Jo’s Healthful Story(TM) through Myalgic Encephalomyelitis (M.E.)

*Jo's Healthful Journey™ through Myalgic Encephalomyelitis

*Jo's Healthful Journey™ with Myalgic Encephalomyelitis

Join us for an interview with Jo and discover how he has been able to manage through her journey after diagnosis with Myalgic Encephalomyelitis. This is Jo’s Healthful Story™. Please note that the video may only play in landscape mode on a mobile phone.

Diagnosis

Treatment

Lifestyle

Navigate Jo’s Journey with Myalgic Encephalomyelitis

0:21 My name’s Joe Bruce my. I’m from Edinburgh in Scotland I love it here it’s a beautiful city and I’m very lucky to live here people come from all over the world actually I didn’t start off here I came from a little town in Devon and like a lot of people I went to University or what you’d call College I fell in love with the city that I went to college in and stayed and my whole life has been here since

2:26 It wasn’t really me that noticed. It was my husband that noticed and so I would get sick more than other people I would you know if there was a bug going around the office I would catch it if there was a cold I would catch it but I. I wouldn’t just get the cold it would turn into a chest infection or I wouldn’t just feel sick I would get a gum infection anything would turn into an infection so it was I think I ended up with chest infections and being on antibiotics a lot more than than is normal

3:36 Then over the space of about five years six years it went from needing to be off for a week at a time to needing to be off for like four weeks at a time or six weeks at a time and slowly the time that I needed to take off and how exhausted and just sick I was feeling people people misunderstand M.E. is just feeling tired all the time but there’s so many other symptoms my stomach was constantly upset I would faint I would have these awful headaches I would have nausea I would have pain that migrated around my body and over time this just snowballed. I don’t know at which point it went from me being healthy more than sick to sick more than healthy but that

6:57 But what happens is the more I push the sicker I get and that’s why it’s so important to say to people with long covered now that you mustn’t push through you must stop and rest and pace yourself don’t push because if you push you will end up like me I pushed for 13 years and ended up permanently disabled because of it as the time went on no matter how hard I tried my ability to sustain whatever activity I was trying to do consistently grew shorter and shorter and shorter so by this time we’re in like 2015 so over two years my husband sat me down and he’s like you have to stop you just you have to stop you’re gonna kill yourself you’re gonna end up in hospital permanently bed bound

9:39 What are the things that have powered you through and continue to keep doing a lot of the wonderful things that you’re doing for the M.E. (ME/CFS) Community? I’m going to be really sloppy here and say it really is about love so lucky to be loved as much as I am by my husband I really really love him and he he really lets me feel loved the love of him and the love of my two fluffy boys are what keeps me going also a sense of Injustice keeps me going. I want us to be kind of the last generation it goes through this you know. M.E. runs in my family and when my little sister got diagnosed that was when I felt that okay it might be too late me but I don’t want it to be too late for her I’m gonna keep doing whatever I can for as long as I can and even if that’s just being noisy and kind of annoying you know just keep the noise going if it helps one person more if it helps one doctor to hear or or what I’m experiencing now actually is a lot of medical Frontline people who have long covered starting to recognize that they might be developing a me you know the opposite of noise is silence and nothing happened if it’s silent so that’s right the the bad bad messages fill the silence so we we need to make sure it’s our messages and our stories that are filling the silence. The one last thing I would say to everyone make room to laugh every day you know even if it’s something stupid even if it’s at yourself you know that keeps me going too love comedy my husband makes me laugh every day you have to laugh so love and laughter the biggest things in the world

I want us to be kind of the last generation it goes through this you know. M.E. runs in my family and when my little sister got diagnosed that was when I felt that okay it might be too late me but I don't want it to be too late for her

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