My Chronic Illness Story: ME/CFS Onset, Diagnosis and Symptoms

pippa laid on sofa in mouse onesie, under duvet with open book resting on top

“Dear M.E,   

If this letter was part of an inspirational movie, I’m sure I would be saying a heartfelt thank you. Dramatic music would play whilst I’d gush about how becoming ill changed my life for the better and helped me discover more about myself as a person, whilst I waltzed off into the sunset with a handsome prince and some kind of small fortune due to a dramatic plot twist. 

Unfortunately, this is not an inspirational movie. Instead of waltzing off into the sunset, I manoeuvre an unreliable wheelchair along a questionably uneven pavement. Instead of finding a handsome prince, I concentrate on finding the most qualified medical professionals to manage my condition… with bonus points if they happen to be attractive, of course. And my plot twist isn’t a small fortune: it’s not knowing if, when or how I will ever get better.” 

– Excerpt from Dear Chronic Illness complied by Pippa Stacey, Wallace Publishing (2018)

 So, here’s the thing. Besides sharing snippets in my charity book, Dear Chronic Illness, never before have I sat down to write about my full chronic illness story. In all honesty, my main reason for holding back in the past has been because of the unavoidable unsolicited advice and judgement these sort of posts can unfortunately spark, but I was also skeptical of there being no real ‘point’… no two people experience chronic illness the same, and I firmly believe that everybody has their own unique path to follow. What could anybody else possibly gain from reading my story?

However, I recently had cause to reflect on my own early years with chronic illness. It would be difficult to forget the confusion, fear and grief during those days, never mind how it felt to discover the lack of information available for patients. Truthfully, one of the things that genuinely helped me make sense of it all was engaging with other people’s blogs and social media posts. Even if our circumstances differed (illness severity, age, geographical location…) reading about others’ experiences played an important role in helping me tentatively figure out the next steps.

So, whilst it’s incredibly important to highlight that my story is my own and not in any way representative of every person with ME/CFS, I’m putting it out there in case it’s in any way helpful. Here’s how it all went down…

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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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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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