Retinal screening 2013

One of the biggest fears I have, associated with my diabetes, is the development of retinopathy. Put simply, diabetic retinopathy is caused when the diabetes affects the small blood vessels in the retina. It can eventually lead to blindness, especially if a person continues to have poor diabetes management. What scares me most about this, is that diabetic retinopathy progresses with time, but may not cause symptoms until it is advanced and close to affecting a person’s sight.

I have in my mind, the memory of my grandad progressively losing his sight, as a result of him refusing to manage his diabetes sensibly. By the time he passed away in March 2012, he could barely see. He carried around a magnifying glass, but this didn’t make much difference. It still haunts me, the fact that if my grandad had treated his diabetes differently, he could still be alive today. Toward the end, I gave up trying to make my grandad realise what he was doing to his body. He wouldn’t listen to his own granddaughter. That makes me angry and sad.

All this being said, is leading toward my annual retinal screening. Friday 1st November. Another month, another hospital appointment. Seriously, I feel like I live in the hospital! I should at least have my own car parking space, by now.

I told the retinal photographer about my constant blood-shot eyes. Fortunately, it doesn’t sound like this is anything diabetes-related. Still, something I need to get checked out with the optician. Unfortunately for me, I completely forgot about the eye drops. You can imagine my horror when I see the lady coming toward me with a pot of eye drops. I can only wonder what must be in that little pot, to make my vision near enough disappear. I’d rather not think about it.

Anyway, fifteen minutes later, with blurry eyes, I had my photo taken of the back of my eye. Big flash, and bam! I find it quite amazing the capability of today’s technology. If only I were that amazed by the waiting times to get my results. I was told that there didn’t seem to be anything significant, but I would have to wait 4-5 weeks for my results. It feels like time freezes whenever I’m waiting for results.

The worst thing about my retinal screening, is the headache that follows. This year, I broke a record. My headache lasted a whole 3.5 days! However, it’s much better to have a headache, than lose my sight. I can cope with a headache (just!).

On a lighter note, the day of my retinal screening, was a day filled with giggles. All week, I had been having trouble getting the needles for my insulin pens, so I decided to try the pharmacy at the hospital. However, I don’t think I was taken very seriously, due to the massive sunglasses I was wearing! I then proceeded to bake a loaf of gluten free bread, whilst wearing the sunglasses. I managed to save myself from embarrassment, remembering at the last minute, to take my glasses off when answering the door to the postman!

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JDRF Discovery Evening

Earlier this week, I was lucky enough to have the time and the reliable trains (for a change) to attend the JDRF Discover Evening, in London. After getting a little lost, I  found the New Moon pub, in Leadenhall Market, where the event was being held. I don’t know if it’s just me, but I find city workers congregating in one space quite intimidating. This was made worse by me seeming to be in everyone’s way, once in the pub! Doh!

The Discovery Evening was an opportunity for me to meet other fellow people who are living with diabetes. I found it funny though, there were so many bottles of wines and plates or pizza and pastries being given to us, you wouldn’t think we all had diabetes!

There were 7 topics of conversation this evening, covering research progress, fitness, type 1 poetry, a talk from the co-founder of the MySugr app, and how to get involved with JDRF.

The evening opened with a update from JDRF, regarding their proposals and progress. The charity divides its research projects into 3 main segments – Cure, Treat and Prevent. There are so many professionals, trying to find a way to end life as we know it, with diabetes. It’s really quite humbling to know that so many people are spending their time and money, trying to help us. To anyone involved in this, thank you, on behalf of everyone with diabetes!

The second talk was given by Monika Reddy, Imperial College London, who is involved in the BiAP project. There are many research studies currently being carried out across the world, to find a cure for diabetes. Monika’s study, is a clever approach, and one that I hadn’t heard about previously.What makes this study different from the others, is that the algorithm used, is based on the glucose responses of biological alpha and beta cells of the pancreas, implemented on a microchip.

There are currently 20 people who are part of the clinical trials, which started in 2012. The study uses the Medtronic CGM and the Accu-Chek Combo Spirit pump, in collaboration with the algorithm, which is on a microchip. Looking at the graphs Monika provided, there seems to be an improvement in participants’ blood glucose levels, compared to when they were not ‘linked up’ to the BiAP unit. Considering this project commenced in 2012, the team have made great progress, and I can only wish them the best!

We had a bit of a break from all the information that we were trying to take in, with two very interesting poets. Initially reading ‘type 1 poetry’ on the agenda, I didn’t have a clue what this meant. However, Naomi, who has Type 1 Diabetes, and her partner Dan, who had a pancreas to be envious of, showed that diabetes isn’t all doom and gloom. Naomi’s poetry about hypos and hypers, and eating all the food in the cupboard, made me laugh, which was really comforting. As it turns out, I was actually at the same university as Dan, it’s a small world!

After a break (filled with more wine and pizza), the evening resumed, with a JDRF supporter talking about how diabetes affected her relationship with exercise. After a spell of associating exercise with ‘bad’ sugar levels, Rebecca Butterworth was reunited with her love of sport. Rebecca has done so much with her life, including travelling the world, and I really do admire her. Even running the marathon, Rebecca shows how diabetes shouldn’t stop you doing anything. Well done, and best of luck for the future, Rebecca!

The next talk was really inspirational. Fredrik DeBong, Co-Founder of the MySugr diabetes app, travelled all the way from Sweden, to share his experiences with diabetes. I was expecting Fredrik to simply go through the various elements of his app. However, Fredrik shared so much more, and I am incredibly grateful for his bravery in doing so.

Fredrik brought up the rather sensitive issue of Diabetes Burnout. This is a topic that, like many mental health issues, is seen as a stigma in society. People who suffer with ‘burnout’ often go through this period, alone and overwhelmed. Sure, I hate having diabetes and I often think ‘why me’, but ‘burnout’ burns a little deeper than this. Not wanting to test your blood glucose levels, injecting a random number of units of insulin, or simply not bothering to inject. People who go through this stage, probably know the potential consequences of doing this; it certainly sounds like Fredrik knew. But that doesn’t mean anything, when you are in a severe depression, and just want the ground to swallow you up, until the diabetes has disappeared. Sadly, that isn’t going to happen any time soon.

Looking on hindsight, Fredrik came up with a number of very good points, that I can relate to:
“Diabetes is like wrestling with monsters”. Every day is a struggle for me. Sometimes I win, sometimes, the diabetes monster wins.
“You nag, you lose”. I wish more people understood this. I know I’ve got to check my sugar levels, and I know I have to inject. There’s no need to remind me. My diabetes is going to be a part of my life for a very long time, and it’s not something I can forget about.
“Progress, not perfection”. I admit, I can be hard on myself, when it comes to numbers. Since completing my DAFNE course, I have wanted my sugar levels to be 4.5-7.5. This rarely happens, and I do annoy myself. I am slowly starting to give myself a break if I don’t get in this range. I will get there, and it doesn’t matter, as long as I am well.

I really admire Fredrik for what he has done in recent years. He has made a good situation, out of a very bad one. Creating and using the MySugr app, is a way of giving the diabetes monster, a face, an identity. This way, diabetes can’t just hide in the corner, slowly taking over our lives. I love this idea. Setting challenges is also a great way of spurring me on, even when I’m having a ‘bad diabetes’ day.

Although I’m not a great lover of sport, the next speaker, Kyle Rose, provided the audience with some very useful information, regarding exercise. A useful pointer I picked up was, the suggestion of aiming for a bg level of around 7, before exercise. I think I’ll try this when I get back to my zumba classes! Kyle also brought up the idea that we need to control our diabetes, before it controls us. So making sure we get out health check ups, not too many hypos/hypers etc. A very good point.

The last speaker of the evening was Dilan Shah, who has given me a wealth of ideas that I want to get involved with! Dilan has taken part in some fantastic events, fundraising for JDRF, including walking Kilamanjaro. I’d love to do this, but being anaemic, I’m not sure I’d be up to the challenge for another couple of years.

The main reason I attended the JDRF Discovery Evening, was to meet more people who are in the same scenario as I am. I met a father, who’s 8year old son has had diabetes for the past 2 years. I met a girl, same age as me, who was diagnosed last year, but has already ran a marathon! I also met a man who like me, was initially diagnosed with type 2 diabetes, then later told he was type 1.

The event has given me a lot of confidence to do more positive things in my community. Myself and Andy are really getting going with the Peer Support Scheme (initiated by Diabetes UK). I’ve had a really good response from my local diabetes centre, and Diabetes UK regional office, who are keen to help me spread the word. I’m also excited to be involved in setting up the Basildon Diabetes UK Group. I put my name down to be joint-secretary with my lovely Nicola, so I’m looking forward to making plans for the group.

There’s so much I want to do, to help find a cure for diabetes, and to help people living with the condition, overcome their daily struggles. Helping other people, helps me.

 

Every one needs someone to talk to…

Living with diabetes is a monstrous challenge. If you have diabetes, give yourself a pat on the back, you’re amazing!

As strong as we all are, living each day, fighting and winning against diabetes, there are undoubtedly days where we wish we didn’t have the condition, where we just want to hibernate from the world, and hope that our diabetes will simply disappear. Unfortunately, there isn’t yet a cure for diabetes, so I, like many other people, have no escape from the condition. Diabetes is a bit like a full time job, without the pay rise, the fancy lunch meetings or paid leave.

Many people living with diabetes, may perhaps feel like they always have to be strong, otherwise diabetes will beat them. There is a huge amount of pressure within wider society, to always be strong, to accept the fact that one has a chronic condition. Beating diabetes is a great train of thought, and is a very good source of motivation to maintain one’s diabetes.

However, it is very difficult to keep up this mentality, every hour, of every day, of every month, of every year. Diabetes is tiring enough, without the emotional side of it. This is sometimes made more difficult by the existence of the social stigma of mental health. It is widely recognised that there is some level of correlation between chronic conditions, and the likes of anxiety and depression.

The social stigma needs to be broken. People need to know that it’s acceptable not to feel ok all the time. Sadly, it is going to take a lot of time and effort to make everyone in society to realise this.

There are all sorts of reasons why people might not feel comfortable talking about how they’re feeling, especially sharing these feelings with close relatives/friends. Someone may feel guilty about feeling the way they do, they might fear being laughed at or not taking seriously. They may feel talking pointless, if they think the other person won’t be able to empathise. Whatever the reason, many people often end up struggling, alone. This loneliness makes the diabetes journey an even more tiresome and challenging one.

Diabetes UK have recently recruited a strong team of peer support volunteers, to try to reach those who are struggling in their diabetes journey. The peer support scheme is intended to make it easier for people who don’t know who they can turn to, to share their issues with someone, rather than struggling on their own.

We are not healthcare experts, but we are good listeners, and we have a wealth of resources, to help you get the help you want/need. If you start to feel like diabetes is taking over your life or that you don’t know how to manage, then we’re here to help. It doesn’t matter how trivial you think your worry is, we will be there to listen. We have first hand experience of living with diabetes, so it is very likely that we will have at some point, felt the same as you!

Every person’s experience of diabetes, is very different from the next person’s experience. However, it is unlikely that any one person will have a ‘perfect journey’ of managing their diabetes. No one should ever feel like they can’t ask for help.

The Peer Support Scheme volunteers have recently set up a blog, which we hope will become a very useful portal of information. There is also a Facebook page and group. We’re so high-tech, you can even catch us via our Twitter @LouPeerSupport and @AndyPeerSupport

Life With Diabetes: What Diabetic Bloggers Want You To Know.

As part of Diabetes Awareness Month, the American Recall Centre has been asking people who blog about diabetes, what one thing they wish people knew about diabetes. Here are some examples:

recall centre

So. The one thing I wish other people knew about diabetes:

Diabetes is a a part of me, and it will always be a part of me, until there is a cure. However, it doesn’t stop me doing the things I want to do. I can still eat delicious food. I can still go travelling around the world. I can still climb a mountain. I can still go to theme parks. I can still have fun.

Diabetes is a part of me, but it doesn’t define me. I define who I am. 

Woe is me, NHS!

Now, don’t get me wrong, here. Since birth, I have been on the receiving end of the NHS services, for about 23 years (I’m 25). I’ve seen so many doctors and specialists for this and that. I am currently seeing consultants for my diabetes and my IBS. I’ve been under a lot of different departments, from the baby care unit for 3 weeks when I was born, to the ENT, orthodontic, endoscopy, a&e numerous times, fracture clinic. I feel like the list is endless! I’ve also been under Great Ormond Street, Middlesex Hospital.
I am fortunate to never have needed emergency help, as such. My issues have all been ongoing, and relatively mild, compared to what some people have to go through. I am not seriously ill, I just have things wrong with me, that I don’t want. Such as my diabetes. Such as my supposed irritable bowel syndrome. However, these are things that are not life-threatening, and for the most part, don’t stop me from doing too much that I want to.
The NHS was introduced in 1948 and since it’s launch, has become the world largest public funded health service. The NHS was born out of a belief that health care should be available for all, regardless of wealth.  For the first time, hospitals, doctors, nurses, pharmacists, opticians and dentists are brought together under one umbrella organisation to provide services that are free for all at the point of delivery.
Without a doubt, the NHS is a luxury. It is a luxury that many people forget they have, and believe is a right. To those people, I would ask to think about the state of healthcare services across the rest of the world. If someone in the family needed a course of antibiotics, tomorrow, do you know how much money you would be charged? How about if you needed an x-ray, MRI scan or blood tests. Without the NHS on hand, these tests would cost hundreds of pounds. An MRI scan for example, would set the patient back £200. Could you afford that, tomorrow? No? Good job we have the NHS!
There are a lot of good things about the NHS. Reassurance that you will be seen by a professional, and you will receive the necessary investigations and medication, to resolve your problems. Give a moment to think about the individuals that make the NHS possible. The nurses and doctors who work around the clock, attending to the sick. The paramedics who don’t know what they’re going to have to face, on a day to day basis.
Hopefully, I’ve acknowledged the great work of individuals working within the NHS. Now, I come to the point of this blog post. My two causes of frustration with the NHS. Waiting times and lack of communication.
Waiting times
I sometimes feel like my GP surgery is trying their best to annoy me, and to make sure I don’t get the service I am asking for. Of course, I’m not the only one who has to race to get through to the receptionist at 8am on the morning that I want an appointment. Not a minute sooner, as I’ll be put through to the Emergency GP Service at my local hospital. Not a minute later, because all the slots will have gone by then. I might add ‘obtaining a doctor’s appointment’ to my CV, it really is a skill, these days!
I’m annoyed further more, when I’m told I’m not allowed to make appointments for later in that week. If I want to see a doctor, but it’s not an emergency, I will have to wait at least 10 days. I can’t even begin to apprehend how annoying this is. Even more annoying, is a ‘thing’ my local surgery is trialling at the moment; I phoned up a couple of weeks ago, asking for an appointment later that evening. No can do. I was told to call back at 3pm. Do the receptionists not realise that some people work in jobs in which it’s not OK to make personal calls during the day, or they’re just too busy to take time out?!
Part of the reason why I’m writing this post, is because I still haven’t been able to get an appointment to have my flu jab. Every time I try to make an appointment, I get given an appointment between 12-1pm. This is despite me telling the receptionists that I work 8.30-5pm every day! I did think I had made a breakthrough last week. The nurse overheard me ‘discussing’ (to put it lightly) with the receptionist about time slots for the flu jab. The nurse made life sound so easy, as she told me to just ‘pop in’ after work on Tuesday (yesterday), as it wouldn’t take a minute! Success!
Fast forward to yesterday (back to the future?!) at 5pm. Driving to the GP surgery, I was instantly annoyed by what I saw..no lights on, and the gate to the car park locked. Excellent. Having as much trouble as I have had with this surgery, this was not going to help my stress levels. I honestly didn’t know whether to laugh or cry, when I read the note on the door. ‘This surgery will be shut from 1pm today, for a time to learn session’. Two issues have occurred here. Why was I told to go to the GP surgery, when they knew it would be shut? Second, they have these sessions on a regular basis, so why can they not give the receptionists all the training required, when they initially start thieir job? That way, they can be fully trained, and ready to do their job. This is what happens in any other job, yes?
Oh, and I still haven’t had my flu jab. It doesn’t look like I’ll be getting it this week, either. I have to have a blood test tonight, and the GP surgery shuts at 1pm every Thursday (not sure why!) and I believe I am busy after work on Friday. Well done, NHS Receptionists!
Lack of communication
This is a big one, and I can tell you stories from as far back as 2010. There could have been earlier times of miss-communication, but to be honest, my parents always came with me to appointments, so they made sure they said their bit for me!
Looking back to 2010, I was under the ENT, due to my decline in hearing. I had glue-ear when I was a young girl, and have had 2 sets of gromits. This eventually got better, and so I was discharged from the hospital. Fast forward to 2010 and I am having hearing tests and am seeing a consultant. As far as the consultant is concerned, there is nothing wrong with me, and I have to simply live with my poor hearing. End of. Move on.
Except, I couldn’t move on. I couldn’t move on, because a few weeks later, I was sent a letter for a scan, as requested by my ENT consultant. Hm. He didn’t mention that, I know I didn’t misheard anything, as mum was in my appointment with me!
I had the scan, but I was fuming. I’d spent the week prior to the scan, working myself up into a fit of anxiety. The worst thing was, no one could tell me anything. Thankfully, the scan showed nothing abnormal. However, it annoyed me so so much, that the consultant had told me that there was nothing to be done, I was fine, and that was that. It could have been the case that he’d requested a scan, thinking it’s better to be safe than sorry. However, it would have been nice, if someone had informed me of this decision. That would at least have stopped me worrying quite so much!
As you may have already picked up, I am constantly in a battle with the receptionists at my GP surgery. However, this summer, I reached breaking point. For the past two and a half years, I have been in agony with stomach pains. I’ve been to a&e twice. I’ve been told I have IBS, gall stones, constipation, and even that the pains have been caused by my diabetes. I’ve lost track of what else I’ve been told could be wrong!
In June this year, through Benenden Healthcare, I had a gastroscopy. Not the nicest things I’ve ever been through, and not something I want to have ever again. What’s more frustrating, is that the investigation didn’t show anything. Taking me back to square one. The consultant did however, suggest I have further investigations, under the NHS. Yay. Within a week, I received a copy of the letter that had been sent to my GP. Having spoken to my GP surgery, I knew that I’d have to wait up to 6 weeks. No big deal, as long as I get seen eventually. I’m just impressed with how quickly my GP was sent a letter from Benenden!
By the end of August, I still hadn’t received any letters, or appointments for further investigation. Take a few breaths, I’m sure all is in hand. It is in fact, the opposite of ‘in hand’. The reason why I have no appointment, is because no referral letter was ever sent to the hospital. I later found out that this was due to my GP apparently not knowing who to refer me to. I think it is this my point that my blood begins to boil. How can a GP say that? After weeks of pestering, he sent a letter to the Endoscopy department at my local hospital, for an endoscopy. As he was supposed to have done 3 months ago. Arghhh.
I think my next point is still loosely related to communication – patient confidentiality. When I initially complained to my GP surgery, I wrote a letter of complaint, telling them I was going to make a formal complaint, if things didn’t happen quickly. Three days later, when I went to the GP surgery, to speak to the practice manager, I was sneakily ushered into see my GP. This would have been fine, as I was at least speaking to someone. However, it was not fine, as my GP was mid way through an appointment with another patient. I find this incredibly disrespectful to the person he was supposed to be seeing, and disrespectful toward me. I don’t want other people knowing the in’s and out’s of my health! Made worse, was the fact that my GP was trying to explain the endoscopy procedure to me, in front of two young children.
I think maybe I’m just unlucky, when it comes to communication with the NHS, and getting the results I’m looking for. I know there are a lot of people who struggle to get appointments to see doctors, and many people suffer for longer than necessary. However, I have had some excellent care from the NHS. My diabetes care team are stars, especially my DSN, Jacqui. I love how much effort she goes to, to make my life with diabetes, that bit easier.
I just wish the NHS could pull itself together, so that we can be proud of this unique service!