Thursday, April 18, 2019

I Can’t Believe You Just Said That?!?

Life with a chronic illness comes with a wide variety of physical symptoms that can make our day-to-day life quite a challenge.  Unfortunately, our actual illness is only one piece of life with a chronic illness.  With it often comes many other things, including loss of friendships, a strain on relationships, financial hardships, and many lifestyle adjustments, to say the least.  There’s something in particular that I want to talk about today though because it happens a lot, especially to those of us with “invisible,” rare, or often misunderstood illnesses.  And that is the questioning, judgment, and comments that others either unintentionally, unknowingly, or simply unkindly say to us.  

We undoubtedly live in a society where judgment and criticism are quite prevalent.  I don’t think there’s anyone that hasn’t had at least a good handful (or more!) of unkind digs come their way.   What I am talking about today though is something a bit different, something that unfortunately happens quite often to those of us with a chronic illness.   And that is comments, suggestions, judgments, and questioning directed at us related to our illness – the validity of them, how we live our life because of them, and even what they feel the “miracle cure” for us is.

Here's a few to give you a flavor of the types of expressions I’m talking about:

You can’t be that sick, you look fine.”

“Yea.. I’m tired too.  I didn’t sleep at all last night.”

“I know how you feel, this cold has really hit me hard.”

“I’d love to stay home all day; you are so lucky!”

“Drink more water!  That will perk you up.”

“You just need to push past it.”

“If you get up, you will feel better. Laying around all day isn’t going to help”

“Have you tried taking more vitamin C?  I’m sure that would help”

You’re just being lazy.”

“Come on, it can’t be that bad”

“I can’t believe you canceled again.  You used the ‘sick’ excuse last time”

I’ve had comments such as these thrown my way several times and honestly, I still find myself stunned that someone would say these things to someone already going through so much.  So much that I often don’t respond how I wish I would have (or perhaps, at times, it’s good I didn’t!).  

So why does this often hit us so hard?   I think it’s because we are leveraging unbridled strength and courage each and every day to stay in the game.  To be there for ourselves, those in our lives, and to contribute as much as we can.  We are giving it our all, right down to our very core.  So, when someone questions our abilities or the validity of our illness, it’s often like a slap in the face. 

So, what do we do?  The way I see it, we have a host of options.  Here’s a few…

Decline to Respond

We can simply choose not to respond and, of course, that is perfectly acceptable.  Whether it’s because don’t owe this person an explanation, that our medical conditions are our own private matter, that we are simply too tired to explain or the comment is not worth our time and effort – whatever the reason, we can choose not to respond.  I’ve done this often myself.  Sometimes with regret – sometimes I feel should defend myself more.  I walk away kicking myself for not sticking up for myself.  Or, sometimes I miss my “moment” because of brain fog, because I’m just so shocked by the statement, or I just don’t have the energy to care enough.   Other times though, I’ve been glad I didn’t.  I probably would have said too much and in not a very nice way.   As part of the “declining to respond” bucket, we can also simply blow off the comment completely (though that can be easier said than done at times!).


Perhaps the expression was entirely innocent; the person simply doesn’t have an accurate understanding of what life with a chronic illness is like.  Honestly, some days I don’t either.  It changes daily on me!   In these cases, especially if it comes from a friend or loved one, perhaps sitting down and sharing more what’s going on is something that in the end may be most beneficial for the relationship.   These comments also sometimes come from mere acquaintances or even strangers.  So, what do we do then?   Do we share and hope that we’ve helped create a greater understanding with a member of society that will show more compassion and understanding with us and others going forward?  Or do we simply walk away – it’s not worth our time or energy and it’s none of their business?

Set Them Straight

This sounds harsh, but I mean it more so as being very direct.  There are some people in our life that we spend a lot of time with, they see our challenges, and they still don’t “get it.”  For example, we may have already told our loved one five times that our level of exhaustion isn’t the same as a “bad night’s sleep” for them.  And they still don’t get it.  So maybe it takes a creative analogy to resonate with them, a day in the life story, or a heart-to-heart talk about the impact of their comments.   Sometimes I remind myself how clueless I was before I got sick about what life with a chronic illness truly was like.  Yes, I listened, I supported, and I cared for others with an illness.   But that still is not the same as having a chronic illness yourself; you don’t know, until you know...   And then there’s others that you can talk or show them what your life is like until you are blue in the face and they simply will never get it or don’t even try to get it.   These are the most challenging ones, especially if they are part of a key relationship in our life.  The comments often mean more and the lack of understanding digs deeper.

I don’t have all the answers here.  I think the response we choose to give is so very personal to each one of us and to every individual situation.  These are just some of the thoughts that have run through my mind when it’s happened to me.  I think what’s most important is we need to keep focusing on ourselves and our own needs and self-care.   Yes, these comments may infuriate us, hurt us, and make us cry at times and sometimes we just have to let ourselves process those feelings and figure out what it means on the whole to us.  At times it may mean assuming positive intent.  Other times it may mean moving quickly past it or even the relationship.  Only we can decide what route to take and when. 

I do think it’s a shame that this is such a prevalent experience among us.  We have so much on our plates already; we don’t need more.  Knowing that this often seems to come part and parcel with a chronic illness though, it makes me so proud of every single one of us.  That we are that resilient and strong that we can deal with our illnesses – and all the rest that comes with it. 

There are many advocates and educators within our community and beyond that are working hard to change the stigma and the misconceptions that are out there.  I have much hope that we can change the world a little bit each day.   I have hope too that the stigmas, the comments, the judgments – all of it – will eventually, in time, evolve into a more supportive environment for us all to live in.  Many of us already are part of the change, showing and sharing what life with a chronic illness is really like.  Moments like this... they have a ripple effect.

Thursday, April 11, 2019

Emotional Superpowers?

Would it seem out-of-this-world if I told you that we all possess a wide variety of superpowers?  If so, hang on, because I’m about to share with you quite a bit about your superpowers!

It all starts with emotions.  There’s a tendency in society to label certain emotions as positive or negative.  Based on what I’ve learned through reading The Upside of Your Dark Side:  Why Being Your Whole Self – Not Just Your “Good Self- Drives Success and Fulfillment [1], this is far from how we should be viewing emotions.  Rather all emotions provide a robust amount of information to us.  For example, feeling good or bad lets us know about the quality of our progress, our interactions, and our environment.  As you may have experienced in the past, if you try to escape these emotions, you will miss out on this valuable information.

Life with a chronic illness can provide us with a roller coaster of emotions, which is why I’ve decided to do a bit deeper dive into this topic.  I want to understand more of what I’m feeling, what it all means, and what I should do with them.

So, let’s chat a bit about some of the emotions that often come with a chronic illness and see how they can be valuable to us, or more importantly, how they can become our super powers.

Let’s begin with anger – as it’s a pretty provocative emotion and one that many of us feel, whether about our illness or how people have treated us because of it.  Let’s first start with the premise that anger itself isn’t good or bad.  It’s what you do with it that matters.   When you think back on times when you have been angry, have you noticed that it may have caused you to take a few more risks?  Sometimes, taking a risk can be a really good thing.  For example, perhaps it provided the motivation you needed to share your feelings when you may have otherwise repressed them.  Doing so in a healthy manner can transition a hurtful situation into an understanding one. 

As I noted above, anger generally can motivate us to take action when perhaps we would not have done so.  By taking action, we also feel more in control.  If there’s one thing that life with a chronic illness comes with, it’s a lack of control in a lot of areas.  So, by allowing ourselves to feel our anger and put it into a productive course of action, we are gaining back some of that control.  Living in a world of ever-changing symptoms, adding control back into our lives is certainly a nice addition!

The next set of emotions that often comes hand-in-hand with a chronic illness is guilt – or it’s not-so-pretty partner, shame.  Feeling guilty is a tricky one when you live with a chronic illness.  The key question to ask in these moments is whether what you are doing is hurting or helping the situation.  Many of us feel guilty for declining invites, not getting enough done around the house, or not making it in to work because of our illness.  In these cases, the guilt is unwarranted.  By taking care of ourselves first, we are doing what we need to do to take care of our health.  We should not feel guilty for taking care of our core needs.  

There certainly are situations in which we should feel guilty for, such as being unkind to a friend or disregarding someone’s feelings.  In these cases, guilt acts as our moral compass and is a call to action to us.  It reminds us to be more sensitive in these situations.

In contrast, there is shame.   Unfortunately, many of us have encountered people trying to shame us for canceling plans, needing help, or even for being sick.  While guilt can be helpful – giving us a moment to reassess whether the situation at hand is something that we should feel guilty for (prioritizing our health is not one of them!) and if it is, the insight to respond accordingly, shame, on the other hand, is not helpful.  Shame strikes at the core of who we are as a person.  As such, it’s much harder to recover from than guilt and often can escalate the situation.  For example, has someone ever questioned the validity of your illness or the severity of your symptoms in a way that was condescending and hurts you to the core?  This emotional expression, shame, is not expression that helps any situation; rather it tends to crack relationships and shatter trust. 

The last emotion I want to touch on is anxiety.  Many of us experience anxiety, as we often don’t know what one moment or day holds to the next when it comes to our illness.  In these situations, anxiety can be a very healthy, helpful emotion.  It can be a great source of information for us.  If we can maintain the right balance of anxiety, it can help us in many ways.  It can heighten our perception of a situation, amplify our senses, and increase our ability to solve a problem.  For example, by having heightened awareness, we may be able to spot a symptom trigger before it turns into a full-blown flare-up.  Essentially, it’s our human alarm system.  We just need to make sure that we listen to it (rather than let it paralyze us) and respond in a healthy manner.  When we do so, it becomes our strength.

These are just a handful of emotions that are touched on in the book, but ones that I felt were relevant to issues we often face, sometimes daily.  I love the authors’ abandonment of the notion of labeling any of these emotions as positive or negative, discussing them instead from the perspective of each being valuable sources of information to us.  Anger, guilt, anxiety, and other “negative” emotions are really helpful in surprising ways, giving us more courage, regulating our behavior, and keeping us alert to our surroundings.   When we use them to our advantage and in healthy ways, they are sources of information that can really benefit us and lead to a more “whole” and fulfilling life. 

As the book states, “[w]hen you think about your emotions in light of the benefits associated with all feelings – positive and negative – you realize that you don’t just have one superpower, you have many.”
[1] Todd Kashdan, PhD, and Robert Biswas-Diener, Dr. Philos. (2014), “The Upside of Your Dark Side:  Why Being Your Whole Self – Not Just Your “Good Self-Drives Success and Fulfillment.”  New York, New York:  Hudson Street Press

Saturday, April 6, 2019

Chronic Illness Tips, Tricks, and Hacks

Life with a chronic illness, especially ones that there is little medical support for, entails trying to find options, any options, that provide some sort of relief or that minimizes the pain.  Thank goodness for Google, Facebook groups, and friends with similar illnesses. You all have helped me immensely along the way in this journey.  So, I’m coming back to you for more! 

First, though, I’ve been the lucky recipient of your knowledge; so, now I want to give back and provide you with my top 20 tips, tricks and hacks that have worked for me.  I can’t take full credit though for this list – you all have helped me compile much of it. 

I would love your help in adding to this list; I will happily repost this article with your additions.  Simply add your tip or strategy to the blog article comments section and a note if you want to be named in the repost.  

Here we go! 

1.      Lavender Heated Sleep Mask:  The feeling of just a bit of heat over your eyes or on your forehead is magical.  It lulls you to sleep and can chase away a migraine.  Lavender is known to offer a calming effect that also serves as a great sleep aid.  Tried and true!  It really works! 
2.      SpaMister:    Building on the lavender success theme, adding to a spa mister a few drops of lavender oil to the water can be a sleep booster at night.  It’s always hard to tell if these things really work but for me, if I start it up before bed, all I know is that entering my bedroom to go to sleep, smelling that sweet lavender scent instantly sends me into a calming state.
3.      Meditation:  The power of meditation is often underestimated.  While it can take a bit to get the hang of it, it soon can be your first go-to for getting through difficult medical procedures, moments of feeling overwhelmed or frustrated, or even simply times where you feel you need a little extra peace or calmness.  It’s also great for days when you feel over-stimulated.   There’s many great options, including the free version of the Calm app, general meditation DVDs, or even free online sessions.
4.      Gentle Yoga  While you may not have had back pain before, spending hours in bed or on the couch can certainly bring it on.  There are several gentle yoga DVD’s that can help softly stretch your muscles, while not taking too much energy.  Even simply staying in a “child’s pose” for a bit can often relieve back pain a bit.
5.      Lumbar Cushion:  A lumbar cushion can also be quite helpful for supporting back muscles and reduce back pain when sitting.
6.      Ear Plugs:  Many people have told me about their sound sensitivities and for the longest time I just thought that this was one of those symptoms that I didn’t have to a large extent.  However, I have more recently realized that I do it; I was simply misunderstanding and very unaware of how sound was affecting me.  Recently, a friend told me that being in the rather loud restaurant we were in wasn’t good for her.  When I asked her to explain it a bit more, she shared how while it doesn’t necessarily have to “hurt” to be in loud noises (though I have been in a situation where loud noises have caused an instant flare-up), it’s the over-stimulation that being in a loud place creates that can cause our bodies to deplete our energy trying to manage it.  Once she said this – BINGO!  I realized that I have felt extra exhausted after such events but had just never made the connection.  She shared an easy solution for me – earplugs that block out peripheral noise yet still let you hear the person you are speaking with!  After asking around a bit, I learned that Vibes ear plugs was the ear plug of choice.
7.      Water Bottles:   Hydration can be a huge help to keep some semblance of an energy level.  However, the big issue I ran into with this was my lack of coordination. I was constantly knocking over my glass of water.  Cleaning up mess after mess, was exhausting.  Finally done, so done, with this issue, I bought a few water bottles with snap-tops that I use every day now – at home, in the car, or when at a friend’s house.  No mess and because I’m carrying it everywhere, I am drinking more!
8.      Heated BlanketA heated blanket can be especially valuable for those of us that have temperature sensitivities. 
9.      Clothes:   Temperature sensitivities come into play again here, along with comfort.   Layers are a must - without them, being cold can ruin a once-in-a- great-while day out.  “Restrictive” clothing is also an issue – things with tight bands can be incredibly uncomfortable.  Loose clothing, without “bands” are great finds.
10. Light Therapy Lamps:  I’m always a little skeptical if things really work, but I’ve been using a light therapy lamp for almost four months for about 30 minutes a day and my migraines have drastically decreased.  At this point, I’m pretty convinced it’s working to some level because my usage of my migraine medication has decreased and my number and intensity of migraines has dramatically dropped (they haven’t completely disappeared but there’s a very noticeable decline).  I’ve heard from many that it’s also helped them as a mood enhancer as well as for their migraines.
11. Pill Organizers:  Two words for you:  Brain Fog! If I didn’t have a pill organizer for all my supplements, I would be double-taking or missing my daily dosage almost every day.   This helps keep me organized. And if I’m being super honest, it helps me remember what day it is.
12. Handicapped Parking Pass:   I didn’t know how valuable this would be to me until I got one.  The time out of the house it saves me and the decreased distance I need to walk to go somewhere has given me a bit of independence back.  It has also help relieve some of the duties from my caretaker as on the days I do get out, I sometimes can fit an extra errand or two in and be back home and resting in the same amount of time.
13. Canes:   Admittedly, I don’t use a cane at this point. However, there are plenty of days that I feel that I should be and it has been recommended to me.  At times I’m unsteady on my feet, have fallen down the stairs, or simply need a bit extra leveling to my gait.   It’s definitely on my radar as an option.  Canes come in some pretty cool styles these days too!
14. Protein Bars:   Having one handy can really help if you find yourself in need of an energy boost.  A back-up bar can also really help get you through a longer than expected excursion out.  A protein bar or even a package of nuts, has definitely saved me more than once.
15. Phone Alarms:  Two words:  Brain Fog!   Time flies, we zone out, and all of a sudden we are running late to a doctor’s appointment.  Sound familiar?  I now live off an alarm-based system for my daily activities.   It started with just alarms, but I quickly found them going off and then not knowing what they were for.  Not wanting to be outsmarted by my own hack, I’ve now started labeling them on my phone so I know what to do when.
16. Plan Ahead:  Or as least as much as possible.  If you live in a two story, you know how exhausting the stairs can be.  Now, if I am upstairs, I try to think of everything I will need for the next few hours before heading downstairs.  This alone has saved me from a walk/crawl up the stairs multiple times a day for one-off items.
17. Roomba:   I haven’t invested in one of these yet, as my caretakers do my vacuuming, but this is coming right up on my must-have list.   Vacuuming – the push, the pull, it’s all so exhausted. The Roomba not only gets the job done but it’s a bit entertaining to watch.
18. Grocery Shopping:  Online or pick-up shopping has become a must-have for me when my caretaker isn’t able to do my shopping.   Between walking the aisles, putting things in the cart, loading the car, unloading it, and putting everything away…. Exhausting!  This task takes me down every time!
19. Amazon Account:  I have found this priceless for buying groceries and other essential items.  The delivery is quick (usually two days) and the options are plenty.  No more exhaustive trips to the store for light bulbs, toilet paper, or a new book to read.
20. Hobbies:   Finding a hobby you to do on challenging days, right from our couch or bed can be priceless.   There are many options; for me, I’ve found writing, reading, drawing/coloring, crafting, and binge-watching television (if that can be considered a hobby) to be great distractions from the challenges of the day. 

I hope this list has helped or at least got you thinking of what tip, tricks, or hacks that you can integrate into your day that will save you some time, make something easier, or minimize your pain.  Every little trick helps!  

My list is far from exhaustive.  If you have some of your own tips, please feel free to share them in the comments so we can build the list and learn from your success!

Additional great ideas from readers:

1.         Breathing Exercises:  Breathing exercises can be of great help with getting
through a difficult procedure, flare-up in symptoms, and a de-stresser.   There are some fabulous DVDs, free apps and online resources out there that can help you get a good rhythm and your strategy down.  Once you've got it down, you are ready for whenever the need arises.

Friday, March 29, 2019

With Love in the Mix..

Let’s face it, relationships have their ups and downs.  Medical conditions and chronic illnesses bring with them unique challenges. Mix the two together and what do you get?   I think that’s an incredibly interesting question. 

To that end, and in honor of World Autism Awareness Day on April 2nd, I thought I would start the discussion with something I recently watched on television this past week. During Amy Schumer’s Netflix Special “Growing” she shares of her deep love for her husband, who has been diagnosed with autism spectrum disorder.  She states, “I knew from the beginning that my husband’s brain was a little different than mine.”  She reveals how she noticed signs early in their relationship that he might be on the spectrum, but also wonderfully shared that these are some of her favorite things about him.  She states, “All of the characteristics that make it clear that he’s on the spectrum are all the reasons I fell madly in love with him.” 

It doesn’t always work this way though.  I’ve had myalgic encephalomyelitis (#MECFS) long enough to have had more than one person say to me, “that’s great that you found a partner and that he loves you despite your chronic illness.”  Despite??  Are you kidding me??   Let’s get back to what Amy was talking about…. Why is it so hard to believe that someone simply loves us, just as they are loved in their relationships?  Amy Schumer nailed it when she was talking about her husband.  You love someone for who they are.  Our conditions come part and parcel with us – there’s no “despite.” 

Yes, medical conditions and chronic illnesses can bring some additional challenges into a relationship, but they also may have shaped who we are today, that person that another adores us for.  Words that come to mind when I think of all the people I have met with my illness or other conditions are: uniquely gifted, compassionate, caring, centered, kind, generous, helpful, giving, insightful… the list goes on.  If any of us are lucky enough to meet someone, anyone, with these traits, hold on and count your blessings!

As it’s often said, love knows no bounds.  It is limitless and can overcome anything and everything.  Love is one of the true beauties of the world. To love someone is to know who they are and love them for it.  So, for anyone wondering how someone can consider entering or being in a relationship with someone with a medical condition or chronic illness, I have to say – you are closing your heart out to something truly incredible!

I would love to hear what you think!  I’ve purposely left this article a bit open and short as I think that personal experiences are what will be the most insightful on this topic. I would love to hear how you’ve fell in love with someone or they fell in love with you when there’s been an illness or medical condition in the mix.  How did it impact it?   How has it enriched the relationship?

Lastly, I want to take a moment to encourage anyone that is not aware of autism spectrum disorders to learn more about them.  While April 2nd is dedicated to raising such awareness, every day is a great day to broaden our horizons and learn more about the people we share this world with.  I know many people with autism spectrum disorder and feel honored they have welcomed me into their life.  To them I say, thank you for being you and for sharing your world with me and letting me share mine with you! 

**April is World Autism awareness month, a month where friends and neighbors around the world come together to increase global understanding and acceptance of people with autism.  There are a vast number of amazing organizations dedicated to autism, including the Autism International Foundation, Autism Society, Autistic Self Advocacy Network, Autistic Women & Nonbinary Network, and the National Autism Association that can provide more information on this condition, resources, and information on how to support them through donations.  I am far from an expert on autism and plan to take this month to raise my own awareness and knowledge of autism.

Thursday, March 21, 2019

Stepping Away from Our Tolerations

This week marks the spring equinox, which is the time of year that brings us out of winter and officially starts the season of spring.   If you are someone like me, who lives in a very cold and wintery climate, this calls for a bit of celebration.  There’s now hope that scarfs, boots, and winter jackets are a thing of the past.

To me, spring has always been a season that makes me think about fresh beginnings, new opportunities for growth, and more broadly speaking, a renewed energy for life.  As we literally shed our layers of jackets and sweaters, it also is a great time to think about shedding anything else that is unnecessarily weighing us down.

In other words, what are we tolerating in our life that we don’t need to?  What are we doing that no longer is serving a purpose to us?   What is stealing away precious amounts of our time and energy?  Is it a variety of tasks that have lost their relevance, a relationship that no longer is healthy, or maybe it’s something within ourselves that we are a bit overdue with accepting or resolving?  Whatever it is, spring can be the perfect time for this sort of “evaluation.”

Sometimes the most challenging part of this exercise is figuring out what it is that we are tolerating.  Oftentimes we have become so accustomed to tolerating things, that they seamlessly blend into our lives.  We become blind to them and can no long easily separate them out.

A short brainstorming session, creating a list of tolerations, can be a great starting point.   Oftentimes, the first few items for this list are quite easy to identify.  Then, if you find you are struggling to add to your list, oftentimes it’s easiest to think of the main buckets in your life.  For example, I think about what I am tolerating within my relationships, my household, my work, and sometimes even my symptoms.  When it comes to my symptoms, sometimes I find I’ve grown so accustomed to a symptom that I forget to explore solutions to them.  Seems silly, but it’s quite easy to do.  Especially when you have so many symptoms.  Lastly, if you are still finding yourself stuck, ask your friends or caregiver what they think your main tolerations are.  Oftentimes we can become blind to them while those on the “outside” can identify them in just seconds.  Maybe they’ve even been dying to help us but have been afraid to say something.  This outside, objective perspective can be just what we need to boost our list. 

So we have our list, now what?  Well, here comes the fun and bit creative part.  Systematically eliminating them.  This is such a freeing experience that you may wonder why you haven’t done it before.  The time and energy you save as you drop each toleration off your list feels wonderful.  Sometimes it can be as simple as just stopping doing a task, other times it may involve a challenging conversation or finding a workaround.  While there may be a bit of work to this initially, it is generally well worth the effort in the long run.

Eliminating these tolerations is an incredibly freeing exercise.  For those of us with little energy, removing anything from our lives that is not necessary and is draining our energy can be monumental.  As you find yourself making progress with your list, next comes the final, even more fun, step.  Freeing up all this time and energy can give us the opportunity to explore things that better serve us and it also allows us extra time for the self-care we need and so richly deserve.

Often, I find this is the time of year that I dedicate that time-savings to some of my favorite things – reading more books, an extra gentle yoga session per week, meditation, counted cross-stitch projects  Whatever it is that I felt like I had no time to do before but find fun and want to do or do more of – it’s now on my new “fun” list! 

I also use this extra time to do more of what I should be doing all along – self-care.   When we are crunched for time, it seems like self-care is often the first thing we drop off our plates, when in reality these are the times that we need it the most.   By freeing ourselves from what we are simply tolerating in life, what no longer serves a healthy purpose for us, we are providing ourselves with less opportunities to drop self-care from our day.  This may sound like a simple add-on, but allowing yourself the self-care and even being able to proceed through your day at a better pace can make a great difference for how you feel at the end of the day.

So, as we spring forward, I encourage you to try this exercise with me.  Since I’ve become a coach, I’ve worked through this exercise myself every year and with all my clients.  We’ve found it to be relatively easy to do and incredibly freeing.  It’s almost like having a 10-pound weight suddenly lifted off of you while at the same time creating space for new and exciting things to come into your life. 

Who doesn’t want or need that?

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Friday, March 15, 2019

Happiness Is Just One of Many Emotions

People are often continually striving for happiness, oftentimes to the point that they blow past the other emotions they experience throughout their day.  I am definitely not here at all to say that happiness is not a fabulous thing to strive for.  I wholeheartedly believe that seeking and finding joy, happiness, and gratitude can really enrich our relationships and lives.  What I am saying, and realizing even more, is that it’s okay to feel other emotions.  In fact, it’s more than okay – it’s to our benefit to fully experience other emotions. 

So how did I get to this realization?  I’ve recently started reading an incredible book, The Upside of Your Dark Side:  Why Being Your Whole Self – Not Just Your “Good Self- Drives Success and Fulfillment [1] and it has created a much greater awareness in me in the power and value of experiencing all our emotions.  Contrary to many theories out there, this book highlights that being happy and optimistic is not the end-all be-all to leading a fulfilling life.  Rather, the authors propose that experiencing all emotional states are actually the path to a more fulfilling life, with the idea that every emotion serves a purpose and that by fully experiencing each you become “whole.” 

I know that when I got diagnosed with myalgic encephalomyelitis that initially I went through a rapid cycle, not-so-pretty range of emotions.   Thankfully, as time has gone on, while I still find myself cycling through a variety of emotions regarding my illness, the pace has greatly decreased (at least on most days).  I’ve also always believed in most cases it’s good to let ourselves process each of our emotions and that what is key is to take what we can of the less positive emotions, grow from them, and then move on.  However, I never realized just how important it is to do that.

This book really reinforces the value in doing just that.  I found the examples in the book to be incredibly helpful.  For example, they talked about how guilt can be a signal to ourselves that we are violating our own moral code and therefore need to adjust our actions or our code; experiencing grief can help us identify our losses and come to acceptance of them; anger can motivate us to find ways to change or modify the instigating set of circumstances or our perspective on them; and doubt can prompt us to step back, look at our skills and help us identify where we can improve them.

These are just a few quick examples but they highlight how what we often consider negative emotions are actually signals to us that also present opportunities.  One lesson I learned from reading the initial chapters of this book is simply to not let myself feel bad for experiencing “negative” emotions.  They arrive for a reason and they serve a valuable purpose in our lives.   However, it’s important to keep in mind too that the buck doesn’t stop there.  If we don’t let ourselves feel these emotions and then also respond to the signals they are providing us, we will get “stuck” in that emotion.   Dwelling too long in a negative emotion can often do us more harm than good.  In addition, it reminded me of the value in not avoiding certain emotions.  I can honestly say I’m guilty of doing this in certain circumstances.  However, if we avoid feeling certain emotions, lose ourselves in distractions to erase them from our mind, we also lose out on the opportunities to gain from them and to find solutions to them. 

While I’m only a few chapters into this book I’ve already learned a lot.  Most of all though is that I need to start more fully experiencing (and appreciating!) all of my emotions.  By glossing over some of the less positive ones, opportunities are passing me by.   I’m missing out on the “whole” experience of my life. 

This is my life; I want it all!

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[1] Todd Kashdan, PhD, and Robert Biswas-Diener, Dr. Philos. (2014), “The Upside of Your Dark Side:  Why Being Your Whole Self – Not Just Your “Good Self-Drives Success and Fulfillment.”  New York, New York:  Hudson Street Press

Friday, March 8, 2019

Answers and Solutions: Two Totally Different Animals!

The other day a very kind soul ran some errands for me because I was too exhausted to do them myself.  Upon returning with groceries for me (and a few extra treats 😊) they proudly exclaimed they had solved my problem.  While I couldn’t appreciate them more for what they did and how generous they were with their time, how they recognized my need and filled it, and the incredibly kind thought behind it all, it got me thinking.

Yes, they did provide an answer to my problem.  But did they solve it?  In thinking further on this, I arrived at the conclusion that my problem really isn’t solved.  My immediate need is filled; but my problem still exists. I’m going to need groceries again and given how exhausting grocery shopping is for me, I’m probably going to need help again.  All this got me thinking – it’s to my advantage, and my caregivers, to start focusing on solutions, not answers.  This will not only give me some control back in my life but also, hopefully reduce some of my reliance on my caregivers.

So, what am I really talking about here?  Answer… Solution..  They seem like the same thing.  What’s the deal?

An answer is an action in reaction to something, a need, a request, a situation.  It means, in short, done for now…

solution is a means of solving a problem.  Simply done!

So, let’s put a little dose of reality into this situation.  How can we make this strategy really work for us?  And when can it work for us? 
The good news is that thankfully there are many solutions available to us, with the help of modern technology and a little creative thinking!  Here’s a few quick examples:  

Groceries:   I find this task extremely exhausting (all the walking, picking up, bending over, loading bags into my car, bringing them into the house, etc.…).  I can’t consistently perform this task for myself. 

The answer to this problem is to continue to have my caregivers shop for me when I can’t. 

The solution – well, that’s the exciting part! There are so many these days.   There is the Amazon Prime Pantry, my local grocery store drive-up service and there even a good handful of stores that offer deliveryservices right to the door!  Some even offer meal delivery services!  An alternate solution if these options are not available is to create a master grocery list, make dozens of copies of it, and then just circle what you need for the week.  This saves you or your caregiver from writing brands, sizes, and items down again and again.  After all, most of us do tend to get the same items, same brands, over and over.

The complete solution – Learning new applications isn’t always the easiest, or even if the site is easy to use, I need to find the energy (and get past the brain fog) to learn how to use it.  Asking my caregivers to help me select the best grocer for my needs, show me how to use their system, and walk me through my first order can create a one and done situation.   Hopefully at that point, I will be able to take this task back over myself, at least to a larger degree.

Medical Providers:  Finding and filling out all the release forms from various providers can be draining.  At times so much that, and given how hard it is to find medical support (or even a doctor aware of what Myalgic Encephalomyelitis is!), I have questioned whether the appointment will even be worth all the work!

The answer oftentimes is that one of my caregivers helps me find the appropriate medical provider for my current issue and then we start from scratch going to my main current providers’ websites, printing the release forms, filling them out again and sending them to the new provider.
The solution – We could take some time to create a document that has links to all the release forms.
The complete solution – Given the ongoing need for this, plotting out time with my caregiver to print multiple release forms for each key provider and filling one in and making copies of each, leaving just the new provider’s name blank to fill in will save us from “reinventing the wheel” for every new appointment.   When the next such need comes, then we just have to pop in one name in each already-completed form and presto - off they go!  (With many forms being online this may not always work, but there’s still many “paper” providers out there).

Sorting Mail/Paying Bills:  I tend to get overwhelmed and anxious when I see my mail and bills piling up.  Sometimes though I’m just too exhausted to go through them when they arrive.

The answer – I stay anxious and overwhelmed until the day comes that I have the energy to sort through it all and toss, pay, or file the information.

The solution – Put all of the mail out of immediate sight (but not so far that I forget them) but far enough so that I’m not constantly seeing the pile and watching it grow day after day.  And when I’m feeling up to it, then I will work through the pile.

The complete solution:  Consider setting up auto-pay for monthly bills.  This greatly reduces the volume of mail to sort through and bills for to manually pay!

Even just thinking through these three examples has gotten me to thinking of where else I can simplify and streamline my life.  Where can I self-manage my life a bit more while at the same time reducing my stress level and the overall workload for me and my caregiver, all while making self-care and rest a continuing priority?  It’s sort of become a game now – what can be done simpler, easier, or not at all?  

Please feel free to share your tried and proven ideas!  The more robust we can make this list, the better for all of us.   Why reinvent the wheel if someone already has great strategies in place that we can all benefit from!

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