Tuesday, 29 July 2014

Frustrations





Summer has arrived, bringing with it some glorious sunshine, delicious food and drink and plenty of socialising… but also frustrations. Frustrations that all seem to be pointing directly at my diabetes, and all seem to have hit their target at once.

Maybe I’m just letting things get to me, maybe it's because I’m now on holiday and have time to stop and consider what’s going on inside me, rather than what’s going on around me. Either way, I have that tense and uneasy feeling, knotting in my stomach, aching for the break from diabetes that I know won’t come. I suppose this blog is a way to offload some of my frustrations, to organise my thoughts and see things from a different angle, but at the same time I just want a break from the constant finger pricking, insulin calculations, portion sizes, dose adjustments, hypos, hypers and appointments. Who wouldn't want a break from all of that?

The past 8 weeks have been full of hypos, leaving me feeling drained and dispirited. I tried to use a reduced temporary basal rate on my insulin pump but when I did the hypos would either happen anyway or my blood sugars would go too high. I tried to reduce my bolus insulin doses but that also made my sugars go too high. Each day during the past 8 weeks has been very different, in a new environment, and it was difficult to know what to do regarding insulin doses when I didn’t know what I’d be doing from one minute to the next. What I wouldn't give to be able to use a CGM and just look at a screen to know exactly what was going on with my blood sugars, to feel in control and not constantly worrying. To be able to go to bed and know that I wouldn’t wake up having a hypo and be starting the next day with big tired eyes and no energy. A twitter friend suggested raising funds to buy a CGM, but being too proud I said no. I wish there was a more affordable way to feel secure in my own body.

Support has been lacking… Recently I feel that if I didn’t have the diabetes online community and my family/partner I would be very alone. Over the months I’ve tried to talk to my health care professionals; tried to take responsibility for my diabetes as I’ve been told to do, but I haven’t had guidance - I can’t do it all myself and I can feel myself becoming increasingly frustrated. I’ve asked about ways to diagnose an ongoing issue, treatments that I might be able to try, referrals that might be made. I’ve asked what I can do to help myself and to speed the process of a diagnosis up, but I’ve had nothing back, not even a reply. I’m starting to feel how lonely diabetes can be when there aren’t trained professionals around to help. Lonely and also intimidating at times. 

Now I’m waiting for the feeling to subside, as it always does. I know that one day I’ll wake up and say “sod it, things will get better” because I have to pick myself back up in the end. What will I be left with if I stay down? I know the answer to that and it won’t be pleasant. The funny thing is that when it comes to other people’s diabetes my focus is in the right place, the answers are there and I can help them. I can’t feel their frustrations, but I can relate to them, which I suppose is the only benefit to how I’m feeling at the moment.


Sunday, 20 July 2014

Show me your pump






#showmeyourpump is making the news after Sierra Sandison proudly strutted her stuff and showed off her insulin pump during the Miss Idaho competition. Now people with diabetes all over the world are doing the same and posting pictures of themselves wearing their insulin pumps on facebook, twitter, instagram and more. Not only is the hashtag going viral, but at the same time it's raising awareness for Type 1 diabetes, inspiring others to feel more confident with their insulin pumps, and encouraging people to try insulin pump therapy. 

I'm not one to be shy about getting my pump out and have been posting pictures of my beloved pump (Iain) on twitter and facebook from day one! Nor should I be shy about it... In fact, I love any opportunity to show it off, give a demonstration and answer any questions people have. Some people may think it's strange, but I'm proud to have a portable pancreas - It's far better than my original pancreas. It's an expensive bit of kit that many people want but aren't able to have, for lots of reasons, and it has given me the chance to have more freedom when it comes to living life with diabetes. 

So here are a few pictures from my facebook page of me, proudly showing off my pump!






Wednesday, 9 July 2014

Back to Basics



The 15 healthcare essentials… a check list for all patients with diabetes (devised by Diabetes UK) to show them what they should expect, in terms of basic care, from the HCPs (health care professionals) they see.
So what are the 15 healthcare essentials?
My monthly column for The Diabetes Times

Thursday, 26 June 2014

D-eye-abetes



A few months ago, at the end of a blog, I said that I had some good news. I was hoping to write about it (and celebrate it) much sooner but sadly almost 4 months passed before I had my news confirmed in writing.

In 2012 a consultant from my local eye department said these words to me; "You have stage four diabetic retinopathy. It's very likely that you'll lose your sight within the next 12 months."

I was beyond devastated. I was so scared that I couldn't reply or ask him any questions. I couldn't absorb the diagnosis I'd been given or make sense of it in my mind. The consultant didn't seem to understand the impact if his words, spoken in a small cubical with only a with a brightly coloured curtain separating us from other patients. He asked me to sign a consent form and then left me sitting alone to prepare for an hour long session of laser treatment on my eyes. That was the first time we met... I didn't even know his name.

In the months after this diagnosis I began to turn my diabetes around. Yes, this diagnosis was ultimately due to me neglecting my diabetes. I'd been warned of the complications that could occur if I didn't take care of myself, but I hadn't believed they would happen. I'd managed to slip through the NHS system roughly a year after my diagnosis and up until 2012 this had suited me just fine. I had no interest in attending diabetes appointments, they were incredibly generic and I felt that I was nothing more than a box that needed ticking twice a year.

But I was in trouble. Serious trouble that I couldn't turn around on my own. I refused to accept that I would lose my sight... I refused to accept that it was too late for me. The moment the consultant had spoken those words I truly began to appreciate what I had always taken for granted - my sight. I knew that I needed to fight incredibly hard to ensure I could beat this diagnosis, and that's what I did. My vision took a turn for the worst soon after the diagnosis, it was a period of time that took a lot of getting used to. I had to leave my job, temporarily, as I couldn't see my computer screen well enough. I couldn't drive, couldn't watch TV, and couldn’t leave the house without having someone with me. I lost a lot of my independence. 

It's true what they say... You don't know what you have until it's gone. The amount of treatment I'd been having for my eyes was certainly taking its toll on my vision but I knew that ultimately it was the best chance I had to stop them from deteriorating. Bright lights and dark rooms took a very long time for my eyes to adjust to, but after I'd had a lot of laser treatment, injections and operations, things started to turn around.

Over the past few years I've been having constant checks and tests to make sure I was on track and that my retinopathy wasn't progressing. I was aware that the stage I was at couldn't be reversed, but I could slow or stop it. I tried to form a link between my diabetes team and my eye team - I needed the communication between them to be strong but it didn't seem to form. This meant that I was passing on messages between the two which, at the time, caused unnecessary stress. Tightening up my blood glucose control had caused more problems with my eyes (something I hadn't been warned about by either team) but in the long run having better control was the best option, not only for my retinopathy but also to prevent any further diabetes related complications.




So the good news... In March this year the DVLA asked me to have an eye test to see if my retinopathy, or the treatment involved, had caused damage that would stop me from driving. Up until that point my consultant had said that he had no worries over me driving, and the DVLA had been informed of this, but it's always nerve-wracking having the fate of my driving licence in someone else's hands. Not being able to drive would cause me all sorts of problems and I expect it would cost me a lot of money to get around. Something that I can't afford at the moment. The DVLA took 4 months to send their answer (though they state on their website and forms that this process will only take 6 weeks!) and I finally found out this week that I've passed all their tests!! The field vision test that checks my peripheral vision was absolutely fine (laser treatment can cause this to deteriorate) and I can read a licence plate from the required distance :)

Finding out this good news after being told 2 years ago that it was likely I'd lose my sight has been wonderful! Although getting on track with my diabetes hasn't been easy it's definitely paid off. If I could pass on any kind of message from this journey it would be that I really wish I hadn't ever reached the stage where I was in absolute panic thinking that I would go blind... I wish I'd done something much sooner to prevent it from happening. If anyone else is going through a similar experience then I'd say hang in there, talk to your diabetes team and ask them to liaise with your eye team, research treatments and ask about what's available to you (Avastin was purchased by my hospital Trust but isn't used by all) and slowly tighten up your diabetes control... Quick changes can sometimes cause problems, so it's best to be slow but steady - that's why it's important for your diabetes team and eye team to talk to one another.


Ninjabetic x 


   

Saturday, 7 June 2014

Life isn't always sweet






I saw this post on twitter recently by Kim/Diabetes - aka @txtngmypancreas and it got me thinking about what I hold back on when I blog about my diabetes and why. I believe my biggest reason is because I don't fully understand how I feel about my diabetes at times, which can be incredibly frustrating, but how else will I understand it unless I address it?

So one of my "this is really hard and I'm struggling but I'm HERE" stories revolves around the way I see myself - how I physically see myself when I look in the mirror. 

I look in the mirror and I don't like what I see. It's not the fact that I have an insulin pump bungee jumping from the side of my stomach, the little pin prick marks on my finger tips from testing my blood sugars, the yellow bruise from a previous cannula that I put in at a dodgy angle or yanked out in my sleep... No, what I don't like is my figure and every day I wish I looked different. 

12 years ago, at the age of 16 I was very aware of how I looked, what I wore and how quickly my body had changed. I'd started to develop lovely curves (I was finally becoming a woman!) but I soon lost them due to undiagnosed Type 1 diabetes. I lost a lot of weight in a short space of time and looked gaunt and fragile - at times I really felt like I was going to break in half. Oh the joys of undiagnosed diabetes! After my diagnosis however, my curves soon returned as I started to take insulin and become healthy again. Then, due to 10 years of being stubborn and neglecting my diabetes, failing to take my insulin and not listening to what my body wanted/needed, my weight dropped again. Following an admission it would rise to a normal range and drop again when I resumed my regime of neglect... rise, fall, rise, fall... Talk about a yo-yo diet from hell. 

Now when I look in the mirror and I'm very aware that my weight hasn't fallen for 2 years. Perhaps this is a good thing in other people's eyes (my doctors for example), but for me, my weight consumes a lot of my time. I spend far too much time trying not to think about it which, in turn, leads to me thinking about it. I'm very aware that it's something I don't like about myself and it always sits at the back of my mind, nagging away at me. The temptation to revert is often strong. Sadly, every time I eat I need to think, in quite a lot of detail, about food; the carbohydrate content, the fat content (which always leads me to the calorie content), the portion size, the last time I ate, the next time I plan to eat, if I'll burn any of it off with exercise, if I'm going to be less active and burning very little off etc etc. I do feel that this constant flow of information contributes to some quite negative feelings about my weight because I'm so aware of what I'm putting into my body and the affect it may have. 

On the other hand though, is this necessarily a bad thing? Surely being aware of what's going into my body is a good thing? In recent months, since studying bits and pieces about nutrition, I've learnt huge amounts about what my body needs in order to function and repair itself when necessary, so why does food still instil some fear into me? At the back of my mind I feel that it may be due to the way that diabetes is portrayed, the stereotype that is projected to the public with such negative connotations, but my honest answer is that I just don't know. I suppose that's the point to this blog - my diabetes has impacted on me in a way that I can't understand, that my HCPs don't seem to understand, and there isn't (as far as I can tell) a text book answer. 

I suppose there's no other way to end this other than saying that, yeah... my life isn't as sweet as it sometimes seems. 



Ninjabetic x 


Friday, 6 June 2014

as I count my lucky scars...



A few months ago I was cleaning out my car (which meant I was ridding it of random test strips and scattered jelly babies that had melted onto the fluffy floor) and I came across my favourite Foo Fighters album ‘Echoes, Silence, Patience and Grace’. This album has been played on almost every car journey since my find with my favourite track ‘But Honestly’ on repeat.


“…And tonight I thank the stars, as I count my lucky scars, for everything you've given me…” 


I have lots of scars, some from silly accidents (mostly cooking related), but the majority of my scars are diabetes related. I don’t notice the scars on my arms any more, probably because I’m so used to them, but I don’t think they’ll ever fade completely. When I was going through my ‘I don’t need insulin’ phase, and had blood sugars higher than a giraffe on redbull, I used to have a horrible rash on my arms. For around 10 years people in the diabetes clinic looked at it, wrote a few notes and said a few words that meant absolutely nothing to me, but they didn't ever diagnose anything. As soon as I started getting my blood sugars under control the rash vanished, leaving behind some scars. Perhaps a good reminder for me not to go back to the dark side of diabetes.

Moving in a little, I have a lovely square shaped scar on my stomach that’s almost faded. This one’s from my 1st CGM (continuous glucose monitor) which, when taking off the adhesive dressing that was holding it in place, took a chunk of skin with it. This really annoyed me at the time as I didn't want such blatant reminders of what diabetes leaves behind, but now it’s just another scar. Another story to tell. And then comes the insulin pump dot to dot game. Taking out my cannulas always leaves a little mark behind, and sometimes those marks don’t fade.

That brings me back to the lyrics above. I’ve never been someone who likes to look flawless, I’ve always been a tomboy – trying to be an action hero like Black Widow who can stand alongside the guys and give as good as she gets. In turn, having scars doesn’t bother me in the slightest, especially my diabetes scars. Each one tells a story, each one makes me a bigger person and I think each one makes me stronger. I think diabetes has definitely left its mark(s), and I glad it has.


Ninjabetic x  




Tuesday, 13 May 2014

Dear Media



Dear media


One day I'm this, one day I'm that,
One day I see you calling me fat.
But what do you know about my condition
What do you know about life on this mission.

Do you see me lying awake at night,
Tears run down my face as I keep trying to fight.   
Do you see me inject, prick my fingers and more,
Do you care about this side, my side of the war.

You sensationalise, you provoke, you speak without care,
You pass judgement on an illness that I have to bear.
You know not of what it's like to live in a body that's broken,
You take words, you twist them and say they've been spoken.

I can't speak for others, this is how I've felt,
I've struggled in silence from the cold blows you've dealt.
I've read and I've listen to misinformation,
When you've had a voice, a voice to educate the nation.

An icon, an image, an unattainable figure, 
You showcase them all, but that causes a trigger.
And what about me, what do you portray,
What you think I should be, what you think I should weigh.

To you I'm a story and a stereotype,
Bad news sells and you thrive on the hype.
The sad fact of it is, you do more harm than good,
If only you listened, cared and understood.

What effort would it take to not make that mistake,
Then when I see those words, I won't feel my heart break.
Your words, they cut through me, straight to the core,
But I stay strong, I have to, I've been here before.

Look at my scars, look closely and you'll see,
They lie on the surface and deep within me.
The big smile, the brave face, I say that I'm fine,
But inside I'm hurting, because of your lie.

Dear media, please help, please give us the choice,
We'll show you the facts, the decisions, the voice.
Dear media, please help, please make the change,
Diabetes is serious, so respect us, not fame.


Ninjabetic



Monday, 12 May 2014

Change the World - One starfish at a time



For a long time I've been doubting myself in what I've achieved in life.

I've just started out in my career after years of uncertainty and reluctance to settle down in one place for too long. I'm not married, I don't have any children and don't own a house. I have very little commitment in my life... apart from helping people with diabetes. Since I was young I've seen marriage, children and money as markers of success, markers that would mean I had achieved something substantial - something to be proud of. For a long time I felt that I'd achieved nothing.

Two weeks ago, a friend from twitter sent me a blog. The blog was about a man who was walking along a beach after a storm - the beach was littered with starfish that would soon be dried up by the sun. The man saw a young boy who was also walking along the beach and was picking up the starfish one by one and throwing them back into the sea. The man said to the boy that he would not be able to make a difference as there were thousands of starfish scattered along the beach. The boy picked up another starfish, threw it back into the sea and replied that he had made a difference to that one.



In the past few months I've been talking on and offline to a number of people who have been newly diagnosed with diabetes - people who are afraid, confused, angry and scared. One by one I think (and hope) that I've slowly helped to make a positive difference, even if it's only the smallest difference.

If I can change a small part of one persons world then surely that's an achievement... It's taken me a while to realise that, actually, I have achieved things that many people haven't and combined with so many others that do the same every day we are constantly changing people's worlds. 

So let's keep changing the world, one starfish at a time.




Ninjabetic x



This blog was written for Diabetes Blog Week - You can find more information about this and the blog topics here.

Read the full Starfish story: One step towards changing the world, here

Guest Blog by Becky Reeve - Change the World

The following is a guest blog for #DBlogWeek written by Becky Reeve, Head of Professional Relations, sanofi diabetes.
Disclaimer: These are my own views & opinions and not necessarily those of my employer. I do not have diabetes nor do I care for anyone with diabetes. I am though, very passionate about the following:
Ensuring that the general population understand that T1 diabetes and T2 diabetes are different.
Ensuring that people with diabetes get access to the right care, the right treatment and from the right healthcare professional when they need it.
Ensuring that people with diabetes and the healthcare community that support pwd (people with diabetes have access to the right information to enable choice and individualised treatment.
In my role working for a pharmaceutical company that also cares passionately about diabetes I feel that I can use my role to positively influence the above. I am also very passionate about the benefit social media and in particular twitter, brings to the diabetes community. I use my role and the interactions I have with diabetes healthcare professionals to positively influence their thoughts around social media in the hope that I can convince them enough of its benefits so that they can signpost their patients to it.
What would I like to change? 
The way the pharmaceutical companies are viewed and often portrayed by the media & others. There are a lot of people in Pharma who care passionately about what they do and the people who receive their drugs, the research that is undertaken into providing new treatments and innovations and the treatments that are prescribed and then sold into the healthcare system. We are commercial organisations but large percentages of profits are massively re invested back into further research & development, and often into programs & projects that directly support the NHS, patients and carers. When I started in this role my first action was for sanofi diabetes to become JDRF's corporate partner in the UK. As you all know JDRFs vision is to provide a cure for T1 diabetes, which I believe is only a matter of time & money. By supporting this directly through our partnership I sincerely hope it will lead to a cure one day -which even us in Pharma want too........