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 delivery services 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!



Saturday, March 2, 2019

Delight Your Caregiver Today!


While every day is a great day to share our appreciation to our caregivers, there’s a few days (and even a whole month) in every year that has been dedicated to celebrating them.  One such day is March 3rd.  This day is dedicated by many organizations as National Caregiver Appreciation Day

To me, given all that my caregivers do for me, I think of caregiver appreciation day much like how I think of the day dedicated to my illness.  Yes, it’s a day of extra awareness and advocacy events, but at the end of that day, I still live, breath and sleep (if I can) with Myalgic Encephalomyelitis (ME).   EVERY DAY.  Unfortunately, for my caregivers that means they don’t get much of a break from helping me with my needs either.   So, in many ways, I try (hope) that I show my appreciation in some way, big or small, to my caregivers every day.   With much short-term memory loss though, I know that doesn’t always happen so I’m glad there’s days such as this to remind me to express my appreciation more often.     

When I think of all my caregivers do for me, it fills me with such gratitude.  Their love, support, and compassion are priceless.  And.. without them my house would also be a disaster, my refrigerator empty, and my laundry would be in a huge pile.  I would be out of my medication, my mail from last week would still be in the mailbox, and my garbage would be piling up outside my door.   I could go on and on….  But perhaps most of all is what I first listed – their love, support, and compassion. Above all, that means the most to me.  And I know that I am lucky to have the help that I do.  I know many do not have such help and my deepest wish is that that would not be the case.

While I hope that my caregivers know how much I appreciate every generous bit of help they provide me, like a birthday or anniversary, I plan to make not just this day but at least this week or even month extra special for them.  (It’s always been my “thing” that birthdays should really be celebrated as a “birth month” – after all, why not make the most of a celebration!!)  I hope to do the same when it comes to appreciating my caregivers.

All that said, I think it’s key to be realistic in how much I can show my appreciation though.   They are my caregivers for a reason - because I can’t care for myself fully.  So how am I going to show how much I care to them?  Here’s some ideas that I came up with but I would love to hear any additional ideas that you have that can be added to the list.  And if you are a caregiver, I would love to add your insights to this list as well – what would mean the most to you?

  1. A Thank You Card:  It seems so simple, but a card expressing your appreciation for your caregiver’s work might just mean the world to them.  If you can’t get out but like this idea, you may want to consider ordering one online or even making a homemade thank you note.
  2. A Meaningful Gift:  What I found really cool is that there is a very nice selection of small, but very meaningful gifts, dedicated to caregivers.  And also, very accessible, due to online ordering!  They can even be delivered right to your doorstep.
  3. A box of chocolates:  Who doesn’t appreciate a little extra sweetness in their day? A box of chocolates is often a sweet indulgence and can make for a great gift for a caregiver.
  4. Scented candles nicely warm up a home and can leave a delicious scent and memory of your appreciation. 
  5. Special gifts:  Speaking of scents, who doesn’t like to smell extra good?  For women, perfume is often a much-appreciated gift.  Similarly the male caregivers in our life might appreciate a bottle of cologne.
  6. Hobbies:  Sometimes our caregivers are so focused on our needs that they don’t prioritize what they enjoy.  Perhaps something that shows our support of their hobbies or interests (i.e. embroidery yarn, a new book, a DVD of their favorite movie, etc..) may be good options to consider.  All of these things can be ordered online (and are relatively inexpensive), if shopping outside the home is not an option.   Online books are a great option as well!
  7. Handmade Gifts:  On days like this, remember too, it’s not the cost of the gift that counts, it’s the thought.  Homemade items often mean the most.  Whether a card, potholder, a decorative item, or something more elaborate, what matters the most is the thought.
  8. A Home-Cooked Meal:  I know that my only homecooked meals come from my caregiver, but perhaps even just letting them know that you got it that day and even if it’s as simple as a can of their favorite soup, the thought and change of pace may be a real treat for them.
  9. Listening Ear:   I know that I use my caregivers often as a sounding board for whether to try a new doctor or medication, to vent about my pain, or discuss future care plan options.  Perhaps taking some extra time to be the listening ear for them would really be meaningful to them.  They may be hesitant to share their problems with us thinking we have enough of our own.  If we are up for it though, I think letting them know that we are happy to be their listening ear going forward might be much appreciated.
  10. Support:   Our caregivers give us so much support.  Perhaps there’s a hobby or activity that they would like to do that they just don’t have time to pursue because they are so focused on our needs? If so, perhaps something as simple as a brainstorming session to help them find the time, or a little gift to get them started on their hobby (yard of fabric, embroidery kit, fishing lures, or tools (I don’t know about you but I find it hard to shop for my male caregivers!) might just be the thing that spurs them to find the time or to start activities that they get joy from.
  11. A Smile:  I know that sometimes smiling is the last thing I want to do or even have the energy to do many days. And that’s what my caregiver sees, or hears over the phone, every day.  I have a feeling my caregivers wouldn’t mind seeing a smile out of me a bit more often.  Bonus:  Smiling is contagious.  I bet you get a smile right back!
  12. Share Your Strategies for Success:  Some of our very own strategies for success are helpful for anyone, chronic illness or not.  For me, I find meditation very helpful but my caregiver has never explored it.  They do so much for me, perhaps this is something I can give back to them.  Something as simple as inviting them to go through a guided meditation DVD or some deep breathing exercises together might bring some extra inner peace to their day as well.  Yoga may be another similar area worth sharing if it’s something that you’ve found helpful.  If you are able to do gentle yoga and really enjoy it, perhaps consider sharing the experience with them. It not only could be a great bonding experience but one they may find is of interest to them in pursuing further on their own.

So many of us may be fully appreciating our caregivers already so these ideas may seem redundant.  I think, hope, that my caregivers know that I appreciate all that they do.  But to be honest, I have never given them a thank you card specifically focused on thanking them for what they do for me.  And while I know that none of them expect that from me, I also know how I feel when I get an unexpected expression of appreciation or gratitude.  I want to pass that feeling along to them and this seems like the perfect opportunity.

If you have any ideas to add to the list, please share!  What rings true to one person may be possible or an option for another so the more robust we can get this list the better.  I started this list not with the idea that so much needs more to be done for our caregivers (maybe many of us are already doing quite a bit to show our appreciation), but just simply as options for those of us that want to, for our own reasons, to do something extra or more than we are already doing, for our caregiver, in particular in light of Caregiver Appreciation Day.


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Drowning in Priorities

How do you manage your life when you’ve already whittled it down to just your top priorities and it’s still too much?  Feeling like every ...