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twinkle lights

I discovered something by accident last year. I don’t like for twinkle lights to twinkle. I mean… I want the lights to be ON and to actually light up, but I don’t want them to blink. Part of living with an acquired disability is learning to make adjustments. Having Meniere’s disease may mean that you learn what may be specific triggers for you and do what you can to avoid those triggers. I have problems with lights. This is part of the reason I don’t drive at night anymore. I don’t have night blindness, but oncoming traffic light triggers extreme vertigo. So I don’t drive at night. It’s a pain, but a necessary change in my life.

Other kinds of lights bother me. I discovered that Christmas tree twinkle lights make me feel as if the room is rotating. Quickly. So I am making adjustments that include a delay in decorating the family Christmas tree until I can get to the store to buy more twinkle lights – ones that don’t twinkle. So – picture with me plugging in our Christmas tree every evening and BAM. LIGHT everywhere. But it won’t twinkle… which means I can hang out in the same room as the tree is in without heaving all over the nearest family member.

Making Adjustments

One of the wonderful things about having a blog with numerous guest authors is that I have learned a bunch of things about other disabilities. Being a client at Fidos For Freedom, Inc., has also helped because I have been able to personally get to know people who live with other kinds of disabilities and chronic illnesses. Through the years I have learned about some of the adjustments that folks use to navigate life:

1. Get more rest

According to the National Sleep Foundation, average, healthy adults need 7-9 hours of sleep every night (National Sleep Foundation, 2011). While most of us very likely receive far less than that, the experts agree that this is the amount we should strive for every night. However, people who live with disability or invisible illness may actually require more. At the very least, these folks should make the 7-9 suggested hours a priority.

I now know that people with MS, fibromyalgia, chronic fatigue syndrome, and various neurological disorders may not only need a good night’s rest, they may also need a daily nap. Doing so may mean that they can continue their day performing at their best. Not taking one may mean they are more at risk for an accident, “brain fog”, etc. One of my friends actually said her doctor told her, “If I need to write you a prescription to take a nap everyday so that you can get the rest you need, I’ll write you one!” That’s what I need. A prescription for a nap! :-)

2. Leave Home Prepared

People with acquired disability likely learned the hard way to leave home prepared. That may mean making sure you have extra cochlear implant batteries. It may mean that you have an extra cane in the car. Maybe it means that you make sure you have an extra meal or snack if you are diabetic. You may have a medical pack that holds injections, emergency contact information, medicines, etc. If you have a service dog it requires that you walk out the door with water, an extra meal (in case caught away from home during mealtimes), clean up bags, vest and I.D. Spontaneously running out the door while only grabbing your keys is something you just can’t do anymore. But that’s OK. Learning to leave home prepared really takes very little time and in the long run can only help you.

3. Medic Alert Identification

Whether you wear a medic alert necklace, bracelet, or carry a card, you probably have some way of letting emergency response personnel know about special medical information that may just save your life. My own bracelet was so old, the engraving was barely discernible after years of scratches and wear-and-tear. For less than $30 I replaced it. When I told my husband he’d see a charge for it on the credit card bill he said, “You know? I don’t even know where mine is. I probably should replace mine as well”. I sat there stunned for a minute – looking at my significant other who happens to only have one kidney and gave him a “Denise sermon” that was probably not only LOUD, but unforgettable. Did you know…

  • More than 95 percent of respondents look for a medical ID during emergencies.
  • More than 75 percent look for a medical ID immediately upon assessing a patient.
  • 95 percent look at the patient’s wrist to find a medical ID, and 68 percent look for an ID on the patient’s neck.

Some of the stuff out there is very attractive for those who turn up their noses at traditional looking medical alert jewelry. However, I must caution you that there has been an alarming trend suggesting these new options may not be identified during an emergency. Yes, the sterling silver band around my wrist may not be the prettiest thing in the world, but I’m confident that in the event of an emergency it will be recognized for what it is. I’m perfectly happy being “smart” if not fashionable.

4. Check the forecast

Meteorology is NOT an exact science. I always check the forecast. I may not be able to call in sick to work when it is raining and a Meniere’s flare kicks my butt, but just knowing in advance the weather is going to be bad can at least help me mentally prepare. I can make sure I grab that cane in the car and remember to hold Chloe’s vest handle instead of just her leash. People who have mobility challenges may have to make schedule adjustments if they cannot easily or safely navigate away from home if the weather is bad.

5. Charge your cell phone

Even though I have a hearing loss, with today’s technology advances I can use and carry a cell phone with t-coil settings, text, access the Internet, and much more from a mobile phone. The only problem I ever run into is when I carry around a phone that doesn’t have a charged battery. I’ve done this enough that I think I’ve finally instilled a good habit of always charging my phone at night, and making sure each vehicle has a charger that can be used with the cigarette lighter. I even carry a small charger that I can plug into a computer at work if needed.

6. Other:

Honestly? One could write a book on the number of adjustments one makes when living with a disability or chronic illness. Some of the things YOU do may not even be things someone who shares your diagnosis must do. Don’t fret about Christmas tree lights that don’t twinkle. Even people without disability make adjustments as they go through life. Folks get reading glasses, stop eating spicy food, and walk instead of run for exercise. We do this because we are smart (grin) and malleable. We do what we must. My Christmas tree may not twinkle from now on, but it is still BEAUTIFUL.

Denise Portis

© 2013 Personal Hearing Loss Journal

National Sleep Foundation. (2011). How much sleep do we really need? Retrieved October 22, 2012 from http://www.sleepfoundation.org/article/how-sleep-works/how-much-sleep-do-we-really-need