Tag: chronic disease

Sometimes It Takes Work to Stay Positive

Published on by hearingelmo4 Comments

uphill-battle

When my alarm goes off, Milo (who is laying in a ginormous dog bed on the floor by me) hops up and nudges my face and arms. There are days where my eyes pop open and I lay there for a few minutes giving myself a pep talk. Milo isn’t into pom-pom’s and cheering… he just wants breakfast. This means I can’t lay there contemplating all that is “Denise” very long.

Do you ever have trouble getting out of bed? I’m not talking about because you are sleepy. I do not mean the kind of lazy-bone feeling you have when it is rainy and cold out and you just want to stay cuddled up in the blankets. I’m talking about the weariness that comes from having to psych yourself up

one

more

day.

It can be difficult. Don’t get me wrong. I recognize that I have so much to live for and that I am blessed. PsychCentral recently wrote about what NOT to say to someone with depression. The piece included a great number of platitudes that people say to someone who struggles with depression. Some that I hear a lot are:

  1. There are a lot of people worse off than you.
  2. You have so many things to be thankful for! Why are you depressed?
  3. Happiness is a choice (this one kills me because it is actually the title of one of my favorite books!)

Several years ago I saw a quote on social media that said, “Telling someone they cannot be sad, depressed, or anxious because others have it worse is like saying someone cannot be happy because others have it better.”

Yes. I do know people who are “worse off” than I am. But by what measure?

Like many with chronic illness, or visible/invisible disabilities, I have good days and bad days. I would suspect that most people who talk to me each day in person – at work, class, check out lines, or walking – believe I am a very cheerful person. Fact is? I work at it. It does not come easily to me.

At 50 years old, however, one thing I have learned is how powerful a smile and encouraging word are to others. I try not to think about my limitations. That’s so… limiting! Instead, I work to make a difference each and every day, even if all I have the energy or ability to do is be genuinely friendly and encouraging.

I love Fridays. On February the 17th, I posted this picture and caption on FaceBook:

Sweet and loyal ❤️ beat at my feet. Ready to work as soon as I need him! Which... was two seconds after this pic since I looked up too fast, got dizzy, cracked my head on the podium, and dropped my remote. He takes it all in stride. 🐾
Sweet and loyal ❤️ beat at my feet. Ready to work as soon as I need him! Which… was two seconds after this pic since I looked up too fast, got dizzy, cracked my head on the podium, and dropped my remote. He takes it all in stride.

What I did NOT post, is that later that day when I arrived home weary but safe from a long week doing what I love, I had a seizure. Right there on my front porch. It lasted all of ten seconds and I knew 20 minutes beforehand it was coming. Milo was safe in the back yard and I a l m o s t made it to the door. (No worries – I know that a frontal head bump, fatigue, and Meniere’s flare are the recipe for a “fall down go boom”. I have regular contact with my doctors and “we’ve got this” – promise!)

When I got home from work today, one week later, I find I am still thinking about that and a little peeved about the permanent issues of having multiple concussions. Each Friday, I feel as if I have pushed a “happy Denise” uphill all week long. It is hard. It isn’t so hard that I cannot do all that I CAN DO. Sure, I may be naive to think that my smile and small acts of kindness make a difference. But I choose to believe. I believe because someone else smiled at me and encouraged me. When they did I had the wherewithal to press on – one more day.

smile-and-encouragement

Denise Portis

©2017 Personal Hearing Loss Journal

 

When They SHOULD… but they DON’T

Published on by hearingelmo6 Comments

support

Do you know the #1 topic of emails to Hearing Elmo (or face-to-face for those of you who know me personally) is support or the lack thereof? I have not met a single person with acquired disability, chronic illness, or invisible condition that took on their “new normal” by choice. We need support.

People need other people. I don’t care if you are an introvert and “loner”, or a gregarious, extrovert. All of us need human connections to some degree. I hypothesize that those of us who live with acquired disability, chronic illness, or other invisible condition may need solid, supportive relationships even more than those who do not face daily challenges. Coping is TOUGH stuff, and geesh… don’t I hate we don’t burn calories for all the work we put into COPING? In psychology,  we have a special term for how important our relationships are to adjustment – psychosocial adaptation. Bishop (2005) explains this better than I could: Psychosocial adaptation “may be conceived as a process of responding to the functional, psychological, and social changes that occur with the onset and experience of living with a disability, chronic illness, or associated treatments” (p. 6). There is a ridiculous amount of research on how important relationships are to an individual’s psychosocial adaptation. Intimate relationships are imperative to the quality of life for individuals who are differently-abled. All very interesting STUFF, in my humble opinion, but not at all the goal of or intended topic of this post.

Intimate Relationships

When we hear the word “intimate” we may think of sexual expression. Maybe we think of fancy-smancy underwear. (So aren’t “we” the weird ones?). Intimate relationships are interpersonal relationships that are physically OR emotionally intimate. This means that we can have close friends or family members who have an intimate personal relationship with us in that they know us very well. We have let down our guards at some point and shared things with them that others have no clue about nor care. Yes, intimacy is often physical as well, and those of us who have a physically intimate partner in a spouse or significant other, count it a major blessing to also be a friend to this individual.

Our expectation of our intimate relationships is “through thick and thin” (and I don’t mean WEIGHT). We expect these folks to love us on our good days and our bad days. We know we can belly-ache to them and they won’t think less of us. For those of us who took traditional vows, we put a lot of faith in “till death do us part”. These folks know us – and love us anyway.

When acquired disability or chronic illness enters a life unexpectedly, we rest in the knowledge that our spouse or significant other, and intimate connections with friends and family members will strengthen us and help us adapt. We have this HOPE and expectation, yet so many share with me that they were let down by someone they had counted on to BE THERE for them. Some of you have even had to deal with broken relationships. Others may have partners and friendships that have stuck like super-glue, but you cannot help but feel as if you are a burden and that these folks feel “stuck” with you.

Perhaps someone shared with you that they get tired of how tired you are. Maybe they shared or insinuated that life with you sure is HARD. As if things weren’t hard enough, someone you depend on is tired of your diagnosis too? Thanks so much for that…

I know. Not a single person reading this post hasn’t at some point wished they could have just ONE day of normalcy. “If I could just have 24 hours of normal, it would re-set my gripe-o-meter box”, shared a long-time reader. Yup. I get that! So for someone in our intimate circle to complain that they are tired of all that WE are tired of? It’s enough to make you want to spit. Or hit someone. Or SPIT while HITTING someone…

So what do you do when you realize that those who support you are having trouble supporting you? I have three tidbits to share.

1. If the Shoe Were On the Other Foot

Please don’t lash out and tell your significant bozos (cuz at the point you are mad at them for their lack of support means they have morphed from close relationships to close BOZOS), that if things were “the other way around” you would TOTALLY be there for them – ALWAYS.

This, my friends, is impossible to prove. YOU are the one dealing with a significant, life-changing diagnosis. We don’t know how we would react to “the shoe being on the other foot”. Criticizing and attacking another by insisting we would support and behave differently is not fair, nor is it justified. There are numerous studies that support that stress and anxiety can be vicarious experiences by those who support people who are struggling.

I believe one of the very best things we can do for those who support us is to acknowledge up front that WE KNOW THIS IS HARD ON THEM TOO.

2. Engage in Active Listening

All relationships benefit from active listening. Active listening was made popular by psychologist, Carl Rogers, in the 50’s. Many different counseling approaches now incorporate active listening to engage in good communication. One of the best descriptions of active listening that I’ve read can be found HERE. It is five WONDERFUL pages of all that is Active Listening. So I’m not going to take the time to explain it here and instead am giving you a “homework assignment” <wink>.

3. Yes, They Should. But… They Don’t

I cannot boast of 100% supportive relationships, nor brag that I’ve handled my own acquired disabilities with grace and diplomacy. Even though I’m in a “good place” right now with numerous supportive relationships, I have been disappointed by some of my relationships, and have even lost some folks along the way.

It hurts.

The biggest mistake one can make in shouldering all that encompasses living with significant challenges, is trying to do it alone. You are not alone.

For one thing, you are reading THIS. I care.

The Internet insures that we are NOT alone. The Internet is accessible to even those with significant challenges. If your intimate relationships and friendships have let you down, please know that you need others. Find them.

Places you can find support:

1. The newspaper: Many list various support groups and networks available for numerous types of challenges and health issues.

2. Churches: Many have support groups and networks available to both members and non-members.

3. Libraries: Many have community services bulletin boards (both physical and on-site, as well as electronic) that list numerous support groups.

4. Online forums: One only has to “Google” their diagnosis to find numerous avenues of support online. One great searchable database can be found HERE.

5. National non-profit and for-profit organizations: Most diagnosis also have organizations that provide education, advocacy, and support at the local, state, and national levels. Search the Internet for organizations that provide resources for your specific population. Many have support networks as well.

6. FaceBook and other Social Media Outlets: You’d be surprised what support resources are available on FaceBook. Many are closed groups as well as have confidentiality tenants of membership.

7. Start your own: I’m not a big fan of “wiki” anything (I suppose it is the teacher in me), but I have to admit, WikiHow did this up right. Check it out HERE.

Cut ‘Em Some Slack

Finally, I’d be a poor advocate if I didn’t give you heads up that people are going to disappoint you. Forgive them.

You are going to have a really bad day and need all kinds of support, practically draining those around you DRY. Dehydrated people can lash out. Forgive them.

You will struggle with having to live your life yet another day – so very tired of it all. Someone will point this out. Mock you. Complain about you. Forgive them.

Someone will try really hard to support you and come up short. Their personality or own needs simply do not allow them to be exactly what you need them to be. Forgive them – and support THEM.

You are going to have the kind of day where you are just done with EVERYONE. You burn your bridges, isolate yourself, and find yourself very, very alone. Forgive yourself. And rebuild.

Denise Portis

©2015 Personal Hearing Loss Journal

Bishop, M. (2005). Quality of Life and Psychosocial Adaptation to Chronic Illness and Acquired Disability: A Conceptual and Theoretical Synthesis. Journal Of Rehabilitation, 71(2), 5-13.

Rogers, C. R., & Farson, R. E. (1957). Active listening. Lexington, Massachusetts: D.C. Heath and Company.

Illness Saved My Sex Life

Published on by hearingelmo13 Comments
Rachel and husband on her wedding day...
Rachel and husband on her wedding day…

I cannot remember who found “who” first. Rachel Meeks and I have exchanged emails and virtual “high fives” for a couple of years now. She is the talented and witty author/owner of “Do I Look Sick?”. You can check out her blog here: http://doilooksick.com/  Rachel has a knack for telling things like it really is. Folks with invisible illness and disability have trouble articulating what it is like to live “this way”. Rachel doesn’t have that problem and welcomes dialogue and comments on her blog. Recently, SEX was discussed here at Hearing Elmo. Even folks without disability or invisible illness shy away from the topic. Not us. It is Rachel’s – and my own – hope, that by openly talking about this topic, people may discover they are not alone and that there are others who deal with the same issues. Hearing Elmo, welcomes Rachel as a guest author this week!

Just after I got engaged to my high school sweetheart, I was diagnosed with endometriosis. All chronic illness has an effect on sex, but endo especially so – it’s a chronic pain condition in which the lining of the uterus ends up outside the uterus, causing intense pain centered around the uterine area – AKA all your sexy bits are the parts of you that are “sick” and hurting. That’s not really something you want to tell someone who thought they were marrying a…to be frank, normal person. Sex isn’t everything in a relationship, but it is a lot – especially to men. I’m not saying that to be sexist or anything, I just mean that there’s scientific proof that men have a greater physical need for sex, and that their minds are more geared towards sex romantically speaking. The way that long talks and thoughtful gifts say “I love you” to a woman is the way that sex says “I love you” to a man.

That’s what I’ve come to know after almost four years of marriage. But when I was a 19 year old fiance, I had a very different idea of the role sex plays in a relationship. In my mind, sex was like, the second most important thing just under love. And I had grown up believing the stereotype that men enjoy sex more than women, and that it was mostly an act of giving. That’s a nice fluffy way of saying I didn’t know anything about it because I didn’t think I was supposed to. I didn’t know what I liked or didn’t like sexually, I wasn’t very familiar with my own anatomy, and sex was actually even embarrassing just to think about, much less talk about. So now, I wasn’t faced with talking about sex – no, it was worse. I was going to have to talk to the one person who I really desperately wanted to like me and only know the best things about me, and explain things I barely understood. I’d have to explain the gross stuff that makes up my period was all over my gross organs. I’d have to use the word “uterus.” I was embarrassed enough to die. Luckily, he really loves me and never had a thought of calling off the wedding – even with a foreboding sexual forecast and the possibility of fertility problems down the line.

Rachel 2

“Coming out” to him about my condition was a pretty good indicator of how our sex life was going to be, even if I never had endo. I’ll be blunt – sex was awkward for us. We had passion and desire but we also had totally unrealistic expectations of TV sex that’s always perfect. We both really wanted to have that wordless, passionate sex that you see in movies. Without any feedback or communication, neither of us was getting a lot out of our sexual experiences. They were nice. They were just ok. They were….very odd. So we thought we must just be bad at it. It also didn’t help when it was extremely painful because of endo. We both felt like such losers. You never hear about this kind of thing. Couples get married and you just assume that because they’re in love, sex is smooth sailing. It’s actually really complicated, and I wish the world was less hush hush about it. At the very least, I wish things were open enough that we would have somehow known we weren’t the only ones.

After we became disillusioned about magical movie sex, we got bitter and mean. We wanted to have sex, but I was always hurting and we didn’t know how to talk about it so usually when we’d try, it would turn into a fight. What’s interesting is that when you get angry, you also get honest.

After our stormy stint of fighting over sex, we went through a dry spell. We lost the anger, but kept the honesty. I started talking to him more about endo and even bringing him to the OBGYN with me. We’ve always been best friends who could talk about anything – except sex. Once we started talking about endo, we broke down the last barrier between us. We became closer than ever. And we brought that talking to bed with us. We let each other know what feels good and what hurts. We give a heads up when we’re going to change positions or we want to try something new. We actually tell each other what we want and what we like. If I didn’t have endo and we didn’t have to go to the hospital and I didn’t need his help, I might never have opened up and talked with him like this. Now that he has a chance to fully understand my disease, he can help me with medical decisions too. But most importantly, we can both have a real sex life now – not only a fulfilling one physically, but also emotionally.

Endo sucks, and it sure makes sex a challenge. But I can also look at it as an opportunity for us to grow closer. When it feels like your illness is in the way of intimacy, try to see the way around it. It may just be better than your original plans.

Rachel Meeks

Do I Look Sick?

————

Denise Portis

Hearing Elmo

We Need Them

Published on by hearingelmo3 Comments

20121223-182709.jpg
With 3 of my 4 “heartstrings”, a group of cochlear implant ladies – some who also have Meniere’s – who connected through our hearing loss.

I am visiting my parents in Florida as I write this. I haven’t seen them in over a year, so with a lot of cajoling, I talked my husband into giving up a week of his vacation time to go see his in-laws. We went to church with them Sunday morning, and I expected a “Christmas Sermon”… not that this is a bad thing. Their pastor, however, mentioned some things that I had never thought about before, and at my age I was surprised about being made to THINK about some new things regarding the Christmas story.

He read from Luke and brought up that Mary, mother of Jesus, went to stay with friend and cousin, Elizabeth. This was right after Gabriel told her, “Guess what? You will become pregnant”. In that time a 14 or 15-year-old betrothed virgin couldn’t very well go tell mom, dad, and fiancé that she was pregnant. Women were stoned for that… not that they would have ever believed her “I’m still a virgin” story anyway. So off she went to see Elizabeth. Gabriel told her that Elizabeth, too, was miraculously pregnant – simply in a different way. Elizabeth was far past child-bearing age. Her pregnancy was also a miracle. Perhaps Gabriel was giving a hint… GO SEE HER. The pastor suggested Mary NEEDED a friend and someone who would understand. God knew this. Gabriel knew this. Mary needed someone who was pregnant that shouldn’t/couldn’t be, and someone visited by an angel. She needed a friend who was going through similar challenges.

Do We Need Friends?

I have friends from my childhood. I have friends at work. I have friends at church. But do you know the friends I depend on the most are those who struggle with invisible illness or disabilities? Like Mary seeking out a friend and confidant who was also miraculously pregnant, I have sought and found friends who are “differently abled”, who face each and every day with challenges others simply do not have.

Abraham Maslow was one of the first psychologists to suggest we need relationships; we need FRIENDS. Cherry (2012) writes of Maslow’s Hierarchy of Needs, “Relationships such as friendships, romantic attachments, and families help fulfill this need for companionship and acceptance, as does involvement in social, community, or religious groups” (para. 6). Many professionals agree, we need friends.

I have friends that are different than me in personality, beliefs, politics, and culture. Despite these differences, they are my friend. When I’m having a really bad “tilt a whirl” kind of day, falling and bruising, and frankly SICK TO DEATH of having to deal with it all, these friends can sympathize. Yet, the friends I seek out to belly-ache, ask for advice, or beg for prayer even, are those who can EMPATHIZE.

“Empathy is the ability to mutually experience the thoughts, emotions, and direct experience of others. It goes beyond sympathy, which is a feeling of care and understanding for the suffering of others. Both words have similar usage but differ in their emotional meaning” (Difference and Comparison, 2012). My closest friends are those who can empathize. They “get it”.

People with invisible illness or disability often fall into a dangerous, self-imposed isolation. Rubinstein (2012) suggests that there is a difference between solitude and isolation. Solitude is healthy, something most of us do not take the time for, missing out on opportunities to meditate and re-charge. However, isolation is different. It is a negative thing… “We don’t feel better by spending time alone, or if we do, it is only that our anxiety about being around people is quelled” (Rubinstein, 2012, para. 2).

When my progressive hearing loss began to cause significant communication issues, I slowly but surely began to isolate myself. It took an “intervention” of sorts to wake me up to what I was doing. We may isolate from friends and family, all the while trying to convince ourselves that by doing so we help others as well.

“When I move to fast and pass out, it only upsets others, which isn’t fair to them.”
“I hate being trouble to anyone. Best I stay home.”
“My disability makes folks uncomfortable. I’m doing everyone a favor by not participating.”

I know some folks with logical reasons and sound argument for why they do not need friends “post-invisible illness or disability”. Have you ever thought, however, that even if you are better off you are robbing another of the gift of your own friendship? There are others dealing with invisible illness. If you do not make yourself available, you may miss opportunities to empathize and connect with others like yourself. Who better to recognize another with invisible or chronic health concerns, than someone who lives the same?

We need friends. Others need the gift of your own friendship. Make yourself available!

Denise Portis

Cherry, Kendra (2012). Hierarchy of Needs: The five levels of Maslow’s Hierarchy of Needs. Retrieved on December 23, 2012, from http://psychology.about.com/od/theoriesofpersonality/a/hierarchyneeds.htm

Difference and Comparison (2012). Empathy and sympathy. Retrieved on December 23, 2012, from http://www.diffen.com/difference/Empathy_vs_Sympathy.

Rubinstein, Noah (2012). Isolation: Issues treated in therapy. Retrieved December 24, 2012 from http://www.goodtherapy.org/therapy-for-isolation.html

Who Is That Person?

Published on by hearingelmo2 Comments

The bathroom downstairs is decorated with cats. Lots of them. (Yes I know… decorating a bathroom with “cat stuff” is unusual, but it is what my cat-loving children picked out!). The above picture hangs in the bathroom near the sink. As a result, I’ve given a lot of thought to this painting!

Who IS that?

This morning I was getting ready and caught sight of myself in the mirror. I had already fixed my hair, put on my make-up and “made pretty”. Yet, I was taken by surprise at what I saw in my reflection.

It’s raining today. We really need it too. Yet… I really dread rainy days. I usually know it’s raining even before I roll out of bed in the morning. I get this “sense” that all is not right. Weather systems do a number on my balance and I walk like a drunken sailor if bad weather prevails for more than a day or two. Looking at my reflection I could see IT on my face. Fatigue, dread, worry, and acceptance of the unavoidable. There it was in the reflection in the mirror. You would have to really know me to notice. Something in the eyes… tension in the facial muscles. Since I know myself pretty well (grin)… I could spot it right away.

Am I Defined or REFINED by Acquired Disability

The people I find most difficult to be around are those who “knew me when”. Folks who grew up with me – my parents, siblings, and family members – have a hard time being around me I think. I’m not who I was. My family are spread out all over the United States. We are currently in four different states, and unfortunately this necessitates rather infrequent visits. (Thank goodness for Facebook, email and SKYPE so that we can at least touch base virtually). My immediate family (husband and children) transitioned along with me as my life gradually changed from “what was” to “what is”. It seemed less like CHANGE to them, for life changes gradually grew who they were as well. However, when you haven’t seen someone in a very long time and then have the opportunity to be with them, changes are not only obvious they can be surprising!

I’ll never forget shortly after receiving my bionics and cochlear implant, I was visiting my sister while I was in Texas on business. I reached up to remove my CI to hand it to her so she could look at it because she seemed a trifle intimidated by it. She screeched, and said, “No, NO! Don’t take it off!” I got the impression she thought I was going to remove it from my brain or something! As if removing it meant you could peer down into the cavity of my skull! Her grimace and horror at what I was trying to do really threw me off! At first I was REALLY hurt (I’ll just be honest here). I couldn’t believe that in something so life changing for ME, that someone this close to me had done so little investigation themselves about what my having a cochlear implant would mean. But honestly? Researching and finding out more information about the CI that would change MY life is not HER job. I should continue to be the best DENISE I can be, using whatever means necessary to “do a good job” at that. It isn’t her job to completely understand what that transition will look like nor to completely understand the technologies I use to cope and HOPE.

Adaptation is “A change by which an organism or species becomes better suited to its environment” . My family and I have made adaptations. I don’t believe my disability DEFINES me, but it’s ridiculous to pretend it isn’t part of who I am now. I do believe it REFINES me. This isn’t a NEGATIVE thing. I’m still me… but a BETTER me because of the things I’ve adapted to as the result of having an acquired disability.

But sometimes… like this morning… I do a double-take when I see IT in the reflection of the mirror. I suppose it’s because there are days – thankfully few and far between – where my hearing loss and Meniere’s disease get the best of me. It would be so easy to just turn around and crawl back into bed. Heck! Honestly? There are days that would be the WISEST thing to do! I think of the people I know who are living with Lyme disease, Chronic Fatigue Syndrome, Fibromyalgia, MS, HIV, or cancer. Invisible disabilities and chronic illness that, unless you knew the background and testimony of the person standing in front of you, one would never know the courage it takes to live life each and every day with some semblance of normalcy.

Standing and looking in the mirror – you may notice a little bit of IT peeking out at you from time to time. I walked away from the mirror this morning totally OK with the fact that the stress of my life was showing a bit in my reflection. I don’t have to let how I FEEL influence the way I BEHAVE. Frankly? I think every person has days they have to try a little harder to PUT ON A HAPPY FACE. They don’t have to be people who live with invisible disabilities. It’s normal to have bad days. And normal? Well… that’s just exactly how I want to be.

I’ll leave you with a super song that I discovered long ago when that animated movie “Mulan” first came out in 1998. It wasn’t until I saw the lyrics for the first time that it was really driven home – the truths of reflection for every woman, every person, every individual living with invisible disabilities or chronic disease. When will my reflection show, who I am inside?

Truthfully it shows every single day. You just have to look harder on some days than on others. I don’t ever stop being ME though. I usually walk away from the mirror pretty satisfied with the evidence of things not seen on the surface. May we all be great reflections of who we are INSIDE…

Denise Portis

© 2010 Personal Hearing Loss Journal

“People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within.”(Elisabeth Kubler-Ross)