Its Not All About ME

It's not as bad as I thought it would be! We're back after a little break with a walk and talk ep. We chat the stress, guilt and frustration of trying to maintain a schedule and keep appointments when you have a chronic illness. How do you adapt to the new normal and how on earth to you become cool with that? My old life - I wish I knew how to quit you. FANCY PICKING UP THE TAB FOR THE COFFEE? Support the show at https://ko-fi.com/inaam MUSIC – Feeling sunny by Scott Holmes from Free Music Archive. Contact us on the show at: @0allaboutme itsreallynotallaboutme@gmail.com Thanks all!!

Episode 29 The loneliness of the chronic illness experience As the world begins to explore getting back out into the world after months of isolation, we take a moment to think about those who will, once again, be left behind and missing. On a cheerier note, we have a bed of nails so all will be well. MUSIC – Feeling sunny by Scott Holmes from Free Music Archive Contact us on the show at: @0allaboutme itsreallynotallaboutme@gmail.com Thanks all!!

Episode 28 – One Family, Four kids with ME feat Sean and Niamh Henneberry Some time ago, 14 year old Sean got in touch asking if he could come on the show and share his experience of having ME (Myalgic Encephalomyelitis). As we were getting organized to have our chat he revealed that all four kids in his family have the chronic illness. In this, first of two special episodes, Sean and his sister Niamh share their struggles and hope for the future. Sign up to Sean’s Youtube page to get announcements about his stop motion animation at https://www.youtube.com/channel/UC93CCTn640Kgv8CfGURybOA/about MUSIC – Feeling sunny by Scott Holmes from Free Music Archive Contact us on the show at: @0allaboutme itsreallynotallaboutme@gmail.com Thanks all!!

Episode 27 – Older, Wiser, Kinder We are back from our “baby break” and ready to go. After a brief chat about life with ME and a new baby, we chat about our strong response and reaction to the recent tweet from Brianne Benness (@bennessb) that said “The distinction feels contrived, but my mental health really changed when I stopped asking "why am I so lazy" and started asking "why does my body need so much rest right now?" *apologies - does contain a little bit of swearing! MUSIC – Feeling sunny by Scott Holmes from Free Music Archive Contact us on the show at: @0allaboutme itsreallynotallaboutme@gmail.com Thanks all!!

Episode 26 and then there were three This week we share our experience of the first ten days of first-time parenthood and explore our hopes and fears as a parent with MECFS. Please do get in touch with your experience, tips and support. All will be most gratefully received! MUSIC – Feeling sunny by Scott Holmes from Free Music Archive Contact us on the show at: @0allaboutme itsreallynotallaboutme@gmail.com Thanks all!!

Episode 25 – feat. J E Barnard This week we are joined by writer and very-much all-round great person J.E. (Jayne) Barnard. Jayne shares her long term experience of ME and chats about how it affected the whole family and also how she realized she had to find her own questions, answers and treatment to be able to just get by. She takes us through her process of writing several (award winning) books while living with the full-time job of having ME and offers experience of how she dealt with expectation, responsibility, demand and adrenaline. The first books in her two series can be found on Amazon and are called When The Flood Falls (Falls Mysteries series) and Maddie Hatter and the Deadly Diamond (Maddie Hatter Adventure series). Jayne and her books can be found at: https://www.facebook.com/permalink.php?id=256291734780049&story_fbid=474069513002269 https://www.facebook.com/MaddieHatterAdventures/ @J_E_Barnard and @JayneBarnard1 on twitter MUSIC – Feeling sunny by Scott Holmes from Free Music Archive Contact us on the show at: @0allaboutme itsreallynotallaboutme@gmail.com Thanks all!!

Episode 24 – feat. Ros Lemarchand The French Femme This week we are joined by Rosalynde Lemarchand aka The French Femme. Ros shares her experience of ME as well as several of her poems that were inspired by the illness. Find her and her creative output here: https://www.facebook.com/pg/My-A-Z-of-ME-1403270009902127/about/?ref=page_internal MUSIC – Feeling sunny by Scott Holmes from Free Music Archive Contact us on the show at: @0allaboutme itsreallynotallaboutme@gmail.com Thanks all!!

Episode 23 – MECFS You Can Get Better – a walkthrough This week we return from a month off and share our experience of rigorously applying the guidance of Dr. David Smith’s MECFS You Can Get Better (http://www.me-cfs-treatment.com/wp-content/uploads/2013/03/Get-Well-Guidelines-Revised-2012.pdf). We share our day plan and how we have found the experience so far. MUSIC – Feeling sunny by Scott Holmes from Free Music Archive Contact us on the show at: @0allaboutme itsreallynotallaboutme@gmail.com Thanks all!!

Episode 22 – Chronic Illness and weight gain This week we explore the deeply personal subject of weight gain when suffering from an illness such as MECFS. We chat about the frustration of losing the ability to exercise and look at how our relationship with food can change when a tasty treat might now be a highlight of a day. We also hear from other folk who have ME and are dealing with an issue that can have major consequences on not only our physical but our mental and emotional wellbeing as well. Thanks to @katrianabrandt, @carolineranere, @mishka0808, @sleepyjen, @dis_praxiic and @mcfindoone for their contributions MUSIC – Feeling sunny by Scott Holmes from Free Music Archive Contact us on the show at: @0allaboutme itsreallynotallaboutme@gmail.com Thanks all!!

Episode 21 – feat Antoinette and Anne, ME Support Northern Ireland This week we share a recent chat with Antoinette Christie (Founder and mother to a son with ME) and Anne Smyth (benefit support and person with ME) from ME Support Northern Ireland. Recorded during Awareness week 2019 they share their honest and frequently heart-breaking experience of the illness and tell us what their organization is doing and plans to do in the future to support those living with ME. Their new website is http://mesupportni.com/ MUSIC – Feeling sunny by Scott Holmes from Free Music Archive Contact us on the show at: @0allaboutme itsreallynotallaboutme@gmail.com its not all about me podcast on Facebook (closed group) Thanks all!!

Episode 20 = How Are You Doing? Part Two This week having had time to reflect, consider and incorporate the experiences of fellow folk with ME, we return to the complexities of answering the simple question, How you doing? On the way we discuss “coming out” as someone with ME and ask if we are doing our loved ones an injustice when we don’t share the full details of our illness. MUSIC – Feeling sunny by Scott Holmes from Free Music Archive Contact us on the show at: @0allaboutme itsreallynotallaboutme@gmail.com its not all about me podcast on Facebook (closed group) Thanks all!!

Episode 19 – feat. KT King This week we are joined by the fabulous KT King, author of Little Eden. We chat about the hard realities of chronic illness, the importance of good friends, how she represents MECFS in her writing and why everyone should find their Jessica Fletcher Hour. KT King and her books can be found on linktr.ee/ktkingbooks MUSIC – Feeling sunny by Scott Holmes from Free Music Archive Contact us on the show at: @0allaboutme itsreallynotallaboutme@gmail.com its not all about me podcast on Facebook (closed group) Thanks all!!

Episode 18 – How are you doing? This week we consider the difficulties in trying to achieve any kind of consistency with MECFS then jump into an exploration of how to answer the surprisingly complex question, ”Hey, how you doing?”. MUSIC – Feeling sunny by Scott Holmes from Free Music Archive Contact us on the show at: @0allaboutme itsreallynotallaboutme@gmail.com its not all about me podcast on Facebook (closed group) Thanks all!!

Episode 17 - The definition of insanity and hope. This week we react to the realization that we have given up on trying to recover and ponder what hope of change we should expect as we once again try to tackle the illness. MUSIC – Feeling sunny by Scott Holmes from Free Music Archive Contact us on the show at: @0allaboutme itsreallynotallaboutme@gmail.com its not all about me podcast on Facebook (closed group) Thanks all!!

Episode 16 – featuring John Peters. Hi all. This week we had our long-awaited chat with John Peters. In a honest and passionate exchange, John shares his long experience with myalgic encephalomyelitis. Among many other subjects we discuss the viral foundation of his illness, the difficulty in processing social situations, the PACE trial and changes in medical opinion over the last three decades. In the chat John recommends checking out the Science for ME site at https://www.s4me.info/ John can be found on twitter @johnthejack Contact us on the show at: @0allaboutme itsreallynotallaboutme@gmail.com its not all about me podcast on Facebook (closed group) Thanks all!!

Episode 15 – Doctors, diets and being the expert of your own illness. This week we chat about a recent trip to the doctor and consider how it feels to be the “expert” of your own illness. Also discussed is the loss of the company of books and an update on the ongoing pacing and activity diary. Contact us on the show at: @0allaboutme itsreallynotallaboutme@gmail.com its not all about me podcast on Facebook (closed group) Thanks all!!

Episode 14 – featuring Rosa Devine. Back once again folks. Hope you are well. After a week off due to symptoms getting a tad severe we return to chat with Rosa Devine. Rosa set the MECFS corner of the Twitterverse alight a couple of weeks ago with her comic strip on her illness and a long interview with the Irish Times (see below). She chose to come on the show and share her experience and we are mighty grateful that she did. Massive identification and some mind blowing new ways of looking at the illness. Hope you get the same impact! Rosa’s comic and interview with the Irish Times can be found at https://www.irishtimes.com/life-and-style/health-family/chronic-fatigue-syndrome-it-was-like-a-switch-had-been-flipped-i-couldn-t-stand-up-1.3791330 Her website is at https://rosadevine.com/ Her Irish language comic is at https://greannan-an-lae.tumblr.com/ Contact us on the show at: @0allaboutme itsreallynotallaboutme@gmail.com its not all about me podcast on Facebook (closed group) Thanks all!!

Episode 13 – This week we share experience of Couch to 5K training, celebrate the upcoming Millions Missing week-long event and chat about the painful first time having to use accessible seating at a concert. Brutal honest experience as always. Contact us on the show at: @0allaboutme itsreallynotallaboutme@gmail.com its not all about me podcast on Facebook (closed group) Thanks all!!

Episode 12 – This week we are joined by Retha from the MECFS Foundation South Africa. Retha shares her experiences of living with MECFS including raising children while ill, scheduled resting, ME in South Africa and talks about the foundation she set up to help others who have the illness. Retha and the organization can be reached at: Twitter - @mecfs_sa Facebook – MECFS Foundation South Africa www.mecfssa.org info@mecfssa.org Contact us on the show at: @0allaboutme itsreallynotallaboutme@gmail.com its not all about me podcast on Facebook (closed group) Thanks all!!

Episode 11 - This week we mix gratitude with a raw and recent experience of the true powerlessness that this illness can bring. Contact us on the show at: @0allaboutme itsreallynotallaboutme@gmail.com its not all about me podcast on Facebook (closed group) Thanks all!!

Episode 10 – This week we are joined by the wonderful Jack Croxall. Jack shares his experience of MECFS and chats about, among other things, managing adrenaline, therapeutic video gaming, striking a balance between rest and physical pursuits and the growing strength of the MECFS community. Really good times! Jack can be found at @jackcroxall and jackcroxall.co.uk. His blogs can be found at allieseverywhere.org. Check out his own podcast on video games at Game Chats Podcast and find his books on Amazon – just look for Jack Croxall (he recommends starting with Anchor Leg). Contact us on the show at: @0allaboutme itsreallynotallaboutme@gmail.com its not all about me podcast on Facebook (closed group) Thanks all!!

Episode 9 - This week we reflect on the UK parliamentary debate on ME, big up Yoga Nidra and explore the dilemma of opportunities offered to us when we are ill. Share and subscribe then get in touch with your experience - t : 0allaboutme e : itsreallynotallaboutme@gmail.com fb : its not all about me podcast

Episode 8 - This week we are joined by Jess Goyder (reemerging.co.uk)who shares her experience of living with ME. Jess can be reached at @JessGoyder. You can also check out a recent speaking appearance she made at https://www.youtube.com/watch?v=fPj2Wur8P-M where she shares some of her keys to living and thriving with ME. As always, share and subscribe till you burst then contact us on: t : @0allaboutme e : itsreallynotallaboutme@gmail.com fb : its not all about me podcast

Episode 7 -Featuring a chat with Maggie talking about living with someone living with MECFS. Not to be missed! We also chat about the upcoming uk parliamentary debate on mecfs, pacing and consider the two faces of ME. t : 0allaboutme itsreallynotallaboutme@gmail.com fb : Its not all about me podcast

INAAM ep 6 - Activity tracking and acceptance. This week we chat about how the first steps into pacing are going and explore the difficulty in accepting having an illness such as this. Subscribe, share and get in touch! t : 0allaboutme fb : It's not all about me podcast e : itsreallynotallaboutme@gmail.com

Merry Christmas and Happy Holidays to you all @0allaboutme itsreallynotallaboutme@gmail.com

Episode 5 - Pacing. We take an episode to learn about pacing thanks to the booklet from Action For ME at https://www.actionforme.org.uk/uploads/pdfs/pacing-for-people-with-me-booklet.pdf @0allabout me itsreallynotallaboutme@gmail.com

Episode 4 - Coping and complex mathematics. Shout outs to Mauro Ranallo, Meditation Minis podcast, Couch to 5K, Me Association and the Fabulous app. @0allaboutme itsreallynotallaboutme@gmail.com FB - its not all about me

Episode three - Where it gets real as we chat about the mental, emotional and spiritual consequences of having this illness. @0allabout me itsreallynotallaboutme@gmail.com FB - Its not all about ME

Episode two. Where we discuss MECFS symptoms and podcast coffee etiquette. Enjoy! @0allaboutme itsreallynotallaboutme@gmail.com FB: Its not all about me

Episode one of the It's Not All About ME podcast. A welcome, an introduction and a story about a guy who might be called Flarry. Twitter: 0allaboutme Email: itsreallynotallaboutme@gmail.com