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 

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. 

Where's your support network?

There are few things in this world that we can do entirely alone. As children, we needed help to learn to ride a bike, we needed someone to teach us learn to swim. Growing up, we needed the help of teachers and professors, to pass academic exams. We no doubt needed help in our first jobs, someone to guide us in the right direction. Someone to show us the ropes, and to point out where we went wrong.

Living with diabetes is no exception, yet many people often feel like they have to go through it alone. Maybe because they don't know anyone else who has the condition. Maybe because they feel like a 'burden' on their loved ones. Maybe they even feel guilty for having diabetes, and don't feel anyone else should have to put up with it, too.

This is very far from the truth, and very far from the expectations. Diabetes is a condition that doesn't yet have a cure. Until the day that we have a cure, we have to live with the condition. There are no 'holidays' from it, we cannot postpone the condition from ourselves. There is no escape.

There are no doubt times when we wish we could run from diabetes. Lock it in Room 101 and carry on as normal. Diabetes is the cause of so many cases of depression and anxiety, and of course, that could then have a knock-on effect with diabetes, itself.

When we feel like this, it is easy to want to lock away not just the diabetes, but lock ourselves away, from the rest of the world. To some people, this is a coping mechanism. They may need time to think. However, what about those who do this because they feel they have no one to help them get through this?

Diabetes UK has a number of branches when it comes to support networks. This is something they pride themselves on. and rightly so:

Careline: Dedicated helpline for people with diabetes, their parents, partners, friends, colleagues. The helpline is staffed by trained counsellors, who are there to answer ANY questions you have relating to diabetes. Very useful if you have a quick question, or if you need someone to just listen to you.

Local support groups: These have been running for many years, and give support to those with diabetes, on a much more local and personal level. Some groups focus on providing support, some look at ways to raise money for Diabetes UK. Many groups have guest speakers, covering a range of topics. Find your local group.

Diabetes Peer Support Volunteers: This is all about talking to someone who knows first hand what it's like to live with diabetes. They might not be healthcare professionals, but they CAN share their experiences, and help you to work out your issues.

There is a wealth of information out there, in the local community, and within the diabetes online community. As peer support volunteers, we really want to find a way to support YOU. Who do you talk to about your diabetes? Do you have someone you can talk to? Let us know, and let us listen to YOU. Because no matter what anyone thinks, it's all about YOU.

Making the best of a bad situation

Living with diabetes can at times be very difficult. There may be times when someone who has diabetes, feels that life is very unfair, and that they don't deserve to have the condition. There are so many things that need to be thought about, every day, of every week, of every month of the year. Living with diabetes is almost like having a full time job, except without the added bonuses - there are no pay rises or annual leave with diabetes!

For anyone living with a chronic condition, such as diabetes, it is not uncommon to also suffer from periods of depression and anxiety. Diabetes can feel like it is taking over your life, overwhelmingly so. So many people have periods of depression, which can in essence, make diabetes management even more of a struggle. It is a vicious circle, difficult to escape from.

So what can someone who feels like there is no way out of this deep black hole, do? Feelings of despair when it comes to diabetes management won't disappear overnight. It can takes weeks, months, even years to feel truly happy with yourself and your diabetes. Despite this, there is a lot that can be done to make the journey easier and shorter.

If you are at the point where diabetes has taken over your life, take a minute to think. Think about all the things that you are entitled to, have access to, and can do, because you have diabetes. It sounds almost ridiculous, but there really are ways in which people with diabetes, can make the most of a bad situation.

Regular health check ups. Diabetes UK promotes the 15 basic health checks that anyone with diabetes should receive from their health care team. These checks include blood pressure, blood glucose levels, cholesterol, eyes, feet & legs, kidney function, weight. You are also entitled to support if you are a smoker, or are planning a pregnancy. You should also be offered an education course to help you understand and manage your diabetes. Speak to your health care team about the 15 essential health checks. If there is something you are not getting, you are entitled to the checks and support.

A healthy lifestyle. People with diabetes have to closely monitor their blood glucose levels. This means that in general, they are more likely to be looking at what they are eating and assessing how much exercise they are doing. If this is on the conscience, then it is probable that the person will be making an effort to take care of themselves.

Fashion statements. When all is going wrong, and diabetes isn't playing ball, think about the things that make you who you are. Many people wear medical ID jewellry, to ensure that if they are found unwell, people would know that they had diabetes. There are a lot of different types of medical ID jewellry nowadays. Gone are the days where your only option was wearing a dog tag or gold bangle.

A quick search in Google also brings up hundreds of images of people with medical ID in the form of tattoos. This is yet another way in which people choose to use their diabetes in a positive light. Not only this, but they can also look good whilst doing so!

Free prescriptions. Certainly in the UK, if you have diabetes, you will not have to pay for medical prescriptions. This includes prescriptions for diabetes-related medication, or any other illness. Imagine how much money would be spent every month, if we had to pay for all our insulin and testing strips as a bare minimum!

Free eye tests. It can not be said enough, how important it is to take care of your eyes. Aside from the retinal screening that anyone with diabetes, is entitled to, it is also important to have a regular eye test. Diabetes can eventually lead to a condition called Diabetic Retinopathy. However, regular eye tests can spot the early signs of the condition, meaning you can take action, before it becomes a problem.

Exit passes at theme parks, for children with diabetes. It sounds too good to be true! Places like Thorpe Park and Alton Towers have an 'exit pass' for children with diabetes. This means that they are able to miss the queues for a ride. This is because for a child, going to a theme park is very exciting. Excitement can lead to either a hypo or a hyper. If hyper, then a trip to the loo is normally needed, so they would likely lose their place in the queue. If the child is hypo, they need to treat and wait 15 minutes, which you can't do in a queue. Obviously, this would need to be clarified with the venue, and a letter from a GP may be required. However, it is an incentive to see diabetes in a more positive light.

These are just a few examples of how it is possible to 'make lemonade from lemons'. When someone feels overwhelmed by their diabetes, it can feel like nothing else matters. Trying to make the best of a bad situation, is just one way of trying to make the journey out of that black hole, a bit easier.

Finally, Gladys Knight & the Pips believe in making the best of a bad situation...

Introduction and Welcome

No matter what Type you have, or how long ago you were diagnosed, living with diabetes can be difficult – overwhelmingly so at times.

The support of those people closest to you (both family and friends) is important in helping you through those times when things seem out of control.  However, sometimes it can be difficult to open up about how you feel (or how diabetes is making you feel) because you’re scared that people won’t understand.

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.

This blog offers you Peer Support – the chance to talk to someone with first hand experience of living with diabetes without fear of embarrassment or misunderstanding.  You can e-mail in questions you’ve always wanted to ask or write in with a problem you’ve been facing and we’ll post a response here on the blog.  We won’t reveal your name at any point.  We aren't experts, but we do have a wealth of experience in living with and dealing with diabetes so we're equipped to handle any questions you may have.

We hope that this allows you another outlet for you to talk about your diabetes and that by answering your questions or helping with your problems, we can also reach other people who may be feeling the same way.  You can also connect with us on Twitter or Facebook, and in some circumstances, we offer support via telephone.

If you want to talk to us then please contact us using one of the methods below:

E-mail:  andydiabetespsn@gmail.com or louisepeersupport@live.com

Twitter: @loupeersupport or @andypeersupport

Facebook: https://www.facebook.com/groups/southeastdiabetes/ or https://www.facebook.com/pages/Diabetes-Peer-Support-Sheffield/534756433284902

This blog is part of a Peer Support project being run by Diabetes UK.  We can’t provide medical advice but do offer you the opportunity to talk about your problems and ask questions – we’ll offer up our own experiences in return. This is run on a volunteer basis and all volunteers have been through training run by Diabetes UK.