Exquisite Humans – Part 1

Inspired by a pancreatically challenged nerd (Diabetes Geek); and having spent some time reflecting on the humans who have an impact on my life in some way; I’m going to write a series of blogs about these people; who can either be described as Saints (for putting up with me) or somewhat loopy (for putting up with me).

The first, EXQUISITE human is the very reason I finally started the Discombobulated Diabetic, and she probably doesn’t even realise it. (I do also have to credit a couple of others, I haven’t forgotten, and I never will). Many conversations about writing and what to write about were had, but I can say with absolute certainty, that without reading the 30 odd posts written by mon ami; I would not have had the courage to allow my fingers to dance across my keyboard.

Who is this person you ask? Well grab a brew and let me enlighten you.

Introducing, Anna Louise Swabey.

Anna & Ruby

Pictured with Ruby in 2012

Anna stumbled into our family somewhere in the early millennium. We’re a mostly inclusive family and we do love “new blood”, well I just adored Anna immediately, deciding that I would simply have to adopt her so that this bright, funny, kind, considerate young lady could be in my world forever. She fit in with our madness pretty quickly and added to it where others would shy away. There is not a single member of our family that would say they don’t adore Anna, and I would lay down my life on the fact that this is a true statement for anyone that’s had the opportunity to meet her. Anna, always able to hold her own against my cheeky uncles and join in with the various antics of hilarity that would ensue when the clan gathered, endeared herself to us more and more over time. I talk about us being an inclusive family, but Anna always helped me feel more included. With my depression and GAD, I sometimes find it really difficult to even go to family events – as with any family, not everyone gets along or understands each other all the time – knowing I’d have my buddy there almost always ensured my attendance.

The day my little sister got married wasn’t the easiest day for me. It was bound to be emotional anyway, but having recently come out of a relationship with the man I thought I was going to have babies and forever with, on top of everyone asking me if I was bothered about not being a bridesmaid (for 3 years!!!), feeling a little bit on the outside looking in and not forgetting the fear of the inevitable “when are you going to get married then?” questions; it was always going to be a day where my anxiety and depression would be at battle with me. It was clear there was a group of lovelies in my family determined that I was going to have a good time; Anna played a massive part in that. She would tell me off when I changed out of my ridiculously high heels into ballet pumps; there’s an irony that as a Type 1 diabetic, I was literally up and down all night! She would physically drag me up on the dance floor and keep me up there when it looked like I was heading for a darkened corner, she kept me hydrated and assisted me in maintaining my blood glucose levels (Vodka AND juice), for the duration. Given the amount of Vodka and juice and Kir Royale’s consumed, plus the amount of time I spent outside getting “air” (read: avoiding), it can’t be a surprise that my memory of the wedding reception at least is somewhat hazy; but I haven’t forgotten the effort Anna (and some other quality humans) went to, to ensure I not only had a good time, but felt less alone than I would have done without them on that day. It was the most fantastic wedding, and a blessing to have people look out for me too. As a result, my memories of that day will always be intrinsically linked to my friendship with Anna.

 

This is where a lot of people would begin the next paragraph with, “unfortunately…”;  not me, instead I choose: Such is life, that we lost touch. Anna had finished university and was forging her career and settling herself on a new path. I missed her, I thought of her often and hoped that once she was where she needed to be, our paths would once again cross, but that until then she would know I was always there for her, regardless of the time that passed.

Our paths did cross again, on 16th March 2015. I’d been thinking about Anna and wondering what she was up to in the days leading up to this date, I couldn’t work out why and I equally couldn’t stop the feeling I was meant to be in touch with her, it felt like I was physically being drawn in her direction. I periodically have that happen, quite often I’ll wonder about The Corrs for example, and whether they’re still making music (the combination of loving to sing and Irish heritage mean I love The Corrs, like the swedes apparently love a snowy sauna), within weeks they’ll be promoting a new album…it’s a little bit peculiar. Anyway, back to Anna, I’d seen my parents that day and they had shared some news about her. In that moment, everything fell into place, I understood the pull and the thoughts. The moment I got home I looked Anna up. I found her blog. What I’d been told was true. My heart broke and simultaneously filled with pride.

You see, Anna is dying.

 

The pride came because, despite being told she has a Grade 3 Glioma, Anaplastic Astrocytoma Brain Tumour, and then being told that she had anything from a month to 3 years to live, Anna has made the courageous decision to share each step of her journey, Anna has made the decision to defy her prognosis, she is not taking this lying down and has thrown herself into raising awareness and funds for Brain Tumour Research Campaign. This vibrant young woman, in the face of death is flipping it the bird and saying “Nope, not yet, I have life to do!” I spent a year reading Anna’s blog, devouring each post and using lots of these wonderful words strung together to share her news and encourage (beg) people to read and share her story and donate money to her justgiving page.

Then, earlier this year Anna did something that made me certain that I want to be like her when I grow up (it’s good to have something to aspire to, even as the older person). Anna went to Parliament to speak to MPs as part of a group of 20, following the successful petition started by Maria Lester to get an increase in funding for Brain Tumour Research. To me, almost the pinnacle of her achievements so far in this journey, is that she has actively contributed to affecting change. One day, someone will have the chance to survive a brain tumour like Anna’s, all thanks in part, to this inspirational group of people getting funding increased, more research done, more awareness raised and therefor, symptoms caught early enough to do something about it. Those future people may never know that the names of the people who made that possible include Anna, until they do some research. They will then undoubtedly feel the way us Type 1’s do about Frederick Banting – genuinely grateful that someone cared enough to give time, thought and resources to change something because it wasn’t working.

you-must-be-the-change-you-wish-to-see-in-the-world-68

Anna visiting Parliament made me realise that each one of us is capable of using our voices, individually and collectively, to affect change and make a positive impact and contribution to the world in which we live. It doesn’t have to be particularly big, you just have to do it and be proud that you did it. I coined a phrase, “When life gives you lemons, do an Anna”. In May 2001, Life gave me a mammoth lemon – Diabetes. 2016 marked 15 years since that bittersweet gift. So using my new found understanding of what “leaving a mark” meant and a determination that if nothing else, Anna would know she affected a change in my life at least, I decided that I was going to begin blogging, no more excuses; the time was now! Since then I’ve found a home in a community of fellow PWD’s, I’ve learnt more about my Diabetes than I realised was possible to learn, found out that I’m not too terrible at engaging with people, I’m an OK writer; but above all, I am proud. I’ve made some amazing new friends, friends I know will read Anna’s story and support me in spreading the word, but I am proud that within those new friends, using the PMA that Anna Louise Swabey inspires; I have affected change, and left a mark.

Anna, I can never thank you enough for being so simply fabulous. I am truly honoured to count you amongst my Exquisite Humans, you’re in excellent company; as you will find out. But for now, know that your influence has left an indelible footprint across the path of my life.

Keep celebrating your Exquisite Humans!

For more information about Anna’s story
Visit her blog: www.annaswabey.wordpress.com
On twitter: @braintumourblog
On Facebook: Inside My Head
Or her justgiving page https://www.justgiving.com/fundraising/InsideMyHead

More information about the work of Brain Tumour Research Campaign can be found at http://www.wayahead-btrc.org

 

If you have been affected by reading this story, please share it to help spread awareness.

You can also see the Trailer for this post here: https://youtu.be/SBahRcTvRks

 

Images copyright Discombobulated Diabetic & courtesy of Google Images

7. Once Upon a Dream……

To the greatest Love I will ever know,

I turned 35 last week. I thought I would’ve met you long before now and I’m so very sorry that our first hug is still a little way off, there is much to achieve before we can begin creating memories together. But, my Little Love Monkey, I promise you it will be worth the wait, just as I try to promise myself on a daily basis that you, will be worth the wait, despite how impatient I feel.

For me, becoming your Mumma was never going to be the easiest journey. There have been various, shall we call them; “Life” obstacles that needed to be overcome and then there are the medical ones to consider. I have always sworn that the day your travels to me begin, I will be the healthiest and happiest version of myself – so that I can give you the very best of me, to enable you to be everything and anything you dream of being. There is also another reason; I have something called Type 1 Diabetes. What this means for me each day is a lot of work, it means I have to take medicine every time I eat or drink if it has carbohydrates in it. There are even occasions where I need to take some insulin without anything passing my lips, I’m told it’s a little bit like having a child at times, except Diabetes doesn’t make you watch In the Night Garden on repeat…..what exactly is a Ninky Nonk? Perhaps you can hold my hand as we find out together, I’m a little scared…

From the moment you’re conceived, my T1D will be a part of your life and each day I will teach you something about it. I will also do my utmost to protect you from it. By that I don’t just mean from getting it too – the chances of me passing on my beta cell hating genes are slim, in fact less than 5% I believe, but I will always try to shield you from having to deal with the daily maintenance, the darker side of Type 1 and mostly from being afraid of it. I will do as I have with your cousin Little P, and embrace teaching you about my kit and my medicine; in fact I hope Little P will play a big role in your Diabetes Education – I must think of a more fun name for it before you’re here though, for my sake as much as yours.

One of the biggest ways I hope to make sure I’m able to do all of this, is by having the best blood glucose numbers I possibly can when, by whatever means, I buy your ticket for your travels home. The advice is always to plan, and sometimes life doesn’t happen that way, so instead my goal is to try to have those numbers everyday and to learn to appreciate that perfection – perhaps with very few exceptions – isn’t always achievable. One of the many lessons my life with T1D has given me, is that your best is ALWAYS good enough, regardless of whether that matches up to what others expect that to mean, because your best means that you’re engaged with the goals, and therefore you’re making an effort. This is something I will share and instil in you everyday. So at the moment, my best isn’t perfect, but it’s good enough for now; because I’m trying to better it.

When I think of you, there’s a song that comes into my head………..Dream BannerLyrics Once Upon..

The lyrics resonate with how I feel about you, of course I don’t know you yet, what I do know is how loved you are and that the growth potential for that love, is infinite and certain. I know that when we do meet, I won’t feel like I am meeting you for the first time, instead it will feel like a reunion. I will undoubtedly sing this song to you at many points throughout our life together, please focus on the intention rather than the delivery.

I’m sure I’ll write again Baba, until then I must go find your Daddy……
(Sound of canned laughter à la late 80’s TV sitcoms).

With every beat of my heart,
Love always,

Mumma xXx
(To Be…)

 

 

 

Images Courtesy of both Google Images & Copyright Discombobulated Diabetic.

6. #Diabuddies

Within the Diabetes Online Community, I’ve recently discovered a sense of empathy, belonging and support; the like of which my 15 years with Diabetes has not experienced. It’s an alien feeling to have support en masse when you’re not used to getting it 1-2-1 regularly, but it’s also a feeling I’ve found myself increasingly grateful for.

Recent weeks spent dealing with the “Diabolicals”; an affectionate term for some of the difficulties we Type 1’s face regularly, have shown me how important the knowledge, experiences and views of others who’ve been through it also, directly or indirectly; can be to someone dealing with Type 1 Diabetes alone day to day. It’s a reminder that we’re never in fact, alone, that if we ask for help, our phones will be pinging with notifications like David Cameron’s press secretary’s phone after the “pig debacle”

The beauty of the DOC is that it’s mutually supportive, people don’t give to receive and when someone says Thank You that really means something. Sometimes you get support even when you’re not expecting it, mentioning you’re battling a hypo, trying a new food, trying some new Diabetes Tech, or just simply feeling like you’re winning that day, there is always at least one person that will be your cheerleader! We all need to feel we have a cheerleader in our lives every now and then, and with the link between depression and diabetes, being part of a community, any community can make the biggest difference. Of course it is wise to remember that, as with any group of people there will be times when not everyone agrees, or perhaps the general mood of the community can be affected by the few. But that’s life, no group of people can get along without a conflict in views once in a while, and my experience of those moments have been to learn from it and perhaps connect with people I wouldn’t have previously.

Not all healthcare professionals recognise the positive impact peer support, face to face or online can make to someone with Diabetes. I would recommend to anyone, newly diagnosed or a veteran, and I include parents, partners, siblings or friends who play an active role in their loved ones Diabetes; to seek out peer support in your area and also online. It’s the best and most responsive specific encyclopaedia in existence. If there isn’t a peer support group in your area, or one that you feel works for you, why not set up one of your own? You could even connect with other groups in the area occasionally, and create special events. It all works towards building our community and increasing awareness of Type 1.

There are so many of your fellow PWD’s out there ready to remind you that you are not alone, keep an eye out for them and say hello; it won’t only make a difference to your emotional wellbeing, it could make the biggest difference to you Diabetes Self Management as well.

So for now….Welcome!

Some sites to checkout:

This is not an exhaustive list of charities/organisations that support those with Diabetes, however I have personally interacted with all of them and I can safely say; they’re awesome!!

All images courtesy of Google Images.