Month: August 2011

“It’s Just Lack of Sleep…”

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When I was in college I adopted horrendous study habits that included “all nighters” and cramming. I also began to nap. I needed them. Between work study at the campus library and going to school full-time, naps were a coveted, hard-earned prize. I felt better after a nap. I could think better, got along better with my roommates, and could better survive the next long night of studying.

My children are 11 months a part. (No… it was not planned that way!) I did various “odd jobs” throughout their childhood so that I could stay home with them when they were babies, toddlers, and pre-schoolers. Thankfully, this meant I could nap at the same time they did. Let me tell you nap time may have been a thing of dread for a precocious three-year-old, but they were a luxury I enjoyed! I used a baby monitor even after my kids were not babies so that I could sleep with my good ear on it in order to make sure they stayed in their beds for their naps.

Darn it. My kids grew up and my part-time jobs began insuring I would no longer have a nap. I miss them still. I may not get a nap anymore, but I do make it a priority to get a good night’s rest. There is no magic number for hours of sleep necessary for an adult to function optimally. According to the National Sleep Foundation, sleep needs are individual; however, experts agree that healthy adults need 7 to 8 hours every night without risking accumulation of sleep debt (National Sleep Foundation, 2010). You may be slack-jawed having just read that. What adult consistently gets 7-8 hours of sleep every night? Few do.

According to the 2008 Morbidity and Mortality Report, 29% of all American adults report sleeping less than seven hours a night habitually. The report clearly stated that, “The importance of chronic sleep insufficiency is under-recognized as a public health problem, despite being associated with numerous physical and mental health problems, injury, loss of productivity, and mortality” (MMWR, 2008, p. 1175). So if we know we need more sleep, but don’t make it a priority… what is really at risk? Actually… a lot. Depression, heart disease, injury at work or when driving, and risk of DEATH may result from habitually losing sleep.

Factor in Invisible Illness or Disability

Let’s say you have an invisible illness or disability. You may argue (albeit weakly) that you get as much rest as other adults you know. I heard a mother with severe hearing loss complain of rarely getting a good night’s rest, “… in spite of being completely deaf at night without the hearing aids. It’s a matter of getting to bed and going to sleep. So much to do!” You may not realize that if you are operating with an invisible illness or disability you actually need more sleep. Don’t take my word for it. Lack of sleep may seriously impact the quality of life of a person with hearing loss (Preminger & Meeks, 2010). I have met people with Fibromyalgia, Chronic Fatigue Syndrome, MS, brain injury, PTSD, hearing loss, balance disorders, and paralysis who have all shared that they do not get as much sleep as they really need to live their best life.

For some, it may be that they are trying but chronic pain or discomfort may limit how much sleep they are able to get each night. For MANY, however, they simply do not take into account that they need more sleep than the average adult. Why do we make excuses for not making sleep a priority? If a doctor told you that you will feel better and perform better if you could make it a priority to get 2 to 3 more hours of sleep each night, would you do it? “Doctor’s orders”? If research and word-of-mouth testimonies give two thumbs up to getting more sleep, why do we ignore this?

I get 8 hours of sleep every single night – and sometimes I get nine! I’m no saint, but honey? Let me tell you I am ALL DEVIL if I do not get enough rest. It is beyond being grouchy too. I’m more insecure because I don’t hear as well. I fall more and sport pretty, but painful bruises. I don’t make time to exercise if I’m tired. My heart needs to exercise. I have a propensity towards depression when I don’t get regular aerobic exercise. My tinnitus is worse. I say “HUH?” more. (Honestly, I do!) Those who know me well… know how poorly I function when I do not get enough sleep. I lack the finesse of it being a cumulative effect too. Instead it shows up immediately. One of the most unselfish, “good for me” things that I do for myself is make 8 hours of sleep a night a priority. It’s a MUST in my daily schedule.

How about you? Do you get enough sleep? I have never met anyone that couldn’t re-arrange LIFE in order to prioritize sleep if they really chose to do so. It is a little embarassing the things we cut out of our life in order to make a good night’s rest a priority. You may cut out things like less time on FaceBook, or surfing the net, or channel surfing on television. If you live with an invisible illness or disability, how about trying a little test. For one month, really strive to get at least 8 hours of sleep each night. Journal about how you feel and about the steps you took in order to make sleep a priority. Ask others if they notice any changes in behavior, over all mood, and performance. You just may be surprised how important sleep is to even YOU.

Do you know you need more sleep but simply cannot find those hours? Talk to your doctor about whether or not you have a comorbid sleep disorder in conjunction with your illness/disability diagnosis. It is not uncommon to have difficulties going to sleep and STAYING asleep when you struggle with other issues.

I’m interested in your feedback! Have you found getting more (or less) sleep impacts your disability?

Denise Portis

© 2011 Personal Hearing Loss Journal

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Are sleepy workers a threat to safety, productivity?. (2009). Occupational Health Management, 19(2), 20-21. Retrieved from EBSCOhost.

National Sleep Foundation (2010). How much sleep do we really need? Retrieved August 22, 2011, from http://www.sleepfoundation.org/article/how-sleep-works/how-much-sleep-do-we-really-need

Perceived insufficient rest or sleep among adults — United States, 2008. (2009). MMWR: Morbidity & Mortality Weekly Report, 58(42), 1175-1179. Retrieved from EBSCOhost.

Preminger, J., & Meeks, S. (2010). The influence of mood on the perception of hearing-loss related quality of life in people with hearing loss and their significant others. International Journal of Audiology, 49(4), 263-271. doi:10.3109/14992020903311396

Six Year Post Activation Mapping at Johns Hopkins

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(left) 2004 Pre-CI (right) August 17, 2011

 

(Click on photo above to enlarge)

Today I traveled to Johns Hopkins for my 6 year post-activation mapping of my cochlear implant. A number of things went through my head as I traveled a familiar road to my audiologist at the Listening Center. For one thing, I listened to the GPS give directions and didn’t glance at it once – for I was hearing it. I talked to my assistance dog, Chloe, in the back seat when I pointed out the stadium as we passed and heard her bark in response to let me know she was an Oriole fan.

As I entered the parking deck for Johns Hopkins Outpatient Center, I mashed the button to give me a ticket. I heard the instructions to pay before returning to my vehicle prior to leaving. Walking across the enormous lobby I could hear families chatting while they waiting to check in, and admissions counselors quietly talking to patients ON MY DEAF (implanted) SIDE. As I approached the elevators I heard a series of “dings” as different cars reached the lobby level waiting to take patients “up” or “down”. The elevator announced the floor level on each concourse and warnings to stand clear of the door echoed through the car.

All of these sounds were silent for me in 2005. Six years later I hear them all and do so with relative ease. When I was originally tested to see if I qualified for a CI, I entered the sound-proof booth with my husband. I waited to hear sounds in order to “mash the button” and turned to my husband to say, “Gee… when will it start do you think?” My voice drifted off when I saw the look on his face. SHOCK.

He gestured to the window and then the speakers and said, “Denise, the test has been going for 2 or 3 minutes already”. Neither one of us realized how poorly I was hearing since I relied on speech reading so much. Today I entered the booth with confidence and even took a test “brand new” for me. With crowd noise I had to repeat different voices (male and female) of a conversation. My audiologist was very impressed. She said she could see “the switch turn on” after a sentence or two when my CI picked out the important voices from among all the others.

I realize cochlear implants are not an option for everyone with hearing loss. I also know that some people get a cochlear implant and are not 100% happy with the outcome. For me… the Nucleus Freedom cochlear implant changed my life. I hear SO well, in fact, that I’ve chosen not to go bi-lateral like many in my peer group have done. On my “bad” balance days, I cannot risk having my balance worsen because of a 2nd implant at this time. I was diagnosed with Meniere’s disease PRIOR to my first CI, and my family and I cannot tell that it made my symptoms any worse. I have, however, found some research that may indicate a 2nd CI could worsen Meniere’s symptoms – so for now? I wait to see what the future may bring. My audiologist believes I hear as well with one as well or better than many do with two. I’m happy with how I am hearing!

Denise Portis

© 2011 Personal Hearing Loss Journal

 

Deep Breath – Start Fresh

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Invisible Awareness Week is September 12th – 18th this year. I love the theme of this year’s promotion. How often do we take a DEEP BREATH and START FRESH? Perhaps the better question is how often do we NEED to do these two things?

Invisible illness or disability definitely takes adjustment. However, just when we may feel as if we have adjusted to a new lifestyle something will happen to take us back to “ground zero”. It may be that your disability or illness is progressive. Or perhaps, your life has simply changed in such a way that living with your challenges requires a new plan. For example, my children are now adults. Even though they still live at home at 21 and 20-years of age, both are working and going to college. This means that they may LIVE here, but I don’t see them as often as I did when they were younger. That means I don’t have the assistance of people who hear as often as I once did.

Part of the reason I decided to train and be matched with a canine partner, was so that I would be independent of my family’s help. Chloe has been a big blessing and I am grateful for her work of being my EARS and to help me with balance-related tasks. For all that she does, however, there are things she cannot do for me. A couple of weeks ago I needed to make a doctor’s appointment. The voice on the other end of the line had a heavy accent. Chloe obviously cannot assist me in understanding a voice with a heavy accent. However, I have found that because my life changes have been gradual, I already had a plan in place for when no one was home to help me with a call that had a heavily accented voice.

Are you a person living with a chronic or invisible illness? Do you have an invisible (or visible) disability? Do a quick assessment of your life, coping mechanisms, and skills. Do you need to take a deep breath and start fresh?

If you are a person living with invisible illness, I encourage you to check out the site for Invisible Awareness Week. Perhaps you can help to spread the word! There are a great number of resources available at the website.

Denise Portis

© 2011 Personal Hearing Loss Journal

Sometimes? There’s Not a Great Solution…

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Chloe doesn't know Spanish...

Sometimes? There is not a great solution available for positive advocacy.

This past Friday, my 21-year-old daughter asked me to go shopping with her. I’m always thrilled when she CHOOSES to spend time with me, so I agreed so long as it was the morning so that we could “beat the heat”. She agreed. She wanted to shop for new “under things” and I knew JCPenny was having a sale on these items. Kyersten, Chloe and I headed for Annapolis Mall to shop.

The bad thing about shopping in the “intimates” department is that there is not much room to maneuver. I was having some difficulty with my balance as well so I was just being extra careful about how much moving I had to do. Chloe does great even in confined spaces with the exception of that tail. I talk to her a great deal while we are out because it helps to keep her attention on me. Kyersten was busy looking at different styles available.  My main job was to offer the occasional opinion and situate Chloe so that her tail didn’t knock things off with her loving “wag”. Chloe may not understand all that I say to her, but she does know her name and will wag as if she is paying attention to everything else I’m saying. Because my attention was on HER, and as we were in “tight quarters”, I was taken by surprise by two little girls who ran up and threw their arms around Chloe’s neck.

One little girl was about 4-years-old, and the other (obviously big sister) was probably 9 or 10-years-old. I stuttered out, “Oh! I’m sorry. She’s a working dog and cannot be petted right now”. The girls continued to squeeze and talk excitedly.

I tried to tune in a bit better and realized they were talking in Spanish. With my heart plummeting to my stomach, I held up my hand and shook my head NO saying, “Please don’t pet her. She is a working dog”.

The older girl stopped and tried to talk to me in English, and I understood “She’s a pretty dog”. At this point Chloe broke her sit/stay in order to break the choke hold. I was unprepared and went to my knees and caught myself on a rack.

With bras, panties, and tiny hangers attached to various body parts, I again held up my hand, shook my head no and said, “No please!” in a very firm voice. As I was still wobbling, I sat on my caboose to get my bearings.

The older girl said, “Oh … sorry” with some other words that I could not make out because of the accent. I did understand that she understood that Chloe was NOT to be petted. In Spanish she (I think) explained to her younger sister about Chloe. I think she realized something was amiss because I was now sitting on the floor with lingerie scattered around me. She left quickly with her little sister in tow.

I had Chloe brace so that I could get up, and asked my daughter to pick up some scattered articles. (Chloe could have, but I didn’t figure anyone else would want dog saliva on merchandise). Right as I was on one knee about to stand, the youngest came zooming around the corner with a squeal to squeeze Chloe again (who was now in a stand/stay and “brace”). I held up my hand and intercepted the young lady and my hand blocked her at the chest. Although I did not PUSH, it did stop her in her tracks. I said firmly with a head shake, “NO!” She turned and ran away.

I did NOT want to place my hands on someone else – let alone a child. I didn’t injure her, but I really felt out of options. I was “rattled” the remainder of the day. I was very upset with MYSELF that the resolution to this problem ended up playing out like it did.

When All Else Fails… Be Firm

I did look around for the youngster and never did see her or her older sister during the remainder of our shopping trip. When something doesn’t go according to plan I tend to beat myself up about it I’m afraid! I kept thinking about other options I may have had, and tried to think of what I might do should this happen again. (I’m open to suggestions – grin).

Sometimes we can try to advocate in a positive way – and the situation may just fall apart. Sometimes? You just have to be firm and resolute. We should always try to be positive and upbeat at the beginning…

“It would assist me in staff meetings if everyone would just pop a hand up before speaking so I can locate who is talking”.

“I can easily do my share of answering the phone if I had access to a captioned telephone that would provide understanding for when I don’t hear everything”.

“She’s not a pet. She’s a service dog and she can come into the store with me”.

Yet there are times we may have exhausted other options and have to stand firm.

“I need everyone to simply pop your hand up with a small wave before you speak. Thanks in advance”.

“I will require a captioned telephone so that I can do my job and share the task of answering the phone”.

“Here is a flier about what the ADA says about my rights. I’ll be over there shopping should you have any additional questions”.

I don’t think ANY of us welcome having to be firm and insistent, but there is a time and place for being firm. I try to always remember that there will be others who come after me that may also have accessibility issues. How I handle a situation may condition someone with normal hearing to respond to the next person they interact with who has a disability. There are times, however, when all pleasant and positive avenues have been closed to you. Even in your firmness… keep your cool. Keep it short and stick to the facts. My husband grins and tells me, “Denise! TMI. Keep it short! They don’t care about your background or care to hear your story”!

Accents, Foreign Languages, and Hearing Loss

The great thing about our country is the diversity. Because of where I live there are a large number of minority populations who speak English as their SECOND language. I do not speak an oral foreign language so I’m a little jealous of those who can! My mother taught high school Spanish for over twenty years, but her children never learned (much to her dismay). I have a lot of respect for people who speak English as their 2nd language. It is difficult, however, to understand language when an accent distorts the way a cochlear implant and/or hearing aid pick up the words. I have trouble understanding people with thick accents that may speak PERFECT English. I even have problems with American accents such as folks from Boston, Texas, etc. (I understand “Southern” as I lived there for so long!)

However, the fact that I have difficulty with accents, is MY problem. People with hearing loss should have patience with those who speak other languages as their primary language. I have heard late-deafened folks demean and criticize those who speak other languages. I always think to myself, “Really?” It is far more productive to explain that you have a hearing loss and have trouble understanding when an accent is present. Let them know that you are aware it is your problem, and pleasantly ask if they can perhaps speak slower and face you when they speak. I’ve overheard HoHearies blast people with heavy accents – as if it is THEIR fault! Always – ALWAYS – remember you are an advocate for others with hearing loss whether you signed up for it or not! If you are negative, critical and defensive, you are having a negative influence on how the rest of us are treated in the future. Yes, it can be frustrating and even embarrassing to have to ask someone with a heavy accent to repeat themselves again and again. But “own” the problem as yours – it isn’t their problem. It’s a big thing to be fluent in more than one language, so treat them with the respect they deserve.

Denise Portis

© 2011 Personal Hearing Loss Journal