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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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Something you might not know is that the name of m

Something you might not know is that the name of my blog, Life Of Pippa, comes from anecdotes from my friends. Ever since my health declined I’ve found myself in a worrying number of bizarre life situations that it often seems only I could end up in… and these became affectionately christened by my nearest and dearest as ‘Life Of Pippa’ moments.
I’m the first one to joke about the tricky situations I seem to find myself in, but the truth of the matter is that when disability is a big part of your life, you’re much more likely to encounter troublesome situations just from going about your day. Whether it’s physical barriers, unsafe environments, or stigma from the people around us, the unfortunate reality is that disabled people run an increased risk of encountering dangerous circumstances.
What these situations might look like will varies between people, but today on the blog I wanted to share five of my own tips for being prepared for disability-related emergencies… based on my own lived experiences of the joys of chronic illness. Link’s in my bio!
It feels all the more relevant to share this one today, given that Janice the power-chair’s battery has decided it’s had enough of existing and completely died on me. The replacement battery is coming tomorrow and my goodness, that thing wasn’t cheap. This had better mark the end of the spontaneous wheelchair malfunctions in public place but quite frankly I’m not holding my breath 💆🏻‍♀️😅
How do you prepare for disability-related emergencies? Would love to hear any of your own tips and tricks!
[AD - zero obligation to share on social media but the blog post is sponsored by Thompson’s Solicitors who are one of my stand-by contacts!]

Serious 2012 Instagram vibes going on with this ph

Serious 2012 Instagram vibes going on with this photo but if you can’t flex the seasonal socks today, when can you?!🐰🥕
Hope you’re all having a lovely day! I reckon it might be a bit of a strange one for lots of people this year. I won’t be the only person looking at the weather and wishing they were outside, sat here scrolling through social media and feeling like the only person who isn’t having wholesome picnics and barbecues with friends and loved ones under the easing of restrictions. I won’t be the only one who’s itching to just up and go and live their best life again, while feeling like they’ve been left in the dark.
It might be that you haven’t been well enough to get out and be around people this time. It might be that you haven’t been well enough to do that for a long time. It might be that you’ve made the decision to continue shielding. It might be that you’ve been #LeftOffTheList and deemed ineligible for your vaccination - a silent crisis currently affecting thousands of people with underlying health conditions in the UK thanks to crucial eligibility decisions being left to admin staff with limited medical knowledge and murky-at-best guidelines from CCGs to work with.
Whatever your struggle is at this moment in time, I hope this reminds you that you’re not alone. Our personal lockdowns may be ongoing with no end date in sight, but the same can be said for the chronic illness community. I truly don’t know what I would do or where I would be without this little online world of ours sometimes.
That said, I really hope there’s been at least one thing that’s brought you joy today. I’m sure you don’t need three guesses to figure out what mine was given how much I bang on about @nomochocolate but this egg was a serious 11/10 and quite possibly the love of my life.
Regardless of whether you can relate to this post or not, I’d absolutely love to hear how you’ve spent your day or something that’s made you smile, no matter how big or small. What’s made you happy today? 🥰🐣

BOOKS YOU NEED IN YOUR LIFE, January - March 2021.

BOOKS YOU NEED IN YOUR LIFE, January - March 2021. We’re bringing it back! 🥳📚
[#AD - titles marked with * were press copies]
🍃 Dew On The Grass by Eiluned Lewis. Autobiographical novel told through the eyes of a nine-year-old growing up in the Welsh borders. Probably the most under-rated classic I’ve ever read. If you fell in love with Anne Shirley, you need to meet Lucy Gwyn.
📦 Every Little Piece Of My Heart by Non Pratt. Chronically ill protagonist Sophie has to deliver letters to strangers to reach the bottom layer of a parcel from her best friend - who recently moved away with no warning or explanation. Scroll back a few posts for full fangirling on this one!
🗣 Stim edited by Lizzie Huxley-Jones. A stunning anthology of works by a diverse range of autistic voices that will make you feel... everything. Some of the contributions were so beautifully written they actually made me ache.
🧠 The Echo Maker by Richard Powers. Protagonist Mark has a fatal accident and is left with Capgras syndrome, convinced that his biological sister is an imposter in an identical clone of her. And that’s just scratching the surface of the story. Richard Powers is a literary God.
🙇🏻‍♀️ There’s No Such Thing As An Easy Job by Kikuko Tsumura. Burned-out worker seeks mundane employment that requires absolutely no writing or thinking. Perfectly captures the madness in the mundanity of working life, and quite frankly I don’t feel intelligent enough to express how cleverly this book was written.
🍓 The Split by Laura Kay*. After being brutally dumped, Ally legs it back to her childhood home armed with Malcolm, her partner’s cat. I’m convinced this book would make even somebody who’s never lived in Sheffield feel nostalgic for it. ALL the feels.
My micro-reviews need some work and I had a hard time choosing just six this quarter, but I’d *love* to know if any of these reads are on your list! I’ll also pop an affiliate link in my bio in case you like the look of any of them...
What are you reading at the moment? Any recommendations? 🥰📚

Something I think about a lot is how different my

Something I think about a lot is how different my whole working life might have been if I hadn’t had a positive first experience of employment. If I hadn’t been part of a disability charity and in a team who *got* it and were proactive in making sure things for me were as accessible as the role allowed, I might have had a completely different perception of working with a chronic illness... and moreover, my rights as a disabled worker.
For today’s blog post I just wanted to share a massive list of workplace adjustments that might be helpful for people with ME/CFS. Some might seem obvious, others are things I probably wouldn’t have known I could ask for or have been confident enough to discuss with an employer back when I was starting out - I really hope they’re helpful for those of you looking for ways to work more safely and sustainably.
I’m always a tad wary when it comes to sharing posts like these. It shouldn’t even need to be said that not everybody with ME/CFS is well enough to work, nor should they be expected to be. Not even all the reasonable adjustments in the world could magically make the employment and recruitment sector more inclusive for people with chronic illnesses and the issue runs far deeper than just individuals’ circumstances (I’m working on it!), but I really hope this blog post somewhat helps on a practical level in the meantime.
As one of the self-named in-betweeners trying to balance the demands of independent living alongside managing my condition, this is the sort of thing I would have found helpful back when I was starting out. Working with a chronic illness can be incredibly tough even at the best of times, so anything that can make the situation slightly less challenging and slightly more inclusive is worth sharing, right?
You can find the full blog post linked in my bio - it’s a big’un but I’ve divided it up into sections to try and make it a bit more brain fog-friendly. If there’s anything you’ve found helpful in managing work that I’ve missed, please do drop a comment on that blog post so others can see it too. Lots of other information and resources linked in there as well! 👩🏻‍💻✨

[#AD] “Over the next few months, people are goin

[#AD] “Over the next few months, people are going to be urging for things to get back to how they were before. And mostly, I am too. At the same time, however, I think it’s going to feel difficult to watch our society evolve back into an environment that systematically excludes disabled and chronically ill people, even more than they already have been by the invisible challenges during this pandemic.
It’s going to hurt, watching friends and loved ones reunite and go on nights out when more often than not I don’t feel well enough to join in.
It’s going to be tough watching people book holidays and new adventures when the tourism industry is still so inaccessible for those with additional needs… not to mention that the financial impact of the pandemic has hit many disabled people particularly deeply.
It’s going to affect me deeply if all of the progress we’ve made with changing perceptions of working from home and remote learning is suddenly undone when more people return to physical places of work and study.”
Some real talk from my latest post for @careco_mobility - you can read the full thing by following the link in my bio. Feels all the more poignant sharing this now, after yet another day of despair from dealing with impossible medical admin shenanigans and feeling utterly alone with it all.
I hope I’ve done it justice. Loads of love, gang.
[P.S. Still working on the cake 😏🍰]

Is it my birthday? Nope. Did I order myself a maje

Is it my birthday? Nope. Did I order myself a majestic birthday cake? Absolutely. How’s your lockdown going?
I’d been eyeing up @orinocoveganyork’s cakes for a good while and did originally order this for my birthday back in November, but because of lockdown shenanigans I decided to push it back... and then promptly forgot about it until a couple of weeks ago. And who would I be if I’d decided not to go ahead with it just because of the minor fact it’s not actually my birthday? Cake is ALWAYS a good idea.
Honestly, this last month or so has been the first time throughout this whole ordeal that I’ve been a little low. I’m struggling with my health, dealing with a belter of a medical admin situation that’s taking quite a whack at any feelings of self-worth, and to top it all off Janice the power-chair’s battery has chosen this time to completely stop working and drain from full to critical in the space of precisely three minutes. It’s all fun and games 😅😂
I may not have a solution for these things, but what I do know is that if I’m going to feel a bit sorry for myself, indulging in cake and watching my favourite comfort shows is the most elite way of going about it.
What are your go-to comfort shows? Mine are the usual culprits - Gavin and Stacey, Friends, old episodes of Gogglebox... but I’ve just started watching Gilmore Girls and it’s SO up my street. It takes me ages to get through series and I’m only on the first season so no spoilers plz, but highly recommend if you’re looking for something new to watch! 🥰✨

[#AD] Influential women changing the narrative on

[#AD] Influential women changing the narrative on disability? We love to see it 🙊🙌🏻
I’m so looking forward to @microlinkpc’s upcoming #GreatChangeGreatWomen webinars, lead by some iconic women who are influencing the disability agenda and shedding light on how we can all advocate for equality and bring about meaningful change.
I know from past work projects that Microlink themselves do really amazing things in the inclusive employment space so I’ve no doubt this series of events is going to be fab. There are some really amazing names lined up as speakers and I don’t mind telling you I’m a long-time fangirl of Caroline Casey in particular - her work with @thevaluable500 is changing the world and has already made a massive difference in my own line of work... and my life, actually. She’s just all kinds of wonderful.
You can see the full line-up of speakers and register for free tickets by following the link in my bio, gang!
The eight speakers lined up for these webinars are all big names, but I also know without doubt there are SO many incredible women doing what they can to change the narrative on disability. Just a few of the women I admire are @natashalipman, @charliclement_, @chloe_tear, @thisthingtheycallrecovery, @carrieannlightleyblog, @gem_turner, @chronicallybrown, @jomoss1975, @shonalouiseblog, @katestanforth, believe me, I could go on...
How about you? Who’s at the top of your list? Always looking for more incredible humans to connect with online 😌✨

As we approach the transition out of lockdown 3, s

As we approach the transition out of lockdown 3, something I’m becoming acutely conscious of again is how just daunting the challenge of adapting to ~typical~ everyday life again is starting to feel.
I’m as excited as anybody for some semblance of normality again, but I’m sure I won’t be the only one who‘s significantly lost some stamina and de-conditioned from spending even more time than usual alone and indoors. I’m cautiously ready for some of the restrictions to ease, but I don’t think I can say the same about my body just yet.
I’m finding parts of it quite difficult to explain - when I talk about stamina, I don’t just mean physical strength for things like walking and climbing stairs. I’m also talking about the challenges of just being immersed in everyday life again - tolerating a short drive in the car, being around multiple sources of noise at once, the exertion of being around people for significant periods of time. All of these things become immeasurably more difficult when you have any kind of chronic illness and I’ve found all of them challenging recently, even while we’re still in lockdown. Typically, I didn’t realise how much easier these things have felt to me over the last few years until they became difficult again.
I’m really trying not to feel too frustrated at what seems like having to start from scratch again... it’s just part of the process, right? It’s all about finding the balance between being proactive and finding your baseline, but also cutting yourself some slack and listening to what your body is telling you.
At the end of the first lockdown last summer, I did an informal livestream with Dr Sue Pemberton from Yorkshire Fatigue Clinic, all about the challenges of navigating life after lockdown when you have an energy-limiting chronic illness. Sue gave some really brilliant advice and answered lots of people’s questions, so if you missed it back then I’ll leave a link to the video in my bio. Really hope it’s helpful, gang! ✨
[Pic is from last summer, I have considerably less hair now 🙈💇🏻‍♀️]

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