#meandmyME – May M.E awareness month

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With May 12th being the official M.E (Myalgic Encephalomyelitis) awareness day I began thinking about prompts for the whole month of May to keep me doodling but also to give more awareness throughout the month. As someone who has had CFS/ME for 10 years it finally feels like a tide is turning towards getting awareness really out there for this illness, and I wanted to keep momentum going by challenging myself to do more awareness side of things on my instagram account.

With this in mind I then realised it had sort of created a mini  instagram doodle/photo challenge for myself and wondered if anyone would be interested, so headed to insta stories armed with a poll! I asked if any of my followers would be interested in a M.E photo challenge throughout the month of May… 91% of people in the poll said yesss! So here are the details!

I will release the prompts image on the 22nd April 2018, so keep an eye out on instagram for that! (follow @spoonie_village)

But for now, here’s some answers to questions you might have…

Why bother with this photo challenge?

Since joining the instagram community I am daily inspired, motivated and most importantly supported by other people who live daily with this illness. M.E/CFS can be so isolating and lonely due to the symptoms of debilitating fatigue and sensitivity problems to noise, light and crowds. It is also a a huge spectrum of an illness, with it affecting each person differently although there are some baseline similarities. The reason I decided to share my prompts and turn this into an instagram challenge is based on two words:

Community – The potential of a simple hashtag is huge. It can bring thousands of people together who are all going through the same things. It can reach out to people and let them know they are not going through this alone. You are heard and we stand with you. This I feel is so vital for the M.E/CFS community. When I was first ill 10 years ago, there wasn’t as much online community as there is today – isolation is hard enough, throw in the constant daily battles and people who simply don’t get it and it’s hell. It might only be a photo challenge, but it has the potential to bring people together in a shared experience, make new friends and most importantly show you are not alone in what you go through.

ME.CFS-community

Awareness As I have mentioned previously there feels like there has been a big push recently in the amount of attention M.E/CFS is getting, but it’s still a drop in the ocean. The second reason is to build awareness during the month. While so many do so much great awareness work all year round, May provides an extra nudge to us all to get our awareness on! With a prompt per day it gives everyone taking part the opportunity to discuss how their health effects their daily life. There are so many myths, unknowns and lies about this illness out there, along with the fact so many are often bedbound or housebound, it gives the chance to raise our voices and tell the world how it really is to live with this illness daily.

Mantra--my-illness-

I call M.E Chronic Fatigue Syndrome (CFS), can I still take part?

YES! That’s the very short answer. I personally refer to my illness as both M.E and CFS. Some doctors chose to call it M.E other CFS, it really doesn’t matter which you use, which diagnosis you were given or even which you prefer. The point of the challenge is to bring awareness to the illness and how you live your life with it. The hashtag uses M.E simply because it is all you (the me part) with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (but M.E goes with the aspect of me)

Who can take part?

Anyone. If you want to take part, take part! This challenge is for anyone interested. You may have the illness, be a partner/carer of someone with it, or just be really passionate about raising awareness of invisible illnesses – that’s all fine! The challenge doesn’t exclude anyone from taking part.

How does it work?

It’s super easy, a prompt list will be released in a couple of weeks, for each day in the month of May there is a prompt word. Simply think about what that means to you and post and photo and caption on instagram using the hashtag may.me&m.e then your done!

I don’t think I can manage to post daily, can I still take part?

Yes of course! While there are prompts for everyday you post what you can manage. Symptoms, flare ups and general life stuff can get in the way of keeping up easily and that’s all fine. There is absolutely no pressure here, as a girl living with M.E/CFS I totally get it, but the prompts are there if you wish to take part everyday!

Do I have to have an official diagnosis of M.E/CFS to take part?

Nope. Getting a diagnosis can be difficult, and highlights the massive need for more awareness of this illness. I wasn’t diagnosed for years. I was given the potential diagnosis of Post Viral fatigue and adrenal Fatigue over the years before my Dr finally admitted I was right with what I had been saying for years! So, if you are aware of your symptoms and feel you know you have it, but you just haven’t had it confirmed from a real life Dr, I don’t care, join in! You know your body better than anyone and you live with it daily and that’s all that counts in my opinion, so please don’t get hung up on not having the label or being officially told you have it for this challenge.

Hope you find this helpful and if you need any more info drop me a message on instagram or email!

The prompts will be released on the 22nd April so keep an eye out for it!

Love Hayley xx

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