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May 23, 2016

IIH Compassion Challenge

I haven't posted much lately because things have been pretty stable in my case, not better, just not progressively worse. I spent some time thinking about my next post and remembered a few years ago, the Ice Bucket Challenge took the internet by storm, raising donations for ALS. While it did have much viral success in raising funds and awareness, I don't believe it did much to create awareness of what sufferers of ALS experience on a day to day basis.

What I'm proposing to do here is create a set of conditions that help the participant experience a bit of what it feels like to have Idiopathic Intracranial Hypertension.  Some preparation will be necessary in order to simulate certain conditions, unfortunately, a little more than going to the corner store for a few bags of ice, BUT, this challenge won't be shockingly cold or painful. Keep in mind however, it's not possible to experience all of the conditions that we feel on a daily basis. There are many that just can't be simulated such as daily fatigue, nausea, and chronic pain to name a few.

While I wouldn't wish this condition on my worst enemy, sometimes, I find myself wishing someone could understand how I feel and I'm sure there are others out there with IIH who find themselves in the same situation when their friends and family wonder yet again why they can't attend a family function, go to a movie or enjoy a night out celebrating.

Items required:

Glasses - Sunglasses with wraparound features would be best
Tape - Duct, masking, or other non transparent tape
Petroleum Jelly or other thick, clear lotion **CAUTION This will be near your eyes, Please don't use something with perfumes or eye irritants **
Bandana or scarf
Shoe insert or 2 different pairs of shoes
Ear plugs (optional)


Glasses  - I suggested sunglasses here for the dimness factor.  On a daily basis, my world is darker than most.  Many times, I've had family turning off the lights because it's "daytime" and the room for them is bright enough, but once those lights are out, my ability to find my way around is lessened.

Tape the outside of the lenses in a way that impedes most of your vision in at least 1 eye. The second eye can have lesser impairment, but it cannot be fully open. If you have someone in your circle that has IIH, ask them to try and describe the visual impairment they have and replicate that.

The image to the right is a close simulation of the visual area of my right eye, the black area represents optical nerve damage caused by increased intracranial pressure, areas where I no longer have visual perception.  My left eye is not as bad, and has only the lower right quadrant impaired drastically, with a smaller band of impairment along the upper left quadrant.

Using the Petroleum Jelly, smear the inside of your lenses leaving just a little of the central area untouched.  This will help to bring in the blurred feeling experienced in the remaining vision.  I know.. Vaseline will smear your make-up or make your eyes "gunky" ... well.. IIH patients usually don't have the energy or visual dexterity to put on make-up on a daily basis and many of us have issues with our eyes either being dry, tearing excessively or creating more "gunk" than the average person, so one more area to experience what we do on an hourly basis.

Shoes - In some patients because of visual issues, inner ear issues or simply due to the fluid pressures on the brain, our balance is impaired.  The only way I can think to simulate this is to place an insert or 2 inside one shoe, or wear 2 different shoes of slightly different heights.. not enough to create a limp, but enough to make you want to reach out and hold onto a counter for balance, especially if your eyes are closed...

Head - Tie the scarf/bandana tightly around your head - across your forehead, above your ears then around to the lower part of the skull (occipital region) and be sure to tie it tightly but avoid placing the knot over the temples or directly on the occipital bones.   Ironically, this band can actually help headache sufferers, but in our case, give it an extra tug to be a bit uncomfortable. This helps to serve as a reminder of the constant pressure experienced internally by those with IIH. If the pressure of the scarf creates a headache, don't take anything for it, most pain medication will not have any affect on IIH headaches.

Ears - Personally, my hearing has become overly sensitive. I am very intolerant of noise, frequently complaining to family that it's "too noisy", the television is "too loud" etc etc.  One thing I do experience on a regular basis is "swooshing" noises.  If you have ever placed a shell over your ear, you "heard the ocean", technically, what you heard was the sound of the blood flowing inside your head. Many IIH suffers experience this sensation constantly, without the aid of something over our ears due to constriction in the blood flow or excessive spinal fluid circulating around inside our skull.

Others with IIH have experienced a loss of hearing to some degree.  Again, if you have someone with IIH in your immediate circles, ask how their hearing has been affected and find a way to replicate this such as inserting ear plugs, or wearing headphones while playing a repetitive audio file such as the one here.  Keep the volume low, for those with IIH the sound is there, constant and repetitive but coming from inside our head.

Now what?

If you've taken the time to prepare yourself using the suggestions above, go about your day as you normally would. Head to work, keeping in mind your vision is affected and the glasses can't come off, so you need to find an alternate way to get there.  See how long you can make it through the day with the accumulation of difficulties, keeping in mind, those of us with IIH can't take off the shoes, glasses and headband but live with them and many other things on a daily basis.

I hope that many will last at least a couple hours and develop a little more understanding in regards to what their friends and family with IIH experience.  For those who really want to help, donations can be made to Intracranial Hypertension Research Foundation.  

I'd love to hear comments both from those who are brave enough to try this experiment and from those who suffer from IIH who may have additional suggestions of ways to simulate what we live with daily.

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