ME/CFS Advocacy – Awareness Pictures To Share, part 1
Ever wondered where to find ME awareness pictures to share? Myalgic Encephalomyelitis is a very misunderstood illness, so my aim is to empower people with ME or CFS to raise awareness, share their own experience and to educate the public about the condition.
In this series I will be sharing ME awareness pictures that I have created and shared on social media and I'll elaborate on each topic here on the blog. All these posts and graphics have been created for advocacy purposes, so feel free to share them online.
The Idea Behind This Series
I often take part in an online event called ME Awareness Hour. The event takes place on Twitter every Wednesday evening and aims to raise awareness for ME/CFS by tweeting and retweeting posts about life with ME or CFS and any recent scientific publications or media coverage on these conditions.
I love being a part of something like this because it gets people's attention when we work together and make some virtual noise all at the same time. Wouldn't it be amazing if we could get our ME hashtags to trend on Twitter every week?
I decided to post the same ME awareness pictures I share on Twitter each week here on the blog too, but of course I'm not bound by the tiny character limit I have on Twitter, so I can express my thoughts on each image without limits.
I hope you will find these posts beneficial, please feel free to save the images and share them on social media if they resonate with you. I'd love to see you take part in MEawarenessHour on Twitter too! It happens from 8-9pm (UK time) every Wednesday evening. You can find me on Twitter at: chronic_hopeful
ME Awareness Pictures To Share
The common misconception about Myalgic Encephalomyelitis (also called Chronic Fatigue Syndrome) is that it's just about being tired. That couldn't be further from the truth. The fatigue I feel is by far not my worst symptom and not even the most debilitating. With these posts I hope to shed some light on how ME/CFS affects us on a daily basis.
So, what is it like living with ME? Here are the thoughts I shared this week on social media:
Living with ME/CFS means short term memory loss, confusion, forgetfulness, trouble getting your thoughts across. You often can't remember what you were saying mid-sentence. You forget what you were doing half-way through doing it, this means your days are filled with so many unfinished things.
Managing your responsibilities like chores, appointments, finances and medications can become quite tricky when you reach a point where cognitive dysfunction is almost your permanent state.
Sometimes all it takes is one activity. A shower or cooking. Shopping or a visit from a friend. One thing and you're wiped out for days or even weeks. The last time I went out was three months ago and I spent a month in bed after that. And I was in a wheelchair to avoid as much exertion as possible.
ME/CFS is extremely debilitating. Every little thing around us contributes to the worsening of our condition: lights, sounds, movement, crowds, the buzzing of electrical appliances, people talking, the vibration of vehicles, everything.
This is why we tend to space things out so that we have rest days or weeks between events or activities. The hope is that this resting time will help our bodies recover from the onslaught of sensory and physical exertion of our last event and make us strong enough for the next one. Sometimes it works, sometimes it doesn't. ME/CFS is quite unpredictable.
This to me has been one of the hardest things to accept. I always considered myself quite physically strong and now simply brushing my teeth can send my heart racing and I'll feel like I've just run up a flight of stairs - which I used to do a few times daily at work! Now I often need a lie down after my morning bathroom visit before I head to the kitchen for my supplements and water.
As previously mentioned, ME/CFS is extremely unpredictable. People often wonder why we could be at an event one day and then say we just can't do it the next time. They don't understand why we keep cancelling our dates and rearranging things. It's not that we are untrustworthy - it's our condition that is!
Just when you think you've figured out a way to cope and manage your life around this chronic illness, a random unexpected flare comes along to remind you that you're not in control and it can and will ruin your plans without warning. Our physical and mental ability can fluctuate within minutes and completely disable us.
Please be patient and understanding with your friends who have ME/CFS. They feel so bad about cancelling, but they know their bodies and they need to listen to how their system is responding and make decisions accordingly. This illness affects every single aspect of our lives, so it is impossible to just ignore it and pretend like it isn't there.
When we push though, which we will sometimes do just for a semblance of normality, we will pay dearly in the form of utter weakness and severe pain, among other things. So please be kind. Be considerate.
People with ME/CFS are not just tired. We suffer incredible weakness, shaking, chronic pain and severe cognitive dysfunction which all get worse with any form of exertion, whether it's physical, emotional or mental exertion. Many of us are housebound and even bedridden. Unable to complete the most basic of self-care activities like bathing, getting dressed or cooking.
I have on a few occasions had to call my sister into the bathroom to help me up and to help pull up my trousers. Going to the toilet can be that exhausting at times. It gets even worse when we pick up a bug - I needed my mum to walk to the bathroom as I hung over her shoulders and she held me up on the loo as I just lay against her body unable to stay up straight.
ME/CFS is not laziness, it's not being tired, it's an energy production deficiency at a cellular level as well as neurological inflammation and a few other biological abnormalities that have been identified over the past few years. It's like a power drain, a physical and cognitive inability to function, unlike anything I had ever imagined possible or experienced before. None of us chose this, and not one of us would wish this life on our worst enemies.
Even emotions cause pain and weakness to increase and disable us physically. This means that I become disabled by the excitement I get from knowing that I'm going out of the house or if somebody in the house is upset or argumentative. The same is true for music and films that affect our moods.
When I have planned a few hours out at the shops or go out for an appointment, it is quite a treat for me and despite the fact that I can walk around in my house daily, the minute I am about to leave the house, my body starts trembling and shaking, my legs turn to jelly and I am glad to have my wheelchair. Without it I would be stuck in the house always.
I love going out, but for some reason the simple excitement turns my legs to jelly and I can't walk properly anymore. A similar thing happens with anger or grief. Pain all over, shaking, weakness, need bed rest in quiet isolation. I can usually feel it coming on and I either remove myself from the situation or try to calm myself down to minimise the effects. It doesn't always work.
When you live with Chronic Fatigue Syndrome, you are basically imprisoned by your body: you have to stay calm, don't get too excited, don't get upset, don't move much either. It is a full time job just trying to keep debilitating symptoms at bay.
Where To Find More ME Awareness Pictures
ME Awareness Pictures is a curated collection of powerful advocacy images and posts for you to share. I don't only post my own ME/CFS awareness pictures, but also share graphics created by other people with ME. Follow us on Facebook, Instagram and Twitter for some great advocacy content that's ready to share!
My Personal ME Journey
I was diagnosed in the Spring of 2015 after a misdiagnosed viral infection. I went from living a very active and busy life I loved to being severely ill overnight.
I continued to deteriorate over the next 2 years until I became completely housebound and mostly bedridden. I have since stabalised, but still spend about 95% of my life in bed. You might find these posts interesting:
Submit Your Own Quote About M.E.
By sharing your experience of ME, you can help raise awareness and eliminate stigma. Below are three awareness campaigns you can participate in.
The Effects Of ME
The aim of this campaign is to provide a glimpse of the practical ways in which ME affects your daily life.
People with ME are asked to complete this sentence: You know you have ME when...
Severe ME Is...
This campaign aims to highlight the harsh realities of Severe ME which are rarely seen.
People who are housebound or bedridden with Severe ME are asked to complete this sentence: Severe ME is...
Why I Use ME and ME/CFS Interchangeably
You will find that I often use both names interchangeably. I do this because in different parts of the world this condition is named differently and I believe that until science has caught up and figured these conditions out, we cannot be certain whether this is one, two or even more illnesses.
For this reason I feel that being too strict about the label only causes strife in the community and effectively isolates some people who have been given the less appropriate label (CFS) despite fitting the most accurate criteria for the more acceptable label (ME). Patients should not be shunned for a label they've been given just because a doctor chose to use one label over another.
Being diagnosed by process of elimination means that nobody can really be sure what it is we have and many of us could well be misdiagnosed. In the meantime I'm using ME on my awareness pictures, but using both names in my writing so that newly diagnosed patients will be able to find my content online no matter which label they have been given.