Tag Archives: Eyes

Complications suck. But life goes on if you want it to.

17 Dec

Guest blog by Diana Maynard.

I was 7 when I was diagnosed with type 1 diabetes, back in the 70s when treatment consisted of big metal and glass syringes stored in surgical spirit, a couple of urine tests a day where you peed in a container, added 5 drops of urine and 10 drops of water to a test tube using a pipette, threw in a fizzy tablet, and tried to figure out whether the resulting solution was orange (high), blue (low), or green (good). Of course, that only told you what your average blood sugar had been like since the last time you peed. Basically useless. What good was knowing you’d had a hypo 4 hours ago? Not much was known about complications back then (actually not much about diabetes at all) and clinic visits consisted of the consultant asking if I was all right and whether I did sports, which of course I did, and him giving me a beaming smile and sending me on my way.

Getting diabetes didn’t seem too bad at first (other than not being allowed marmalade on my toast “because it’ll stop your insulin working properly” as my mum put it). My dad had had type 1 diabetes most of his life and he was fine after all. His attitude to any kind of health problem was simply to grin and bear it and not to mention it. God forbid anyone should know that you were not healthy – a complete sign of weakness (like staying in bed after 8am – a mortal sin!). I don’t think he’d ever really got over not being allowed to join the military on account of being diabetic, and to be honest, that was probably the worst thing about it for me too (me not being able to join the military, I mean, not him). On the day I was diagnosed and was lying in hospital feeling like a fraud (I felt perfectly OK), my dad brusquely told me “tough luck”, handed me a syringe and told me that as I’d be injecting for the rest of my life I had 2 choices: inject myself right then, or die. I took the first choice. He then said: “Don’t ever feel sorry for yourself, it could be a lot worse. You could have lost your leg or be blind.” He added that when he’d been diagnosed in the 1940s, the person in the bed next to him had died from diabetes complications on his first night in hospital.

Fast forward 20 years, and irony struck. I became registered blind as a result of retinopathy, and my dad had a quadruple heart bypass and later lost both his legs (and eventually died) all as a result of diabetes complications. Oddly enough, when I lost my sight (very fast, within the space of 6 months, despite a wonderful team at the eye hospital who tried to save it – I was just very unlucky in this respect), one of my closest friends lost his leg to cancer. Watching him struggle with that (my dad wasn’t to lose his legs till some years later) made me realise how lucky I was to still have my legs and only be losing my sight. I was told by the doctors that I’d lose all my sight within another 6 months, but thankfully I didn’t. I didn’t find out until later that my friend, Steve, got through his leg loss partly by thinking how lucky he was that he hadn’t lost his sight like me, and by watching me deal with progressive sight loss. More irony. The other thing that got me through it was being recommended to go to Braille classes, since they were predicting I’d lose all my sight. I duly went for a few months, and it was the best thing I ever did. Not because I can now read Braille (I’m still rubbish at it – it’s actually incredibly hard!) but because I met several deaf-blind people there (Braille is essentially their only communication since they can’t lipread, use sign language (except by touch) or listen to audio or read subtitles). These guys loved life so much despite this, and it made me realise how lucky I was that I could still hear and had only lost one sense.

The weird thing about all this is that as a child, I grew up never talking about diabetes, because it was not the done thing (I once got severely reprimanded, aged 6, by my dad for telling our next-door-neighbour, a farmer, that my dad had diabetes, while I was watching the farmer inject a cow). So I barely ever mentioned it to anyone, even my closest friends. There was no internet and there were no support groups back then, so I had no one to discuss my feelings with even if I’d wanted to. But when I got complications, I couldn’t hide the fact that I couldn’t see properly (I use a white stick sporadically these days, depending on the situation and my mood) and I have absolutely no problem talking about sight loss and diabetes to anyone who’s interested. I write a blog about travel as a blind diabetic, work for 2 diabetes-related charities in my spare time, and do a lot of advocacy in the community. I think the main reason for this change of heart is that I really struggled with not being able to talk about it when I was in my teens and twenties, and I’d love to be able to help even just one person not get complications. Because if you think diabetes sucks, then losing your sight or your leg suck a whole lot more. And it’s also not always easy to deal with things like sight loss. I mainly rely on sheer stubbornness, refusing to let it stop me doing the things I want to do. There are some exceptions: I’m not allowed to drive a car any more (though a friend did let me drive his car around an empty carpark) or fly a plane (which might have been fun, but I couldn’t fly a plane before I lost my sight). I can still play a lot of sports (badly, but my teammates are very supportive), mountain bike (badly, but I’ve only had a few accidents, none of them too serious, and slowly), climb mountains (slowly, but that’s mainly just because I’m not as fit as I’d like to be), work as a full-time academic (luckily I work with computers not hazardous chemicals) and do most normal things. Since my sight loss, I’ve been cross-country skiing and horse-riding and done plenty of stupid things, mostly without harm. I also get lost frequently, can’t recognise my friends (or enemies), fall over in airports and break bones, walk into things, talk to shop dummies, and get frustrated. But apparently “normal” people do all those things too.

So in summary, my message is this. Try not to get complications, because they suck. Big time. Do everything you can to look after yourself (now we have such cool technology these days) to minimise the risk. But you might do everything right and still get complications, just as people who have never smoked sometimes get lung cancer. And if you do get some kind of complication, make the most of what you can still do. Beating yourself up will do you absolutely no good at all, so frankly, I wouldn’t bother. I got diabetes and my brother didn’t. Lucky him. He got a brain tumour and I didn’t. Lucky me. We’re both still alive and plan to stay that way for many more years.

Advertisements

Complications? What complications – Gwyneth’s Story

20 Jun

About me

Ok, where did this all begin? It all started on 10 December 1975, a date etched in my memory, the date of my diagnosis of Type 1 diabetes. My mother took me to GP ( with a urine sample) cos I’d been drinking loads. GP didn’t believe her til they tested the sample! She was told to go home and pack me a bag then take me to the children’s ward of the local hospital. So there I was at 10 years old, 15 days before Christmas being admitted to hospital.

So began the education we all know so well from the early days, injection practice with empty syringes into an orange, learning what a hypo feels like. Thankfully I didn’t spend Christmas in hospital that year (that was to come much later) but of course eating habits changed.

Complications

Where do I start? Suppose I should really start with the first complication that occurred, retinopathy. This happened when I was pregnant, I was so anal about BG control that I had slight bleeds in both eyes and as a result laser treatment in both eyes, it was fun trying to get into the relevant position on the machine when you’re 8 months pregnant, not!

That was a minor hiccup, the major stuff (I suppose you could call them major) started happening in 2008. At my annual check in the November, the podiatrist noted I wasn’t picking up some of the pin point tests she was doing so I was referred to a vascular surgeon. April 2009 saw me have an angiogram in my right leg – result was that artery in my ankle was calcified and I was losing circulation. Ok, so now I had to really watch what I was doing. I lasted 5 months when an accident in work (a chair landing on one of my toes) sent me rushing back to hospital ( by this time I had the podiatrist on speed dial). I had to have the toe amputated that September and after a lengthy process of waiting for it to heal, eventually had to have right leg amputated below knee.

So far, so good but there I was thinking it’s happened to one ankle, I wonder how long I’ve got til the other goes. I returned to work in April 2010 and I was coping well, however things took a bit of a turn in August 2011. Nasty swollen, red foot. This resulted in me losing a toe on my left foot and this seemed to be healing well until December 2011 when a 2ndtoe turned black. The date? 19 December, guess who was in hospital that Christmas and New Year? This time having my left leg amputated below knee.

The latest complication happened in January this year (2018), I suffered a heart attack (not realising for a couple of hours that the chest pain wasn’t just indigestion). Rushed with blues and twos to local hospital, straight into the Cardiac Lab where they were successful in inserting 3 stents. Heart issue solved but kidneys threw a hissy fit about the highlighting dye they used in the procedure (kidneys had been working steadily at 30%). This caused admission to HDU, a central line going into neck & dialysis for 5 days.

Coping mechanisms

I’ll be honest sometimes it’s tough but it doesn’t stop me. I’m currently studying with Open University for  BSc (Hons) in Psychology, I’m half way through but I want to use my experiences to help others, whether it be amputees or diabetics. The story of course still isn’t finished, my kidneys currently working at about 19% and my wonderful daughter has volunteered to have tests done to see if she can be a living donor for a kidney. You could say I’m still a work in progress.

Gwyn

Type one complications – Kath’s Story

7 Jun

So I’ve had to give myself a little push to write this…partly as I’ve moved on and partly because it still hurts just a bit…

A bit about me…type one Diabetic since being diagnosed aged 9, so approx 34 years. Admittedly throughout my teens and early 20’s I thought I didn’t have to test my blood sugar as i felt “fine” ….of course I didn’t…that daily tiredness and feeling sluggish I just accepted was how I was meant to feel…and that the unexpected hypos when I did something different was a circle of being low, over eating and then being high but not ever really testing to enable myself to treat the high and get on a level. I pretty much only tested if I didn’t feel “right”! Thankfully after diagnoses I have only had 2 admissions through being hypoglycaemic and have to date never experienced diabetic ketoacidosis.

Attending diabetic clinics at the Gp surgery was always a bit unfulfilling to say the least… “you need to get your blood sugar levels under control” was the 3 monthly advice with no real concerted effort to say how but starting with testing would have helped and that was down to me.

So fast forward a few years and various diabetic related complaints….numerous retinopathy eye operations and laser surgeries, almost losing a toe to an infected toenail removal and then the unthinkable happened…(Not a single offered consultant appointment I might add)

“I’m 38 and I’ve had a heart attack” … this was going to be the distorted mantra that was to plague my mind for the next 6 months. (And occasionally still) Round and round it went. I was sat in hospital for 5 days waiting for an angiogram to confirm the myocardial infarction, I had been working nights for the preceding two weeks as a mental health nurse on my own in an office experiencing what I told myself was a trapped nerve…id been to the Drs 3 times, had ECGS and was simply told I was too young to be having heart problems and that it was probably anxiety..…I turned down an ambulance when I had chest pain at an evening out and drove myself to the out of hours Gp…then a lovely old school Gp took some bloods and sent me up to the hospital for a chest xray, which of course came back negative. I didn’t have raised cholesterol or high blood pressure either. The consultant was about to send me home with a confirmed trapped nerve and some Diazepam when she said” oh but we will just wait for your bloods and then send you on your way”. She actually said on her return some 90 minutes later that “that’ll teach me”… “You’ve had a heart attack and I must admit you straight away”.

So angiogram aside (which is the oddest feeling in the world…being awake and feeling something moving up inside your arm and into your heart which isn’t necessarily where you think it is!, lying bare bummed on a cold metal table that I thought I was going to fall off and hearing lots of figures being bandied around and the surgeon asking for a 2×2 (whatever it was) and the assistant coming back and saying they didn’t have one! What?! but I need one!) Recovery from that is really quick and I finally went home the next day. Then the real recovery started…being good to myself, testing my blood sugars…for a few weeks I was really convinced that all I could eat was chicken salad for the rest of my life.. I attended cardiac rehab with all the other heart surgery patients of an average age of 70 plus! The stress wasn’t helping my blood sugars at all and I decided I had to join a gym! Plus I didn’t want to die and became a little obsessed that that was going to happen imminently….depression comes with any chronic disease and I was slipping down that slope.

4 and a half years later and having stuck with the gym and starting running, also having had an insulin pump for the last 2 years has all really helped! Ive had the best Hba1c ever (it still needs improving) and last year I ran my first ever half marathon albeit at a snails pace but I did it with 30 plus other type one ‘s and had no dramas! I attended the Animas sports weekend at Loughborough which was also really valuable. If I had my time again or could have spoken to my 13 year old self id definitely have had a word with myself sooner!! There really shouldn’t be anything a diabetic can’t do !! It just takes a whole lot more planning!

Be kind to yourself is my motto these days, I didn’t ask for this blooming disease (none of us did) but I have it and I can manage it with support. Technology is immensely helpful as is the online support! So ask for help before it gets too much!

Kath

Thanks to Grumps for getting the #talkaboutcomplications  started!

Stars in my eyes.

28 Jan

IMG_8450

When someone asks me if I live with diabetes complications, my automatic response is ‘no’. It’s usually followed by some qualifier such as ‘thank goodness’ or ‘touch wood’ or some other ridiculously superstitious muttering that I don’t actually believe.

But my response is not really one hundred percent correct.

Setting aside short-term complications such as hypoglycaemia, I have lived with diabetes complications. You see, when I was 28 years old, after having diabetes for only four years, I was told I had cataracts in both of my eyes. I checked to make sure I wasn’t in fact an 80-year-old grandmother, and when certain that wasn’t the case, I indignantly demanded that my lovely ophthalmologist (who I have a little bit of a crush on) explain how a young woman could possibly be the owner of matching cataracts.

As it turns out, I was probably always going to get them. Both my parents currently have cataracts and all four of my grandparents had them removed. ‘The likelihood of you having cataracts was always pretty high,’ Dr Ophthalmologist explained. ‘But undoubtedly, diabetes accelerated their development.’ Diabetes: the gift that never stops bloody giving.

For twelve years I lived in fear during the lead up to my annual eye screening, believing my time was up and they would need to come out. I’d made a pact with my ophthalmologist: the cataracts could stay as long as they were not affecting my vision or preventing him from getting a truly good look at what was going on behind my retinas.

As I often do when it comes to diabetes, I made deals with myself: as long as I could still read clearly, the cataracts could stay. As long as I could still see the gorgeous face of my little darling kidlet, the cataracts were welcome. As long as I didn’t need to squint or blink to focus, the cataracts could remain.

And the psychological deal was that as long as my age in years started with a three, those fucking cataracts could cloud my eyes and I’d live with it.

Except then, with my fortieth birthday on the horizon, and middle age crises looming all around me, my vision started to be affected. I stopped driving at night time because the bright light starburst of oncoming cars meant I was often temporarily blinded and couldn’t see what else was happening on the roads. I started to need to shine a bright light directly onto whatever I was reading to illuminate the words so I could make sense of the story.

I knew it was time.

At my next visit, I told my doctor that I needed the cataracts removed. He nodded as he was looking at my retinas. ‘Renza, I can’t get a good look at everything going on back there. I’m sure it’s all still fine, but I can’t be certain. I say they need to go, too.’

So, we scheduled two surgeries (I’d used those twelve years of deal making to convince my ophthalmologist that the cataracts would be removed under general anaesthetic because there was no way I was going to be awake while he came at me with sharp objects and stuck them in my eyes), and three weeks after I turned forty, the first cataract came out. Another three weeks later, I had the second cataract removed. The surgeries were painless, easy, and recovery was ridiculously stress-free. I realised afterwards that I’d been seeing the world through sepia-coloured lenses and for the first few weeks post-surgery, I was actually startled by the colour of the sky.

I could see clearly – a blessing and a curse because suddenly those forty-year-old lines on my face, previously blurred thanks to my cloudy vision, became crystal clear. I dealt with this blow by simply dimming the lights when I was putting on my makeup to avoid spending too much time scrutinising the wrinkles, and renamed them laugh lines, congratulating myself on all I’d seen to cause them!

But while the outcome was all positive, emotionally I was a bit of a wreck. Even though I could understand that shitty genes would probably have meant I was going to grow cataracts, was I to blame somehow for their rapid and early onset? There was some time when I was newly diagnosed that my A1c was way outside target and surely my punishment was diabetes-related eye complications. I felt guilty and guilt-ridden, (damn six years of Catholic school).

And I was embarrassed. What sort of twenty- or even thirty-year old gets cataracts? And who needs cataract surgery the minute they turn forty? I tried to joke about it to cover up just how shamed I felt.

Because that’s what happens with diabetes complications. We are told that if we get them, somehow they happen because of our shortcomings. Obviously, this happened to me because I didn’t do as I was told; because I wasn’t good enough; because I didn’t take my diabetes seriously enough. That’s what I was threatened with the day I was diagnosed; that’s what all the literature about diabetes complications says. My failure to look after myself properly resulted in cataracts. Sure, I got off lightly with a pretty easily managed complication, but still, a diabetes complication nonetheless.

But of course, that’s not the case. Complications just happen sometimes. Of course we know that there are things we can do to minimise the risk, but we can’t eliminate that risk completely. Pointing blame does nothing but stigmatise living with complications and, for many, that results in not seeking care.

Talking about complications – openly and easily – is a way to reducing the shame. In the same way that no one asks to get diabetes, no one asks to get diabetes-related complications. Stop the stigma, stop the shame and let’s talk about it and support each other.