The true power of peer support

Sometimes, we all need a little support. Even the strongest of us may come to a point in their life where something just can not be fixed, on their own.

As a peer support volunteer, I devote my time to listening to people talk about their worries, and offering them the guidance and reassurance that they are looking for. I have always been more of a listener than a talker, perhaps that's why I love what I do for Diabetes UK. 

Recently however, I admitted to myself that I am the one that needs a little support and guidance, to keep me going. I published a post on my blog and within half an hour of it going online, I had a phenomenal response. Within an hour of my posting on the blog, I had friends reassuring me that they were there for me, that they wished I wasn't in this position, and suggesting resources for me to look at, to get myself out of this deep hole. 

As they say, a problem shared is a problem halved. If you're having a tough time, please please please don't bottle it up. Talk to someone. Anyone. Tal to your dog, if you like! Drop me a line, I'm more than happy to lend an ear.

Email: louisepeersupport@live.com

Twitter: @Loupeersupport

Asking for help

It's not always easy to admit you need help. People who ask for help have in the past been seen as weak, or giving up. This really isn't the case. Despite the numerous campaigns to encourage people to open up, many people simply can not.

For me personally, realising I needed to ask for help came about 3 months ago. It can take time, but I truly believe that with the right support, you can feel better.

But of course, people can't know how to help, if they don't know that you need that help, in the first place.

People are very different in how they handle things that are thrown at them. Some people are quite comfortable in asking for help. They know who to turn to, they know how they're going to get that help, and they have a rigid plan of what they will do to overcome whatever it is they are facing.

Some people are very different. For example, some people decide that turning a blind eye is the best course of action. Sleeping for longer, avoiding social situations, heck even taking up extreme sports, so they don't have to think about their troubles!

Regardless of how easy it is to ask for help, the important thing is that the help is there when it is eventually needed. So from a diabetes point of view, giving access to local diabetes nurses, consultants and care teams, is a big 'must'. There are other sources of help too - websites, local groups, blogs and the diabetes online community (Twitter and Facebook especially).

To those who say asking for help is a sign of weakness, when was the last time you asked for help? Asking for help is showing strength. Asking for help is acknowledging there are issues that need to be addressed - be it physical, emotional or psychological. Those who ask for help should be given credit for doing so. Rather than shying away and allowing the problem to get worse.

People who have had diabetes for months or years may feel like they shouldn't have to ask for help. This isn't true. Diabetes isn't an easy condition to live with and sugar levels can change at whatever time in your life, for whatever reason. There is never a time that people can't ask for help with their diabetes, or anything, even.

When it comes to your health, there are two options - turn a blind eye and see what happens. Or ask for help from your local diabetes team, other people with diabetes, etc, and see how you can overcome this, together.

If you do want to talk to someone about your diabetes, feel free to drop a line to louisepeersupport@live.com .

Reimagining Peer Support

I’ve had a few interesting conversations about Peer Support this week and it’s really got me thinking about what this is really all about.

At the start, the aim was to try and use volunteers like Louise and I to undertake some training and then go about creating a network of people who could meet up and provide support to each other for managing diabetes.

It’s not necessarily turned out that way but so far I think it’s been successful in terms of seeing what works well and how it can be improved to more fit the needs of people with diabetes.

Where it’s been most difficult is trying to get a group of people together socially.  I think that’s mostly down to trying to find a date, time and venue that’s actually convenient for people and then managing those unforeseen circumstances that can prevent people from attending.  I don’t necessarily think that’s a Peer Support specific thing, though perhaps it’s made a little more difficult trying to co-ordinate people you don’t know too well.

Where I think it has worked well is building more of an online community and allowing more casual interactions with people who are looking for advice on something specific, as well as looking for someone to talk to when things are getting on top of them.  Hopefully having that outlet is beneficial for people.

What all this has lead me to is a bit of a reimagining of what Peer Support could look like and how it perhaps integrates with other services that are beneficial to people with diabetes.

As you may know, the National Institute for Health and Care Excellence (NICE) have Care Pathways which are basically a set of agreed standards for how people with a particular condition (in this case, diabetes) should be treated.  If you want to investigate the diabetes care pathways, you can do so on the NICE website.

I’ve often thought about a similar “support pathway” and how various voluntary services (like Peer Support) can be used to help patients with long term conditions.   My recent conversations have made me look again at what is available to people (and what should be available) and I think that will help clarify the role of Peer Support.

In Sheffield we have a Diabetes UK Group that run monthly meetings where people can get together and socialise before listening to a speaker who talks about a specific aspect of diabetes.  It occurred to me that instead of trying to create a separate network of people with Peer Support, that by building up individual relationships and then encouraging people to attend an already established group, this may be more beneficial.

By contrast, there’s currently no family/children group in the city (though that’s hopefully a work in progress) so for young adults moving from paediatric care to adult care there’s no real support provision.  As I’m sure many people will attest to, becoming wholly responsible for your own care is a big thing and rightly needs support.

It’s examples such as this and perhaps students coming to the city to go to university that I think really shows the need for Peer Support and the possible benefits it can have on people with diabetes.

It’s not always easy to engage younger adults in the importance of their care, or in getting them to admit to needing support.  It’s often a busy time of life and many people (myself included when I was younger) don’t like to admit that managing their health is difficult and that reaching out to either another individual or a group can be a huge step.  But I think the benefits are there for all to see and that means groups and individuals have to do a better job at selling those benefits and engaging with those who need support the most.

I think the future of Peer Support in Sheffield will be focused on engaging with individuals proactively (which has proven successful so far) and talking to those who seek out the service.  I think by cultivating those relationships and getting those who want more support to engage with a local group will be beneficial and hopefully mean they will be able to speak positively about their experiences and advocate it for others.

Support isn’t a “one size fits all” thing.  Tailoring any approach has to be individual and not everyone will be comfortable being part of a group, or having ongoing individual contact.  For others, being part of a group will be a huge eye opener about the wealth of information that’s out there.  As with clinical care, support has to be right for individuals and hopefully that can continue with a fresh approach in 2015.

Remember, if you do want to talk to someone about diabetes, whether it’s just for tips on managing hypos, help on managing a new diagnosis, or support with managing the condition after a number of years, you can get in touch and talk confidentially.  Look for @AndyPeerSupport on Twitter, e-mail andydiabetespsn@gmail.com or search “Diabetes Peer Support Sheffield” on Facebook.

Help Yourself

Part of being supported is knowing how to help yourself sometimes.  As we all know, diabetes is a largely self managed condition, where I'd wager most of us get to spend maybe an hour or two with a professional over the course of an entire year.

How do we make sure we get the best out of that fleeting time we spend with Healthcare Professionals (HCPs)?

I think there's a couple of simple things we can all do to make those appointments more productive.

Firstly, in the days or weeks leading up to them, write down a list of questions you want to ask or make a note of anything that's been troubling you about your diabetes.  Remember that this doesn't have to be limited to just high or low blood glucose levels.  Diabetes is as much about psychological and emotional support as it is physical or medical help.

You can read a good blog about asking for help on Ninjabetic's blog.  

The second thing we can all do is demand the care we are entitled to.  The National Diabetes Audit published last week gave some startling revelations about the standard of care for people with diabetes, particularly highlighting the lower standard of care given to adults under 40.

Whilst the National Institute for Health and Care Excellence recommends 9 key care processes everyone with diabetes should be given, Diabetes UK goes further, covering 15 things.  You can find that list on the DUK website.

Make sure you know what you want to talk to your HCP about and don't be afraid to demand that standard of care you should be receiving.  It's not always easy but it will definitely help you in both the long and short term.

As always, if you want to talk to someone about diabetes, whether something's worrying you or you just want some advice, you can contact us through the blog, via Twitter (@AndyPeerSupport) or by e-mailing andydiabetespsn@gmail.com.  Everything remains completely confidential.

The Diabetes Rollercoaster

I've probably heard the words 'diabetes' and 'rollercoaster' being used in the same sentence a hundred times, possibly more.Thinking about my own personal experience since I was diagnosed with diabetes, I'd probably agree with anyone who claimed diabetes was a rollercoaster. 

From the moment of diagnosis, adjusting to the body's requirements, right through to learning to live a 'normal' life, there is constantly a battle to beat the lows, and keep the high's going. Anyone who lives with diabetes deserves a medal, from this perspective. But why does diabetes come with the rollercoaster of feelings, as well?

Some days will be good days. Waking up with a decent blood sugar reading, being able to calculate the right medication. No high readings and no horrible hypos. What a great day these are.

But then some days will be bad days. For some reason or other, you might wake up with a high reading, or you might catch a mid-morning hypo. How inconvenient, I always think. Especially if you're stuck in a meeting and no end is in sight! Halfway through a meeting the other day, I was convinced I must have had a reading in the mid-teens - I was falling asleep, I felt grumpy and I couldn't concentrate. After the meeting finished, I checked my sugar levels and I was a perfect 7. Perhaps what I had felt were just the symptoms of an incredibly boring meeting, in that case!

There might be times when you can pinpoint why your meter tells you you're a certain level. You might have forgotten about that small glass of fruit juice at breakfast, or you may have not had the time to have a mid-morning snack. Remembering though, can bring you a solution.

However, what about the times that you can't work out why your sugar levels are particularly high or low? The lack of control may well leave you wanting to bang your head against the wall in frustration. It might make you want to rebel against your diabetes. 

Whatever it makes you feel, diabetes shouldn't make you feel like it is controlling you and your life. Sometimes, we could perhaps take our sugar level readings with a pinch of salt (not sugar), accept the reading and look at how to fix it. Of course, this is easier said than done.

Diabetes has no right to make you feel the way it sometimes makes us feel. So, once you've taken a correction dose, or had a hypo treatment, remind yourself how incredible you are for living with diabetes, and say hi to everyone else who is probably feeling the same way as you. You're not alone.

Feel free to drop a line if diabetes is getting you down. Bottling up how we feel can do more harm than good. 

Signing out, Louise

louisepeersupport@live.com 

You never forget your first

There are a lot of things we learn to live with as a result of having diabetes.  Hypos are just one of many things that we people with diabetes have to face.

 

I remember when I was diagnosed that the specialist nurse I saw at the time tried to explain to me what it would feel like when I had a hypo.  (There’s no “if” in these cases – you’re bound to have a hypo eventually).  I don’t remember how she described it at the time, although in fairness I was too busy trying to work out how to carry all the stuff I’d been given and desperately trying to remember what doses of insulin I needed to take.

 

What I do vividly remember is having my first hypo.

 

I was working in a pub kitchen when that feeling we’re all familiar with started to wash over me.  I could feel my heart pounding and my hands were starting to shake.  I remember feeling quite disoriented – it was as if thinking had become something to concentrate on rather than being a reflex action.  I think the best analogy you can give someone who isn’t diabetic is that it’s like being in an induced state of panic.  I’m not sure it’s possible to convey to someone who doesn’t get hypos how it actually feels.  Of course your close friends and family will learn the signs and can see what it looks like (reports of me being grumpy in such situations are wide of the mark), but you can’t articulate the way it feels.

 

I’d been given a number to call the first time I went low so that a nurse could make sure I was OK.  I remember stepping outside and making that call, trying to explain what was happening as if I was the first person that this had ever happened to.  Of course that’s not true, but when it’s happening to you for the first time, you’re convinced that you’re the only person in the world that feels that way.

 

Of course the nurse talked me through what I needed to do.  I’m fairly sure I actually carried proper Dextrose tablets back then so having had a couple of those and a sit down I felt ready to go back to work.  The added bonus of working in a kitchen meant a free sandwich was fairly easy to come by.

 

There are so many hurdles we have to jump with this condition and whilst they get easier with time, the first time you go over one, it feels like a mountain.

 

Remember that you’re not on your own with your diabetes – there are a lot of people out there who understand what you’re going through and will help if you need it.  You can always contact us as peer supporters and we’ll help in whatever way possible.

 

Until next time, take care

 

Andy

@AndyPeerSupport

The hassle of eating out

If you're anything like me, the suggestion that my friends and I go to a restaurant, to catch up, is often an event that I dread. I have two groups of friends; in one group there are fellow people with diabetes. In the other group, I am the only one with diabetes and no one else in the group has any experience of the condition. 

With the two groups, eating out is a very different experience. When I'm with my friends who have diabetes, we spend much of the evening discussing what we're going to eat, how many carbs are in our meals, what it'll do to our sugar levels, and how much insulin we're going to inject. A recent experience makes me laugh when I think back to it. The 3 of us always go to Nando's when we're together and we all generally order the same thing.

The last time we met, was no different. Having ordered our food, grabbed our drinks and picked up our cutlery, we all checked our blood sugar levels, so we could decide how much insulin we were each going to inject. My meter told me I was 6.8. Not bad, considering we were having a late lunch. My two friends simultaneously checked their levels. We must have looked a little odd, staring at our three meters. However, my two friends were also 6.8. What were the chances?! 

Even though our levels were the same, and we were eating very similar meals, we all injected different does of insulin. I need very little insulin, whereas one of my friends is particularly resistant to insulin, and so has to inject higher doses.

In comparison, eating out with my other friends, who don't have diabetes, is very different, and sometimes relatively more stressful. When I'm with my diabetes-friends, we tend to go to the same restaurant. If we do go to a new restaurant, we all have mobile apps, and are able to discuss the possible carb content of the meals. This way, we can all try to work out how much insulin we need to inject.

With my other friends, it is stressful and difficult for me, at times. No one likes to go to the same place every time, it's fun to discover new places. Before I was diagnosed with diabetes, and before I had IBS, I loved trying new foods. Unlike my sister who would probably stick to chicken nuggets and chips, if she could...

I have to admit, I do get anxious if I know I'm going out to eat with my friends, especially if I've never been there before. What am I going to eat that won't upset my stomach? What food can I eat that won't have masses of hidden sugars? Should I inject before my meal or after? What if we don't eat until late? So many things that my friends don't have to think about. It is sometimes frustrating that I'm the only one in my group who has to worry about these things.

To try to give myself a break, and try to enjoy my meal at a restaurant, I like to know where I'm going, beforehand. That way, I can look online at the restaurant's menu and try to weight out my options. I've also given the restaurant a call on occasion to see if they cater for gluten free. Luckily, most places do put their menus online, and this saves me a lot of time and worrying. Other things that I can do, include using my phone. Some restaurants have their own mobile apps, which contains their menu, and even some nutritional information. 

My favourite apps are for the Harvester, Nando's and Giraffe. I've even heard a rumour that Pizza Express and Dominoes also have useful apps. I'll certainly have to look into that...Another option is 'MyFitnessPal'. Although it is generally for tracking fitness and diet, it has a very comprehensive database of foods, both home made and restaurant brands. For each listing, full nutritional information is available. This has helped me out particularly when I've been to Indian restaurants. 

I'm not trying to make you all hungry from boasting about all these restaurants. Eating out when you have diabetes is always a challenge. It makes me nervous, it makes many other people nervous, too. However, that doesn't mean that we have to miss out. If you are worried about what you're going to be eat, you could look at the healthy options. These will generally be lower in fat, sugar and salt. You could also ask the restaurant staff for more information about specific meals. 

The greatest tip we can offer to people with diabetes, is to be prepared. Knowing what you're going to eat, takes away a major worry that many people have when eating out. Also making sure you know what your sugar levels are, will help you. If you are eating late, or the restaurant is busy, you may find your sugar levels drop. Having some quick-acting carbs (dextrose tablets, orange juice for example) will save you from a hypo in the restaurant.

If you do need any tips on the best foods to eat, what to avoid, or want to know if you're on the right line, when it comes to restaurant foods, please do feel free to comment, or drop a line at louisepeersupport@live.com.