Monday, 6 May 2019

Video for Action for M.E. (CC and with transcript)



Today marks he beginning of ME/CFS Awareness Week.

Action for M.E. have asked me to put together a short 5 minute video to talk about my experiences of living with M.E. and how I cope with having the condition to help them with the amazing work that they do for people like me and the 250,000 other people with ME/CFS in the UK.

I've put the video up on YouTube and added in subtitles so you can see it too.

You can also find the video, article and transcript on Action For M.E.'s news page ⇨ here

It's also been published on Action For M.E.'s Instagram and my Instagram @dairyofazebra_blog

I could have talked for a lot on longer as the condition is so complex and affects each person individually.


Video transcript:

"Hi, my name's Naomi and I have a condition called M.E. Before I became ill I was at University studying nursing; I than started to have symptoms and I used to get frustrated with myself a lot wondering  "why am I so tired?"; "why am I in pain all the time?"; "why can't my body function in the way that I want it to?" And when I got my diagnosis it was almost like a weight had been lifted because I could finally stop blaming myself and I knew the reasons behind my symptoms. 
My life now is very different, I used to be very active, I used to go to the gym a lot, do yoga, swimming and now even going from the sofa to the kitchen is exhausting. 
I find it very difficult to plan my days. Often I have to plan around my health which is very unpredictable. I might wake up in the morning feeling fine and then it gets to the afternoon and all I can do is sleep. 
I have to cancel a lot of plans. Most of the time I only leave the house for hospital appointments. Sometimes I can manage to go out with my carers to run a few errands. 
All of the symptoms of M.E. are really difficult but I'd say some of the more difficult symptoms to live with is the Post Exertion Malaise, which is often referred to as 'payback', so that's the payback you have for doing an activity. So if I've had a shower I might need to have a nap afterwards. If I've gone to London for a hospital appointment I might need to spend the next days in bed. The cognitive dysfunction is also quite difficult. I get quite frustrated because I get confused quite easily; your brain is just like going in slow motion. You struggle to work tasks out, so you'll try and make a cup of coffee but instead of picking up a spoon you'll pick up a fork because you're brain just can't work things out. And it's like a ball is coming towards you, and you know that ball is coming towards you, but you don't realise it until its hit you in the face because your brain is just so slow. 
Some of the things that I've found help me to live with M.E. are letter writing which gives me that social interaction that I'm not able to do in person because of my M.E. I do have one pen pal that also has M.E. as well so we're able to relate to each other. 
Another thing that I do to try and raise awareness about being a young person with M.E. and other chronic illnesses and disabilities is blogging. So I have a blog where I write about my life and what it's like to live with disabilities and being a young person with chronic health problems to give a real picture of what it's like for people like me and other young people and on my blog I also open it out to other people with chronic illnesses to share their story about their illness and what it's like to live with chronic illnesses and disabilities too just so there's a platform not just for me but many, many, many other young people living with M.E. and other chronic illnesses and disabilities. 
I hope this video's helped you to understand a little about M.E. and me and how I live and cope with the condition. 
Thank you for watching."

2 comments:

  1. Such a good description of how badly this can affect your life, I’ve shared it for my family and friends to see, thank you x

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    Replies
    1. Hi Catz, wow, thank you so much! Like I said it was hard to sum my M.E. story in just 5 minutes. I'm glad you found it helpful and thank you so much for sharing it. The articles can be found on Action For M.E.'s website here: https://www.actionforme.org.uk/news/naomis-story/

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