Brainstorming required: I have asthma as well as... - LUPUS UK

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Brainstorming required

twist1 profile image
19 Replies

I have asthma as well as lupus and someone explained to me that having an asthma attack is like trying to breathe with a plastic bag over your head that only has one tiny pin hole in it. It is an image that always stayed in my mind and explains exactly how it feels.

I wish I could come up with something that would help with lupus a short sharp image we could leave in people's heads as a lasting impression that would give them insight into how we feel.

I have read the spoon theory but it feels too watered down and does not convey the complexity of the illness only that you have to manage your energy levels.

I like to use film references so when I had my pulmonary embolism I likened it to when the priest in the omen got impaled by a lightening rod lol, I know extreme but it was how I felt even tho I have never had experience of a lightening rod but I think you get the gist lol.

Maybe we should put our heads together. For example it's like you've run a marathon without getting a medal, then had a baby and then entered mastermind.

Any ideas?

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twist1 profile image
twist1
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19 Replies
uzi41 profile image
uzi41

Hellooo...how about being beaten up with a baseball bat, so that everypart of you is in pain, not to mention how cloudy your head is and then on top of this you have to climb up a never ending ladder, the end of it is never insight...... Or maybe im just having a bad day.. Uzi..xxx

Purpletop profile image
Purpletop in reply touzi41

I like your description - the pain, the dizziness and fog and the waiting each day to see how I feel and what new thing is lupus going to treat me to. Thank you.

uzi41 profile image
uzi41 in reply toPurpletop

Yup lupus does come with its daily surprises....and explaining this others is difficult..take care... Uzi..xx

twist1 profile image
twist1

Lol good one uzi41 xx

uzi41 profile image
uzi41 in reply totwist1

I hope it did the trick.xxx. Uzi..xx

DaleDiva profile image
DaleDiva

How about having the worlds worst hangover without the pleasure of the night out... thats how I feel most of the time :)

uzi41 profile image
uzi41

Yes hangover with all the extras to go with it, not being able to walk straight so you fall over abiut a hundred times, walk into everthing and end up somewhere u went going to...joys ..... Uzi..xx

chrissiij profile image
chrissiij

I describe is as being pinned down by a 5kg weight on each joint, unable to move for days and resulting in dehydration and brain fog. Although, of course we can get up (most of the time) and our brain fog isn't from being unable to eat or drink.

tracynoe profile image
tracynoe

When I am at my worst the best I can describe the weakness is being a string puppet with all the strings cut!!

Thaddeus profile image
Thaddeus

Its like trying to ride a greased pig through a water-logged field. Whilst blindfolded and busting for a poo.

Thaddeus profile image
Thaddeus

Sorry will try to come up with a better analogy. This is a great idea and could be very useful for getting the message across, the problem is that Lupus is a very personal illness, in that we each have our own version of it.

DaleDiva profile image
DaleDiva in reply toThaddeus

I like your first analogy!!

roobarb profile image
roobarb

I think of it like having flu, jet lag, PMT & a hangover all at the same time. Whilst trying to function with limbs full of lead, & a head full of cotton wool.

Not very catchy, but hopefully conveys the idea of living with lupus.

Loopylooby profile image
Loopylooby

Haha this has brightened up my lupus induced sweaty and nauseous day!

Will think of my own to add soon.

Thanks for the chuckle x

Tigerlily4 profile image
Tigerlily4

I guess we'll all have our favourites or even several (as in my case) but my particular favourite graphic would be of we battlers burning in some kind of eternal hell-fire and "the well" standing with their backs turned in gay oblivion. All the other myriad symptoms pale into insignificance for me in comparison to the largely uncontrollable inflammation and pain. It is a living hell!

larissa profile image
larissa

Its like pulling your bottom lip over your head !

Tigerlily4 profile image
Tigerlily4 in reply tolarissa

LOL!

kb281 profile image
kb281

well I always say I feel like I've been run over by a bus!

jennywren444 profile image
jennywren444

How about hangover, 10 rounds with Mike Tyson, mouth cut as if you've been chewing glass and chest pain/breathlessness like you've got a large rubber band around your body. And that's on a good day. Lol :) xx

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