Head. Brick wall. Banging.

“My job is ok, it’s the people who aren’t”. After 5 years of working where I am, I can finally put into words how I feel. I don’t have the most exciting job – I’m a marketing girl in the fire industry. This marketing girl very quickly became a fire safety geek; probably to the extent that wherever I am, I’ll be checking the place has a clearly marked fire exit, and the exit signs comply to the standards…sorry, if you’ve experienced this.

This isn’t a blog post about how much I love/hate my job. It isn’t a blog post to bitch. It isn’t a blog post to prove fire safety is far more interesting than you realise (actually, it isn’t). This is a blog post to question why someone living with any sort of mental health issue, has to put up with the ignorance of those who have no idea what it’s like to have said mental health issues. I know, and I hope you know, that it’s not something we should have to put up with, ever. Sadly, I’m sure you know as well as I do, that there will always be one person who makes us want to frantically bang our head against the wall, until we knock the ignorant thoughts out of them.

“I have no patience for people with depression” That remark right there made my blood boil, today. I’ve lived with depression on and off for the past 7/8 years. I’ve managed to block out a lot of the hurtful comments, the ‘cheer up, it might never happen’, or the ‘people who have depression are just so miserable’. The majority of the time, these comments make me chuckle and feel pity for them – they obviously don’t understand what it’s like to live with depression/anxiety/OCD etc. They don’t understand what champions we are. They don’t know how difficult it is to keep up the mask of normality. They don’t understand that every day can be a struggle, just to get out of bed and go to work.

Of course, we can’t blame someone simply for not understanding a particular circumstance. Not at all. What I think is disgusting and unacceptable, is the assumptions they make, without the knowledge or experience. It’s not fair on those living with whatever.

Today though, that comment made me feel physically sick. Sick with anger. Sick with frustration. Sick with being stuck with this discrimination and stigma. I didn’t ask to have depression, and I doubt there was anything I could do to have prevented it. No one asks for depression/anxiety/OCD/whatever mental health issue you are affected by. Much like, no one asks for a physical health problem. Suffer with migraines? I bet you didn’t ask to have one. Suffer with stomach ulcers? I’m pretty sure you don’t like them!

The more time I spend writing this post, the more I want to stamp out the stigma and discrimination of mental health. No one should be made to feel inferior because they have depression. No one should be made to feel stupid, if they have anxiety or OCD. No one should feel like they have to hide their issues.

And yet, that’s what I’ve done for the past 5 years. No one at work has a clue that I have depression. To them, I’m just quiet and probably boring and miserable a lot. To me, every day is a challenge. If I start a conversation with someone at work, I will have been planning that conversation all day. I will have had butterflies in my stomach, in the build up to talking.

So why do it? Because depression is seen as a weakness. In my workplace, the only time mental health is discussed, is when someone is being mocked. Mocked for admitting they have a mental health issue. Mocked for ‘drawing attention’ to themselves. Little do they know that little Lou is sitting there mind her own business, wondering how she’s going to make it through the day without wanting to break down in tears, because of this horrible work environment.

If I were a different person, I would have throttled the person who said they have no time for people with depression. She may have no patience for people with depression, I have no time for ignorance and arrogance. How I wish I could have said this aloud.  I guess though, this person must feel cheated that she’s had to talk to someone like me for 5 years. Do I care? of course not!

 

Anxiety

Anxiety. A thing that so many people experience in their own way, but a thing that so few actually understand. In rough terms, anxiety is the word used to describe feelings of unease, worry or fear. Mind has a great outline of what it is, what the different symptoms are, and what can be done to try to combat it…

…Except, it isn’t always that easy, is it? When the room is spinning, you feel like the walls are closing in and you feel like the world is simply passing you by, how easy is it to tell yourself that you’re ‘just anxious’ and this feeling will go? Unless you know what it is like to go through the torture of a panic attack, it’s very difficult to understand just how horrid anxiety is.

Em lives with anxiety. Or rather, anxiety pushed it’s way into Em’s life. Everyone’s experiences of mental health issues are completely different but Em gives an insight into what it’s like living with anxiety. Kudos to her for fighting this battle…

I’d like to start with bragging that on January 16th 2016 we welcomed a little baby kitten to the family; Jasper and he is positively adorable and perfect. Bragging over, a small positive anecdote as an excuse; he has been the biggest help for my anxiety and I honestly don’t know where my mind would be if it weren’t for him.

Anxiety. Anxiety. Anxiety. It’s a word that’s been around for years. Many people interpret it in many different ways. Me? I like to sum it up in one word: hell. This is a personal topic which I’ve never really addressed like this before. Writing in a journal is very cathartic but I can’t always write about it quick enough so here goes nothing. If there are people out there with anxiety who feel they are alone, trust me, you are not alone…if you need further proof, I’d recommend watching Youtuber Zoella’s video about it.

It took me a while to recognise I needed help but looking back, it was the best thing I ever did. I’ll admit even now, I have bad days, where anxiety is constantly looming over me and some days, I don’t have the strength to push it away so I embrace it; I spend a day in bed doing nothing because now I know, these days will pass and it will get better.

I reached a particularly bad time at the end of 2015. I was constantly worrying about the health of family throughout the year but once I knew they were fine, it was like all my walls came crumbling down; the anxiety and number of panic attacks increased. I’ve always been a worrier, even from a young age. I didn’t complete the 11+ test because of how much of a wreck I was during my Year 2 SATs (don’t even get me started on this topic…that’s a story for another time).

The panic attacks are new; my first one was during V Festival in August 2014. I was by the barriers and had been all day and Ed Sheeran had just gone on stage which I was waiting for all day. It started when I looked up at the screens. I became increasingly aware just how many people there were and could not find an immediate exit path. I came over feeling very unwell, my legs started to wobble and I just felt floppy, my ears felt tinny and I couldn’t stand. I was lifted over the barrier and as soon as I touched the ground, I was fine. I thought it was a one off. It wasn’t.

The next panic attack I remember; I was shopping with two of my friends and were queueing in Costa Coffee in town. I felt hot and cramped and was relieved when we left. I was focusing on a shop’s sign and the world began to go fuzzy; it sounded like I was in a tin can and the next thing I knew, I opened my eyes to see my friends and a couple who were helping me up. I felt absolutely fine. When I got home, my blood pressure and blood sugar levels were fine; I had no further symptoms.

I started noticing my panic attacks are brought on when I was in a sensory overloaded crowded place. I become aware of things more and I’m suddenly in the eye of a hurricane of words and there’s no escape. I go on autopilot and just flow with the crowd. Then comes the hyperventilating. Oh, not to mention the sudden chronic shooting pain in both ears which is new. That’s usually the start of them now. When I’m out of the situation and can hear reassurance, I feel fine. I’ve lost count of how many panic attacks I’ve had now; I’ve had one at Frankie and Benny’s, in Debenhams and walking out of Wembley stadium. All crowded places. Then, it became increasingly difficult to know what the triggers were. I would just suddenly feel anxious, then my stomach would get tighter and tighter and I would start hyperventilating, the ground shaking and the room spinning.

So I went to the GP; he advised I attend the Stress and Mood Management course through Therapy For You on the NHS. This was unbelievably helpful. My 1:1 Cognitive Behavioural Therapy soon began. I hated it. I began feeling more anxious on the days I was due to attend than I did on any other day of the week; the counsellor wasn’t listening to what I was saying and then I had to go into work late. During this time, I had gone from thinking I had to get up soon to rushing back home because there were no desks available at work. I wish “What If” questions were tangible, then I could bury them far away. I stopped my 1:1 sessions after three weeks because I could not take anymore. The SMM course is still the main resource I am using to cope with my anxiety, as well as medication of course.

Anxiety can strike at any moment but can seem bearable with the right support around you. Getting that support can sometimes prove difficult. In every workplace, there is a trained first aider but they are trained to provide first aid with physical issues; a cut finger, a bumped head or a fall down the stairs. This is all well and good but what about when someone has a panic attack? When I have experience panic attacks at work, I have to help myself. I have had someone sit opposite me not knowing what to do and I have also been told “there’s no need to cry”….I know there is no need to but I cannot help it…but you wouldn’t know that. My counsellor asked why I take myself out of the office when I have a panic attack and they couldn’t understand it but when you’re in a full office with very few having an understanding of anxiety, you don’t want to be the person sitting there causing a scene. Why? Oh because you have social anxiety of course.

First aid training is brilliant and I cannot fault it but I can’t help but wonder why there is no training on how to deal with someone suffering from mental health issues. Staff with depression are told to “cheer up”; staff with anxiety are told “don’t worry” and staff suffering from panic attacks are told to “calm down”. This is not right but how would they know; education surrounding mental health is limited. Schools encourage achievements in the academic subjects; English, maths and science. That’s all great but when exactly do we need to use Pythagoras’s Theorem to find the missing length of a side of a triangle? What about developing an understanding of why that “lazy” student is falling asleep in class? Or why that “crazy” lady is shouting in town? The stigma of mental health issues has decreased with the help of education but there should not be a stigma in the first place. Like there’s no stigma on a child with a broken arm. Just because someone with mental health issues isn’t being sick or doesn’t have a rash, it doesn’t mean they don’t go home every night just wanting to crawl into bed and not move until their alarm goes off the next morning.

Before you tell someone to “cheer up”, think. Everyone is fighting a battle you know nothing about.

Diabetes Blog Week: Day Five

Let’s round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There’s always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.)

Man, this was a tough cookie! Tips and tricks to handle my diabetes, do I have any? I guess if there was one tip I could give, it would be about how to approach the mentality of diabetes. When I was diagnosed with diabetes in 2011, it wasn’t that much of a shock. My dad has diabetes, and his dad had it, too. I didn’t have too much of a lifestyle change – my family ate healthily, I exercised (ok not a lot, but I still went to Zumba once a week), I’ve never been a huge drinker, and I was conscious of my general wellbeing.

The one thing that I wasn’t prepared for, was the thoughts that would go through my mind 24/7. Every little thing I did, affected how I felt. Diabetes is tiring, intense and doesn’t give you a break. Before I received any formal education for my diabetes management, I didn’t really know how to go about my diabetes. I tried to follow my dad’s approach, by not eating anything I shouldn’t, and eating every 3 hours. This worked for my dad, so it should work for me, right?

Except, it was difficult to stop thinking about that lovely little chocolate bar. And it was difficult to eat every 3 hours, when my IBS flared up. It was particularly horrible, as I forced myself to eat, even when my stomach was bad. Diabetes was making me miserable.

As I’ve said before, the DAFNE course completely changed my attitude toward diabetes. It taught me to relax, but not neglect my diabetes. It taught me that everything is ok, in moderation. Most importantly, it taught me to pay attention to my diabetes, for me. Not for my DSN or consultant, not for my family or friends.

Revert back to when you were a teenager for a minute. How many times did your parents nag you to tidy your bedroom? Did the nagging make you want to tidy it? No. Did your teacher nagging about your homework make you do it any faster or with more enthusiasm? I’m going to bet it didn’t.

I feel just like this, with my diabetes. I’ll be honest. Nagging me to count the carbs when I’m ravenous, isn’t going to make me thank you. It’s going to make me grumpy for holding me back from my food. Nagging about the impending 9pm basal injection is going to fill me with anxiety, if you nag enough.

Let’s flip things. If I’m counting the carbs to see the patterns in my sugar levels, I’m going to be intrigued. I’m going to want to calculate my meal’s carbs. If I’m injecting at 9am and 9pm, I’m doing it because I want to see my sugar levels

remain steady. Not to sound rude, but I’m doing this for ME. Not YOU. I’m doing it for my diabetes.
I’ve found this attitude has helped me stay interested in my diabetes, interested in what certain foods are doing to my sugar levels, how far I’ve dropped etc. I like to stay in touch with my diabetes, when it’s not seen as a chore.

Do it for you, not anyone else around you; not even your DSN or consultant! Your diabetes is YOUR’S for life, so look after it because you want to look after yourself.

Diabetes Blog Week: Day Four

Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

Living in the UK, I consider myself to be very lucky. The NHS is something that we are entitled to over here, and means that we can receive the right treatment, without having to worry about whether we can afford it.

Since the day I was born, I have been seen by so many different nurses, doctors, specialists, for all sorts of reasons. I dread to think of the stress I caused my mum and dad, growing up! All in all, I do feel I have been very lucky, in my experiences with my healthcare team. They’re doing a great job at keeping me alive!

When I was first diagnosed with diabetes in September 2011, my DSN went way beyond her duty, to help me. I was not used to someone going to so much effort to find out what was wrong, whether there were links between my diabetes and other healthcare issues, and to make sure I was seeing the right people. If I didn’t have Jacqui as my first DSN, I think I’d have a very different view of the NHS. I am ever grateful for the hard work that she put into making my diabetes as less a burden as possible.

That was then and this is now. I love the fact that GP’s, consultants, nurses, the lot, are starting to take part in the diabetes online community. I think it shows how keen they are to see how a person with diabetes, lives their life, on a day to basis; not just how they are in their 6 monthly check up.

Looking at the care I’ve received as an individual, I’ve had some of the best and some of the worst. With the worst, I threw it out the window and changed GP surgeries. It was the best decision I could have made. My new GP asks me how my diabetes is, no matter why I’ve come to see him. The surgery contacts me to remind me about my feet check, my HBA1c and my flu jab. All this, in comparison to being made to seem an inconvenience by my old surgery, for asking for these things.

If there was a Medical Genie, I would ask for one thing, and one thing only. I would wish to have more time with my diabetes nurse and consultant. It’s been two years since I saw the consultant, I don’t even know his name. I last saw my DSN more often and for longer. I see my DSN once every 6 months, and for 10 minutes. I check my levels 5 times a day, every day. I deal with the highs and I deal with the lows. I approach the DOC to try to overcome obstacles. I get sad and frustrated by my diabetes, a lot. I know I’m not the only one. When my DSN asks me how I’ve been getting on, then, how do I put 6 months’ worth of diabetes tales, into 10 minutes?

Diabetes Blog Week: Day Three

There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.

Let’s face it, girls are bitches. Growing up, the things girls said to me hurt. They hurt a lot. Equally, the lack of words also hurt. It was only when I reached the 20 year milestone that I really stopped caring about the things people say. I don’t care that I’m not ‘cool’ or ‘popular’. I don’t care if you think I’m sad for staying in, knitting. It’s a hobby and I’m not doing it to entertain you.

When it comes to diabetes, I think I take the same stance. A lot of people don’t like being called ‘diabetic’. To me though, it is just a way to describe my poor excuse of a pancreas. I know Diabetes UK has a lot of guidelines surrounding the use of certain words to describing a person with diabetes. And hey, I’m all for adhering to those guidelines.

You can pretty much call me what you like, and I will answer. I answer to Louise, Lou, LouLou, bitch, dimlow (apparently a term of affection). I won’t correct you if you call me diabetic. I don’t mind, I just appreciate you taking the time to talk to an odd girl like me.

BUT. And this is a big but. Please don’t refer to my diabetes as an illness or a disease. Diabetes is a long term condition, to which I have had to adjust. Sure, I have bad days where my sugar levels are too high or too low and leave me feeling rubbish. Diabetes is the cause of multiple symptoms and there is a long list of possible complications, but I truly believe that it is not a disease, in any way. Disease has negative connotations. Why would I call the thing that has introduced me to some wonderful people, a disease? It’s a blessing in disguise, if anything!

Sticks and stones may break my bones, but my broken pancreas won’t disappear!

Diabetes Blog Week: The Other Half of Diabetes

We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk?

Psychology is a big thing for me. I’ll openly tell you on here that I have struggled on and off for the past 8 years. I’m a worrier. I’m an anxious one. I can’t help it, it’s who I am. So, yay for today’s theme!

Diabetes is an invisible condition. Broken your leg? You’ll need a cast around that. Come down with chicken pox? I bet those spots are itchy! Been diagnosed with diabetes? Oh, but you look ok…When I was first diagnosed with diabetes, I had people telling me I shouldn’t be diabetic, I’m not fat. I shouldn’t be diabetic, I’m young. Blah blah blah, I’m sure we’ve heard all the stereotypes.

So yes, diabetes is an invisible condition. You can’t tell I have it, except the tattoo on my wrist. But what about the other ‘invisible’ side to the condition –the psychological effects? Diabetes is a lonely condition. Apart from my dad and my grandad, it wasn’t until I did the DAFNE course 2 years after being diagnosed with diabetes, that I met someone who knew what I was going through.

Up until then, I had no idea that it’s totally normal to feel like a failure, because you’re meter tells you you’re 16. I didn’t know it was normal and acceptable to feel like you’re going to be miserable for the rest of your life, because you don’t have hypo awareness. No one told me it was normal to have days where you just didn’t want to have diabetes.

As I got more and more engrossed in the diabetes online community, I realised that it’s ok to not be ok. It’s ok to feel like you’re being punished for something you didn’t do. I didn’t ask to have diabetes, so why me?! It’s ok to want to eat something that isn’t low-carb and low sugar. Guess what? Even with diabetes, we’re allowed the odd treat! In your face, diabetes – I will have the occasional chocolate bar, if I want it!

Most of the time, I feel like I can keep on top of my diabetes and how it affects my mentality. Most of the time. So, those days that diabetes becomes that bully in the playground, and makes me want to hide from the world, and just cry? That’s ok. It’s ok to not be ok. I’ve had plenty of these days. If you have diabetes, you probably already know the effect stress has on the body’s sugar levels. It causes HAVOC.

When I do feel like my diabetes is taking control of me, I find it so comforting just to read the blogs of other people like me. It’s nice to know I’m not the only one out there, who wants to put diabetes in Room 101.

Diabetes Blog Week: Message Monday

Message Monday: Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? 

I think my blog started back in August 2013, after doing the DAFNE course with my local diabetes care team. Up until that point, I only knew of my dad and my grandad, who also had diabetes. However, they were diagnosed as type 2. They have lived with it for years. Indeed, they have very different approaches to diabetes, than the one I had. And wow, that was a lonely place to be.

Over the years, I’d kept numerous half-hearted blogs about all sorts of things. Needless to say, each blog was forgotten and abandoned within a month of being started. So what was different about my diabetes blog? Diabetes is a 24/7 job. There are no holidays, no pay rises or promotions. Until they find a cure, I’m stuck with this condition. Like most people, I did a quick search on Google, and was horrified by the long list of crap that according to numerous sites, I’m going to end up with, because I have diabetes.

Pfft. I’m 28, I don’t want to think about that stuff, right now! I manage my diabetes pretty well, I have a decent support network, should I need it. What I didn’t have back in 2013 however, was the knowledge that there were other people like me, lost in the diabetes world, wanting to talk to other people about their experiences. And thus www.alwaystimefortea.net was born.

Those who read my blog, will know that I don’t just write about diabetes. Life happens. And I write about life. However, the one thing that remains the same in each blog post, is that there is probably someone reading my post, who can say “yeah, I know what you mean”. I love that feeling.

I spend hours reading other people’s blogs. I love hearing about their experiences of diabetes. Because at the end of the day, although diabetes is not a ‘one size fits all’, we are ALL living with a condition that has an effect on every aspect of our lives, every day of the year.

Through the hundreds of blogs, Twitter accounts and Facebook groups, we have helped to build this diabetes online community. And boy, am I grateful. No matter the time of day, there is always someone to talk to about my diabetes, if I’m feeling a bit overwhelmed. If I’m feeling like my family (as wonderful as they are) can’t help, just because they don’t have the condition, I can turn to Twitter. I can turn to #dblog, #doc #gbdoc and instantly be graced with hundreds of diabetes related tweets and links to blogs.

Through my blog, I want to share my experiences with the online community. I want to show others that they are not going through this alone. When diabetes gives me crap, I know that the online community can help me give it back, three times as hard!