anyway, there are my rambles for today, my thoughts...