Charles Bonnet Syndrome

What is Charles Bonnet Syndrome? and why the photo of Abraham Lincoln? I'm glad that you asked! because that's what today's blog post is about.

I've been talking about eyes and complications on various platforms, lately, following the stopping of my long term eye medications. You might already know the deal with me; eye complications from T1D, surgeries, pressure, yadda yadda. You might have read or heard me talking about scotomas, too. However, I've rarely spoken about my experiences of Charles Bonnet Syndrome.

Who on earth is Charles Bonnet? A pretty interesting fellow, by all accounts. You could do some Googling to find out because I'm more interested in the syndrome than the person. Wikipedia says this about the man and the syndrome:

"In 1760 he described a condition now called Charles Bonnet Syndrome,^[7] in which vivid, complex visual hallucinations (fictive visual percepts) occur in psychologically normal people. (He documented it in his 87-year-old grandfather,^[8] who was nearly blind from cataracts in both eyes but perceived men, women, birds, carriages, buildings, tapestries and scaffolding patterns.) Most people affected are elderly with visual impairments, however the phenomenon does not occur only in the elderly or in those with visual impairments; it can also be caused by damage elsewhere in their optic pathway or brain."

Hallucinations?! Yikes! It sounds pretty scary and, to begin with at least, it was. Let's rewind a decade, I'd recently had my first eye surgery and things hadn't improved. My ever decreasing vision was still very poor and I'd resigned myself to a long period, maybe life, of very limited eyesight. It was a dark period for me both mentally and physically. One morning, I woke to find, to my utter bewilderment, Abraham Lincoln walking by the foot of my bed. He looked directly at me and then sort of melted away into the wall. Strange, I thought, I don't remember taking LSD last night. At the same time, I was paralysed by fear. I remember staying in bed for at least 20 minutes trying to piece together what had just happened. Was I really awake? 

The experience dominated my thoughts through the rest of the day. I had convinced myself that I was somehow half the way between waking and sleeping, that my lost eye sight had tricked my brain into being asleep and desperately trying to not worry about dementia or "going mad".

Some time went by, maybe a week or so, before it happened again. No visits from Lincoln, though. That's far too wacky! This time a far more realistic smile from Queen Victoria before she turned her head and vanished. That sparked a bunch of hallucinations which ranged from various Victorian age dressed people to my best friend sitting on my toilet, cheerfully exclaiming "Hello mate!" and disappearing - Although I couldn't hear him say it, it was simply "mouthed" at me.

By now, as you might imagine, I was getting a little worried for my sanity. Weirdly, I had stopped becoming frightened of the hallucinations and felt disappointed when they vanished. Perhaps seeing something clearly again was the reason for the "feel good" and my brain was releasing some kind of chemical.

Of course, I was unaware that I was experiencing Charles Bonnet Syndrome. It took a visit from a charity worker to explain that what I was going through was completely normal. He even asked the question "Old fashioned things?". I laughed out of relief and started to look forward to my next round of visits from a different century. Sadly, they never returned. It was as if my brain had worked it out and decided I no longer needed to be fed these images. Soon after that, more surgeries and the slow recovery of my sight began. 

Head to the NHS website to read more about this syndrome and the hallucinations in detail. However, they're not dangerous, they are common for anybody of any age following sight loss, they do stop.

As always, I encourage everybody who has diabetes to attend their eye screening appointments. Please go to any follow ups and have any treatments offered to you. 

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

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Was It The Cinnamon?!

 I've recently fallen into a YouTube "rabbit hole". Having watched someone survive on £1 for an entire day, the same chap then went on to describe his favourite "cheap" meals. One of those meals was a fried banana sandwich - made from bread which he baked himself. It looked pretty good and, because I'm not surviving on £1 per day, I added some sugar and cinnamon to my own fried banana sandwich. It was really good! The cinnamon really brought it to life and I've made the same sandwich several times, since.

Cinnamon! Ah, yes the frequently touted and often mocked cure for diabetes! Of course, it won't cure your diabetes and that's why it's often mocked but it does taste pretty good on various things. Strange, though, that after recently eating a lot more cinnamon (I really like a fried banana sandwich) I've finally been able to stop taking medication which I've been on for around 10 years.

I've had to take eye drops since developing retinopathy and various other eye nasties in 2010. The drops have changed, based on my changing condition, a couple of times. The latest batch began in 2014 and they were prescribed to control pressure and irritation. Very successful they were, too! After my 2014 surgery, I have been stable in the peepers. I thought that was down to a combination of better T1D management and my 2 x 2 eye drops per day. I might be right in regards to the T1D management but it seems that things have changed in the eyes dept.

Earlier this year, my eye surgeon suggested that I should stop taking the drops to "see if anything changes". I did that for around a week in the summer only to find my appointment had been rescheduled. Frustrating! But, during that week, I never noticed any real discomfort in my eye. Encouraged, I tried again before the latest appointment in the world's hottest clinic. 

If you've ever had ocular hypertension then you'll probably know the pain. Just like blood glucose levels, eyes have pressure levels that are given values. A normal value is in the teens, give or take a point or two. In 2014, my eye pressure was 44. I was immediately put on a drip to drop the pressure. I've suffered many pains in my life but eye pressure pain is by far the worst thing that I've ever felt. It lasted for 24 hours before I was able to get the drip into my hand and find relief. 24 hours of agony feels like a very long time, i wouldn't wish that pain on anybody. So, to be asked to stop the eye drops which help to control pressure was certainly a worry.

It's been over two weeks since I stopped the drops, 10 days since leaving the sauna ward, and all is stable in that eye. I don't know if I'll ever need to go back to the drops or if that's the end but I'm delighted. To just wake each day and do the T1D thing without reaching for two bottles and a tissue as well, to go to bed without fumbling around, late at night, for the same... it's less work! and it's less burden. This felt like life in 2009! only with better T1D management and no midlife crisis. 

Was it the cinnamon, though?!  

No. Let's not be silly. I've likely needed to stop the drops for a while. I have stability in both eyes and despite my visual impairment I consider myself to be very lucky and happy with my lot. Blessings counted.

To end this little blog post, I'd like to encourage you to always attend your eye screening appointments and any follow up appointments and to go for any treatments that you might need. I don't want any of you to go through the pain and darkness (physically and mentally) that I went through. If you do attend your appointments then you can reduce the chances of anything nasty happening to your eyes. Some of you will already be living with visual impairments and going through your own personal battles. Please don't ever give up on medical science, new treatments and new technologies. Ask about them, ask FOR them! and share your story without fear. There is no shame in having diabetes related eye complications.

Try the fried banana sandwich, too! :

- 2 slices of white bread, remove crusts

- 1 small sliced banana

- Some sugar (brown works best) and some ground cinnamon

Heat a tablespoon of butter in a pan, place the bread in the pan, add the banana to one slice while the bread browns and sprinkle your cinnamon and sugar on the banana. Flip the banana-less slice of bread on the top and flatten with a spatula. Turn a few times to brown evenly and sprinkle a little more sugar on each side.

You'll need insulin.  

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

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From The Cradle To The Grave

Have you been reading the shared experiences, maybe offering your own, for Hypo Awareness Week? I have offered up a few things and joined in with a few discussions. It's been heart warming to find solidarity with my peers and learn of the experiences of others. Awareness days, weeks, months or whatever are good things, in my opinion. A little understanding can go a long way for better care in a clinical environment but also at home, work and in a social arena. Keep on sharing and raising awareness of what matters to you.

So, this blog post isn't really about Hypo Awareness Week. The title and photo might have given that away already. It was inspired by the hypo conversations, though. Hypos, a seemingly unavoidable complication of having T1D, rarely spoken of as a "complication", it's frequency - more so for some than others, and the knowledge that your last hypo probably won't be your last ever hypo unless it puts you in the ground. Hypos are probably for life, once you've been diagnosed with T1D, unless technology advances further or £50 million donations find us a cure.

Lots of things are for life, of course; Taxes, corrupt politicians and ITV reality shows to name a few. You'll have your own "for life" baggage, I expect. I certainly do and despite my positive stance over awareness campaigns, I have found this particular one has left me rather melancholy over my own "lifers". 'From the cradle to the grave' refers to my own long term conditions. I almost called this blog "Not a moment" because since my first breath, I have lived with a long term condition. 

Some conditions affect our lives more deeply than others, that could be because of the condition itself or the way we lead our lives or how we're managing the terrible hand that the universe dealt us. My LTCs vary from things that I have no need for support or care over to things such as T1D, where I benefit hugely from good support and care.

My melancholy, my self-pity if you will, will come and go for the rest of my days. It is an infrequent visitor and not something to be concerned about. I feel the storm clouds gathering when I've had a rough period of health or a difficult period in my personal life. In this case, I've had a troublesome couple of weeks with hypos and reduced rest and that's why I've been all very "woe is me" for a day or two. In this time I've been revisiting my "lifers", when they happened, are they related and even considering what might happen in the years to come. Following my last hypo, frustrated, I silently went through my LTC health history:

- Day 1, congenital birth condition

- Year 2, speech condition

- Year 8, diabetes

Then, some breathing space for 25 years. The universe must've been on holiday. Let's crack on...

- Year 33, eye conditions

- Year 37, new eye conditions

- Year 44, shoulder condition

A lot of conditions, hey? and far too much detail to offer in one blog post. Some are related to each other but, because I focus on T1D and anything related to it, I rarely bother to mention anything that's not in the diabetes camp. Oh, sure, they impact on me in many different ways but they don't require any intensive management like T1D does. Oddly, despite the hypos putting me under this dark cloud, T1D is something I feel more "ready for the fight" over. It might be because things could escalate and become very bad with diabetes and the complications that it could bring or it might be the prospect of one day having very little to manage (maybe nothing) in later life when it comes to diabetes. It would be sweet to still be around to experience that.

Reading back through this post, it looks pretty bleak. Sorry, I'm usually a very positive and glass half full person. Life can be incredibly good sometimes! I don't need to think for too long to remember and to count my many blessings. Life is also very short and I firmly believe in enjoying myself as much as I can until I head off into the sunset, leaving behind a trail of horrified nurses. I encourage you to do the same (maybe not the nurses) when you can because, diabetes or not, it turns out you only get to do it once.

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

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Puppy Low

 ...oh, I guess they'll never know! Donny Osmond, I think. Apologies if you read the last blog or even heard about it on the grapevine. I decided it would be better to not publish that particular post in the interests of the personal safety and causing any distress to the victims of that particular group of people. Instead, a complete change of tone with a photo of Billy. Cute, hey?

True, he is cute and a burning ball of nuclear grade energy. As we know, using our own energy burns up that glucose pretty efficiently in most of us and so "Puppy Low" rather than "Puppy Love" seemed like a good title for this post. Sorry, Donny.

Billy arrived during the final week of my Steptember Challenge. I was already exercising a lot more than usual and chalking up a good number of hypos during the first few weeks of the month, at least. This new, very cute, energy sapper really threw a spanner into the works. Very short but high intensity bursts of exercise were sending my BG tumbling. Alongside a different waking and sleeping pattern, it's made for a difficult week with Type 1 Diabetes. I'm adjusting... kind of.

The experience made me wonder about how others cope with different variables thrown into the mix on a frequent basis. Shift workers certainly sprung to mind but I'm sure there are others with equally or more challenging lives. The solution to many of the challenges and life changes which we experience is, of course, technology. I know, a tweak of the Banting Juice might keep things in order, a couple more finger pricks per day might do the trick too. However, for those wild times, the big life changes, the why does my puppy keep on pooping moments, it seems like tech is the answer.

Some of you may have read about a lady who had waited a year for a pump clinic appointment, only to be refused funding at that appointment because of her sleeping issues. Yeah, I didn't know whether to laugh or cry either. Other stories were shared, including a particularly bizarre refusal tale which the lovely Lesley Jordan (from JDRF UK) shared. Take a look, you'll see that on my time line among all the puppy photos. Technology within diabetes should always be burden reducing for us alongside improving or maintaining our long term outlooks. My switch to a pump has vastly improved my T1D burden and, so far, the numbers all suggest that my long term outlook is in a good place. Where would I be without the pump? Struggling, for sure. I certainly wouldn't be trying to walk 250,000 steps while puppying. It could be easier, too! I could be looping and many more highs and lows would be reduced. I'll be a looper, soon enough, I'm in no real hurry.

So, while my hypos have been on the increase, I'm still in a very good place and a place which I can adjust to with the new arrival in the household. Others aren't so fortunate when it comes to accessing the technology which they need. Here is a link to a Twitter poll about hypos. The results are interesting! However, I know of at least two people who are in the replies with huge hypo numbers. Both are fighting for access to a pump and I have one question; Why?

Why are people with (sorry, my friends, no reflection on you) large numbers of hypos having to fight for access to a pump that will almost certainly reduce those dangerous and debilitating events? Are those numbers not raising large red flags and causing fast-tracks to Pumpville? I'm really at a loss. One hypo is a hypo too many and could lead to horrible things happening, including pre-mature death. To minimise those events should surely be a high priority and if many avenues have been explored without success then it's really time to sign off the pump paperwork.

We've seen these types of tech refusals before, of course, in the last 5 or 6 years since Libre hit the radar. It stinks of purse strings and worry about spending rather than offering the best possible care to diabetics - care which will ultimately reduce NHS spending on diabetes related complications. But what about NICE guidelines? What about them?! I don't know about you guys but, NICE don't live my life or manage my diabetes. I know what I need for my best care and to live my best life. Push for the technology which you KNOW will improve your life now and in the future. 

Billy agrees.

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

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