Wednesday, 16 October 2013

Tightrope Walking

I'm just back from my annual review and felt compelled to write a just-for-me blog for the first time in a long time.  What follows is pretty much a "stream of consciousness" affair (though I'll be scanning it to make sure it makes sense).  It might feel like a mish-mash of previous blogs I've written, so for any regular viewers out there, apologies in advance.  By the end, I'll hopefully have done a decent job at articulating my inner voice.

Thanks for reading.

In the last couple of years, I've started to look forward to my annual review rather than dread it in the same way a school boy who's forgotten his homework again.

Gone are the days where I'd spend hours thinking up excuses for why my weight, blood pressure, HbA1c and any other measure you care to mention were all going in the wrong direction.  Now I'm in a place where I feel educated enough to spend one of my bi-annual 15 minute slots, discussing my diabetes, any of my problems or concerns and feeling like part of a conversation instead of a lecture.  This is, of course, a good thing.

However, what I can't seem to shake is that feeling of despondency as I trudge through a maze of hospital corridors out into the rain and back to my car.

Once upon a time, I'd leave feeling guilt ridden and angry at myself.  It got to a point where a consultant pulled out a graph and said "If you don't change what you're doing, this [pointing at said graph] is when your kidneys will start failing".  I wondered what the point was.  Why was anyone wasting their time on me if I couldn't be bothered to look after myself?

Now it's a different story.  Today I left feeling frustrated because I was convinced I'd finally cracked it and that it'd be a bit of a chat, usual questions and checks and I'd be on my way.  Not so.  Today my consultant (who is without doubt, bloody wonderful), looked at the download from my BG meter and gave that intake of breath through clenched teeth that consultants do and said "look at all these low readings.  I'm worried you'll lose your hypo awareness".

Now before I continue to wallow in my hole of momentary self pity, I will say that, of course, she's right.  That is a concern, and losing my hypo awareness is one of my biggest diabetes fears.  Basically anything you can prefix with "losing" scares me.

Back to my hole... living with diabetes is tough.  Not some of the time - ALL of the time.  I've had it 12 years and it still kicks my ass.  I guess my consultant has a privileged view in some sense as she can look at 3 months worth of data and see the patterns quite easily.  I write my BG levels down but I've got a bit lazy at looking for patterns I suppose.

The thing is, high numbers worry me.  I know that a lot of high numbers will start to eat away at me and if I can't make them go away I'll feel like I can't look after myself and I'll give up.  I've done it before and it didn't work out well.  I'm always more likely to go slightly over on my insulin calculations to err on the side of caution because I know it's less likely to lead to a high reading later on.  I'd rather have a low reading than a high one (to which my consultant nodded along sympathetically).

I've previously likened having diabetes to walking on a tightrope.  Managing it needs a lot of skill and concentration and you need to consider what you're doing all the time.  If you lose focus you start to wobble and if you wobble too much you'll lose control completely.

It's easy to cry "no fair" but life isn't fair and I'm not 13 years old any more so I'm not taking that option.  I'll keep doing what I've always done - live and learn.  There's no silver bullet to make any of these problems go away and so I'll refine my own care and keep working at understanding how my body reacts to this enigmatic disease.  As I've said before, diabetes isn't who I am, it's just one small part of me.  Sometimes it needs more attention than others but if I'll carry on working to keep the disruption to a minimum.

Friday, 11 October 2013

Mental Strength

This blog was first posted on the Diabetes UK blog site

When discussing diabetes, it can be quite easy to revert to familiar topics depending on who you speak to. Talking to other people with diabetes can lead to trading war stories about particularly unpleasant hypos or serious hospital stays as well as what type of therapy they use to manage their condition. Talking to people who don't have first hand experience of diabetes can turn into a discussion about being type-aware or explaining (for what may feel like the millionth time) that yes, you can have a biscuit/chocolate/piece of cake without needing serious medical attention.

What doesn't get possibly as much discussion are the mental aspects of having diabetes. I'm by no means an expert but I think it's important to make time to give these 'hidden' aspects as much consideration as other factors.

I think it can be quite easy to bypass how you feel about having diabetes because living with it becomes such a normal part of your day, you don't necessarily stop to think about it.

What prompted me to consider this quite recently was the set of forms I received as part of my REPOSE 6 month follow up. The premise is quite simple - you're faced with a number of statements and asked to score them on a scale of 1-5 based on your experiences over the last 4 weeks (e.g. very likely to very unlikely, extremely important to totally unimportant etc.)

That sort of process in itself isn't anything new, but what it does offer is a chance to reflect on those moments when you might have felt sad, angry or frustrated and not consciously understood the reason why.

Some of the questions are quite generic and deal with how you rate your quality of life overall, how you feel on a daily basis and so on. Others ask you to consider how living with the specifics of diabetes affects your relationships with the people around you and your day to day activities or future ambitions.

Whilst I wouldn't dream to speak definitively for anyone else, I'm sure that at some point, many people with diabetes have experienced some sense of anger or frustration that relates to their condition and I know I certainly have. What I don't tend to do is reflect on those feelings and either rationalise them or find someone who can help me with them.

If I were to ask you how much you feel burdened about having to think about your nutrition or how frustrating you find the fact that others don't understand your treatment, you might not give them too much thought. Hopefully for the vast majority of people, such things really aren't factors in your day to day life. However, for some people, struggling through on new regime of insulin therapy or coming to terms with a recent diagnosis can leave them feeling stranded and alone.

Whether you've been diabetic for 12 weeks for 12 years, you're bound to go through difficult times at some stage and but it's being able to manage them that is important.

My lowest point came after about seven years after my diagnosis (I'll have been a fully paid up member of the T1 club for 12 years in October). I got to a point where testing my BG and seeing constantly high numbers would make me feel depressed so I stopped testing regularly. I don't mean that I'd test once a day, I'd be lucky if I tested once a week. As a result my HbA1c rose steadily and I was going to 6 monthly hospital reviews armed with more and more constructive excuses and promises that things would be different next time. I'd be economical with the truth with my family because I felt ashamed I wasn't looking after myself when really I didn't want to admit that I either felt too exhausted to do it, or I couldn't remember how. This continued for about 18 months before I eventually came clean and with the help of my wonderful wife, I started to get things back on track.

I'm incredibly lucky that I have a very supportive family and a great relationship with my specialist team that helps me through the tougher times. There's also a lot of other support out there in various other guises. The Diabetes UK Peer Support Scheme is designed to put you in touch with someone to talk to about living with diabetes, whether you live with it yourself, or look after someone who does. There's also a growing online community of people with diabetes who can listen and help you.

Filling in my 6 monthly review forms has been a cathartic experience and a reminder that whilst things might feel good today, I've also experienced some serious low points and managed to come through them relatively unscathed.   If I'd had to fill in the same forms a few weeks after getting my insulin pump, I know for a fact that the answers to some questions would have been markedly different but being able to reach out for support to the right people at the right time has made me stronger.

Diabetes Week

This blog was first posted on the Diabetes UK blog site as part of Diabetes Week

It's already well documented that living with diabetes can be a frustrating and challenging experience.  I remember thinking when I was diagnosed with Type 1 in 2001 that it was so fundamentally life changing that I wasn't sure I'd ever be able to cope with it.

One of my first thoughts was of a boy who went to my primary school who had diabetes as that was probably my only exposure to someone who lived with the condition.  I remembered that had carried a vial of insulin and a large hypodermic needle around with him all the time.  That memory convinced me I was doomed, that I'd never be able to manage.

Being here 12 years later to write this blog isn't a tribute to my own incredible ability to overcome the impossible, but a real testament to the power of research into treating diabetes and improving the lives of millions of people.

Recently I became involved in a clinical trial called REPOSE (or The Relative Effectiveness of Pumps over MDI and Structured Education for Type-1 diabetes).  The aim of the study is to determine whether an insulin pump provides additional benefit to people with Type 1 diabetes versus Multiple Daily Injections.   All participants, regardless of the treatment type they are assigned, also complete a DAFNE course to ensure that structured education is provided.

Whilst a recent report showed that the UK is lagging behind the rest of Europe and the US in terms of insulin pump usage in treating Type 1 diabetes, there have been no trials in adults that compare how well patient fare between MDI and pump therapy when combined with structured education.  It's important that research like this is carried out to be able to

Annual Review

This blog was first posted on the Diabetes UK blog site

The date of my Annual Review being marked on the calendar has, in the past, struck fear into me on more than one occasion.  I've previously likened it to some sort of 'confession', and I've spent time preparing my excuses for the results that are inevitably not within target.

It wasn't uncommon for me to 'blame' a variety of things for why I'd not quite got round to an improved HbA1c or lost a few pounds.  A new job, moving house, my daughter being born or just "being really busy at work" all got used at one point or another.

I went through a significant period of time where testing my BG was as a rare occurrence and unsurprisingly, my overall control suffered quite badly as a result.  I used to frantically try and cram months of eating right and testing my BG regularly into a week before my clinic appointment.  I'm sure you can guess how well that worked out. 

The thing is, in actual fact, I think that in all bar one or two of my annual/six-month reviews over the last 12 years, my consultants (and specialist team in general) have always been great with me.  They were sympathetic, ready to listen and helpful in a way that didn't feel like I was being lectured.

I guess at the time, I never really appreciated why that was.  I took it to mean that they just generally understood that it was a bit tough sometimes (especially when you're younger) and that they knew I was trying.  To a degree I think a lot of that was true, but really, in hindsight, it was because there is only so much they can do.  The ultimate responsibility lies with me as I'm the only one with any power to change anything.

Of course, any annual review or clinic appointment wouldn't be complete without a sometimes baffling array of numbers, some of which make perfect sense to you, some of which don't.  I don't know how it works in other places, but in Sheffield, I get an A4 summary of my results that includes a 12 month rolling period so I can see how well (or not) I'm doing.

As I've got older I've started to pay more attention to the figures beyond my HbA1c, particularly my blood pressure and my cholesterol.  At one point I was close to being diagnosed with high blood pressure as every clinic appointment showed some high numbers.  I got given a BP monitor to wear for 24 hours which showed that it was only high when I was at clinic - I'm not sure if that's a common problem for some people but it was good to find out it was just clinic that kept putting me on edge!

I know that getting older means that it'll get a little more difficult to keep all the numbers closer to target and that I'll have to work a little harder to do so.  But I know what I need to do and sometimes that's half the battle.

The important thing is to make sure you don't struggle on by yourself if it ever feels overwhelming.  There are so many different ways to get the support you need, including talking to your specialist team, calling the Diabetes UK Careline or engaging with one of the several online communities dedicated to helping people with diabetes.  Being able to talk to someone about how you feel when you have diabetes shouldn't just be a 6 monthly occurrence.

Thankfully my most recent appointment was one where I felt I could talk about my successes over the last few months rather than having to invent yet another excuse.  Hopefully that's also the case for the majority of you too.