Depression, Complications and Diabetes: Seeing the signs

It's hard to pinpoint when or where it began but it's been creeping in for some time, and the feeling is all too familiar.  There is so much in my life to be grateful for; a wonderful family, a beautiful, healthy daughter, a good job and cosy home. I go on holidays and have had a rare, precious opportunity to spend more than a year at home with my kiddo before returning to work, something people all over the world would give their left arm for.   But when the early days of depression begin, it is rarely because of dwelling on what you lack. It is a complicated issue made murkier by the swings and roundabouts of blood sugars and diabetes complications.

I spent days Googling 'Post Natal Depression', confused that I felt none of the typical symptoms, but well aware that something wasn't right.  I felt deeply connected with my child, and although I relished  (good God, did I RELISH) the moments I had away from her for a break, I couldn't wait to hold her again and make absurdly disgusting fart noises just to see her smile. I was also in the 'easiest' phase of parenting so far, when she sleeps through the night and is predictable in routine in the day.  I was finally drinking hot coffee again, the house was tidy and I could indulge in whatever evening TV I wanted, with little chance of interruption.  But despite being unable to connect my feelings with being a few months postpartum, my mood was low: correction, is low.

To the outside world I still smiled and joked.  I gushed about maternity leave and posted happy pictures on Facebook, but inside my head was whirring full of emotions fuelled by blood sugar mayhem and fears about the future.

The earliest place I could pinpoint as the beginning was visiting the Opthamologist's office, being told that they believed my Maculopathy may be developing, and further tests were needed.  I guess they have told people this a thousand times, but for me it was a first.  Casually talking about my sight like it was a sandwich I might miss out on eating, we discussed treatment and risks like they were no big deal.  Blindness and amputation have always been my greatest diabetes fears, and hearing the words out loud, looking over to my daughter sleeping peacefully in her pushchair, my mind was spinning thinking how much I would stand to miss out on; how much I wouldn't see.

Each morning I wake with a jump as the two - now three - trigger fingers jammed shut on hand, horribly shocking and a painful way to start the day.  The only relief being an operation.  That to follow the two carpal tunnel operations I have already had and the double tendinitis which needed shots and still remains in one hand.  Pain is a powerful beast.

Add to that infected Dexcom site which may, or may not, still have a piece of sensor stuck inside  my leg since May which was viewed by five different medical professionals over five separate visits, before someone had to take my hand and tell me it would be OK, as my eyes filled with tears of terror and defeat.  Eventually someone prescribed me antibiotics. It took a visit to the ER and a million tearful 'thank yous', before someone took my hand.

The pain in my left foot, like walking on a stone, may or may not be a diabetes nerve complication.  It's hard to tell given that nerve endings are tricky things to look at.  But it makes even the most wonderful walk a painful affair.  Pain is a powerful beast.

In recent months I have had so much to feel joyful for, but even the most joyful moments have been dulled by the constant aches and pains of the complications which everyone tells me are 'just a part of diabetes'.  The drip-drip-drip of complications, pain and medical mysteries has left me feeling just a little broken, at a time in my life when most women talk about how pregnancy and labour made them 'think they can do anything', I feel nothing but all the things I can't do.   

"There is always someone worse off than you," Is a mantra I've tried to tell myself, but in the moments I spend trying to get out of bed without bending my fingers because they will snap shut with excruciating pain, or the moments where the GP sends me on my way telling me to lose weight, without investigating any of the issues further, I find it hard to take a whole breath.

I don't know if I am depressed.  But I do know that I am a person with diabetes coming to terms with the possibility of permanent chronic pain from repeated inflammation issues. I am the mother of a baby trying to get my head around the fact that my eyes might not keep going forever.  I am the 33 year-old who has to take each step down the stairs one at a time in the morning because her foot, and swollen joints feel particularly painful today. I am 'the diabetic' gasping of thirst because her postpartum tiredness meant she slept through the 'HIGH' alarm on her Dexcom, the Dexcom she currently resents because of the sensor-might-not-be-sensor still stuck in her leg.

I am human.  And part of being human is that I am feeling ever so completely 'diabetic', right now.  As though that is the biggest part of me. Maybe the only part - the rest having been chipped away by a disease I can't escape. I am afraid.  And that's OK to say.

I don't know what the future will hold, but I know that endorphins and 'saying it out loud' can only serve to help.  Small goals at the gym, spending time outside and perhaps re-immersing myself in the community I have turned away from will help.  

For now, it's just one day at a time.

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.

Keeping my eye on...erm...my eyeballs

When my eye care was transferred from the community clinic to the retinopathy specialist in the Summer of 2009, I didn't really understand what that meant.  Rather, I understood it - the fact that something about the condition of my retinas had deteriorated - but I didn't really understand the implications of that referral. I figured that at 23 years of having had T1 diabetes, this was fairly standard procedure and that changes would, perhaps inevitably, always happen. 

I have never resigned myself to any particular 'fate' with my diabetes.  And since becoming an adult and emerging from my teen years (see also: total disengagement from all forms of clinical care), I have strived to take care of myself. But when you have T1 diabetes you have to learn to face up to the fact that complications may happen.  Although good blood sugar control is widely accepted as the most effective way of reducing the risk of complications, it does just that; reduces risk.  It could, and might, still happen.

As part of that referral my appointments were ramped up from every 12 months to every three, and I no longer saw the friendly nurses at the clinic in a matter of 20 minutes as they photographed my eyeballs and sent me on my way.  Instead I moved to two-hour appointments with an hour-long wait with one of the senior Consultants at Queen Alexandra's Opthamology department, a quiet but personable man known to me only as Mr Booth.  

It wasn't until around a year after I first attended, and 6 months after starting my insulin pump journey, that I started to really ask about what 'all this' meant.  Mr Booth explained to me that a number of years of high blood glucose (BG) levels had left damage to my retina.  He told me to imagine that I had been scratching away at the same spot on the back of my hand, and that eventually that scratch would bleed.  He explained that BG levels over recommended levels (as opposed to the 'non-recommended' ones I had been having fun with) left this kind of damage on the retina.  He explained that my non-proliferative retinopathy (small bleeds) were not too great a risk at first, but that they were beginning to change and I was now considered at the transitional stage to proliferative retinopathy. In human terms, this means that in order to cope with the changes in my eyes, my body would start to grow new, smaller, weaker blood vessels, and that when these break from the incessant scratching I so loved they would leak larger, more damaging amounts of blood onto the retina.

Mr Booth gave me some trusted resources to go to to learn more, and always asked me to continue my hard work.  He was always kind and gave me the truth.  Sometimes that was a hard truth.  But I'm not a 'sugar-coat it' kind of girl (mainly because sugar was not about to help this situation.  Pun-tastic, yah?).  I like to hear it as it is.  It makes me take things more seriously.

So why is retinopathy so serious?  Well, this is why. When the capillaries begin to bleed the vision you are left with until blood disperses (which can take weeks) looks something like this:

As I'm sure you can imagine, life through these eyes is a damn-site tougher.  There would be no driving.  Everything from shopping to working, and cinema to time-telling - everything - would be a challenge.  And it wasn't a challenge I was ready for, or ready to accept, anyway.

I knuckled down, exercised, mastered my pump, bought myself CGM and worked really hard at my diet to find more blood-sugar friendly foods. And I secretly prayed to a God I don't believe in that things wouldn't get any worse.

Dilated pupils.  And approximately four-inch-long lower eyelashes?

January 2014 would mark four years since I first asked Mr Booth what was going on.  January 2014 marked the four-year anniversary of pumping.  And January 2014 also marked the time I was able to rejoin those nurses at the community clinic.  Today marked my annual eye-dilation and photo-shoot and the evidence was there; after four years of constant efforts to keep things on a tighter leash, my eyes have finally shown the progress the Opthamologist needed to see in order to sign me off from their intensive service.

My latest set of eyeball photo-shoots evidenced that not only had I been able to stave off the transition into established proliferative retinopathy, but I had also managed to reverse the damage and put myself fully back into non-proliferative retinopathy (also known as background retinopathy).  And the better news still is that background retinopathy can be reversed even further, returning to a normal, healthy eyeball.

This is, of course, my new aim.

Cateract.  Sparkly.

My cateracts are still in full swing (another complication of diabetes: it speeds everything else up), but they are operable and not something I worry myself about at the moment because I still have
what they call 20/20 vision.  

Complications can happen, and I will be ready for them if, or most likely when, they do.  But in the meantime, if you've been diagnosed with retinopathy and think 'well that's it', (because that's what we are often led to believe), that's not it.  There are ways to reduce your complications and give yourself the best chance to stay complication-free as long as you can. 

Wanna get intimate?  Then check out my balls.  

June 2009.  Haemorrhages showing on the left side of the eyeball (red dots)

January 2014.  Haemorrhages vastly reduced and showing signs of reversal.
And a much healthier looking eye all-together.  

The gift of sight

The list of the complications available for a person with diabetes to choose from is certainly a lengthy one.  Like any normal person, I have times when my BGs are an afterthought and the rest of my life takes over.  But for the other 95% of the time I bolus 20 mins before my food, eat meals I know agree with me and exercise - sometimes reluctantly - all with the aim of avoiding complications.



Nevertheless, if complications do happen and I had to choose which I would want least (weirdest. list. ever.), blindness would be right up there. High glucose levels, something every diabetic can struggle with, are the root cause of a great number of eye problems leading to blindess that diabetics can suffer from, including macular oedema.


In 2011, NICE deemed a sight-saving drug called Lucentis 'too expensive' to prescribe to people with diabetes at risk of losing their sight due to Macular Oedema.  However, thanks to the manufacturers dropping their prices, the decision has been re-considered and a review of the guidance has now deemed it favourable. Very NICE indeed.


This drug however, is injected straight into they eye - something you might want to consider if you were planning to take your eyes off your diabetes game for just a minute.


For the full report, click here, and keep up the stirling work, folks.

Occular lapdancing

There are a few dates in the calendar diabetics round the world ear-mark in the diary with a big red circle surrounding them. These are the dates when the (rather ominous sounding) ‘nine tests’ are carried in order to make sure we can still earn our tax money and don't need carting off to the nackers yard, just yet.  These include blood pressure, smoking status, a marker for blood glucose called HbA1c, urinary albuminm serum creatinine, cholesterol, eyes, feet and my personal favourite, weight.  The latter usually being pre-empted by a twitchy Anna standing on the scales professing that, 'I just joined a gym and have already lost a couple of pounds.'  I am lying, most of the time.

You've no doubt seen these nine tests mentioned in the media recently because figures from the National Diabetes Audit discovered that just over half of all Type 2s and a third of all type 1s are not receiving the full range of tests, meaning people with complications, or at serious risk of them, are falling through the cracks. In the NHS? Surely not.

I am glad to say that I am one of the two thirds of type 1s who do make the effort to get all nine done. But I should probably mention that I also have my consultant on speed dial (he just loves this, I can tell), my nurse on email and have inadvertently added my dietician to my broader social circle, through what can only be described as proof of the existence of the 6 degrees of separation.

But still, it does take effort to get them all done and relies on GPs, consultants and now, ourselves to be paying attention. Until 3 months ago, I didn't even know these were a benchmark for basic care. I just did it year-in, year-out, regardless.

It's part of the deal if you want to stick around.

Well last week was my annual occular lap-dance, when someone shines a light into your eye at a distance which would be considered sexual harassment in any other situation, so they can see into your eyes and check that everything is still as it should be. These had at one point in my life increased to every 3 months, because although my diabetes team did it subtly, due to many years of increased blood glucose (BG) levels my eyes were already beginning to show signs of damage, and I had to be transferred to a specialist lap-dancer who would assess whether or not to laser them.

I always go into these with a level of nervousness now. Although kidney-explosion (they don’t actually explode, that was for when (if) they ever make the film of this post…) is my biggest diabetes fear (if my absurd reaction to 30-second HBa1c test is anything to go by, I will need to be fully sedated for dialysis), a close second is going blind. As much as I want a dog, currently forbidden by my husband and cats, it's an extreme way to get there. Sneaking one in during the night and looking after my eyes is a much better way to go.

Holding my breath (partly due to nerves, partly because I can't remember if I ate garlic last night and the doc is now 1.5 inches from my face), I wait for the results. I search for a clue on his face at every opportunity, convincing myself that each tiny move is a secret 'Well, we kept it at bay but I better tell her,' being spoken through the medium of body language.

Tick

Tock

Well I am pleased to say that thanks to my leap into the pumping world, finally joining the gym (for real, not just because my annual chubb check) my acceptance that Simvastatin (now Atorvastatin – more on that to follow) and low-carb lifestyle, I am still managing to keep problems at bay. I have got evidence of the death of some blood vessels, but the real risk is when smaller, weaker blood vessels try to grow back in their place. These break, bleed and eventually need to be corrected by laser (not the kind on the TV adverts). This procedure can often leave you without peripheral vision, and your driving license.

For me however, things are still looking good (sorry about the pun). I can rest assured that if I continue to keep going as I am, I won’t be another statistic.

Are you getting the full nine tests?

 

Don't admit defeat, just change your attack

I've never been one for bottles of pills and potions to overcome illness. I don't believe in cough medicine. If I have a headache I drink a glass of water first and reach for the paracetamol later. When I do buy medicines, they often expire before I got a chance to develop that illness for a second time. I believe as much as I can in natural remedies. That being said, I don't reject drugs all together. That probably seems pretty obvious seeing as to survive I rely entirely on a synthetic vesion of the hormone insulin, which I pump into my own body through necessity more than choice, 24/7. I know that without it, I would only have a couple of days to live. But where ever possible, I like to avoid being on any drugs or medications and try to do what I can myself.

So when I was told at the beginning of this year that my cholesterol was just a touch higher than the doctors would like it and recognising that as someone who has put on a few pounds in the years since University, I decided to try and get that level down myself. I fully recognise that I do not have a genetic predisposition to have high cholesterol. I never had it before and in 25 years of diabetes, I was never at risk of it until I got a little *cough* 'cuddlier'. So when being threatened with taking a pill daily for the rest of my life, my first line of attack had to be my diet and exercise. You see I'd love to say I put on weight because I do loads of exercise and am in fact the size of a small rugby player because of my sheer muscle, but the truth is that while I try to embrace the natural natural, I also love Subway. And MacDonald's breakfast. And chocolate, the processed kind. And Subway. And cheese. And did I mention Subway?

So over the last 10 months I lost about 20 lbs, started doing body combat 1-2 times a week, cycling to work and doing cardio DVDs at home. I have tried to change my diet and generally follow a lower carb way of life (although I disagree very vehemently with ultra low carb). I do still have brown rice, potatoes now and then and the occasional slice of chilli bread (omnomnom). Low and behold as my weight and diet improved, so did my cholesterol. Markedly in fact. And I figured I was finally in the clear from the threat of high cholesterol.

That was until my most recent eye exam.

As I sat with the eye doctor I gave her a little run down of my last results as usual; HbA1c of 7%, BP is 90/120, cholesterol is a little high but I am addressing this etc etc.

As she navigated her way around my retina with her painfully bright light which we are supposed to look at, sitting at a distance which in any other situation would be totally inappropriate and bordering on lapdancing, I couldn't help asking her how things were going.

She commented that there was a lot more going on in my right eye than my left, which I was fully expecting. I have had background retinopathy for some time, which is the weakening and dying of veins and capillaries at the back of the eye caused by high blood sugars, which leads to tiny breaks and bleeds (haemorraghes) on the retina. When new veins attempt to grow in order to counteract this, they too will break and bleed. They can eventually lead to blindess but before it does there is huge amounts you can do to stop or at the very least, seriosuly delay it. With the pump and some major work I had managed to get this to a plateau. Things were getting all that much better, but they also weren't getting worse. So imagine my surprise when I asked if there was anything I should be aware of or concerned about:

"Nope. There is evidence of high cholesterol but I would expect that from what you have said."

Ermmm, what? Cholesterol damage in my eyes?? When was that part of the deal?

Call me ignorant, but little did I know that cholesterol has a significant impact on the eyes. I thought the high blood sugars and dying vessels was it. But if that wasn't enough, it turns out that cholesterol plays an enormous role here too. Perhaps this should be obvious seeing as cholesterol causes the blockages to veins and arteries and predominantly sight problems experienced by diabetics are related to vein/capillary deterioration/blockage in the eyes. But I had never actually been faced with this explanantion. It turns out that various veins in my eyes are begining to show 'cotton wool' like evidence that the areas where the veins and capillaries join, are starting to struggle. A good article about it is here, so read if you want to know more about it.

As I do with all things, I go into a state of panic for the first minute. I usually stare blankly at the person delivering the news to me and then start to try and piece together how to tackle it. I couldn't walk away without getting the doctor's thoughts on the Simvastatin, which has been available to me but always refused, for years. I told her all about what I was doing to lower my cholesterol, but asked her for a frank opinion about the pills.

I'm better when things are in plain English.

"Well, a two-pronged approach will always be the best option. Continue with the diet and exercise but in the meantime, why not take the Simvastatin as well? The evidence of high cholesterol in your eyes isn't permanent and can still heal. If you attack this from both angles you will by far have the best chance of stopping this."

"So could I come off them if I manage to get the cholesterol down to a very low level?"

"Absolutely."


That was the decider. As much as I would love to address the cholesterol issue from every angle other than pills, I am not taking chances with my sight for the sake of pride or wanting to do things 'the natural way'. 'Natural' is not walking with a stick or needing the assistance of a dog. My sight is just too precious to me.

So I decided that rather than view this as a sign of my failure, it is a sign of my determination. After 25 years I have managed to keep all complications at bay. Even the background retinopathy is at a 'young' stage and can still be stopped.

Any war is won by the clever deployment of troops. So I'm sending in some from the North and some from the South. One day I hope to come off the Simvastatin and allow my cholesterol to return to its natural tree hugging status but until then, exercise and diet are my sword and Simvastatin is my shield.

Three weeks in and finally at peace with it.