Ep.9 - Return / Long Covid Advice

After a long break, the show is back up and running (well, sitting!) - a welcome to new listeners, and some brief intro advice to people who may have sought out the podcast because of Long Covid. Tap into the wisdom of the ME/CFS community in regards to Exercise: contentiously, perhaps counter intuitively, not recommended. Try restorative rest, and pacing instead - so as not to exacerbate or develop ME/CFS, as it's an established origin story for many ME/CFS sufferers who pushed themselves after a viral illness. Helpful ME/CFS information can be found here:www.actionforme.org.uk @actionforme on Twitter@mecfsnews on Twitterwww.meassociation.org.ukTwitter tags: #millionsmissing #pwME #MECFS ---Follow the podcast on Instagram @beingtiredpodProduced by The Pod FarmMusic by Oliver BlakeArtwork by Gem Davis

We cannot think our conditions away - we cannot 'positive vibes' or yoga or meditate them away - they are not figments of our imagination, or lifestyle failings. This week I talk about acceptance - many of the tips I share in this podcast are for self care / managing mental health / adjustments we can make in lifestyle or mindset etc. This is to support and ease our experience of chronic illness, NOT as a cure, or based on a belief that the origins of the illness are in the mind/lifestyle failings. It's important to take care of ourselves in lots of different ways - managing a chronic illness is challenging, and a strain on our mental, emotional and physical health - on TOP of the 'base' symptoms of our conditions. But I want to take today to also pause and remind ourselves that in our quest for easing/managing our fatigue, we can often get caught up and send backhanded messages to ourselves that we aren't good enough as we are.Some days we need to consciously take the decision to accept how we feel, instead of constantly fight it / tweak it / change it, at the detriment of our actual experience of life. We can be sleepy zombie babes, and still do stuff (within reason/not pushing ourselves) - we don't have to wait for "good days" to be whole people.Also featuring a poem from @rubyetc and a Tweet from @Wheelsofsteer and a call-out for next week's episode: Dating, with a chronic condition.Artwork by Gem Davis | Music by Oliver Blake | Edited by The Pod Farm~~ Follow the podcast on social media @beingtiredpod ~~

Our society places a lot of pressure on "achievements" in a very limiting way, and the value placed in a limited definition of "productivity" can be alienating and emotionally destructive for those of us with chronic conditions who cannot perform tasks in this way. We need to re-learn how we view "productivity", place the focus on how we *spend our time* whether or not a task gets done. In this episode I discuss my own struggles with this "Productivity Myth" this week as I try and 'kondo' my clothes and it takes so much longer than I anticipate, as we can do when we forget to adjust to our limitations, and be kind to ourselves in our thinking. Also continuing on my quest for media representation of chronic illness - talking about Dr House on a skateboard, the wonderful Jameela Jamil, and Stacey (Mallory?!) from the Babysitter's Club. Also She-ra again because...it's sublime and I heart it. #TeamCatradoraArtwork by Gem Davis | Music by Oliver Blake | Edited by The Pod Farm~~ Follow the podcast on social media @beingtiredpod ~~

This week I give you an exercise - daily gratitude lists. I explain what they are, why they are invaluable and transformative, and how to do them - following Gillian Anderson & Jennifer Nadel's format taken from their book "We: A Manifesto". This exercise is extremely useful for my fatigue management, because of its' cumulative effect on mental health, it can pull you through on bad days. Fatigue is not only 'pure fatigue', but the things that pile on top of it and affect your overall experience - depression, anxiety, stress etc. Self care of this kind is a useful tool for managing your experience of fatigue on both good and bad days, a holistic approach to both physical and mental health.Let go of any pre-conceived notions of "hippy dippy nonsense" and do the work to support the complex experience of your health, and life.Also: how amazing is Gillian Anderson in Sex Education?? *heart eyes*---Artwork by Gem Davis | Music by Oliver Blake | Edited by The Pod Farm~~ Follow the podcast on Instagram @beingtiredpod ~~

In this episode, I explain The Spoon Theory, and why you may hear some people refer to themselves as 'spoonies' in the chronic illness/disability community. How the adorable analogy works, where it originated, and how it is used - as well as why I don't use it, in favour of my own analogy about phone battery! I also call for any examples of representation in the media in terms of characters with chronic fatigue, citing the new series of She-ra as an example of excellent representation (even though it turns out they didn't do what I thought they did with the character *facepalm*) ---Artwork by Gem Davis | Music by Oliver Blake | Edited by The Pod Farm~~ Follow the podcast on social media @beingtiredpod ~~

In a special standalone episode, I talk about how those of us with chronic conditions (or invisible illnesses) can be dismissed, disbelieved or gaslit by doctors, and talk about my own experience with this which resulted in dangerous, debilitating illness. Important to note: this was recorded BEFORE Covid-19, I stand in full support of the NHS and the amazing work that the gamut of NHS staff do. They ARE heroes, and need to be treated, paid, supported systemically as such - coronavirus should highlight our gratitude and push the government to make change #stopprivatisationBUT this is about a different (important and prevalent) matter - navigating doctors appointments, for those of us who have an invisible illness / symptoms that are usually not taken seriously. 

Fatigue means you have to prioritise your time and energy, which feels limited, and valuable. This week I'm talking about the benefits of outsourcing tasks where possible, using my own podcast as an example, and telling you not to feel guilty about this. Accepting help / not doing everything yourself, *has* to be a mindset for those of us with chronic fatigue. Use it to become grateful for the people around you whom you can lean on. People like to feel useful, especially for those they love! Shop for things that might be useful - and if anyone has a cool looking granny trolley for sale, please let me know! Also following up on Terminology after last week, how fatigue is comparable to jetlag, and somewhat dramatically - like poison. Also with some useful input from @journeywithjodie who shares an annoyance about ME crash times. And why it's sometimes nice to hear non-spoonie friends talking about their 'regular' tiredness. ---Artwork by Gem Davis | Music by Oliver Blake | Edited by The Pod Farm~~ Follow the podcast on social media @beingtiredpod ~~

What words do we use to describe our daily experience of chronic fatigue? Tired? Exhausted? Knackered? Fatigued? Sleepy? This episode explores the Terminology of fatigue, how the words we choose affect how others view our experience, the limitations of the words, and asks: are there better ones?Also introducing Graded Exercise Therapy during lockdown - and after having had coronavirus. How to get back on the GET program - my experience with it so far. Also featured: a noisy bird out the window.---Artwork by Gem Davis | Music by Oliver Blake | Follow the podcast on social media @beingtiredpod

In this episode, helpfully released after the first one (facepalm), I introduce myself (Steph Dylan) as the host of the Podcast, and explain briefly my journey with chronic fatigue following NMDA Encephalitis, as well as what to expect from the Podcast. Artwork by Gem DavisMusic by Oliver BlakeFollow the podcast on social media @beingtiredpod