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
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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
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.
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
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.
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.
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.
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!
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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Explaining Lupus to relatives and friends
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ANA now negative but still ill
