Monday, 31 October 2016

GUEST POST: JARED A CARNIE - FREE COPIES OF WAVES

Photo: Fox Moon Photography

Guest Post by Jared Carnie


Hello there!

I’ll keep this brief - I know you’ve got better things to do with your time. You’ve got to fit in rewatching all of Gilmore Girls before the new ones get here.

Here’s the deal:

  1. I’ve written a book. It’s called Waves
  2. Books cost money
  3. Money is irritatingly hard to get. Especially if you’re chronically ill
  4. I want anyone who might want to read Waves to be able to
  5. I will send you a copy of Waves if you would like one

That’s it really, if you would like a copy of Waves, send me an email at jaredacarnie@gmail.com and I’ll see what I can do.

If you’re anything like me, the prospect of sending a blind email to someone you don’t know, particularly to request something, is utterly terrifying. But I promise that this post isn’t aimed at someone else, it is aimed at you. If you want a copy, I want to give you a copy, so please do email me.

Just be sure to include your postal address. If you don’t know what else to say, don’t worry about it, don’t say anything, just send me your address, I won’t think it’s rude.

Or if you prefer reading on kindle, let me know in the email, and I might be able to work that out. I can’t promise anything though. I am an idiot when it comes to that kind of stuff. And most things.

That’s it really.

Have a nice day.

More Jared:
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Sunday, 11 September 2016

GETTING OVER MY FEAR OF BUSINESS PITCHING




All things Startup and Business are entirely new to me. As I've tried to get my business, BearHugs, off the ground it's been a steep learning curve. At times, it's felt like learning an whole new language. So when it's come to pitching my business to people who undoubtedly have a much better grasp than I do, I've been incredibly nervous.

I'm not a natural public speaker. Having all eyes on me is my least favourite thing in the world and just the thought of it brings on palpitations. The very first time I attempted a business pitch at an event hosted by Huddersfield University, I was mortified to completely freeze mid-sentence about BearHugs and forget everything I wanted to say. As I stood there on shaky legs, utterly exhausted with a blank mind, I wanted the ground to swallow me up whole. I just about managed to mutter 'I guess it's me who needs a hug' before retreating to the loos in tears. As I had a good old cry, I convinced myself that that was it, I would never attempt it again.

Then I had the fantastic opportunity of taking part in the University of Sheffield's Evolve Startup Showcase competition. I learned that I was finalist and of course was filled with excitement. This was immediately followed by dread at the realisation that I'd have to get back on stage. I argued it out wth myself though and in the end decided that my love for BearHugs one hundred percent won out over my fear of speaking.

I bought myself 'Talk Like TED' in the desperate hope that the book would somehow be a miraculous cure for my crippling fear. The absolute best thing I took from it was a chapter about Amanda Palmer who spoke about 'The Art of Asking". It explained that, despite giving one of the most popular TED Talks ever, she too was terrified beforehand about public speaking. To overcome this, she obsessively practised.  I decided to give this tactic a go myself.

I forced myself to talk through my presentation out loud over and over again in front of anyone who would listen. I've always found performing for people I actually know far more terrifying than performing for strangers so this process was quite an ordeal. Gradually though, I did become desensitised and it was comforting to be so familiar with the content that I could practically do it in my sleep.

When it came to the actual day of the event, I was amazed to find that when I got on stage the fear was there but nowhere near as crippling as it had been before. When I realised that I was almost half way through, a huge wave of relief hit me as I knew it was going to be ok. I wouldn't go so far as to say I enjoyed it but it felt amazing that it was manageable.

To manage to speak reasonably confidently about my business with hundreds of eyes on me was one of my biggest personal achievements to date. To then later find out that I'd won the competition absolutely blew me away.

I wanted to write this post so that in the future, when the nerves inevitably creep up on me again, I can look back it and remember that I've done it once so I can do it again. I suppose it's also nice to think that if anyone sharing the same fear reads it, they might see that if I, the scared-est of them all, could do it they definitely can too.

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INSPIRED BY... JARED A. CARNIE

jared a carnie waves interview



This interview is with Jared A. Carnie. I live with him so could actually ask him these questions privately. With his debut novel, Waves, coming out this week though I thought I'd take the opportunity to show him off here instead.

Jared would be uncomfortable if I listed all the reasons I think he is great so I will just say that I am more proud of him than I could ever put into words. He has been consistently and selflessly supportive of me over the last few years and I am so happy to have the opportunity to return the favour a little.

I'm definitely biased but Waves is my favourite book in the whole world. There's information at the bottom of this post about where you can find it.

_______________________________________________________________________

What's the book about?


Mainly I think it’s about fear. It’s not necessarily a plot-driven book so I always feel like I’m misleading people by describing the plot. I’ll try though, because I feel that if I don’t you’ll be mad at me.

The main character is in a long-term relationship with his high school girlfriend. She goes off to university to study medicine. He stays with his Mum and waits for his girlfriend to finish her degree so they can be together. Before she finishes her degree, she decides to break up with him. He is crushed. He had been building the whole idea of his life around that relationship and now it’s gone. He is totally lost.

His best friend decides to take him up to the Outer Hebrides to get him out of his rut. He then experiences a bunch of things that only the Outer Hebrides can offer, and tries to sort his head out a bit.

What inspired the book?


There were a few different elements. First of all, I feel like, at pretty much any age, but especially in your twenties, people are told that they must know exactly how they want their life to be and build towards it. They’re not really afforded the opportunity to make mistakes or to feel their way around for a bit. I wanted to write something about that pressure and how devastating it can be when you lose something you were counting on, even if it wasn’t necessarily something very healthy.

Secondly, a big inspiration was the Isle of Lewis itself. There was not a moment in the two years that I lived there where I took for granted what a strange and brilliant place it is. I definitely wanted to capture that.

Thirdly, I wanted to write something where the main character tried to find his way out of a depressing situation in a healthy way. I quit drinking a good few years ago and kind of had to find a new identity when I did so. I wanted to write a book that did the same thing. One that didn’t focus on the tropes that a lot of my favourite books do - he’s not going to drink his way through despair, he’s not going to fall into drugs or crazy sex, the main female character isn’t going to fall in love with him in order to save him. I wanted something someone could read and maybe leave feeling a spark of excitement.


What are you proudest of about the book?


I hope that the writing style, which I’ve put more effort into than it probably appears, allows people to read the book with little difficulty at all. My hope is that this means people can easily absorb the book, and that hopefully, if anyone can take anything from the book, it might be something positive.


How do you feel about the idea of people reviewing the book?


I’m a neurotic mess of a person and this is something I struggle with the idea of. It’s not that I’ll take it personally if people dislike the book - I’m perfectly ok with that. I can see there’s a lot of things about the book certain readers won’t necessarily be a fan of. My issue is more that I think my brain sometimes reacts unhealthily to the idea of people analysing or assessing me. It’s the same reason my mental health improved tremendously once I got rid of Facebook.

I also know it’s definitely something I worry disproportionately about. It’s not as if it’s going to get a great number of inescapable reviews. You know, when it’s out I’m not going to see a copy of The Times with IDIOT JARED WRITES IDIOT BOOK on the front cover. The reviews will mainly be on Amazon or places like that, from people who were kind enough to give the book a chance. And I’m very grateful to anyone who chooses to read the book, and respect anyone who takes the time to write a review of a book, good or bad, because from what I’m told that’s a vital part of the process of how books get out there.

I’ve also read a huge number of terrible reviews of things that I believe are objectively fantastic, so I’m pretty comfortable with the idea of not taking a review to heart.

So basically, in short, I think the message I’m meant to be putting out there is, please do leave a review of the book, especially if you enjoyed it, as things like that really do help other people discover the book. And I promise to try my best to keep my resulting emotional turmoil as internal as possible.


What advice would you give to people who want to write a book?


This is the sort of question you tend to see two types of answers to. People either offer romantic expressions that don’t really mean anything, stuff like, it’s in your soul, man, just let it flow out of you. Or the other kind. The advice that’s almost aggressively smug in how unromantic it is. Stuff like, always wake up at 6am, write 2000 words a day, only drink this sort of coffee, make sure X event happens on page X, never use adverbs, never tell anyone what you’re writing, editing is cutting out 20% of what you’ve written etc etc.

I probably lean 10% more to the romantic side of things, but am also well aware that that is often the recipe for some utterly terrible writing too. I’ll try to come up with an answer that isn’t too much one thing or the other. I’d also like to make it clear I think I’m in absolutely no position to be giving any advice on any of this.

I guess my first bit of advice would be that pretty much all writing advice is wrong, and the most definitive writing advice you come across often comes from insecurity - people who hope if they can shout their method loud enough then it might drown out their own internal voices telling them that the way they’re doing it is wrong. So, by all means, read writing tips, try things on for size, but never feel any guilt about not doing things the way someone tells you. My second bit of advice, given everything I just said, would be that you can’t do it wrong. Everything about how you write your book should depend on what kind of writer you are and what kind of book you want to write. You can read that Stephen King book about writing and totally ignore it if it doesn’t work for you. A book is just a bit of writing with a bit more writing and then a bit more writing. The rest is up to you. Some people plan it all out meticulously and have internal structure rules they stick to and marks for when events must happen. Some people wing it and hardly proof read at all afterwards. And there are loads of examples of brilliant books coming out of both methods. Just try not to build up the idea of ‘I am writing a book’ in your mind because that will automatically come with a load of baggage. You’ll spend the whole time comparing what you’re doing to your idea of what a book should be, and it’ll never match up, because the reason you are writing your book is because it doesn’t exist anywhere else yet. At one point every bit of art you’ve ever loved was just an idea in someone’s head. And most of them managed to find their way into being without the help of a passive-aggressive listicle.


How can people get the book?


It’s available on Amazon, which I know is everyone’s preferred choice despite their questionable morals and the fact that it’s not free delivery for books under ten pounds. You can also get it direct from Urbane, which is the same price and free delivery, and supports the publisher more directly. You can order it through Waterstones too. If you’re doing that, I recommend asking to collect it in store, and when you do, loudly declaring your disgust that they didn’t have the book already stocked (unless they do, in which case don’t do that).

There’s a few other options. Foyles, WHSmith etc. I’ve got a reasonably comprehensive list on my site here.

PLACES YOU CAN FIND JARED




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Saturday, 27 August 2016

NEW BEARHUGS CHRONIC ILLNESS PROJECT

bearhugs opportunity for people with chronic illness

As you may know if you've followed this blog or read BearHugs' story, what prompted me to start my business was chronic illness.
I was originally diagnosed with ME/CFS and later found out that I have Lyme Disease. For a long time I was unable to work but I now feel very lucky to have been able to create my own job that works around my variable health. 
From the very beginning it was important to me that BearHugs wasn't just about making money. While I feel proud to now be able pay myself a wage, I feel prouder still that my business is able to give back. I love donating gift boxes to seriously ill children through Post Pals and I'm really happy to be able to support my friend Sophia with her fundraising. But I don't want to stop there.
Going forward it is important to me to be able to support others who have found themselves in situations similar to myself.

I'm currently working on a very big project which will involve offering support to people with long-term health conditions. 

I really want this project to be the best it can be and for it to offer real value to people who access it. 
I'm going to be looking for feedback about how I can make this project as useful as possible. 
I'd love for you to get involved / register your interest if....

-You're living with a long-term health condition
-You've thought about starting a small business that would work around your health
-You live in the UK

If the profile above sounds like you and you'd like to hear more about the project please pop across to 
and fill out the form at the bottom of the page.
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Thursday, 11 August 2016

THE SOPHIA BEARHUGS GIFT BOX


On a very bleak day several years ago, the postman knocked on my front door with a package.  I wasn't expecting anything so I was surprised when I saw it had my name on. I took the package back to my bed, which I'd barely been able to leave for the past month, and started to open it. I pulled out a pretty box and was intrigued to hear it rattle with things inside. On opening the box I found it was packed full of lots of little treats; each clearly specially selected with the sole purpose of making my day a little easier and brighter. Overwhelmed with gratitude, I went on to open the small card I'd found at the bottom of the box.  As I read the message inside, I burst into tears. At a time when I felt more lost and afraid than I'd ever imagined possible, someone was thinking of me. Someone really cared and they'd put together this special package just for me. When you can't leave the house very often, anything arriving through the post takes on greater significance. That package completely turned my day around and made me feel a lot less alone. 
The incredible person who sent that package was Sophia. I don't think she'll ever know how much that small act of kindness has meant. Especially now that it has gone on to inspire this my 'hug in a box' business which has been quite literally life changing for me. Her thoughtfulness and kindness brightened my day then and continues to now with every BearHug I send.

It breaks my heart to say that Sophia is currently very poorly with Lyme Disease. Despite the fact that she faces unimaginable levels of pain every day, there are no appropriate treatment options available to her in the UK.  She is now having to fundraise to access treatment in America. I'm desperate to help her however I can.
I couldn't think of a better way to do my bit than by building a BearHug in her honour. The Sophia Box is designed to match the original package Sophia sent me as closely as possible - I've tried to match every item like for like. 
Just like the package I received, the Sophia Box contains tasty treats, hand cream, lip balm and bath salts. Sophia sent me a floral notebook, so I have included the ever so pretty Liberty floral colouring book. I've also included a 'Big Hugs' coaster as Sophia's lovely words in her card felt like a big hug. 

The Sophia Box is available to order here. All profits from this gift box will go straight to Sophia's fundraising page here. This page is also where you can read more about Sophia and donate directly if you'd like to.

This post was originally published at bearhugsgifts.com

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WHAT I'VE LEARNED FROM 1000 SALES ON ETSY


I have been selling on Etsy now for almost 3 years. I have a shop for my simple pieces of silver jewellery (all profits of which go to charity) and a shop for my 'hug in a box' gift hamper business, BearHugs.

While the vast majority of my BearHugs sales now come through my own website, I do still sell on Etsy. I was very excited to realise recently that I had cumulatively made over 1000 sales through Etsy alone.

I'm not a devoted reader of Etsy forums/ discussion groups so am by no means an expert, but here are some things I've learned along the way:



Be friendlier than necessary

One of the loveliest things about selling on Etsy is the lovely people who buy from the site. Often the people who have chosen to visit Etsy are people who have actively made the decision to support small independent businesses over huge highstreet chains. I've always found being extra friendly is a nice way to say a little thank you for the choice that they've made. Sending a cheery message or a quick update on their specific order before it goes out is an easy way to give the customer added value that they may not get from big global brands.



Use all the tags on every listing

Etsy allows you to add 'tags' to every listing. This is where you can put the keyword phrases people may search for to find your items. Leaving any of these tags unused is a wasted opportunity as they can be very helpful in getting people to your shop when they search on the site. I have found that it's useful to think about what I might type into Google if I were looking for one of my specific products. The Google Keyword tool is useful to pick out keyword phrases too. I've found it's better to make the keyword phrases as niche as possible. A tag like 'silver button necklace' is going to be far more effective than just 'necklace' as it will face less 'competition' when Etsy is deciding what to display in its search results.



Pop a note in with every order

A very simple thing that customers often remark on and provide positive feedback about is when I've sent a personalised handwritten note in with their order. It only takes a minute to do but again makes the customer's experience friendlier and a lot more personal.



You can't please everyone

While reviews are important, I've found it's best not to fixate on them too much. Nothing beats a lovely review appearing on your shop page when you've worked extra hard to make the order perfect. Sometimes though reviews can be surprising- someone might have sent you a glowing private message about how happy they are but then given a 3 or 4 star rating. Everyone uses the rating system differently and I've learned to take it less personally if the star rating doesn't match the person's comments. You could have the most accurately described listing in the world with the clearest photos for the most beautiful high-quality product but still not meet the expectations of a given customer. It's best to not get too hung up on these cases. On a couple of occasions I've genuinely messed up, I've found it's always best to put my hands up when this is the case and apply the 'be friendlier than necessary' rule. Some of my nicest reviews have come from going further than necessary to resolve a problem.



Light, bright photos

The lighter and brighter and more interesting my photos have been, the more views my listings have got. I don't have a fancy camera and I'm sure my photos could be improved upon but apps like 'Afterlight', 'FaceTune' (for whitening) and 'Camera+' have helped my amateur pictures taken on an iPhone along a lot. I've also found it's best to optimise on bright days and tend to take all my photos in batches.



Keywords at the beginning of listing titles

Just as I've found putting my keyword phrases in tags to be useful, I've also found it useful to put them at the beginning of listing titles. Not only does this help Etsy direct people to your items when they search on the site but it helps the customer themselves quickly identify what it is your selling.



Surprise customers with prompt shipping

A little while ago I added a day or two to all of my delivery time estimates (other than Next Day delivery). This small change has had a really positive impact on my feedback from customers. More often than not they have been pleasantly surprised when their item arrived earlier than they expected and commented on this in their reviews. Adding a few days also accounts for any delays in the post- I've found this especially important at Christmas time.



If you can offer personalisation options / custom products, do

Turning on the 'Request Custom Order' button has been a lovely way to get to know some of my customers and make extra special items for them. I love it when someone shares the backstory to their specific request and it's extra satisfying making something one off and personal. Not only is it satisfying to put together one-off special orders but it also often results in great feedback and loyal customers who recommend you to friends or come back time and time again.

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INSPIRED BY... SOPHIA GALPIN



This post is a really special one. It's an interview with my lovely friend, Sophia Galpin. 

Sophia and I first met at university almost 8 years ago now. Although not particularly close while studying we were brought together when  ill health forced us both to give up jobs as Speech and Language Therapists. Initially we received different diagnoses but later found out that we both have Lyme Disease. Sophia has been there for me at every single up and down, virtually holding my hand from afar and cheering me on with every tiny achievement. Lyme Disease has been especially cruel to Sophia and it breaks my heart to see her in unthinkable levels of pain. Despite all the limitations it has put on her life though, she has never let it beat her. She is without doubt the most resilient person I know.  

Sophia writes the blog Spoonie Sophia, where she shares delicious gluten-free/ dairy-free/ paleo recipes, beautiful and reassuringly honest posts about chronic illness as well as accessible, informative articles to help others understand the horribly misunderstood conditions she lives with.

I could gush about how much I love Sophia all day - she is endlessly creative, incredibly thoughtful and has real integrity (no recipe will ever go up on her website until it has been tried and tested to perfection). She is one of my closest friends and I do not know what I would have done without her over the last few years. To handle pain and ill health with the grace and humility that she has, all while looking out for others at the same time is nothing short of amazing. Sophia was recently nominated for a National Diversity Award as a Positive Role Model. It's a title that could not be more fitting and I'm incredibly proud of her. 

Sophia has just started a fundraising campaign for treatment which she so desperately needs. It would mean the world to me if you could take a minute to pop across to her page to have a read and donate if you're able. If you're not able to donate, simply sharing her page could go a long way and would be hugely appreciated. You can find it here: SOPHIA'S GOFUNDME CAMPAIGN

Alternatively, I have added an extra special BearHugs gift box to my shop, all profits of which go straight to Sophia's campaign. You can read about this here: THE SOPHIA BOX

__________________________________________

Here are the answers Sophia gave to my interview questions

What are you most proud of?

I'm most proud of the fact that I've not given up and I still really enjoy life despite everything. I still get up every day and do little things (well, big things for me) even though I feel so poorly, whether that be to send an email, write something for my blog, do a little baking, or even make it out for lunch; I achieve something everyday

Who/ what do you look to for inspiration?

My spoonie pals who continue prove that so much is possible despite chronic illness - crafts, jewellery making, blogging, fundraising, raising awareness, starting a business, you name it they've done it! Everyone in our little community is so supportive and always offering words of encouragement and advice to each other even when they're not doing so well themselves.

When chronic illness feels like a bit of a cloud, what's your silver lining?

My silver lining is that I now appreciate the smallest things in life! I couldn’t be more grateful for my friends/family & boyfriend and for the tiny things that bring me joy like the sun shining on my face, watching my little dog walking alongside my wheelchair, a phone call with a friend, a handwritten card and a good cup of fruit tea! Being grateful makes me feel happy. Also if I hadn't fallen ill we probably wouldn't have gotten a dog when we did - Copper has brought me an enormous amount of joy - he’s always making me smile and laugh, even on the particularly bad days!

What would your advice be to someone who has recently fallen ill?


I’d say try not to panic about what your future holds, instead focus on the present moment and getting through each day as bets you can - you don’t know what will happen and dwelling on it brings a lot of negativity and sadness. Hold onto hope as best you can as that will keep you going no matter how dark some days are. It’s not going to be easy, and recovery will be a long slow balancing act but you have to believe you will get there! Also to seek out the spoonie community and take comfort in the fact that there are others who truly understand what you are going through.



PLACES YOU CAN FIND SOPHIA




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Tuesday, 19 July 2016

GETTING BACK OUT INTO THE WORLD



When you've had to spend a prolonged period of time within four walls, getting back out into the world comes as a bit of a shock. Over the past 18 months, I have gradually been building up the amount of time I am able to spend outside of the house and it's been the most amazing, terrifying and overwhelming thing I have ever had to do.

Before I fell ill, I was extremely independent. If I wanted to do something, I would very rarely look to other people before getting started. I'd hop in my car and drive with little concern if I didn't know exactly where I was going. I could leave the house in the morning and not think about when I might be back again.

When my health deteriorated this was no longer an option. I never knew when I would next feel so overwhelmingly unwell that I needed to get back to my bed immediately. Leaving the house started to feel like someone was turning up the volume and brightness levels to the point where my head might explode. Every noise hacked at my brain and smells that I would have thought nothing of previously left me feeling so nauseous I could barely speak for fear of being sick. I had worked with a lot of children with Autism in the past, but never truly understood what sensory overload could feel like.  To have that kind of heightened sensitivity to the world is beyond exhausting.

At my very poorliest, a trip to the doctors would wipe me out for weeks and it would be a long while before I attempted another trip out again. Very gradually though the time between outings started to reduce and eventually I started trying solo trips.

Adjusting to being in the world on my own again has been a surreal and frightening experience that I never could have understood before I found myself in this situation. I decided on the very first trip I attempted on my own that I wanted to share what it felt like.

Over a year ago now, I made my first independent visit to the Waterstones cafe in Sheffield. I got in a taxi and made terrible small talk with the driver while the vibrations of the car made me feel like  my body was crumbling on the inside. Shaking, I then walked the 20 or so metres from the car to the entrance to Waterstones. I walked through the shop (which was thankfully very quiet) to the back where I would get in the lift to the first floor cafe. I pressed the button, waited and nearly burst into tears when the light didn't come on. The prospect of walking up the stairs was just too much for me to even contemplate. Eventually the lift doors opened and I made it up to the cafe. When I ordered my drink the kind lady behind the counter had to ask me to speak up twice as I'd spoken so quietly. I then tried, unsuccessfully, to carry the coffee and my walking stick to my table. Seeing my hands shake, the same kind lady carried my coffee for me. I sat down and breathed a small sigh of relief. I'd made it. I remember looking around me with my heart pounding in my chest thinking 'these people have no idea'. What is just a coffee to them genuinely feels like the biggest achievement of my life to date. I felt terrified and overjoyed at the same time. I got out the book I'd brought with me and stared at the page. I couldn't focus because my eyes were full of tears. I couldn't believe how much sitting with my coffee in that Waterstones bookshop meant to me. I stayed for about twenty minutes before triumphantly getting a taxi straight back to bed again.

I tried small (but giant to me) trips like this regularly. Gradually over time they got a little bit easier. I started branching out - trying Costa instead - and extending the amount of time I stayed. Some trips were good, others didn't go well and I'd beat myself up when I got home, disappointed.

I started getting dropped off a bit further away from where I wanted to go. Those slightly longer walks from the car to the door were difficult. Everything felt like it was moving at a million miles an hour. I was standing still while people cars, dogs whirled around me. I felt vulnerable. Crossing the road I was so scared of not getting to the other side quick enough that I waited to the point where my legs were shaking from standing still too long.

Every time I independently crossed the threshold of the house though was a small victory which has cumulatively had a huge impact on my confidence.

Now it's something I don't have to think about anywhere near as much. I'm very lucky in that my health is a bit better which makes everything much easier. Some days I can get overwhelmed but I am better at finding somewhere to sit quickly or taking a few deep breaths to steady myself. I don't have to plan my escape route so meticulously or feel like a fraud when I speak to anyone.

It's been a slow process but I finally feel like I'm coming out the other side. Something I think about a lot, is just how grateful I felt when I sipped that coffee on my first solo outing. I was so appreciative of the opportunity to do that on my own again. As I (fingers crossed) continue to build on what I 'm able to do I don't ever want to be complacent about the little things. I have a lot to be thankful for, have made a lot of progress and I don't want to forget that.


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Monday, 11 July 2016

INSPIRED BY... SIAN WOOTTON



Sian is without doubt one of the most kind-hearted, generous people I have ever had the good fortune to get to know. Before I write each of these little introductions to my interviews, I jot down a few key things I want to say about the person. For Sian, I have triple underlined the world lovely. However her day is going she is endlessly considerate, thoughtful and supportive. I feel incredibly lucky to call her my friend.

Sian works tirelessly to support people with health difficulties, both through her blog and as Queen of  Team Princess, an ME fund- and awareness-raising group.

For all of the above, Sian inspires me daily and I am excited to share her answers to my interview questions.


_______________________________________________________________________



What are you most proud of? 


Looking back and also thinking about my current situation I think I am most proud of something that no degree or accolade could have given me. And that is my perseverance and the ability to get myself through each day and not break down. Yes I feel sorry for myself every now and again and life as a chronically ill disabled person throws all kinds of challenges at you. However I can honestly say that each day I will have something to smile about or be grateful for. As well as handle it all with sense of humour. 

About 6 years ago I lost my will to live, suffered major anxiety and self harmed. It was terrifying. Through it all I was just so scared of my thoughts and actions because I didn't want to feel/be like that. I'm lucky in a way to have had that fear because it made me get help straight away and to continue going to get help each time things were at their worst. And I'm lucky because I got better. At the time of my ME diagnosis and where all my former achievements were pulled out from under me, I thought all those feelings would come flooding back. I'm lucky they never have. Even when pain has been unbearable, plans have been cancelled or when I need to be spoonfed. I'm so proud I got through that time of my life and how I am coping so well mentally and emotionally with being chronically ill. I'm not ashamed to say that I give myself a pat on the back every now and then or more like treat myself to some internet shopping. I can honestly say I am happy, which truly baffles many. My circumstances could of course be better but I'm doing okay.

 

Who/what do you look to for inspiration? 


I have never been swayed by celebrity or fame. Most seem desperately unhappy. But what I have always been drawn to is people that just exude so much love for what they do or the life they're leading. People that have gone after their goals and getting to live them, but they still can't quite grasp just how lucky they are. No matter what it is. People that in a way make their own happiness. 

Now, of course I have to include the wonderful people in the chronic illness community that I've got to know through blogging and social media. People with so many struggles yet they're determined to not to let their illness define who they are. They've been dealt a bad hand yet they are somehow making the most of what they can. How we can all manage a smile each day just shows strength of character. They know the reality but have so much hope. When you then add that most will dedicate part of their day to check in with you, offer support and cheer at every step forward you make, knowing just what it cost you, you know you have something special. Whilst many of them might not think they're very inspiring stuck in their beds, I'd definitely refute that.



When chronic illness feels like a bit of a cloud, what’s your silver lining? 


One of my favourite quotes is 'every day might not be good but there is something good in every day.' And it's so true. Sometimes, on the worst of days, you have to search hard for it and feel like it's such an insignificant thing, like your pain level was a 9 not a 10, or you drank a cup of tea from your favourite mug. I guess just trying in itself is a very shiny silver lining. Having that resilience to keep looking even through heavy cloud. Having a great family that care for me in every sense of the word has certainly been a blessing. Then of course there's the spoonie community and friends as mentioned above. One whiff of struggle and a lovely message full of support and kindness is pinging your way.

 

What would your advice be to someone who has recently fallen ill? 


You are a lot stronger than you think. And somehow you will find a way to cope even though you think that will be impossible. That doesn't mean you are giving up or giving in. Of course it will be very hard at times and you will grieve. The best thing you can do is not torment yourself thinking about how your life is meant to be or compare yourself too much to others. Focus on doing the best you can for yourself in each moment. Sometimes that means doing nothing and resting, it's important and healing. It's not lazy or obstinate and it's certainly not what you want but it's what you need in that moment.



PLACES YOU CAN FIND SIAN




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Monday, 4 July 2016

INSPIRED BY... OLIVIA COLE



In this post, I will be sharing the answers the lovely Olivia Cole gave to my 'Inspired by..' interview questions. Olivia, beautiful inside and out, is the founder of the CFS Selfies Campaign. She has done an incredible job bringing visibility to what is often perceived as an entirely 'invisible' illness. Through her campaign, Olivia asks that people living with CFS / ME share photos of themselves from better and worse days. The hundreds of photos she has received (and shared with a wider audience) highlight the fluctuating nature of the illness and how while someone may look 'well' on a given day, it could be a very different story on another.

Olivia has done a great deal in raising awareness of the realities of CFS/ME, perhaps most notably when she appeared with her Mum on ITV's Good Morning Britain.



I was excited to learn that Olivia also recently started writing a fashion, beauty and lifestyle blog. I had a browse the other day and was not in the least bit surprised to see it looking amazing. I can't wait for future posts!

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What are you most proud of? 


I would say what I'm probably most proud of is my CFS SELFIES page on Instagram. For years I didn't know one person who had CFS/M.E and it can be a very isolating illness. From setting up CFS SELFIES I found a whole community of people who felt the exact same as me. I hope that all the other sufferers out there felt that they found others who instantly understood them too and that it has helped what could be a lonely fight that little less lonely.

Who/what do you look to for inspiration? 


I would say that the person that I look to for inspiration and that also inspires me a lot is my brother Alex. He has always been set on what he wants to do in life since a very young age and is now taking all the steps to reach that dream. He is always very supportive of me and has shown me that there is more to life than just being ill and that if I believe I can, then hopefully one day I'll also be taking those steps to achieving my dream.

But also my parents they inspire me a lot too, they've more a less both put their life's on hold to care and look after me and I will never be able to thank them enough for that and their constant positive support and belief in me.

When chronic illness feels like a bit of a cloud, what’s your silver lining? 


My silver lining is having days where I'm well enough to go out either in my wheelchair or maybe walking and just be able to see the countryside or forests and just appreciate how beautiful the world is. This is something you definitely appreciate more after being stuck indoors unwell.

What would your advice be to someone who has recently fallen ill? 


My advice to somebody who has recently fallen ill is definitely to listen to your own body, if your body is telling you to rest, then rest. Don't let anyone push you to go out when you yourself know it's going to be too much for you. You know your own body better than anyone else after all! Also find people like you, you can then compare symptoms and know that there are so many others out there who feel exactly the same as you.

Definitely never become your illness, always remember who you are and what hobbies you love doing, even if you can't pursue them now, just believe that one day you'll be able to- Always have a dream.



PLACES YOU CAN FIND OLIVIA







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YOU CAN DO ANYTHING BUT NOT EVERYTHING


A little while ago on this blog I started a series of posts where I interview people who I think are wonderful and who inspire me in one way or another. As I'm prone to do when I have a new idea, I threw myself into it wholeheartedly. I sent out a flurry of messages on Facebook /Instagram/ Twitter to people I admire immensely explaining the idea and providing them with the interview questions I had in mind. Lovely as the people I reached out to are, they got back to me pretty much straight away with their answers or a commitment to complete the answers when they were able. I was blown away and felt so grateful to them for their time and precious energy. I started writing up the posts and publishing them here on my blog. I absolutely loved showing off the people I admire and enjoyed the whole process of putting the posts together. Then (as you may have noticed), things got a bit quiet. It has now, shamefully, been three whole months since I posted my last interview and I still have (brilliant) answers that I'm dying to share sitting in my inboxes and drafts.

The truth is that I've been a bit over-ambitious. I've been very fortunate to see improvements in my health lately which has skewed my perception of what are realistic targets to set myself. I am beyond grateful to be able to use my body a bit more and as result have been trying to make the very most of it. This has meant though, that I've probably said 'yes' a few more times than I should have done. I've stretched myself personally, physically and professionally (as strange as it feels to refer to BearHugs as my professional life!). It's become pretty clear, that while I can cope with extending each of these areas in isolation, stretching myself all at once is not sensible or sustainable.

My blog has unfortunately become a casualty of this little learning curve and I feel so very guilty about the interviews I've not yet been able to share. Today, I've made getting this blog back on track number one priority. I've got a (far more realistic!) schedule planned out and it feels great to be taking back control.

Over the coming months, I'm looking forward to attempting to restore a bit of balance to my life. It's going to mean saying 'no' occasionally but that's ok.

Thank you so much to the lovely people who have answered my interview questions and bore (?) with me. The posts are on their way now and I cannot wait to share them. Once I'm all up to date there are a fair few other inspiring individuals that I would love to have featured too.

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Tuesday, 26 April 2016

WHY I DECIDED TO HAVE LYME DISEASE TESTING CARRIED OUT IN GERMANY



In August of last year, I rather bizarrely found myself looking out the window at my boyfriend, Jared, as he carefully carried a package of tubes of my still-warm blood. He was about to hand them over to a FedEx courier who would be sending them on their way to ArminLabs in Germany.

For the last few years, I had been very ill with a wide range of symptoms which had turned my life entirely on its head. I had gone from being physically active and working in a busy job to predominantly housebound and reliant on others to help me with all aspects of daily living. I had been given a diagnosis of ME / CFS (by a process of elimination) and had pretty much exhausted the NHS services available to me. I was told that there was no medication that could help me and that from there on in it would be a case of managing my symptoms as best as possible. Frustrated, I looked for more answers.

My symptoms to date have included debilitating fatigue; muscular and joint pain; migraines; memory problems; word-finding and concentration difficulties; weakness; poor temperature regulation; numbness; dizziness; nausea; muscle twitching; anxiety; light and noise sensitivity; sleep disturbance and painful swollen glands. I learned through my research that while these symptoms do fit with a diagnosis of ME / CFS, they can also point to, among other things, Lyme Disease, an illness caused by a bacterial infection (Borrelia burgdorferi) transmitted via the bites of infected ticks.

This information about the transmission of the illness set some alarm bells ringing in my mind. Five years earlier, I had travelled in Thailand and while trekking in the jungle amassed a couple of large, red, suspicious looking bites on my leg which were more pronounced than mosquito bites covering my body. When I returned to the UK these bites did not go down and I fell very ill. I was sent by my GP to hospital for testing, Malaria being the main suspect despite the antimalarials I had taken. After a week or so though, I started to feel better and further investigations were abandoned. As a result we never got to the bottom of what had caused the sudden onset of my mystery illness. I later moved to the Isle of Lewis in the Outer Hebrides where my boyfriend and I got a puppy. We were frequently out walking in tick prone areas and it was not uncommon for me to remove ticks from my dog when I found them on his skin.

For a long time I dismissed my potential exposure to ticks as I had I asked on a number of occasions that my GP test me for Lyme Disease. I received two negative results. I also enquired about a referral to Infectious Diseases at an ME/CFS service appointment but was informed that there was not a lot of point as I already had negative Lyme results.

I later learned though that despite what I had been told, a negative NHS test result cannot conclusively rule out Lyme Disease. With a sensitivity of around 50%, approximately half of positive cases may not be identified. It also came to my attention that many people with Lyme disease do not remember being bitten by a tick or present with the 'typical' Lyme rash (erythema migrans) I had seen on the NHS website.

My immediate reaction to my findings was that I had to get more accurate testing straight away. It quickly became apparent though that nothing Lyme Disease-related was going to be straightforward.

For one thing, trying to find out more about the illness itself was like opening a can of worms. There is an overwhelming amount of information out there, a lot of which is emotionally charged and conflicting. If I'm entirely honest, even after wading through huge amounts of information, talking to health professionals and reading books, I still do not feel I could talk about it confidently or definitively. It also became clear that private testing would be expensive and that even if a positive result did come back accessing treatment would be difficult.

Personally, I did not have the money for private testing readily at my disposal so I would be reliant on my parents to fund this for me. I worried a great deal about the expense and their money going to waste. For this reason, it was important to me that we worked out where the very best lab would be.

With the help of my friend Sophia's mum, we identified ArminLabs in Germany as being the mostly likely reliable place to have the testing carried out. They offer Seraspot and ELISA tests (similar to NHS) which look for antibodies the body has produced against Lyme disease. They also offer an entirely different test, the EliSpot, which tests for T-cells. When the body detects a Borrelia (Lyme) infection, the immune system, as well as antibodies, can produce T-lymphocytes. Once the Lyme infection is no longer active, the T-cellular immune response should vanish. Therefore if Lyme specific T-Cells are found in the blood this would indicate an active Lyme infection.  ArminLabs assert on their website that the EliSpot test has a sensitivity of 84% (84% true positive rate) and a specificity of 94% (94% true negative rate). Numbers which are significantly higher than those for the NHS tests. We decided, in light of any evidence to the contrary, to take these figures at face value.

After umm-ing got and ahh-ing for a long time, I finally decided that my doubts around testing were outweighed by the potential positive outcomes.

If I received a negative result, nothing would change. I would carry on managing my symptoms as best I could and I would have eased the niggling worry in the back of my mind. One of my biggest fears is finding out years later that there was something I could have done sooner to improve my health.

If I received a positive result and was to take it at face value, there would be the potential for attempting some kind of treatment. It may be stressful and confusing and I'd have a lot to learn but it could also help me get closer to feeling better in the long run. There would be no guarantees of improvement but I'd have something to investigate and work towards.

Having made the decision, we set the ball rolling by following Karen's step-by-step guide on Sophia's blog. We decided to have tests done for Lyme and a number of co-infections (as recommended by ArminLabs on the basis of my symptoms). In total this cost around £700.  A nurse at my local GP surgery took my bloods and a courier sent them on their way to Germany. I received my results a few weeks later via email.

The results were not the easiest to interpret so I sought help from the Lyme Disease UK Discussion Group. My Lyme seraspot results were negative but my EliSpot was (quite strongly) positive. I also had positive results for several co-infections.


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Something I have worried about a lot when writing this blog post is that I share the most accurate information that I can. I have tried to read widely and critically but am very aware that there are still gaping holes in my knowledge and understanding. I wanted to share what I could of my own experiences in case they could be of help to others but am by no means an expert.

I'd like to carry on documenting how I get on with everything Lyme-related and hope to share posts as and when I can about the (limited) treatment I have been able to access on the NHS.

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Wednesday, 30 March 2016

INSPIRED BY... ANNA JONES


Interviewing people who inspire me has become one of my favourite things. Today I have Anna Jones' answers to share and I think they're fantastic.

Anna writes the blog M.E., Myself and I where she documents her life 'in the slow lane' with invisible, chronic illness. She writes openly and frankly about her experiences, providing reassurance, solidarity and comfort to sufferers all over the world. Her posts are informative and give an amazing insight into life with a horribly misunderstood and underestimated illness. 

I am hugely inspired by Anna's commitment to raise awareness and improve outcomes for M.E sufferers like herself. In May 2013, Anna started 'Blue Sunday', a fund- and awareness-raising tea party. She hosted this in person and online, asking that anyone taking part donated what they would pay for a cup of tea and slice of cake to the M.E. Association. With so many M.E. sufferers unable to leave their beds, Anna provided an amazing accessible alternative to traditional physically demanding fundraising efforts. During the event Anna uploaded photos of what was going on at her tea party at home, while people far and wide uploaded their own from their bedrooms.  'Blue Sunday' was such a success that Anna was quite rightly nominated for a JustGiving Award and a WEGO Health Activist Award. It has also since been adopted by the M.E. Association as an official annual fundraiser.  In 2015, over £5000 was raised for M.E. charities.

Something that has really struck me as amazing about Anna is the way in which she cultivates a sense of community among fellow chronic illness sufferers. Becoming suddenly very poorly can be extremely isolating, but through 'Blue Sunday' and her ongoing social media presence Anna has created a warm- and inclusive- feeling environment. With her friend Cara, she started the hashtag #ChipperTuesday on Instagram. Through this, chronic illness sufferers share photos where they are wearing or doing anything that brings a smile to their face. Sometimes when chronically ill, it is easy to get bogged down in the overwhelming negatives of the situation. I can personally vouch for the effectiveness of the hashtag in drawing out the silver linings. On multiple Tuesdays I have had a look around me to take stock of the little things bringing me joy.

I could gush about Anna all day, but I'll stop here now and share the answers she gave to my interview questions.


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What are you most proud of? 


Where do I start?! I am so proud of my ability to just keep going; to get up each day that I am physically able to; to bounce back from every setback and relapse; to be so far out of my comfort zone and start dating whilst being disabled. But perhaps Blue Sunday is the thing that sticks in my mind the most. This year will be my fourth annual tea party to raise money and awareness during M.E. Awareness week. It’s now an international event, albeit a small one. Last year we raised over £4000 just by eating cake and drinking tea. It feels so wonderful to have achieved something like that while being so ill. 

Who/what do you look to for inspiration? 


My mum has always been my idol and to see how she has dealt with one of her children becoming a chronic illness sufferer has been truly inspiring to many people. I often think that chronic illness is harder for those around the sufferer and my mum, along with my family, has dealt with it admirably. 

When chronic illness feels like a bit of a cloud, what’s your silver lining? 


The other sufferers I have ‘met’ along the way. I meet up with them everyday online and my journey would have been so incredibly bleak without them. It’s their unwavering support and the knowledge that they truly understand what it is like to become chronically ill during what should be the best years of your life that has been invaluable. I would be lost without them. 

What would your advice be to someone who has recently fallen ill? 


Be kind to yourself. This is not your fault. Forget about comparing yourself to your peers or even to other sufferers. This is your journey. Allow yourself the time to be sad and frustrated but learn to celebrate what used to be such everyday tasks. They are now the biggest achievements of all.


PLACES YOU CAN FIND ANNA





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