Reality of ME. How would you get this across (briefly) using words or graphics?

[MEMarge]

For people who have no idea what ME is like, (for example most doctors and healthcare workers) how would you express it briefly?

You could use:

• words/phrases, maybe a word cloud.
• quotes or facts
• drawings/pictures

The space is small and rectangular.

All ideas and links are welcome. You do not need to produce a "finished design", just note down ideas of what is important to you.

Think of this as a brainstorming exercise.

 

[Sean]

Somebody described it as 'the more you do, the sicker you get'.

 

[MSEsperanza]

Somebody described it as 'the more you do, the sicker you get'.

Was it @Trish ?

I would add something like: This applies to the same degree to activities you enjoy or don't like as to activities not associated with particular emotions at all.

[Not able to word that better at the moment due to having done too much.]

 

[Invisible Woman]

I sometimes feel like my body is my prison -

I am rewarded for "good behaviour" by a lessening of symptoms, just enough to make me think trying something small is possible.

Then when I do try something minute, something I am punished by days or weeks in isolation, locked in by exacerbated symptoms.

The symptoms are my prison bars.

 

[Frankie]

Every day I wake up in a body that loves activity, interacting with others, play, fun, work and thinking clearly and deeply. Each day, for decades, I am surprised at how little of that is possible before my batteries run down.

 

[Legend]

I'm alive, but my body does not allow me to live

 

[arewenearlythereyet]

Moving, thinking, eating, sleeping; all have been diminished, sometimes it’s 20% less than before, sometimes it’s 80% less, but never the same

or

permanently in lock down

or

Permanent exhaustion, pain, nausea, weakness, brain fog ...all get worse the more I do

 

[Sean]

Was it @Trish ?

Can't remember who said it.

 

[Trish]

Was it @Trish ?

Yes, but I doubt I'm the only one who has said it.

 

[NelliePledge]

This cartoon is a pretty good way of communicating the less severe end of ME https://laurachamberlain.co.uk/2016/06/24/a-printable-version-of-the-me-adventures-comic/

 

[NelliePledge]

There’s an image that’s a drawing of a woman lying face down with batteries that aren’t in the place in her back where they should be. I can’t find it will look again later.

 

[hellytheelephant]

I always describe myself as like a very old mobile phone: My batteries run down quickly and take ages to recharge.

 

[NelliePledge]

I always describe myself as like a very old mobile phone: My batteries run down quickly and take ages to recharge.

Yes definitely have used this. Although as phones don’t tend to have the same battery problems nowadays compared to the earlier days I think this might not work so well for younger people.

 

[Creekside]

I think of it as being in prison for something I didn't do, with no idea when, if ever, I'll be released. I certainly don't have the freedom to do what I would like to do.

 

[Hutan]

There's the 'feeling terrible, but looking pretty much ok' problem - the difficulty of explaining how dreadfully incapacitated we can feel sometimes.

In the cartoon above that NelliePledge linked to, there's a reference to being hit by a ton of bricks after exertion. I'm lying in bed at the moment feeling like I'm under that ton of bricks. Everything is heavy and hard to move, and I feel sort of crushed to my bones. And it's at moments like these that my son, or someone, will cheerily ask something like 'So, Mum, what's for dinner?'.

 

[arewenearlythereyet]

There's the 'feeling terrible, but looking pretty much ok' problem - the difficulty of explaining how dreadfully incapacitated we can feel sometimes.

In the cartoon above that NelliePledge linked to, there's a reference to being hit by a ton of bricks after exertion. I'm lying in bed at the moment feeling like I'm under that ton of bricks. Everything is heavy and hard to move, and I feel sort of crushed to my bones. And it's at moments like these that my son, or someone, will cheerily ask something like 'So, Mum, what's for dinner?'.

So much of the key symptoms are hidden aren’t they?

I find the confusion/feeling overwhelmed also difficult to describe .. the difficulty with my family just talking at me, trying to have a normal conversation etc. When you can’t make sense of what they are saying/can’t distinguish words from background noises etc. I’ve explained it over and over yet even when I prompt them that I’m struggling, they keep on talking and get frustrated when I can’t follow what they are saying. If that’s my close supportive family, I don’t hold out much hope that others would understand.

This seems to be the main thing people don’t get ...I can’t remember ever feeling this level of dysfunction before I got ill, so I don’t have a good way to describe it. It’s sort of like waking from a deep sleep and expecting a lively debate in the 30 seconds before you’ve properly woken up (remember that ..oh to have one day when I wake up not feeling like I’ve been on an all night bender after running a marathon with the flu !)...I must get a personal trainer to motivate me that this is just me being silly.

I’ve noticed that people seem to find physical restrictions easier to understand....cognitive ones not so much

 

[Kitty]

I’ve noticed that people seem to find physical restrictions easier to understand....cognitive ones not so much

This is so true. People who know you well can get glimpses, though – for instance, if I walk more than a few yards and then try to speak, I have visible brain freezes. My friend says it's like trying to talk to me on a buffering Skype call.

It’s sort of like waking from a deep sleep and expecting a lively debate in the 30 seconds before you’ve properly woken up

When it's ongoing brain fog, this is exactly how I describe it! A casual question such as, 'Did you try that recipe?' feels like being forcefully woken from a deep sleep at 4am, and discovering you're in the middle of the viva on your thesis. If I could draw, I'd make that into a cartoon!

 

[Blueskytoo]

My horizons went from the whole world to the four walls of my bedroom.

 

[Forbin]

Somebody described it as 'the more you do, the sicker you get'.

I'm not sure that this is a great visual metaphor, but it is an example of a "trap" in which the more you struggle to get out, the the tighter the "trap's" hold on you gets.

 

[Wyva]

I’ve noticed that people seem to find physical restrictions easier to understand....cognitive ones not so much

People often respond to the cognitive symptoms, and fatigue, unrefreshing sleep etc with saying they feel exactly the same.

So I tell them that this is something that makes you unable to work.

That seems to work a bit better. And I know some people can work, some do part-time but I think this lets it sink in a bit more.