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  • pippa stood outdoors wearing red jumper, holding up dear chronic illness book and smilingpale blue cover of book, set out like a diary with the words 'dear chronic illness' and 'compiled by pippa stacey' in black, on white square background

    Dear Chronic Illness, compiled by Pippa Stacey

    £5.99     Purchase This Book
  • How To Network Online' ebook

    How To Network Online by Pippa Stacey – eBook

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  • front cover of 'university and chronic illness: a survival guide' featuring bold typography and coloured ink dots with yellow notebook in lower left corner, complete with stickman doodles representing different disabilities

    University and Chronic Illness: A Survival Guide by Pippa Stacey

    £14.95     Add to basket

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I don’t know why I resemble Dora The Explorer he I don’t know why I resemble Dora The Explorer here either. Or why my dungarees look 3773278x too long for my legs 🙈😂⠀ ⠀ This photo and the Dora The Explorer reference reminded me of my ‘most likely to’ from school. When you left school or college, did you have a yearbook where everybody had a ‘most likely to’ under their name?⠀ ⠀ Mine was ‘most likely to become a children’s TV presenter’ which sounds about right... although much less so these days! I think I’d need a lie down even just from watching people jumping around and being a bouncy ray of sunshine 24/7. There are only infrequent moments when you’ll catch me being a bouncy ray of sunshine when the fatigue kicks in and they usually involve some sort of coercion with biscuits. ⠀ ⠀ If you had one, what was your ‘most likely to’ from back then? Was yours serious or jokey, and does it still ring true? Made me smile just to think about it 😆💛
[#AD - Gifted] Starting to think we need some sort [#AD - Gifted] Starting to think we need some sort of klaxon for new free-from finds because LOOK at these goodies!!!⠀ ⠀ The gang at @creativenature produce all kinds of treats free from the top 14 allergens: there’s snack bars, baking kits, and these @gnawbles in particular may well be the love of my actual life. They’re the closest thing I’ve found to dairy-free malteasers and unlike anything else I’ve tried before. NOM. ⠀ ⠀ You can get 10% off any orders with the affiliate code PIPPA10, and I have no doubt that your baking creations will be far superior to mine... which I’ve shamelessly documented in a not-at-all catastrophic IGTV video for your own enjoyment. So if you fancy baking muffins and/or having a breakdown with me, you know what to do. The baking kits are so easy and straightforward that even a vertically-challenged novice like me managed to pull it off 🙈😂⠀ ⠀ IGTV doesn’t let you add captions (don’t even get me started on that one) but I have the whole lot transcribed ready for anybody who needs it: just drop me a message. And here’s hoping Instagram get their act together and improve their accessibility soon, hey?⠀ ⠀ Do let me know if you give the @creativenature goodies a try! The salted caramel and creamy choc @gnawbles in particular were a solid 10/10 from me 🤤🍫
I talk quite a lot about accessible employment, bu I talk quite a lot about accessible employment, but something I haven’t shared all that much by comparison is my own experiences of work... and what I actually do for a living now!⠀ ⠀ Rather than waffle on here, today on the blog I’m sharing my freelance story so far. Starting from just after I graduated, I’ve detailed my experiences of finding inclusive work in the charity sector, making the transition from employed to self-employed, and most recently, the beginning of my journey with The Prince’s Trust... and what the heck I’ve actually been doing with them! ⠀ ⠀ It wasn’t until I sat down and wrote this piece that I realised just how much each of my experiences so far have influenced where I am and what I’m doing now. It blows my mind how just one slight change or difference along the way could have taken me down a whole other path, and moreover, just how lucky I feel to have had the opportunities that have come my way. ⠀ ⠀ I mention this in the piece, but I’m constantly paranoid that people think things are just handed to me or that I’m undeserving, when in reality so much of the sheer hard work and sacrifice simply takes place far away from the social media highlights reel. I really, really hope people know that.⠀ ⠀ The beginning of this year marked another new start of sorts, and I still can’t believe just how different my working week looks in comparison to this time last year. In short, I can finally call myself a freelance writer and blogger... who also works in the charity sector in communications, consultancy and content management. And though there’s still so much I want to learn, I finally feel like I’m right where I’m supposed to be. ⠀ ⠀ Another key part of my story is how my perceptions of being a chronically ill worker have evolved over time, and although this piece is quite Pippa-centric, I really hope others can take things away from it too. More than anything, I hope it helps you to realise your own worth. It’s time the world sees the talent us chronically ill folk have to offer, and believe me when I say I’m doing what I can to make that happen. Change will come, gang.⠀ ⠀ But in the meantime, link’s in my bio if you fancy a read! 🥰💫
Guys. GUYS. @french_painstry_chef drew me as Auror Guys. GUYS. @french_painstry_chef drew me as Aurora from The Sleeping Beauty and I’m just over here in absolute pieces. I’ve already fangirled extensively over DMs but Pauline, thank you so much again. Your talent and your kind words are everything. 😭💕⠀ ⠀ It felt quite fitting to share this today since I’ve spent the last two afternoons watching Virtual @westendlive via @londontheatre’s page and unexpectedly ended up in absolute pieces over those too. I haven’t been talking about theatre all that much recently and though I’ve been watching stuff online, seeing the mash-up of highlights over the last few years hit me right in the heart and had me actual ugly crying. Oh my goodness. I just really, really miss it.⠀ ⠀ You don’t need me to tell you that challenging times lay ahead for the theatre industry, and the so-called support pledged by officials so far just isn’t enough. No, the arts might not seem like a key service or the highest priority. But we can’t let them die without a fight. We just can’t. In a way, we need them more than ever.⠀ ⠀ So, what can we do as individuals? We can sign petitions, donate to Acting For Others (or individual charities and organisations local to you), and we can buy Theatre Tokens and look forward to spending them when it’s safe to do so in the future. I’ll pop some links on my Stories when I can; still a bit under the weather today! ⠀ ⠀ All of this has also prompted me to post a vlog that I never got round to sharing back in Feb, so if anybody fancies a bit of escapism this evening come along on a stagey trip to London to see @magicgoeswrong with @juddabelle and I. Features train disasters, exploding cocktails and a breakfast buffet that honestly all seems like another lifetime ago. Link’s in my bio! ⠀ ⠀ Bit of a ramble today, but what are you hoping to see on stage when this is all behind us? What’s on your wish-list? Do tell! 🥰🎭
[#AD] Don’t mind me, just in my own little cosy [#AD] Don’t mind me, just in my own little cosy bubble of cosiness again… Something that’s crossed my mind time and time again during lockdown is that all these new terms that have seemed alien to so many people (social distancing, shielding, support bubbles etc…) are all concepts that are just the norm for so many chronically ill people. For the first and perhaps the only time, during lockdown non-chronically ill people have had the teeniest glance into what life is like with a long-term health condition: not necessarily the physical symptoms, but the emotional and psychological challenges that often go less recognised. They’ve experienced just a hint of the isolation that often comes hand in hand with chronic illnesses. As the weeks have gone on, people have learned the value of making a proactive effort to reach out to loved ones and ensure they’re keeping in touch, the social etiquette of video calls, and most of all, the power of listening… even over the Internet. We’ve begun to understand just how much a light-hearted message can make your entire day. We’ve all gone out of our way to utilise technology, making sure that we’re as together as possible, even when we’re apart. I really, really hope we don’t lose sight of that in the future. This period has been full of challenges. But can you imagine what it would have been like, or indeed what life with chronic illness would be like, without technology? As somebody who relies on the online world for most of their work and social life, it’s a heck of a scary thought. One which makes me all the more appreciative of organisations like @kasperskylab, who are committed to innovating and delivering advanced technology that’s effective, usable and accessible… with an emphasis on supporting people and communities. You can find out more about @kasperskylab and their work by following the link in my bio, but in the meantime, I’d love to hear your own thoughts on the lockdown-chronic illness continuum. Have you seen any other parallels between the two? Can you imagine life with chronic illness without the online world? 👩🏼‍💻💜 #LoveAndLoneliness
This might sound a bit strange, but something I’ This might sound a bit strange, but something I’ve been thinking about recently is building up the tolerance for ‘normal’ life again.⠀ ⠀ I’ve spent long periods of time indoors before due to my condition, but just before lockdown I was managing to leave the house around 2-4 times a fortnight. If I was careful and sensible, that was a realistic amount... something I’ve built up towards and something I was pretty happy with. ⠀ ⠀ However, after spending such a long period of time indoors, it seems that it’s going to take some time to reacclimatise to the outside world and being around other people again. I’ve left the house a couple of times now, just for a short while, and each time it’s absolutely blummin’ floored me. ⠀ ⠀ The thing with conditions like ME/CFS is that it isn’t only the physical actions of moving around that wears you out and gives you post-exertional malaise. It’s difficult to explain, but everything that has any kind of sensory impact (light, sound, scent etc) can be tough, and building up tolerance in the first place is challenging. Even talking face to face seems like a test of stamina at the moment. ⠀ ⠀ It’s a strange one, isn’t it? I‘ve no doubt that there’ll be others who are experiencing similar things at the moment too. Is it something you’re concerned about? Do you have any tips for reacclimatising? ⠀ ⠀ For me, I think it’s simply going to be a case of taking little steps forward and working my way up again. I’m definitely not the most patient person when it comes to my health but here’s to seeing the bigger picture, hey? Easier said than done I know, but we’ve got this 👊🏻💛
[#AD] Cuppa and a flapjack, anyone? Since I can’ [#AD] Cuppa and a flapjack, anyone? Since I can’t be with my dad this Fathers’ Day, @tescofood challenged me to create one of their Easy Bakes recipes and join in with #FoodLoveStories in his honour. My Dad and I always had a ritual of having a cup of tea and a flapjack on a Saturday afternoon when he came home from playing golf, so they were the natural choice; especially as I could easily adapt the Tesco recipe to accommodate my allergies too. They were quick and simple to make, easy to do in stages so I could pace myself and rest throughout the baking process, and now they real challenge lies in not consuming the entire lot of them to myself in one sitting. They are DREAMY, gang. Do you have a recipe that reminds you of your dad? What’s your go-to treat to bake at this time of year? I’ll pop a link to @tescofood’s Easy Bakes Gallery in my bio in case you’re in need of any inspiration, and we’d love to see your own creations too. You can share posts and browse through others under the #FoodLoveStories hashtag! 😋🍪 #EveryLittleHelps
Okay, I’m gonna need you to look right past this Okay, I’m gonna need you to look right past this staged photo from a while back that I never ended up needing to use and instead focus on the majestic Olaf mug whilst I put this question out there. Many thanks. ⠀ ⠀ Chronically ill friends, have you heard of skill swapping? What do you think of it? Is it something you would use?⠀ ⠀ I only learned that skill swaps were even A Thing earlier this year and immediately I was intrigued. Essentially it’s a method of recruiting individuals to help you with a specific task, and instead of paying them financially, you pay them with your time: you return the favour by offering an equivalent skill of your own that they would benefit from. In theory it could apply to so many contexts, but as both a freelancer and a chronically ill worker myself I’d really love to hear if anybody’s tried it out in real life.⠀ ⠀ If you know me at all, you know I’m not an artistic human being. I’m always in need of reliable graphic designers and illustrators for my work, and if we’re being honest there are times I could use a hand with admin too... but I usually go without because I only want to pay somebody what I think is an acceptable wage and my bank account isn’t quite on board with that yet. If I thought there were people out there who’d be willing to work with me in exchange for my own skills (e.g. writing, editing, proofreading, transcribing, comms, consultancy, maybe even social media promotion!), I’d be all over it.⠀ ⠀ But then on the flip-side, I know first-hand that people like me are expected to work for free *way* more often than we should be. Would skill swapping undermine the argument for fair and decent pay for freelancers, and/or chronically ill individuals? Would people still only see it as a favour or a good deed rather than a mutually beneficial partnership? And how do we make sure the time and energy commitment is relatively equal on both sides so nobody is being taken advantage of?⠀ ⠀ I’ve been mulling this over a *lot* these past few days, so I’d really love to hear any of your own thoughts or experiences. Would you make use of a skill swap? What skills would you offer, and which would you be searching for? 💫
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