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.

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.