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Emily Canwood: Raising awareness of fibromyalgia

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Category: Case Studies

Published on Thursday, 29 July 2021 09:39

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Hi, I’m Em. I’m 26, and from East Anglia and I have been living with chronic pain for more than ⅔ of my life.

I became disabled in the eyes of the government in 2018/2019 due to being diagnosed with fibromyalgia. In 2018 this was not when my journey with chronic pain began.

I remember being as young as 9 always complaining that my muscles and my knees hurt which was ruled down as growing pains. I was never the “healthiest” and I dealt with a great list of symptoms like being constantly nauseated, had poor balance/very clumsy, muscle cramping, lacking energy, just to name a few.

As someone who is on the more severe spectrum of fibromyalgia, without my medication I am not able to eat, drink, bathe or walk by myself. The pain was excruciating, I would often describe it as a 10 on the medical chart. I was extremely fortunate that I met a wonderful doctor, Dr. Coghill at Fakenham Medical practice who was compassionate and understood and knew of the condition.

Did you know that 1.5 - 2 MILLION people in the UK have been diagnosed with Fibromyalgia? That’s a lot of people and still, there is a lack of knowledge or support for others, especially minority groups.

Fast forward to 2020, I was managing a lot better with pain medication and pacing but, I could still hardly walk due to not mobilizing for 2 years. So, I spend 2020 rehabilitating myself. I am an ex healthcare worker, not trained in this but, I did gentle movements supervised by my wonderful husband every time. It took me over a year but I can now ambulatory. This means I have days with walking aids and ones without. Then December 2020 rolled around and my doctor and I decided to try B12 injections to help my chronic fatigue and it changed my life.

I decided from that moment on I was going to try and spread awareness and be seen in the eyes of social media. Amplifying other’s needs and provide a safe place for my disabled and chronically ill internet family is extremely important. As a housebound pal living with chronic pain can be extremely lonely and isolating.

So, I started streaming this year and have grown my community whilst streaming in the art and the makers & crafters section of Twitch. I spend that time providing a safe chill place for 4 hours on Monday, Wednesday, and Friday from 2 pm till 6 pm BST. This way people who need support, friendship, and a place to feel safe can come and relax whilst not spending too much of their energy.

I always knew I wanted to raise money for Fibromyalgia and I chose FMAUK because the ethics, standards, and support are outstanding. They can provide an outstanding amount of support for someone like me and I want to see more of that. There aren’t enough people talking about it and with my experience the moment you say you seek medical help it’s immediately blamed on the diagnosis and you’re sent home to “just deal with it”.

Please spend a moment of your day on Friday the 13th of August from 10 am till 10 pm to come to say hello, ask any questions or donate towards a better future for people with fibromyalgia. https://www.twitch.tv/ghostlycomplaints

I will be making a FMAUK butterfly plushie and designing clothes for myself during the stream and at 2 pm I will be shaving my head in solidarity for those like me who struggle with allodynia as a result of this illness.