For The ‘In-Betweeners’: The Invisible Challenges Of Moderate Chronic Illness

two images of pippa. left image features pippa in pyjamas, holding soft toy, with nose cannula and headgear, right image featuring nice dress and hair and make-up done for going out

I vividly remember writing this piece on a difficult afternoon where things felt, as they so often do, rather hopeless. At the time I decided there wouldn’t be any value in putting this out into the world, especially with this post being rather more sombre than my usual writing. However, after discussing the topic with friends and seeking their feedback, it feels like the right time to finally share these musings. So today, let’s talk about the invisible challenges of being an ‘in-betweener’, moderately affected by chronic illness…

Update/ Disclaimer: ever since I first published this piece, I’ve been rather bombarded with emails offering advice and opinions on the issues discussed below. Whilst I recognise that many of these messages have come from a kind-hearted place, I wanted to reiterate that in any of my work, unless stated otherwise, I am not seeking advice or assistance of any kind. Please keep reading until the end of the post, where I discuss the ways I’m dealing with some of these issues; many of the suggestions people have been quick to point out have already been mentioned in this very piece. I appreciate you reaching out, and I don’t want to seem dismissive or ungrateful, but the very best thing you can do for me is saving the valuable time and energy you’ve used in reaching out, for yourself. Thank you for your understanding!

Before we go anywhere with this post, it’s important to make clear that I recognise my privilege. I live in a country with a healthcare system free at the point of us, I have supportive family and friends, I experienced a good education and have a regular-ish income. Although I’m chronically ill, my condition could affect me much, much more severely than it currently does. I can and do count my blessings on a daily basis, and I mean that sincerely.

Today, however, I’d like to talk about the difficulties of my current situation and in doing so, I hope you’ll keep an open mind. Chronic illness can so quickly turn into the ‘who has it worse’ game, particularly online, and I hope that my own little corner of the internet can steer clear of these shenanigans. Please do keep reading until the end and hear me out, because I have no doubt that I’m not alone with this one.

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Adaptive Skiing and Disability Snowsport with Snozone Castleford, Yorkshire [AD]

pippa in powerchair, next to wall sign reading welcome to snozone

[AD] Thanks so much to the team at Snozone Castleford for inviting me to visit and for sponsoring this post: more information all about disability snowsport can be found on their website. As always, thoughts and opinions, along with adaptive skiing fangirling, are entirely my own…

It’s safe to say that blogging and writing have presented many opportunities to push myself out of my comfort zone, and there’s no example more illustrative of this than the email in my inbox asking if I’d like to give adaptive skiing a go. As somebody who thrives in a safe, comfortable environment with a cup of tea and a packet of biscuits, I was quite surprised at how keen I found myself for this experience right from the beginning, and it’s safe to say it completely lived up to my expectations.

So, how do you get a vertically challenged, cold-averse individual with limited upper body strength to, y’know, ski? Fortunately, Snozone have this down with their Disability Snowsports programme, based in Castleford, just a stone’s throw away from where I live, and also Milton Keynes. With the aim of making snowsports as accessible and inclusive as possible, both venues boast highly qualified and skilled coaches and adaptive equipment designed to accommodate a range of different disabilities and impairments, ensuring their facilities can be enjoyed by as many people as possible.

To give you an idea of my own experiences hitting the slopes, let’s break this down. Here are five of my worrisome expectations going into the session, vs the surprising reality…

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Aids and Equipment for Managing Fatigue [AD]

pippa sat cross legged on bed holding up sign that says 'it takes me twice as much energy to achieve half as much as my peers'

[AD] This piece is sponsored by CareCo Ltd and features affiliate links. More information can be found at the bottom of this post!

Something that comes up a lot in conversation is how I negotiate living independently whilst dealing with long-term chronic fatigue. And whilst that’s a broad topic to tackle all in one go, I thought I’d begin to answer that question by sharing some of the aids and equipment I use in day-to-day life that help me to manage my symptoms.

There are various things out there to assist with practical tasks, and technological advances are increasing by the day, but I wanted to think about how these could be applied to fatigue in particular. You’ll see from the list below that the items I use range massively: some are bigger, more costly mobility aids specifically for disability, whilst others are cheap and cheerful household products.

I’m sure that anybody reading this will already be aware that different things work for different people, and it’s all about finding what works best for you and your lifestyle. And for me, the things that work include the following…

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