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Dear Chronic Illness, compiled by Pippa Stacey
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How To Network Online by Pippa Stacey – eBook
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How To Study Online by Pippa Stacey – eBook
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University and Chronic Illness: A Survival Guide by Pippa Stacey
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Just imagine how much we could achieve with our en

Just imagine how much we could achieve with our energy if we didn’t have to spend it all fighting for the things we should be entitled to. It’s something I think about a lot.
It blows my mind that the people who have the smallest energy envelope to begin with are the ones who have to jump through the most hoops to get the support they need to live a safe and independent life.
For many disabled people, dealing with medical admin is like a full-time job. Many have to fight tooth and nail for care hours that will enable them to work or leave the house, fight to overturn wildly inaccurate reports from DWP advisors, fight to be taken seriously about valid medical concerns and to be referred for the help they need.
I’ve had a small taste of some similar struggles over the years, but nothing has felt quite as emotive as the #LeftOffTheList vaccine situation.
The situation in York alone is an absolute mess at present. Even though residents with ME/CFS have presented the exact same letter of evidence to their doctors surgeries outlining why ME/CFS falls under the Group 6 priority group as a neurological condition, the responses from each of the surgeries have varied massively.
Some teams have responded positively when presented with the evidence, immediately moving the person in question to the priority group and booking their vaccine, then going on to contact other patients with the condition registered at their practice. Others have just as speedily responded with a firm no, deciding based on the exact same evidence that ME/CFS isn’t eligible. A few people in York have told me that they’ve even been accused of trying to queue jump by their GPs, that they’re trying to take somebody else’s place.
It’s frustrating and it’s disheartening, and I know similar things are happening all over the country as well. It’s just yet another case where the systems in place aren’t robust enough, where people with chronic illnesses are falling through the gap. It’s one more example where access to support seems to be a game of chance.
If you’re dealing with similar battles right now, my thoughts are with you. Never, ever forget that your struggles are valid. 💜✨

So I remember hearing about Non Pratt’s Every Li

So I remember hearing about Non Pratt’s Every Little Piece Of My Heart and immediately popping it on my TBR, but it was until I turned to the very first page to start reading that I remembered *why* I so badly wanted to read it.
This book has kind of done the impossible in my eyes. It features a chronically ill protagonist, who is more than their chronic illness. A main character whose chronic illness impacts their entire life, and yet it isn’t their whole story. Sophie’s lupus is a significant part of who she is and how she lives her life, but it isn’t what the story hinges upon.
And yes, the fact that I’m so excited about this just goes to show how low the bar is currently set when it comes to disability and chronic illness representation in YA fiction - I’m certain I won’t be the only one who finds a good deal of the disability representation that‘s already out there to be a tad icky and problematic. But all the more reason to celebrate these positive little victories when we do find them, hey?
Non Pratt deserves all the praise and recognition for this. Seriously. Getting the balance right when it comes to portraying these issues realistically is so flipping difficult. Knowing that the the writing process and the research behind it has been approached so thoroughly yet mindfully, and acknowledging straight up that Sophie’s situation won’t reflect the lived experiences of every person with a chronic illness, means a lot. A heck of a lot.
Thank you so much, Non. More of this plz, @walkerya? 🤩🤞🏻
Alllll of this aside, this book is such a gorgeous read and awesomely diverse in many more ways than than just this one. Will pop an affiliate link in my bio if you fancy giving it a go yourself - I’d love to hear what you think!
[Not sponsored or gifted, although I have an ongoing relationship with Walker YA as a blogger. The link in my bio is an affiliate link, which means I earn a small commission from sales at no extra cost to you!]

[#AD] You guys. There are 85 books stacked up in t

[#AD] You guys. There are 85 books stacked up in this photo. It took some strategising and just the one minor avalanche situation... but it was worth it. Because each one of the 85 books in this photo represents one MILLION pounds that @tescofood has donated to deserving community groups across the UK.
Tesco’s Bags of Help scheme uses sales income from their Bags For Life to fund thousands of local projects and initiatives throughout the year - projects that I know all too well from my own experiences may be less likely to qualify for other sources of funding.
You can find an interactive map of all local causes who’ve benefited from the Bags of Help initiative online, but one charity I really wanted to bring your attention to is the Toby Henderson Trust (@the_toby_henderson_trust) based just up the road from me in the North East.
The charity supports local children and young adults with autism, as well as their family and carers, and I had a lovely chat with their managing director Lesley about their experience with the scheme. The funding they secured allowed them to develop “Toby’s Magical Garden” - a bespoke outdoor space full of sensory play activities and specially adapted to be a calm and safe space for autistic people and their families... as well as team member George the Labrador, providing what we can all agree is an essential service in these trying times - quality time with a beautiful doggo.
Funding from Tesco’s Bags of Help scheme meant this charity could establish services and resources so desperately needed in their local community... and you only have to glance at their website and hear the way their supporters talk about them to know how much of a difference they’ve made. I’ll leave a link in my bio to the website where you can find out more about their work and also their donation page - I’m making my donation and subscribing to the newsletter as we speak.
£85 million is a big ol’ number to comprehend, and thinking about the number of community projects supported by the Bags of Help scheme and the ones who’ll be supported in years to come makes my heart SO happy. Good on ya, Tesco 🥰🙌🏻 #EveryLittleHelps

Oh guys, I can’t believe it’s finally time to

Oh guys, I can’t believe it’s finally time to write this post. My final thank you and goodbye to Spoonie Survival Kits, and our grand total raised... accompanied by snaps from today right back to Past Pippa in 2015 😳😂
Before we go any further, it would mean the WORLD to me if you’d check out the new blog post linked in my bio, where I say everything I want to say without the pesky caption limits on social media. It’s the full story of how and why I started this fundraising social enterprise, complete with my personal highlights from the last six years, an abundance of thank you messages, all of the charities we fundraised for and the amounts we donated, and our grand total raised. Spoiler alert: we raised a grand total of £8,382.57 for 15 different chronic illness causes 🥺🥳
Looking back to where I was when Spoonie Survival Kits began compared to where I am now makes me feel more than a little emotional. In many ways SSK felt like my act of defiance, my way of showing I still had so much to give in a world that made (and continues to make) chronically ill people feel worthless.
I don’t think Past Pippa would have believed me if I’d told her that things were going to work out better than she thought, that I’d have the opportunities I’ve had and that the work I do now revolves around empowering and opening up opportunities for other people who feel the way I once did… the thing that drove me to create Spoonie Survival Kits in the first place. Goodness me.
SSK was the start of everything in my eyes. I’ll always be grateful for this adventure and for everything I’ve learned from the experience. It’s something I’ll cherish forever, even as I turn my eyes to the future that it’s helped to open up for me. Bringing things to an end was a decision I made so I could give more of myself to my work in the charity sector, but let it be known... this is not the end of my fundraising plans.
Thank you, Spoonie Survival Kits, and thank you everybody who supported this initiative along the way. You changed my life forever. 💜💙

I’ve just watched @jennafarmeruk’s amazing IGT

I’ve just watched @jennafarmeruk’s amazing IGTV video on chronic illness blogging and couldn’t resist joining in the conversation!
Do watch the video - there’s loads of brilliant points about sponsored content and setting boundaries as a chronic illness blogger, and it felt SO validating to watch.
I hope with everything in me that it’s as easy for audiences, you lovely lot, to spot when paid work and sponsored content has been created with integrity and authenticity - it’s something that’s been so important to me throughout my whole time online and I really, really hope that comes through.
The thing I want to add is this: I’ve learned that ‘influencing’ doesn’t always mean advertising products and services to individuals. My life online and my career are beginning to overlap these days, and my role is to facilitate important conversations about disability and chronic illness and influence best practice.
I consult with organisations and create industry guidance, work with brands to highlight examples of social conscience, write for publications to represent lived experiences of chronic illnesses... and so much more. In my mind, all of this falls under the ‘influencer’ umbrella too. In a way, most of my influencing happens away from social media!
That said, I of course promote brands I personally love in the usual way - you’ve all seen how excited I get over working with those I adore 🙈😂 I still haven’t stopped harping on about my majestic thermal blanket and I regret nothing.
Having any kind of platform is a privilege, and I think it’s so important to use it mindfully and try and do some good with it. And the timing of all this feels beautiful because *hopefully* you’re going to see some collaborations I feel really flipping proud of over the next month or so. Things that make me proud to be an influencer in spite of the current hostility around that word due to the... wildly unethical actions of a select few.
Here’s to more of these conversations going forward. And thank you, as always, for your ongoing support. It helps me live a life I love and hopefully play a tiny role in making the world a better place. I’ll never, ever take that lightly 💫

This time last year, back in my happy place 🥺📚
So here’s something I never thought I’d say: I miss my mobility aids. I miss using them. I miss getting mad at them when they rebel and do their own thing. I do not miss the unnecessary comments from complete strangers but we’ll just not talk about that one.
I’m an ambulatory wheelchair user. I only need to use my mobility aids when I leave the house for longer periods, which means I’ve barely used them at all going on for a year now. Some of you lovely lot won’t even have been formally introduced to them yet!
Pictured here we have George II, the transit wheelchair with a chronic squeak I’ve become so used to that I don’t even hear it any more and a left footrest which likes to unhinge itself at random in the middle of busy roads. If you’ve seen my blog or YouTube channel you’ve perhaps also met Janice the power-chair, who likes to keep me on my toes by breaking down or running out of battery in only the most awkward of life situations.
I became a wheelchair user somewhat reluctantly and my goodness, navigating the world on wheels and dealing with stigma can be an utter nightmare... but I miss it! Bring on the “WHAT HAPPENED TO YOU THEN?!” conversations with every stranger on the face of the Earth. I’ve had a whole year to think of more interesting responses... 😏
It wasn’t long after I started using mobility aids that it clicked just how much of the world they opened up for me again and what a gamechanger they were in helping me manage my condition, and I just really can’t wait to get back out there. I still have a mahoosive list of things I want to do for my #AccessibleYork series when the time is right again!
Roll on the day (no pun intended) when we can all reunite with our problematic mobility aids and get back to exploring the world again, hey? 😌💃🏼

The other day I saw a post from @sophjbutler that

The other day I saw a post from @sophjbutler that really resonated with me, reacting to a question about what you would do if you could go back to your non-disabled body for a time.
Now I can’t sit here and say I don’t think about or wish for a bit of time in my body pre-illness. It’s been almost six years since I last danced and I still crave the feeling of going *full out* almost every single day.
If I were to be granted a magical wish that allowed me to go back for a few hours (and ideally take away the post-exertional malaise that’d come the next day because good LORD that would be horrific) - ballet class would probably be my choice. And even dance aside, I don’t mind telling you that my mind still plays the ‘what if...?’ scenario pretty frequently for every single aspect of my life. My life with no illness would look significantly different to the life I live today.
But here’s the thing. After reading Sophie’s post, I realised something: I long for and look forward to the thing I can do with *this* version of my body, just as much (if not more!) as I long for my pre-illness body. And for me, that’s a big deal.
Yes, I think about what could have been. But I also wholeheartedly look forward to navigating new places with my wheelchair. Figuring out pacing strategies that’ll help me reach my goals. Hunting down *all* the new free-from foods. Taking risks and being open to new experiences in a way that works for me... my poor family have been listening to me banging on about how I *need* to do another adaptive skiing session like the one I was getting ready for here for about 18 months now. Soz.
I wouldn’t want to label it as acceptance, and more than that I personally think it’s valid and healthy to grieve for what you had before. To me, though, I’ve realised that these things all feel so much more... normal than they once did. Instead of using all my energy adamantly trying to summon and live in the past, I feel like I can more readily use it to look forward to the future instead. And I’m pretty chuffed about that really 🥰✨
[Pic is a throwback from @snozone in 2019!]

Moment of silence for my arm muscles after holding

Moment of silence for my arm muscles after holding up this stack long enough to take the photos but just LOOK at the books. The prettiest books in the universe. Tell me I’m wrong.
Today on the blog I’m sharing a post that’s been sitting in my drafts for ages - my personal tips and tricks for reading classics when you have a chronic illness. Reading in general with a chronic illness comes with allllll kinds of barriers (I have a blog post on this too!) and I know from experience that classics in particular can feel really daunting.
I have a bit of a love-hate relationship with classics, and it wasn’t until a few years ago that I even felt like I wanted to tackle adult classics at all - something that I sometimes feel a little insecure about as somebody who considers themselves pretty bookish. But one of the biggest things I’ve learned, as you’ll see from the blog post, is that rather than forcing yourself to read particular titles just because you think you should, following your instincts in terms of what and when you’re reading can make all the difference. And once you have that down, you really can start enjoying and appreciating classics the way you hoped to.
Link’s in my bio if you fancy a read, as well as an affiliate link to my list of favourite classics if you’re in need of some recommendations.
Do you have any tips for tackling classics? I’d love to hear your all-time favourites if you have them, or the classic you‘d most like to read. Just don’t make me choose only one title off this pile here, yus? 🙈📚
[#AD - @wordsworth_editions Collector’s Editions previously gifted. No obligation to share in the post but who wouldn’t? My collection is one of my most treasured possessions and looking at them on my bookshelf when I’m stuck on the sofa makes my heart happy. That is all 😌🥰]

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