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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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I’m making an effort to share more of the realit

I’m making an effort to share more of the realities of chronic illness and avoid falling into the highlights reel trap with what I post online, so you are completely welcome for this ravishing selfie snapped earlier. Still felt the need to put a slight filter on it but one thing at a time, hey?
So here’s the thing I’m struggling with at the moment. I know when I need to rest, and I take it upon myself to rest… but my rest doesn’t feel restful. Don’t get me wrong, both sleep and rest have never recharged me very effectively (such is the nature of my chronic illness), but something seems a bit off at the moment.
Things are busy, a good kind of busy, and it’s definitely not the same sensation as burnout. It kind of feels more like being… unsettled? Like I can probably keep going, but I know that doing so won’t end well, but that my body wants me to try anyway…
Can you relate? What do you do to help your rest feel restful?
Mindfulness was my go-to for a good few years so I logged on to Calm today, only to find the bulk of it is now behind a paywall. I’m not massively keen on Headspace so I’d also be grateful for any other recommendations if you know of any!

Last week my best pal and I booked a somewhat spon

Last week my best pal and I booked a somewhat spontaneous stay in a woodland cabin in quite a remote part of North Yorkshire… no wifi, only books, gorgeous surroundings, and a majestic fire pit that we took *full* advantage of.
We had two very chilled out days plus a significantly more chaotic day in York City Centre which I’ve made a little vloggy vlog out of - it’s up now and linked in my bio. This one involves clothes shopping and slightly disappointing food (but DREAMY liquid nitrogen ice cream to make up for it), as well as all the usual wheelchair and access palavers. I dream of the day I can do one of these videos without the accessibility shenanigans…
If you’re a mini-break enthusiast, do you enjoy stays like these? For me it’s a delicate balance of wanting to go places that are remote and slightly quirky but also being able to rest and stay there relatively comfortably, and get around without a car. If you have any recommendations, especially places with good public transport links, I’d really love to hear them! 🚏🗺

If you’re reading this as somebody with a chroni

If you’re reading this as somebody with a chronic illness, the chances are you’ll have had a good dollop of unsolicited advice over the years.
In a nutshell, unsolicited advice is when somebody makes suggestions about what a person should or shouldn’t be doing, even when their opinion is not wanted or needed. In the context of health, this often means disabled and chronically ill people are regularly fielding suggestions about how to ‘treat’ or ‘cure’ their disability.
In the online community, we’re often advised to just block or ignore unsolicited advice - and we do. The problem, however, is that sometimes it pops up in situations where it has to be handled appropriately and nipped in the bud. And my goodness, it can be exhausting.
For me, it’s usually with work-related contacts where it becomes an issue. It’s happened countless times - conversations not even remotely to do with my health somehow end up with people trying to ‘fix’ my illness. The difficulty is knowing that these suggestions are genuinely well-intentioned, but also knowing that if I don’t put a stop to it now, it’s only going to escalate. And that’s where it becomes exhausting. I have to spend valuable time and energy trying to mediate a situation that could and should have been avoided.
So, here’s what you should know about unsolicited advice:
- Whatever you’re about to suggest, there’s a 99.9% chance the person already knows of it, has tried it, or has *entirely valid* reasons not to try it. Just because it was suitable for somebody you know, doesn’t make it suitable for everybody.
- It’s only okay to approach individuals directly with medical advice when, and only when, somebody specifically asks for it. It’s not okay in literally any other situation.
- There are *much* more impactful ways of being a chronic illness ally than trying to treat the medical aspects of chronic illness. Listen to and learn from the person - always take your lead from them.
What do you think? Anything you wish more people knew about dealing with unsolicited advice?

Throwback to my happy place at @barterbooksuk. Alr

Throwback to my happy place at @barterbooksuk. Already strategising how and when I can get back there one day…
No real purpose or intention with this post but I wanted to ask, what kind of books are you enjoying at the moment? Any really amazing reads lately?
My taste in books seems to be changing quite a lot these days. I want to be reading more literary fiction whenever my brain is up to it, but I’m so picky with what I most enjoy that I sometimes end up reading stuff I’m completely disinterested in and disengage with, which puts me off trying anything else for a while.
I’m also trying to finish the last few Children’s Classics in the Wordsworth Editions collection (though I’m midway through Treasure Island at the mo and not really enjoying it…), and there’s a squillion YA books I’m desperate to reread too. Think I’m having a bit of reading overwhelm, but… in a good way, almost? So many books, so little time. Gah.
I also know you lot happen to be amazing at book recommendations, so if you have any suggestions for literary fiction or YA reads, I’m all ears! I love contemporary reads that are quite introspective and character driven, I have zero patience for romance, and I’m desperate to find more storytellers like Richard Powers. I’ve just finished Generosity and even though it was probably my least favourite of the three of his I’ve finished so far, it’s still one of the best books I’ve read this year. The way the author had to interject and almost apologise for where the characters were leading him and the anguish with how it all tied into the subject matter… it’s unlike anything I’ve read before.
How about you? Any really amazing reads lately? I’d love to hear about them 😋📚

Lovely people, can anybody recommend a white noise

Lovely people, can anybody recommend a white noise machine for sleeping? Pic’s from a campaign that never went ahead but you’ll usually find me with noise-cancelling headphones surgically attached to my face so it kind of works here, right? 🙈🤫
Long-story short, I have quite a bit of noise disturbance at night where I live. And because I’m not the best sleeper as it is, it’s not a fun time. I already have all other measures in place (so no need to suggest things like earplugs etc!) but what I’m keen to hear about are any personal experiences with white noise machines. From what I’ve read so far I’ve learned it’s not actually ‘white noise’ that’s emitted from the machines, but I believe that’s what they’re most commonly known as!
The starting point people usually suggest is to try using videos or sounds through your phone, but as I turn mine off a few hours before bed as part of my routine (my sleep situation has required quite a bit of input and occy therapy over the years 🙈😂) that’s a no-go for me. What I’m after is just something I can leave put in my bedroom and turn on/off as needed, if you get me?
If you have one, how have you found it? Any brands you would or wouldn’t recommend? Ideally not too spenny but equally I don’t mind investing if it’s genuinely effective.
Thank you so much in advance for any advice!
(Majestic eye mask is from @themirandashop’s collection last year. They have a gorgeous range with profits donated to chronic illness charities, and queen @realmirandahart has been a wonderful supporter of @astriidcharity over the last 18 months!)

Chronically ill students may not always be well en

Chronically ill students may not always be well enough to attend in-person contact hours. Those with energy-limiting chronic illnesses have to factor in the exertion of getting ready, leaving the house, travelling to university, and handling the sensory overload of being around other people… before teaching even begins.
In the past, students who’ve asked to have lectures recorded and/or made available online so they can study from home have been told this request was unreasonable, too much additional work, or otherwise impossible to accommodate.
During the pandemic, however, universities were forced to adapt their teaching. Change happened practically overnight, and students with chronic illnesses finally had the tools they needed to study remotely.
Many assumed this shift would lead to improved inclusion in the future. After all, we’ve now seen that accommodating this request isn’t inherently unreasonable or impossible.
However, students beginning or returning to university in 2021 are already being given an ultimatum: physical learning, or no learning. Online learning has once again become an anomaly, rather than a viable option for a reasonable adjustment.
The main critique of online learning seems to be that it increases the workload of staff. However, it doesn’t have to be this way. Online lectures don’t have to be especially facilitated – simply having a camera filming in the back of a lecture hall can make a huge difference to disabled students’ studies.
If remote learning would suit your condition management, don’t be afraid to fight for it. Speak to your university’s disability advisor, and push for this to be part of your support plan. If this adjustment isn’t agreed, you can appeal the decision and make a formal complaint – further guidance can be found on Scope and Disability Rights UK’s websites.
Colleges and universities have ‘a legal duty to try to remove the barriers you face in education because of disability’. Be prepared to explain how and why this adjustment decreases the barriers you face, and never be afraid or ashamed of advocating for what you need to make the most of your education. You got this. 🎓✨ #ChronicStudying

A photo dump of things that made my heart happy th

A photo dump of things that made my heart happy these last few months 😇
1. Finally wearing this @fatface playsuit I bought over a year ago - this was part of their Marine Conservation Society collection which raises funds and awareness for their work reducing marine pollution, and most crucially, has pockets
2. ASDA’s new giant vegan birthday cookie which was nobly and selflessly bought for @juddabelle’s birthday and not *at all* because I wanted it myself
3. Writing in a coffee shop and not even being able to mock the stereotype because it was absolutely glorious
4. Sprout the cat living his very best life
5. Pippa the human living her very best life
6. The village tearoom in Alnmouth - staff told us a mystery knitter has been leaving these majestic tea cosies at the shop for them for years and they genuinely have no idea who it is
7. Reading Generosity and becoming even more awestruck by Richard Powers’ writing
8. Satisfying the inexplicable craving for a red and blue slushie and feeling like a tweenager at a bowling party
What’s made you happy lately? Whether it’s something big or small, I’d love to hear all about it!

ON THE 'BUT THEY DIDN'T LET IT STOP THEM' NARRATIV

ON THE 'BUT THEY DIDN'T LET IT STOP THEM' NARRATIVE [CC]. I’ve been slacking on turning some of my most-read blog posts into IGTV and YouTube videos and this one turned into a bit of a ramble, but here are my thoughts on the ‘but they didn’t let it stop them’ narrative.
It’s a statement we so often see applied to disability and health conditions, as well as this bizarre notion that people have conscious control over whether or not they ‘let’ their disability impact their goals. Perhaps some people find it motivating, but it’s safe to say I’m not the biggest fan… 🙅🏻‍♀️
Can you relate? Or do you have a different take on this? I’d love to hear your thoughts!

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