6 Self-Protection Measures My Healthy Friends Don’t Understand

Sunglasses and Sun Hat

By Maureen DeGarmo

I have been an Illness Warrior for forty years. That’s right…forty. I have a working theory that most of my mystery disease stems from a car accident that occurred in 1977. There is no way to prove it, because the only part of me that the emergency room doctors checked was my wrist. But, I am fairly certain that damage was done to my neck that fateful day, causing long-term difficulties.

You might think that I have had a long time to adapt to my problems. You would be right in a way, but, with such a long, slow decline I don’t even remember what it was like to feel good any more. The effect is that my way of relating to the world is largely determined by self-protective measures. These strategies are ingrained into my personality because I have used them for so long. Some of these are easy to understand, and others are not. Some of my friends understand, and others do not.

Sunglasses Indoors: Indoor lighting is often very harsh. Edison bulbs, florescent lights and spotlights all annoy my brain. Flashing lights are the worst. All of them are difficult to avoid. My best protection is wearing my sunglasses indoors. I wear the kind that wrap over my prescription glasses, so I can take them off when I want to. A few days ago, I was with a close friend who understands my condition and is very compassionate. She explained to her son, “the lights hurt her eyes.” Her acceptance of my unusual self-protection measure meant a lot to me.

Cover My Ears: One of the symptoms of my condition is chronic vertigo. Not the room-spinning kind of vertigo, but the sensation of being in a small boat on choppy water. As a result, I am easily startled by sudden noises, such as heavy machinery, music with a loud bass beat, or a door slamming. When possible, I cover my ears to muffle the noise. If I don’t do this, my vertigo is increased, so protecting myself is worth appearing a bit weird.

Avoid Bending Over: Bending over to pick something off the floor always results in increased vertigo. Recently, I was getting something out of the bottom rack of our dishwasher. From the next room, my husband could hear that I was out of breath. Although I cannot always avoid bending, I try to whenever possible.

Needing Help: Several years ago, I was on a day-long shopping trip with two friends. Without realizing it, I had stated more than once that I would get my husband to help me with something. One friend called me out on this habit of requiring assistance, in a way that was very clear to me that she did not understand my lack of independence. In that moment, I knew that I had to be careful in sharing not only details about my illness, but also with whom I shared them.

Walk With My Arms Up: I don’t remember when I realized that walking with my arms raised to the side, as if I were flying, helps with my balance. Somehow, it reminds me where I am in space and gives me a sense of stability. I am more likely to use this when I am alone, such as walking across a parking lot. I feel like a 4-year-old playing in the park, but it works for me, so I do it anyway.

Sleep Late: Among my family and friends there are several early birds who get up before the sun rises, take a walk, clean the house and feed the cat before my feet ever hit the floor. Fortunately for me, I am not married to one of those. We often get teased for how late we sleep, but I have gotten used to that. I know that sleep is one of the best things that I can do for myself. Especially when I have had an attack of insomnia, I try to sleep until my body wakes up naturally, despite the teasing.

Do you have self-protection measures that you do? Are some of them a bit odd? Please share your thoughts.

Why I Wear My Happy Face

Woman smiling, looking away from the camera

By Maureen DeGarmo

When I am in a group of people, I try my best to wear a smile despite my chronic vertigo and frequent pain. This may seem disingenuous, but I do this to protect myself. In my experience, an event with a large group of people is not the time and place to share details or to provide an accurate response to the question, “How are you?” Here’s why.

I need a break from focusing on my illness. Most of the time, I am at home where it is difficult to focus on outside interests. If I am having a flare, then it is impossible to do so. Leaving the house for a fun activity of any type provides me with a welcome distraction. If friends ask me how I am, I know that they are doing so because they care about me, but I may not feel like talking about it in that setting.

I took the time to do my hair and make-up and I want to enjoy myself. Let’s be honest, there are days when I don’t really want to be seen. I may have what I call “sticky-up hair,” which means that I let it air dry and it is sticking out in an odd shape. My clothing is the most-comfy, least-flattering styles that I own. So, if I have taken the time to be proud of my appearance, then I want it to be worth the effort. I want to have fun just as much as my “normal” friends – perhaps even more so, because it happens less often for me.

You might judge me, and I can’t take that chance. Some friends will understand what it’s like to have a chronic illness, and some won’t. Loving, supportive people may see the physical and emotional pain that I am experiencing and try to suggest ways to fix the problem. This can do more harm than good, since not only have I probably tried their ideas already, but I feel like I have to defend myself. When I am attending a fun event, this can take more energy that I want to expend.

What is the solution? Start by ensuring that you are speaking to a supportive friend (read more about that, here). If a friend truly sounds interested, and you trust them to be supportive, then suggest a get-together on another day. If they don’t pass the supportive-test, then try having a couple of phrases ready in advance, such as “I am just happy to be here!” or “I am managing.” Remember that deflecting their comments is a way to protect yourself from negative comments or intrusive questions. Keep your voice light and move the conversation forward.

For more information on identifying your support system, check out the seminar recording that is included in our Personal Package.

How to Live with Hearing Loss

Illness Warriors would like to welcome our guest blogger, Kelly Lewis of Inspired Organizing.

I began college with the intention of becoming a Speech-Language Pathologist; however, during my undergraduate coursework, I decided to pursue Audiology instead. They share the same Bachelor’s degree, but at that time a separate Master’s degree had to be earned for each discipline.

I wanted to go into this field to help other people, even before I knew that I had experienced hearing loss. We as humans are excellent at compensating, and I had never realized that I watched TV with my head propped up or that I had to move the phone to a different ear when speaking to certain people.

I discovered my hearing loss by accident one night in graduate school, when a classmate and I were practicing a test on each other. This test enables audiologists to determine whether a patient has normal hearing or a hearing loss.

My classmate tried the test on me first and it didn’t work – we thought that the equipment malfunctioned, yet when I tried the test on her the equipment worked. After several attempts going back-and-forth, we realized that the equipment wasn’t broken…I had a hearing loss!

I have a condition called Otosclerosis and it results in a type of hearing loss called conductive hearing loss. Here are a few things that are helpful to me in coping with my reduced hearing.

1. Be a great self-advocate. Hearing loss is not typically visible to others. It’s up to me to tell them about my hearing loss and guide them to better communication. Hearing loss (or any other disability) is nothing to be ashamed of! Examples include:

  • Ensuring others have my attention before starting a conversation.
  • Ensuring we are in the same room.
  • Facing me when speaking to me so I can compensate with lip-reading and facial expressions.

2. Use captioning when watching television. It is draining to strain to hear all day long; if I want to relax by watching TV at night, it makes it tremendously easier to “hear” if I turn on the captioning. My sweet husband is so used to it now that I’ve come home to find him (with perfect hearing) watching with captions on.

3. Sit in the front row. I know that I can hear better when I sit closest to the speaker.

4. Protect the remaining hearing. I have earplugs in my purse, in my home, in my car, and anywhere else I can think to stash them.

5. Have your hearing checked regularly. Once hearing loss is diagnosed, a trained professional can take measures to preserve what’s left and potentially also to treat you.

6. Practice gratitude every day. We all have SOMETHING in our life that isn’t perfect (and most of us have many things). But we also all have a lot to be grateful for. I am grateful for the hearing I have left (I have what’s considered a mild to moderate loss). I am grateful for my other senses (my eyesight is still great!) I am grateful that we live in a society with so many accommodations, access to medical care and knowledge, and the ability to live independently and freely.

Kelly has a Master’s Degree in Audiology, has worked as a rehabilitation instructor for the Blind and Visually Impaired and also as an Assistive Technology Specialist. Kelly helps individuals explore their challenges and then works to implement custom solutions that allow them to live and work independently and successfully.

This post was written by Kelly Lewis of Inspired Organizing, with additional comments added by Lisa Mark who has experienced hearing loss herself. If you need assistance adapting to your new normal, please contact Illness Warriors for more information.

 

 

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Welcome to the Illness Warriors Blog

View of ocean with Welcome to Illness WarriorsIf you or a loved one have a critical illness or injury that affects your everyday life, and you struggle to manage your life around your symptoms, then you are an Illness Warrior.

Life can change in an instant. Whether long term or short-term, diagnosed or “mystery disease,” life-changing illnesses or injuries affect the way we live. We draw from our organizing backgrounds and our personal experiences with traumatic illness to help you find ways to cope, adapt to your new normal, manage your to-do list and find support where you need it.

Our blog provides resources for you to use to communicate your needs, tips for setting priorities, suggestions for how to participate in life and ideas for locating support services. If you like what we have to say, then please consider following our blog via email (see that option in the box on this page). We promise that we will never share or sell your email address.

We also offer a free Quick-Start Guide which provides action steps and resources.

Finally, we provide a range of support tools, here.

Thank you for visiting Illness Warriors!

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