Saturday, 11 April 2015

Careless Words: stock letters and diagnoses

Until three days ago I'd never heard of Diabetic Maculopathy.  I'd heard of Diabetic Retinopathy, having worked my backside off over the space of four years to keep my emerging retinopathy at bay by adopting life with an insulin pump, CGM, and lower GI diet.  But diabetic maculopathy was a term I'd never come across.  That was, before seeing it in the cold stock letter I now held in my shaking hand.  

"Your recent eye test showed evidence of diabetic maculopathy.  Diabetic maculopathy is a condition where there are changes to the blood vessels on the macula, the central part of the retina at the back of your eye."

It continued...

"It is important you attend this appointment to protect your eyesight.  The following can help reduce your risk of developing sight-threatening diabetic retinopathy in the future:

  • Aim to control your blood sugar levels as well as possible.
  • Make sure your blood pressure is monitored regularly
  • Go for regular diabetic checks."

After finishing my silent 'fuck you very much' head-rant about the control of my blood sugars (6.2% HbA1c), my blood pressure (102/60), and my regular diabetes appointments (minimum of 8 per year), I turned to  Dr. Google, having had no real explanation about what this letter - and new diagnosis - really meant.  My unsteady hands uncovered more and move information I could have lived a lifetime without knowing.  

I learned about the loss of central vision and inability to recognise faces. I read about injections to they eyeballs and about laser treatment ending in the loss of peripheral vision.  I imagined how this might all affect me. And I'm not ashamed to say that I wallowed in my post-diagnosis fog of confusion for several days.

Over the next three days I received that same letter three times, due to some kind of unwelcome admin error.

The fourth letter, from the specialist eye consultant within the actual eye department at the hospital I attend (as opposed to the community eye clinic where I have the eye tests done) told a somewhat different tale. 

"The retinal photography and OCT scans done when you were recently seen in the diabetic eye clinic showed there are changes related to your diabetes.  You do not need treatment at this time."

It continued...

"We will be sending you an appointment for repeat photographs and OCT scan in approximately three months."

This new letter made no mention of maculopathy, and gave no indication of any level of urgency to be seen.  Had I received only this letter, I would have been spared the many days - and two further letters - of worry and stress.  I would not have heard of the term maculopathy until a point at which I would have seen a professional face to face; a time when I can pose questions

As my good friend and shoulder-to-turn-to-after-that-letter, Laura, recently said, complications aren't just physical.  The psychological impact of being diagnosed with another condition, one which may impact your quality of life enormously, is not a dialogue appropriate for a stock letter.  The person selecting the drop-down options on my letter, while running through their daily work to-do list, probably had no idea of the impact it would have on me, or that the universal, impersonal stock letter using terms like 'sight-threatening' and 'treatment options' was a new and concerning diagnosis . They probably had no idea of the work, and money, I put into trying to manage this condition, and they probably have no idea that a driving license is key for my job, or that losing it could change the face of my career markedly.  They probably wouldn't know of my hopes that children may form part of my future, and that not recognising their faces, or that of my husband, is devastating to me.

The careless words used in the initial letter(sss...), which equated to a diagnosis of a sight-threatening condition, left a usually level-headed diabetic, perfectly familiar with complications in the past, in a significant amount of distress.  And yet, the follow-up information painted a somewhat different, less frightening picture.  I do still have some changes in my eyes; changes which need further assessment and monitoring.  But complications themselves I can live with, when I am armed with correct information and a feeling of control.  I have lived with retinopathy for years, and muclopathy is just a variation of this.  I can live with that.  I have always been the sort of person who responded best to knowledge about my condition, rather than threats of what may come. But I don't cope well when half-truths are delivered in such a careless and scare-mongering way.

My response to the NHS stock letter-gate is sealed and in the post. And normal life can resume.

Tuesday, 24 February 2015

The timing was perfect

Even though detailing life with diabetes through a blog can seem to the outside world as though I'm writing my very own Dear Deidre column, it's really about finding and connecting with others living with this sometimes bizarre way of life. Hard done by, I am not. 

The occasions when I do feel the 'woe is me' attitude creeping in are rare; usually somewhere in the midst of deepest burnt-out from managing a life-long chronic condition, when no amount of effort seems to land me on the right side of 'optimal' blood sugar range, and no amount of dedication seems to pay off. But a swift and forgiveable wallow in self-pity, subsequent kick up the rear-end and reminder that too long in full wallow mode is what will most likely lead to complications beyond emotional ones, and I'm back on track. 

The Wholemeal Cafe in Takaka, Golden Bay was our pit-stop on today's adventure down under, and the array of glorious-smelling cakes, tasty-looking treats and scrumptious-seeming drinks (think organic Wilky Wonka's warehouse) were beckoning. It was a delight to behold.

I'd already enjoyed three coffees that morning and having eaten lunch and being in a humid part of New Zealand's North Island, all I could dream of at that moment was a cool glass of something delicious.

I scoured the backs of bottles and grilled the server for carb counts, hoping to find just one I could sip on to quench my thirst. 

53g per serving.
35g per serving. 
28g per serving. 
47g per serving. 


For one reason or another, mainly a slip of 1.5% in my last HbA1c, I've been trying to claw back something which looks like control. Although people with diabetes can eat anything they want (ask me if I'm allowed that; I dare you), there are times when I wholly feel that I shouldn't if I really want to see the results I look for. Insulin works in covering most foods well, but juices it does not. And I didn't want a post-drink spike ruining my day and rendering me useless through fatigue as my body tries to rid itself of the unecessary sugar floating around my blood stream. 

After five minutes of trying to find some kind of middle-ground, I sat at the table with my chilled tap-water, feeling very sorry for myself that guava-orange, apple-mango and black currant delight were not on the menu for me tonight. 

Begrudgingly I took out my CGM to check where I was at. 


As if by magic my diabetes decided to play ball, and my current blood sugar of 3.2mmol and falling meant any one of the juices on offer were mine for the taking, and the gentle fall meant I didn't need to gulp it down in a confused and sweaty mess. I could take my time with this.

My sparkling blood orange delight went down just perfectly. And in a moment unlike that of the Shawshank Redemption workers in the 'rooftop at sunset' scene, I had a little happy grin on my face treating this hypo. 

Anna 1, Diabetes 0. 

Friday, 13 February 2015

Just one more...

"Just one more look!"

I insist, as we round the corner of yet another beautiful backdrop, stopping at scenic viewpoints to soak up every last inch of this beautiful isle.

"Just one more go!"

I beg, as we zip-lining,swim, kayak, luge and hot-pool our way through our days. 

"Just one more shot!"

I plead, as the camera gets put away after a hard day's work, capturing the whirlwind adventure we find ourselves in.

"Just one more day!" 

It feels like that's all I've been saying since arriving on the shores of New Zealand to fulfill my dream of traveling to the other side of the world.  Never quite happy with the days we had.

Just.  One.  More.  Day.

All too often I forget - shamefully so - that there are corners of the world where children don't wish to travel.  They care not for kayaking or zip-lining.  Fine cuisine and locally made wine are things of an alien world.  What they want - what they need - is insulin.  Without insulin, they die.  Without enough insulin, they can expect to live in suffering.

Two years ago, a group of bloggers in America decided to set out to raise money on Valentine's Day, for children who may not see another, and the outcome was incredible

Just $5 can buy enough insulin to keep a child alive for a month, through the International Diabetes Federation's Life for a Child programme, which provides life-saving insulin to the far corners of the developing world.

What if

What if, instead of giving 12 red roses on Valentine's Day this year, you gave 11 plus the gift of having given a child 'life' for a month.  

What if, instead of giving 12 red roses, which may wilt and die in less days than there are flowers in your posy, you gave a child 'life' for a year, and your lover's vase stood empty?

What if every person in the world who could afford it, gave a child life for a month?

The International Diabetes Federation's Life for a Child scheme provides insulin to children in parts of the developing world where children don't have the luxury of ticking a box on a prescription form and kicking up a fuss if it is not delivered in 48 hours. 

By donating just $5 to Life for a Child, the cost of just one rose, you could save a life.  

Just one more day needn't be a dream.

Tuesday, 27 January 2015

Control Freaky

This picture gives me the shivers. Not the butter compartment, well-known as the des res living accommodation of insulin, but the fact that this butter compartment is in a communal refrigerator of a public campsite inhabited by up to 100 people at any one time. 

I'm a self-confessed control freak about most things - no doubt a result of 28 years of having words like 'control', 'in-range' and 'compliant' (*shudders*) a part of my lexicon since diagnosis. But I'm especially control freaky about my diabetes. I feel safer that way. Anything I don't have control over with regards to my blood sugars, medications - even complications, unnerves me. 

In England, leaving your insulin at the whim of any would-be trouble-maker is a big no-no,  and I would rather leave my car open with a sat nav on display and a large sign saying 'take me', than leave my insulin out for the taking. 

That said, I am currently at the beginning of a eight-week trip around New Zealand, and while my Frio case is doing a good job at stopping my insulin from warming up, it doesn't feel as though it is keeping 'refrigerated' exactly. With its chemical stability comprised after 28 days, and my trip lasting 65, I am trying to keep mu insulin in as good a condition as possible and trying to keep it refrigerated. This means embracing the public fridge now and then, come what may. 

Let's hope New Zealand lives up to its name of being a safe place. And let's hope leaving my insulin on display is the turning over of a new relaxed leaf for me. 

Although there is a chance that the total control freak in me may also have 2 bottles stashed in my emergency, 'goes everywhere with me' travel bag, and one more cheeky bottle hidden in my handbag. I'm also insured up to the hilt and have an app which shows me all the nearest hospitals and doctor surgeries. You know, just in case. 

Tuesday, 13 January 2015

Loans without interest

If Charlie has one cannula which lasts two days, a bottle of insulin which lasts 10 and a bottle of 50 test strips, how quickly will Charlie travel 15 miles on a train travelling at 60 miles per hour?

I finally understand the point of those seemingly inane classroom maths quizzes.

As we plan for the big trip, and the possibility of Armageddon, my brain turns to mush at the mind-melting mathematics I have to do in order to make sure I have all the equipment, insulin and general diabetes paraphernalia I am going to need to successfully navigate my way across the other side of the world for just two short months.  As I do so, it reminds me how vital each link in the diabetes armour I wear really is: without cannulas, the tubing is pointless; without tubing, the insulin is redundant; without the insulin, I can expect only to get to know the hospitals of New Zealand. If any one piece of this equipment fails, the rest is rendered obsolete.

But above all, none of the equipment has any use at all if my pump pops its little Animas-shaped clogs while down under.  Animas, like many pump companies, offer a loan pump service if you are going away for a while.  As I ticked the final boxes on my checklist of travelling to-dos, I called them up and ordered my loan pump.  I'd already ordered my pump insurance (mainly because loan pumps are covered on this ample policy), but on the off-chance that something should happen, I wanted to make sure I could just switch pumps and carry on enjoying the trip of a lifetime.

Once again Animas' customer service impressed me when they agreed to let me use a loan pump for two months, as opposed to the couple of weeks they normally offer one.  They did have to check this amount of time would be OK, and carried and a couple of checks to make sure their stocks were high enough to ensure other customers could also use a loan pump if needing to, but my spare pump, in New Zealand pink (other countries are available), arrived today, shiny and boxed up ready to go on a journey of its own.

It is worth remembering if you are going away to check that your pump company does offer this kind of service, and that an extended trip won't be a problem.  I'm also taking pens, insulin and needles with me just in case, but having this little safety-net on board while I'm away makes me feel even more safe while honeymooning in an unfamiliar land.  Thank you, Animas.

Monday, 5 January 2015

Finding balance...

Sometimes life can move at 100 miles per hour.  At least, if I'm not keeping a close eye on things, I can easily let it.  With a fast-paced job and a love of the outdoors, I find myself moving, speaking and filling up my calendar at the speed of light.  And while those fun and frolics bring a certain aspect of joy to my life, the aftermath of repeated late nights, early mornings, lengthy days and not enough breaths in between, are hard to bury forever.

It's no secret to me that adrenaline and cortisol have their effects on my insulin resistance, and even the briefest bout of stress can have me notching up the basal levels on my pump 10%, 20% or 30% at a time in order to keep the diabetes beast under control.  And even though I can hide the effects of stress with a flexible approach to insulin for a while, the shallow breaths, bad skin and broken sleep give away what my body is trying to tell me, and it shouldn't need to scream before I listen. But finding balance can be a challenge.  Especially when the demands of life seem to be pulling me in more directions than I can navigate simultaneously.

Earlier this year a friend of my family reached out to me and told me about her work as a Craniosacral Therapist (CST).  My mother, who goes as often as she can, had told me about her 'wonderful sessions' with Louise, and the contented smile on her face and air of peace about her after she returned from therapy intrigued me more.  I'd already started exploring the idea of meditation, and had long known that when I get stressed one of the best (and quickest) ways to get things back on track was to strip back my diet and eat simplified basic meals.  The idea that I could find a new way to find some balance, had me taking Louise up on the offer of trying a few sessions, to see what effects it might have on my blood sugars and general well-being.

CST is designed to address a range of issues from emotional to physical, by creating a space within which to recognise the body's manifestations of what is wrong, and allow it the time, and peace, to heal.  It grew from osteopathy, but was developed by a practitioner who found that he gained the best results from his patients not by manipulating joints with force, but by using very light touch to relax his patients.  While relaxed, the therapist and patient can then work together to identify where in the body they feel pain or discomfort, and focus on addressing that using those light touches and guided sessions.

My sessions with Louise started with a conversation about my experiences of illness, pain, injuries and even birth! Because CST aims to address the person as a whole, not just the symptoms you show up with.  Perhaps unsurprisingly, diabetes played a significant role in this conversation, because the condition itself can leave lasting effects on the body, and the emotional demands of managing a long term chronic condition can leave me twisted up with the worry and weight of the constant grind.

Once Louise had an idea of the kinds of stressors that were, and are, in my life, we moved into the session.  Lying face-up on a table similar to massage table, the first part of the session was about 'settling down'.  This involves taking deep breaths while lying in a comfortable, peaceful room, and focussing on where in my body I felt good, and where I felt bad.  What became immediately noticeable to me during my first session was that my feet found it almost impossible to rest.  Constant twitching, fiddling and intense awareness of the light touches Louise was making, or bothered by the touch of the blanket on them.  It became clear to us both that my busy head was mirrored by my busy feet.  Over the next few weeks we concentrated on mastering the settling techniques, and focussed on relaxing my feet and legs.  By session 5, my legs had the most incredible sensation of relaxed 'heaviness' during the session, and that feeling of busyness and urgency had faded away.  

We worked on several symptoms over the next few weeks, from a tight chest to headaches and emotional stress, and each time I learned more about how to listen to what was going on in my body, and how to focus on allowing the space to breathe and focus on well-being.  But most of all, I found out how to stop...and take a breath... in a way which had escaped me until I tried Craniosacral Therapy.

Craniosacral therapy is now part of the way I do diabetes.  Sessions cost from £40 so aren't something I can afford every month.  But when life gets a little busy and I forget to take a breath, it's a tool I use to bring me back to the beginning; a great place to start from again. In the same way that stripping back my diet helps me find due North diabetically, CST helps me set my emotional and physical compass back in the right direction.  I've also since used the techniques from the sessions in calming me down on a turbulent flight, and on stressful days in the office when I'm feeling overwhelmed by the every-which-way instructions directions and demands of worklife around me.

In some cases Craniosacral Therapy can be prescribed on the NHS and while they won't recommend a specific therapist, they will recommend CST as a therapy for people dealing with emotional, psychological and physical complaints.  It is ideal during pregnancy and even with babies, or people struggling with fertility.  Out of interest it is since my sessions with Louise that I have fallen into a regular monthly routine - somthing I had never done in my life as an adult female. 

You can find more info here, for anyone who wants to explore the idea of a holistic approach to finding balance, and I could not recommend Louise highly enough.

Monday, 1 December 2014

Animas Vibe, Stateside

After four happy years on the Medtonic Veo insulin pump, I made the decision to switch to the Animas Vibe in January this year, after careful consideration.  I've always known that the customer service behind a pump is far more important than its sexiness, but having got to know the pump, and experienced some of the customer service, it was, as they say, a 'no-brainer'.  

I've been rocking Dexcom CGM as part of my diabetes arsenal for almost two years, without a single day when I've taken for granted this incredible technology.  Integrated CGM means the option of  the glucose data being sent straight to the colour screen on the pump, rather than lugging around a
separate unit with the already weighty collection of diabetes paraphernalia I keep at my side constantly.  And the waterproof feature meant I could start surfing again without the blood sugars creeping up to the uncomfortable teens afterwards.  A day-kayak no longer comes without the unnerving feeling that too much fun could end in tears.

Our friends in the US have long been waiting for the Animas Vibe to reach their shores, thanks to the FDA's notorious much lengthier and more stringent approval process.  But there's great news........The Vibe is Stateside!

In a press release from earlier today, Animas proudly announced the release of the Vibe in the US, now approved for people aged 18 and over. So those over the pond an finally get their hands on this sexy little pump, from a company with an excellent rep.

Check out their website for more information, here.