Saturday, 23 June 2012

The emotional rollercoaster



Everyone has had one of those days or weeks where they feel that nothing is going their way, that what they do just isn't enough and they feel like giving up. We all go through it and the majority of the time we look back and say "what was all the fuss about"?

When we can see that a friend or colleague is having a tough time we do what we can to support them and make their life that little bit easier. We asses the situation and think of the solution.

How would you feel if that tough time or bad day was on repeat, maybe not all of the time, but enough that it starts to have an effect on your health? How would you feel if you had been diagnosed with a chronic condition which would alter your life and at times become overwhelming? How would you feel if you had no one to turn to and the only option was to cope on your own? Most people reading this will be able to relate in some way, whether they have diabetes or care for someone who does. At some point support will be needed, but it needs to be available.

When it comes to diabetes, support can be a tricky area to discuss. Sometimes it can be difficult to admit that emotional support is needed. Maybe it isn't clear that it's avaliable. We may require more help than what has been offered. We may worry that we are becoming a burden on our HCPs or feel that we are letting ourselves down by accepting help.

When my consultant and I started discussing the idea of ninjabetic, I obviously thought that it would be great. But I also thought, why hasn't this been offered before? If support has not been offered to me, then how many other people are missing out on it? Or had I just fallen through the system and become lost on the list? Have other people been craving support like I was, but haven't received it for whatever reason?

On Tuesday night, after a day of battling with my blood sugars and a stomach bug, I was about to give up and go to bed when my inbox pinged. The first thing I noticed was the name, someone who I knew but we hadn't spoken for over a year. Then next to it in the subject box - 'can I be a ninjabetic too'. The email was from one of my consultant's patients telling me that she had been diagnosed at 16 as well, and that she had learnt a lot from my blogs. I sent one back to say thanks and that we had actually met a few times before, but I wasn't a ninjabetic at the time. She replied saying that she did remember me and she had no idea that I had diabetes. She also said that she feels more in the 'diabetic loop' now, which did make me smile!

So we had hung out before, chatted and had mutual friends but neither of us knew that the other had diabetes. We go to the same hospital, have the same consultant, live in the same area but had been introduced in completely different circumstances. I've found myself wondering if things may have been different for me if I had been introduced someone else who had diabetes in my earlier years, or if I'd had emotional support offered to me.

Don't get me wrong, my consultant's nurse's and dietitian's are great (most people know how much I rate them), and there is only so much they can do when they see a patient twice a year for a check up. But when they see that a patient is avoiding appointments, hasn't had a blood test in years and has non-compliant practically stamped on their forehead, shouldn't alarm bells start ringing? If GPs can see that blood sugars are unstable, prescriptions for insulin and test strips aren't being ordered for months and infections are becoming more frequant, why aren't conversations taking place as to why this is happening?

Then again, maybe they are taking place? But what can HCPs do if they can't recruit the essential help which not only us, but they are crying out for? They must be as frustrated as we are at the lack of psychological support available to us, yet our frustrations still aren't being recognised. I realise that yet again what we are lacking in our care is down to money, but in the long run surely this would be an investment?

I only started to take care of myself and my diabetes this time last year when complications set in. I don't blame anyone but myself for what has happened to me, but I can't help but think, what if?
I would hate for other people to get to the stage where they have made my mistakes and are thinking the same. There are so many ways in which this can be prevented and we all know that the benefits will be huge! If people are given the correct emotional support combined with education and the correct treatment then there is no reason for us not to self manage our diabetes, to save HCPs time, to save money on hospital admissions and to become role models for those who are starting out with their diabetes.

It would be fantastic to have a professional who can give us the time we need, to help us make sense of what is happening, to give our parents and siblings support as well and to listen and offer advice to get us through the tough times.

Peer support is also essential, at any age and any stage throughout diabetes. It costs nothing (I have demanded an ipad from my consultant, but he flat out refuses), and it can be so motivating and inspiring. I don't think that I would have gotten as far as I have without the people who I speak to every day via social media. But also when I met other people with diabetes at Diabetes UK last month, I realised what I had been missing out on. I got on the train to go home and I felt really down, but I didn't know why. Throughout the whole day I had been soaking up the experience of being with those people and suddenly my mood had flipped. But then I realised it was because I didn't want to say goodbye to them. I wanted to put them in my pocket and take them all home with me because I needed their company, not all of the time, but occasionally. Having support on the internet is amazing, but having a face to talk to, seeing someone nodding because they understand, that would really help too.

Yesterday I asked this question on twitter; "Were you offered counselling when diagnosed with diabetes? Have you been offered it since? Did or would it help with your diabetes?"

24 people replied to this question and out of the 24, only 1 person had been offered emotional support. I spoke to people with diabetes and parents and every single one of them said that it has been needed in the past, is needed now and they feel that it will lead to huge improvements in care and management if it is delivered. We are clearly aware of what we need and as we all know, there is strength in numbers. Patient power can go such a long way if you work with HCPs, who can in turn go to the higher powers, the one's who can make this happen, and say "this is what our patients want need and deserve".

Diabetes is not just about the illness, but the person. Diabetes is not a hospital number, it is not a twice yearly appointment, it is not a name on a clipboard at the foot of a hospital bed, it's a part of us for every second of the day and we control it. If we are supplied with what we need, then we can control it well. If we aren't then people may be left wondering....what if?



Ninjabetic x 
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