7 October 2014

A parting of the ways - With a little leap of faith

Back to some diabetes-related blogging - on the possibility of switching back to injections, after almost a decade of wearing an insulin pump. However, I feel the overall outlook of this post can extend to non-diabetics also - to anyone who has ever questioned or avoided a decision, in fear of the potential repercussions. Sometimes though, you need to override uncertainty and fears - what would you do if you knew you could not fail? 

 Blue chilling in the black pouch;
he was pumped for presents...
I have worn an insulin pump for almost exactly nine years. I recall it quite vividly, in fact. September 2005, I had just turned 11. A rather unwell 11 year old at that. I had experienced 3 years of varying injection regimes but, despite my best efforts, Diabetes never had the same agenda. The most recent one  (levimer and novorapid) had stolen my appetite, smile and motivation, overwhelmed by a dawning realisation that I was stuck with an illness doing its upmost to fight me.

A couple of years ago I talked about this particularly rocky period in this post, but suffice to say that my saving grace came in the form of a little box, resembling a pager or rather outdated mobile phone. Blue - my insulin pump. The picture on the right is one that always brings a smile to my face; for the majority of that year, I had become a shadow of my former self; this Christmas day, three months on from meeting Blue, I was truly smiling and engaging with the world again! I could finally see a tangible future living with this illness, not against it. That's the things with diabetes; it's not a friend, but you also cannot make it any enemy. It is more like a relative, in a peculiar way - love them or hate them, they're with you for life so you need to get used to them! For the avoidance of doubt, it will always top my list of most annoying family member, regardless of how many times Millie attempts to eat my shoes…

The pump is by no means flawless, which I've elaborated on previously so won't repeat myself (here and here), but it did change my life. Nonetheless, in the last year or so I've experienced a problem that has arisen from having spent nearly a decade tied to Blue. Essentially, it is linked to a build up of scar tissue at the infusion set "sites" - set changes are required every 3 days. When your body is repeatedly bombarded with a needle and small tube, for approximately 1000 days of your life, it's naturally going to have an impact. Insulin can also change the actual tissue structure, causing insulin resistance… because life was just too boring for diabetes!

photo credit: pinterest
I have tried rotating sites, multiple different types of infusion sets. I have had days where I've done 3/4/5 set changes a day, after having set after set hitting scar tissue and often drawing blood. Delightful, I know. I write about it now with a quite matter-of-fact approach, but in those moments I can utterly crumble. I've panicked my poor parents by crying down the phone to them, and have on one occasion thrown my blood sugar metre across the room in frustration… unsurprisingly, this did little to help my predicament. I can have weeks where every set I put in works, but it almost inevitably returns to the periods like now, where my body puts up a fight I cannot counter. I put on a happy, laughing and relatively carefree front - my upmost fear in life is worrying/affecting others - but underneath it does take a physical and emotional toll.

I've read a few diabetes blogs, where people have had similar issues and have switched back to multiple daily injections for a few months, allowing the scar tissue to properly heal. I've considered it at points in the last year, but think I have finally reached that 'acceptance' stage. Blue and I might arrange a separation. A parting of the ways, to steal a line from my favourite book (you can always rely on JK to bring words of wisdom to a situation!)

I do have fears. There are logistical concerns with the actual transition; switching back to a long-acting insulin injection, as opposed to contiuous 24 hour delivery of short-acting insulin, I do worry that I will face the same blood sugar issues of my childhood. Yet there is also the emotional impact - letting go of something that has kept me alive for nine years. It's amazing how much faith I have placed in this little blue box! My AAA battery-powered pancreas.

I was a cool - and Harry Potter obsessed - kid
If you are afraid of heights, you can choose to step away from that ledge; you do not have to force yourself to look down. I have an illness that doesn't afford me that choice. I have had people tell me in the past how "brave" I must be; that they "couldn't possibly do it". For me, however, 'bravery' isn't the right word for whatever this is. If anything, my biggest achievement has been learning to be a realist - at heart I am anything but! I am the girl who believed her Hogwarts letter would come through that mailbox. Who made an Elf House at Christmas, because "the Elves always seem to be forgotten about". So my biggest feat, in living with this illness, has probably been forcing myself to override this inherent part of my character. To accept my life for what it is - when it comes down to it, the needles, the blood samples, the constant number games… they cannot be avoided. Insulin is a necessity that my body - through some unfortunate series of events - cannot provide.

For me there is the added crux of an additional illness, which s requires me to stand on a ledge - of varying heights - each and every day. Just as wearing an insulin pump is an integral part of my life, so is eating. Despite huge leaps forward, I will be the first to admit that I am far from fully recovered from my eating disorder. The added diabetes complication in the last year has played a significant role in this - blood sugar difficulties are the most dangerous catalyst for the "monster" rearing its ugly head again, because I have over a decade of scripted thoughts around "bad carbs" and "diabetes rules". When I see high blood sugars, carbohydrate anxieties fall down on me like a monsoon, and I can find myself drowning all too quickly.

So standing on this new ledge is pragmatism - a way of safeguarding myself from a fall that is potentially far more dangerous. I have made too many breakthroughs on the recovery side of things recently, to allow my other illness to submerge them. I've finally had dominoes at Uni, I've stopped attaching the pointless "skinny" to my coffee order, and I've discovered that rich teas really don't take the biscuit…The nature of eating disorders, though, is that they are always looking for things to latch onto - even when you are seemingly doing so well, they are like a parasite, clinging onto anything and everything. I remember a doctor once telling seven-year-old me that "insulin is the key to open the lock". I think the key analogy is a really useful way for seeing so many things - not least of all reminding yourself that, more often than not, it is held by you. No one else. You make the choice.

My main reasoning behind this post, is simply about taking those leaps of faith. All too often I see people fall into clouds and evade that silver lining; I include myself in this.

photo credit: pinterest

Hard and doubt-ridden decisions may feel, at the time, the opposite of a safe choice. It might be uncomfortable; entering the unknown always is. When you are not quite sure what the ground your next step falls onto will be - you might even lose your footing. But I think, for me, it comes back to remembering that life isn't going to be one seamless move after another.

This may seem like a rather bizarre - and obscure - analogy. Although to those who know me, this may not come as a surprise…! However, it was something that just came to me the other week, and has stuck. I don't know how many people will be familiar with the Alphapuzzle? A system of correlating 26 numbers with each letter of the alphabet, on a crossword-style grid. For years I was convinced that it was unsolvable….

...until a week ago, because I completed it on my own - with no iPhone app help - for the first time. It was on the train journey up to Newcastle for my grandpa's funeral, where I became a little fixated on working my way through the Sunday Express puzzle page, where he always completed the crossword. My grandma did the Alphapuzzle though, and sudoku. So I was on a mission to finish, and I think it was this determination that saw me discover one of the crucial 'skills' needed.

Along with a reasonable grasp of the English language, and a bit of logic, you essentially need a bit of nerve. A handful of the letters you fill in will not be the definitive right answer. You have to go with your gut. Well I did - case in point. I know some people might be thinking - did this girl seriously go on for three paragraphs about a puzzle? Well… as I mentioned earlier, it is me, so perhaps not too surprising.

But it's a snapshot example of how, so often in life, you can never guarantee an outcome. It's taken some rather painful awakenings for me to stare life's not fair straight in the face and say: Okay. I get it. I accept that you are not going to give me an easy paper round here; though on the odd occasion, Diabetes, letting me sleep through the night (no 2am blood sugar wake-up call) would be appreciated. Nonetheless, it is about also saying: but I won't settle for "that's just the way it is". So you need to keep searching for solutions, even if the lightbulb answer isn't shining above you - life's red traffic lights instead seeming like the only source of light.

This isn't just about dealing with diabetes, an eating disorder, or any chronic/mental illness. It is dealing with life, with all its hurdles and hiccups; the things that make us want to hide under a blanket and turn off all the lights. You just have to make sure that you don't allow them go out.

Possibility over inevitability. Taking the leap of faith… and trusting in your feet to make that landing for you.

Source: Perks of Being a Wallflower
photo credit: pinterest

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2 comments

  1. Sophie, this is beautiful! Best of luck to you

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  2. Hi Sophie - thanks for linking me in your Tweet post just now for your #Dblog. I'm not sure if I'm one of the ones you are referencing as having done the leap of faith - back to MDI - but it can be done. It does take guts, to get back to using two types of insulins (I don't do well with Levemir - which I found worked best taken X3 a day - but I am not a good clock person - so oops .... forgot the 1400 shot). I eventually went back to Lantus - and overall take every year a 3 - 6 month break from George Michael (hey - he's pink - and he's a cute guy despite his pref for the other sex ). Okay - getting off topic here -
    the only reason I go on pump breaks - is due to the work in the diabetic field I work in (I post at Diabetes1.org and branching out eventually to a private blog site more often - aka The Roller Coaster Ride of Diabetes on Blogger .... yuppers an expat - advertising here on your on blog ).
    I'm here for you if you need any help to stay sane in finding a routine with your MDI regime - if you need it - don't be shy :)

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