ME/CFS Awareness, 1 Nov 2017

ME Awareness Hour

Every Wednesday evening I take part in an online event called ME Awareness Hour. The event takes place on Twitter and it’s goal is to raise awareness for ME/CFS by tweeting and retweeting posts about life with ME/CFS and any recent scientific publications or media coverage on the illness.

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. 

I decided to post the same things I share on Twitter each week here on the blog too, but of course I’m not bound by the 140 character limit I have on Twitter, so I can express my thoughts on each image I have shared without limits.

I hope you will find these posts beneficial and please feel free to save the images and share them on social media if they resonate with you too. I’d love to see you take part in ME Awareness Hour on Twitter too! It happens from 8-9pm (UK time) every Wednesday evening. You can find me on Twitter at: chronic_hopeful

The common misconception about Chronic Fatigue Syndrome is that it’s just being tired. There couldn’t be anything 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.

Here are the thoughts I shared tonight – what it is like to live with ME/CFS:

what was I saying?

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.

did a thing yesterday

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.

heart palpitations brushing teeth

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! I often need a lie down after my morning bathroom visit before I head to the kitchen for my supplements and water.

unpredictability of ME/CFS

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 just for a semblance of normality, we will pay dearly in the form of utter weakness and severe pain to name a few. Be kind. Be considerate.

too weak to pull up pants

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 its 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 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. None of us chose this, and not one of us would wish this life on our worst enemies.

Emotions cause pain

Even emotions cause pain and weakness to increase to levels that disable us physically. This means that I become disabled by the excitement I get from knowing that I’m going out of the house.

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.

My personal ME/CFS journey

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