ME/CFS Awareness, 15 Nov 2017

ME Awareness Hour

As you might know by now, I spend every Wednesday evening on Twitter, along with many other ME/CFS warriors, taking part in ME Awareness Hour. It runs from 8-9pm (London time) every Wednesday evening.

We tweet about what life is like with this life draining illness. We tweet and retweet for an hour, hoping to to make our hashtags trend on the front page of Twitter so we can get the most attention possible. I hope you will join us, even if you only retweet other people’s tweets, every bit helps!

Why share these memes?

A common misconception about Chronic Fatigue Syndrome is that we are just tired, but 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 really affects us on a daily basis.

You’re welcome to download these images and share them on social media too.

Here are the points I shared this week:

Even lying down hurts

Have you ever been so exhausted and weak that you feel like you are going to collapse, even though you’re already lying down? ME/CFS is not just tired, it is a weakness unlike anything I experienced before onset. It is a lack of power at a cellular level. Your body just cannot function like it should and the more you push it, the weaker you get.

Not only are we utterly drained of power, but we are in constant pain too. Sometimes it gets so bad that any fabric (clothes, sheets, etc) folded under our bodies can feel like we’re lying on tennis balls. It hurts and our skin burns and feels bruised.

You cannot fight against ME/CFS. In order to win, you have to accept it and surrender to it. You cannot fight through it, because the more you fight, the stronger it gets, the tighter it grasps and the more energy it drains from your body.

Acceptance is not the same as giving up. Acceptance allows you the mental and emotional freedom to make informed decisions about what you realistically can or can’t do. Giving up means you’ve stopped trying. They’re very different.

A person with ME/CFS is not giving up when they tell you they cannot pull up their pants, turn over in bed or straighten their pillows, they’re not giving in, they’re protecting their own well-being. They’re listening to their body. They’re already running on tomorrow’s fuel.

holding phone causes spasms

Healthy people don’t realise this, but mobile phones are quite heavy! For people with ME/CFS, holding a phone can at times be like weight lifting. Your arms cramp or your muscles spasm. You get shaky and lose your grip. We often drop our phones while using them.

This is just one problem we have with our phones which are often our only connection to the outside world. One of the other issues is the brightness of the screen, the vibrations and ring tones, and the utter exhaustion and panic that comes from having to take a phone call.

It is a common occurence among people with ME/CFS to get heart palpitations and extremely drained from telephone calls. I often have to drop everything and just lie back with my eyes closed and rest for a while after any phone conversations, even the most welcome and friendly calls!

forget what you're saying

This happens every day! ME/CFS affects our cognitive function on a daily basis. We commonly refer to it as brain fog, sometimes pain fog.

Brain fog is when you’re so utterly drained that you can’t remember common words, names for things and people, how things work, what you were just saying or doing – it can be quite funny at times as the brain will try to substitute the words and actions with other ones, but often it is just very frustrating because we cannot get our thoughts or needs across.

Pain fog is when you’re in so much pain that you can no longer think straight. The pain becomes so unbearably all-consuming that you cannot think clearly anymore. You can’t speak coherently, you don’t even want to, it just all hurts too much.

These types of cognitive dysfunction are some of the main symptoms of ME/CFS and we all experience them to some degree on a daily basis. It is a terrifying place to be, to have thoughts inside your head and be completely unable to get them out in a way that others can understand. Please be patient and considerate.

running on empty

This follows from the previous points. The lack of energy we have is literally at a cellular level. Our mitochondria (energy centre of each cell in our body) no longer work correctly, there is a higher demand for energy than they are able to produce. It is a malfunction in each and every cell. That is why ME/CFS affects the whole person, every system in the body is running on empty and overworking any one system will cause shutdown of the whole.

The only way we can hope to regain or recharge some of that energy is to retreat to a quiet, comfortable place to rest. No people, no screens, no sound, no light… just rest.

We need to do this a few times a day at least, and those of us who are housebound or bedridden need this even more as our bodies are barely producing enough to complete the most basic functions to keep us going.

When somebody with ME/CFS tells you they’re tired or exhausted, it’s nothing like the tired and exhausted you know as a healthy person. It might be more like something you might feel if you ran up ten flights of stairs, while having the flu and being hungover.

People with ME/CFS feel like this from getting dressed or walking to the bathroom and for the most severe, just lying in bed surviving will feel like that. Our tired is not the same as healthy person tired because we are not just tired and sleep will not take it away, it will only help us cope a little better with the next vital activity we need to face. Like digesting our next meal or making it to the toilet in time.

exhausted, but cant sleep

Something many people believe, until they’ve experienced ME/CFS, is that sleep will make you feel better if you’re exhausted. With this illness, sleep often makes us feel worse, not only that, but most people with ME/CFS suffer from insomnia or other sleep disturbances. It is the irony and torment of having a chronic illness with such a silly name. People think we’re just fatigued and if we rest a while we should be better. I think a new name might be helpful as fatigue is by far not the worst or most debilitating symptom!

The exhaustion we feel is so heavy and draining, you feel like you’re sinking into the mattress and you can’t move your limbs. You ache for sleep and rest, but often end up lying in bed in the dark unable to fall asleep as your brain fires and misfires constantly. So many thoughts bouncing around in a jumbled chaotic mess, unable to focus on one before the next one pops up… We call this tired, but wired.

You can only imagine the implications such a night has on the following day or two. Even more exhausted, a significant increase in pain, neurological symptoms like increased sensitivity to light and sounds, brain fog, irregular heart beat, fight or flight mode on full alert, anxiety and even full on panic. This is just the body’s way of dealing with danger, and when energy levels are so low and rest is nowhere to be found, the body goes into red alert.

you put the milk in the cupboard

This is a common effect of brain fog. It might seem funny sometimes, but it can actually be quite dangerous. Many of us suffer short term memory loss, so there are some daily activities that can become hazardous if we are left alone while in a severe state or relapse.

Some of the things that I often read about are: leaving the stove or oven on, forgetting that we’ve opened the bath taps and flooding the bathroom, boiling the kettle many times over without ever making that cup of tea, losing items, getting lost – even if close to home in a familiar neighbourhood, forgetting to take meds or taking too many meds because we forgot that we had already taken them, missing important appointments, forgetting your own language, forgetting how to walk – not being able to put one foot in front of the other.

You can see how something like brain fog can become very dangerous and very frightening. Although it might sound like we are losing our minds, we aren’t. This is simply the effect of running out of fuel. Like any other machine, without fuel or power, it will shut down and stop working.

Life with ME/CFS awareness

That’s all for this week’s ME Awareness Hour. I hope you will join me next week and tweet about this life-draining condition. We need more awareness to inspire people to action, we need more funding for research and we definitely need more education to promote understanding and acceptance among the general population and medical staff, the elimination of harmful misconceptions about ME/CFS.

There are too many severely ill people isolated in dark rooms, hidden behind closed doors, unable to stand up for themselves. Let’s be a voice for the millions of invisible warriors missing from life!

Find me on twitter @chronic_hopeful every Wednesday night at 8pm GMT / 3pm EST.

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