Monday, December 31, 2018

The New Year’s Resolutions of a Chronically Ill Person




Every year I make resolutions for the new year and I am proud to say that I keep over 90% of them.  Today, I thought I would share my resolutions that are related to my life with a chronic illness.  I’m sure many of you have similar goals in mind; for me, putting them to paper solidifies them.   Every day I achieve them - SUCCESS!  And some days, I need to rely on the joy from those successes quite a bit.  Other days, it’s just another feather in my cap.

So here goes!

  1. Pace:  I will pace.  Period.  I will not try to, I will not do it when it’s convenient or when I feel a flare approaching, I will just do it.
  2. Self-Care:  I will put me first.  I will not sacrifice my health to make it easier for others.  I will not feel guilty for saying no.  
  3. Yes:  I will start saying yes to offers of help rather than a polite, in denial, no.  
  4. Rest:   I will not consider resting, even for the entire day, a waste.  I obviously needed it and my needs are not valueless. 
  5. Medical Care:  I will not be afraid to ask the questions I want answers to.  I deserve to know the details of my diagnosis, prognosis, and treatment plan.  
  6. Comprehensive Medical Support:  I will not accept less than from my medical care providers.   If I know more about my illness than them, they are not the doctor for me.  I will seek providers knowledgeable on my conditions and that can optimally help me.
  7. Celebrate:   I will find something to celebrate every day.   Every day brings new opportunities, big and small.  I will seek them out and make the most of the ones I can.
  8. Challenges:  I will not back away from new opportunities out of fear it will trigger a flare-up.  I will make decisions based on balancing the facts, not based on the fear of a possible (but perhaps not even probable) flare-up.  
  9. Support:  I will find ways daily to support my fellow chronic illness warriors in big and small ways.   They are an amazing group of friends that deserve the best I can give them. 
  10. Most Importantly:  These will not be my only resolutions because there is so, so much more to me than my illness.  I have a lot to contribute to the world around me and the people in my life.  Myalgic Encephalomyelitis is what I have, not who I am.  
I hope that some of these resolutions resonate with you  - most importantly, I hope you keep #10 in mind.  It's so easy to get caught up in the pain and exhaustion and forget that underneath it all we are still who we were all long, long before our chronic illness entered our life.  Our heart and soul is still intact, if not wiser, stronger, and more compassionate.

2019 is the year to be good to you in every way.  Be fearless in the pursuit of what sets your soul on fire!

Thursday, December 27, 2018

Surviving, (Hiding), and Thriving with Cognitive Impairments


Holiday Events Are Not Over Yet!


As the years have gone by with Myalgic Encephalomyelitis (ME), the cognitive impairments have grown.  My brain is slower to process information and conversations.  For example, it takes longer to find the right word, to remember someone’s name, and quite often to even to remember what I was just about say.  

While we are past Christmas, we still have New Years ahead of us.  The holidays are particularly challenging because oftentimes they entail interacting with a lot of people at once.  These quicker pace interactions make my cognitive issues harder to hide.   But not impossible.

One of my tricks of the trade is to resort back to what I learned during my years in college and law school.   When I meet someone new, I repeatedly say their name in my head and try to align that person’s name with someone else I know with the same name.  This worked well for memorizing legal concepts and for whatever reason it also increases my odds of quickly recalling someone’s name in the future.  

If I’m lucky enough to remember the name of the person in front of me, then comes the conversation part of the interaction.  First, I need to try to recall where we left off last.  Oftentimes I prep for these conversations ahead of an event if I know who will be attending it.  Of course, then I need to remember my homework!   And.. there are always the surprise encounters when I must recall who someone is on- the-spot.   Another trick of the trade:  Become an amazing listener.  I’ve always been a person that loves to learn about my friends so this comes a bit naturally to me.   Now I leverage this time to let them lead the conversation, using this time to recall our last conversation and to be able to pick right up in the current one when it’s time for me to speak.  

So.... I got their name, I’ve figured out where we left off.... then comes the inevitable question: “What have you been up to?”   This can be awkward, especially if they have just shared their job promotion, vacation, or new fitness regimen.  Sometimes all I have in my back pocket is a doctor appointment (or five), laying on the couch, and watching television.  None of which makes me a riveting conversationalist.    So once again I reach into my bag of tricks:  It comes down to planning ahead again.  I keep top of mind my last real outing, the last great movie I saw or something, anything, to carry the conversation long enough to volley it back to them.   

As the evening wears on, my cognitive deficits tend to get worse.  Once that happens it’s generally a quick mental slide, with a physical slide following right behind.  Soon I am leaning against a wall or sitting back on a couch.  Knowing this is likely to happen, I have my bag of tricks for this as well. First, I try to make my rounds early in the evening so if I need to make a quick escape, I feel like I’ve fully made an appearance.  Second, instead of alcohol, I will down water like I’m a camel in the desert.  Water keeps me alert and a slight bit more energized.  If I’m feeling fancy, I slip a little Kool-Aid in the mix.  It makes for a pretty colored drink and no one is the wiser of my drink of choice (a/k/a necessity).

Eventually, the time comes in every outing that I start to fantasize about laying down, about my bed, and about the quickest way to seamlessly get there.  And then I know it’s time to go and go quickly.  By this time, I’ve usually made enough of an appearance and felt witty in at least some conversations.   Overall, I call a night like this a success.  Time for bed!

I wish I didn’t need any of these strategies but there’s a few realities here that are easy to forgot.  First, so many people forget names.  So, a slip-up in this area is generally easily understandable by anyone.   Also, time passes, life events intercede between events…  everyone can forget where they left off in conversation with a friend.  And let’s be honest, even the healthiest of people often lead lives that don’t go beyond work and home for dinner and television.  While we often feel the need to come up with something exciting to add to a conversation, they may be doing the exact same thing.  And end of party exhaustion – healthy or not – we all get there at some point.

So, my point, let’s cut ourselves a whole lot of slack.  The reality is that while we may be more aware and self-conscious about our cognitive impairments, there’s not a single person that hasn’t had any of these experiences on occasion.   Outwardly we blend more than we feel we do inwardly. 
Next time you feel self-conscious in these moments, remember, you’ve got this just as well as the next person! 

Monday, December 24, 2018

The Holidays: Enjoy the Season; Avoid the Flare




The holiday season is a time to reconnect with friends and family you haven’t seen in a while, celebrate the year’s successes, and talk about the coming year.  

For those of us with chronic illnesses, the holidays can present a host of challenges though.    One that I find personally challenging is remembering names on-the-spot.  My memory loss and slower speed of thinking can sometimes create some anxiety when someone I know I know starts a conversation with me.  Sometimes I’m at a loss in greeting them, or if I do quickly recall their name, I forget where our last life updates have left us.  I would be horrified if someone thought I wasn’t listening to them during our last conversation or that I simply didn’t care enough to recall.  So, I cover the best I can.   Dare I say this is a skill I have come to master in most such moments?   So yes, my chronic illness has taught me something new:  appropriately bluffing, covering, or whatever you want to call it.  I consider it a skill nonetheless.    

With holidays often also comes the hustle and bustle of activities. Too, too many for me to go to, leaving me feeling guilty for declining invites (hoping they don’t find out I declined simply to lay on the couch for a much-needed rest).   While I know they would understand, I can’t help the guilt I feel.  After struggling for years to learn pacing though I am finally getting better at it.  To be honest I wished I had slowed my life down years ago.  Now when I go out, I’m all in (or as all in as I can be).   I’m with the people that mean the most to me and more fully enjoying their company.  I consider this a win in my life. 

Ahh... the holidays...  colorful, shiny, bright beautiful colors.   The sounds of laughter and fun in the air.  I love it all.  Yet sometimes it all also hurts me.  Certain sounds, certain volumes instantly trigger a flare-up for me.  Once a flare-up starts, it’s off to the races.  Quickly I must seek out quiet - a quiet room, a soft bed, a set of earplugs...  And the colors, so beautiful but sometimes also too much and too bright.  I need to turn away or find a darker angle within the room.   Never was I so aware of my surroundings, anticipating my triggers, and deciding a potential escape plan.  If you want someone to notice your holiday efforts (and at least internally enjoy them), I’m your lady!

While triggers can be abundant during the holidays, I do always carry a few tricks up my sleeve.   Earplugs are a must for any loud restaurants or parties. Keeping a bottle of water handy is key to keeping me hydrated and alert.  My honed meditation skills (thank you to Calm!) have helped me quickly start some deep breathing exercises if I sense a potential flare trigger.  Oftentimes that alone can help slow it down or stop it in its tracks.  My yoga skills have also helped me stay in the moment and engaged in conversations.  I also often pack a protein bar in my bag.  While the candy and cookies of the holidays are great, they aren’t the source of energy that my body really needs.  Sometimes sneaking a quick protein bar in the bathroom can carry me through the night.  Also, identifying my “escape plan,” just in case, (perhaps a little used bathroom, or better yet, a bed to lie down on) can also provide great relief.  A bag of tricks never used to be my plus one but now it’s my must have.  They have allowed me to avoid flare-ups, minimize them or worst case, they’ve helped me quickly get to a place where I can rest and recoup. 


While the holidays aren’t as full of activities as they were before, I have to say I do enjoy the events I participate in more because I’ve prioritized them and dedicated my best to my best.  Pacing may have come from having a chronic illness but I must say it’s been a blessing in disguise.   As they say, slow down and smell the roses.  While not by choice, I’m glad I’ve made this life change.  Because those roses really do smell pretty great when you take the time to enjoy them.  

Saturday, December 22, 2018

Life with a Chronic Illness: The Unspoken Truths




Life with any chronic illness is filled with unending challenges, whether its finding proper medical care, a way to afford it and your daily expenses, or maintaining employment.  On top of that, and most of all, you must deal with the chronic illness itself and all that comes with it.  So why does society oftentimes put more on our already full plate?

First, let’s talk about employment for those of us that are still able to work to some degree.  So many people tell me that their employers refuse to accommodate their requests for a reasonable accommodation or that they are even afraid to ask for it.  Or, worse yet, they have asked for it and are threatened, demoted, or fired.   This is very sad to hear. No one should be afraid to ask for what they reasonably need to perform their job.    

Ironically, oftentimes it’s these same companies that publicly tout how they promote and encourage diversity within their workforce.  I personally can attest to the fact that having a chronic illness has changed me in many ways; ways that I think have made me a better employee, including one with more diverse perspectives and unique ideas.  Like so many others I have talked to, I bring more to the table than before; yet sadly we are often thought of as less than.  We are frequently tapped into for projects less often, which also reduces our opportunities for advancement and success.

One common accommodation many of us have is one that enables us to work from home full or part-time.  This is often needed to accomodate our compromised immune system and depleted energy levels.  Some employees have viewed this type of accommodation as a “perk” that we get.  Please let me clarify this misunderstanding.  It is not a perk by any means, it’s a necessity.   It gives us no advantage in the playing field; we are simply trying to stay in the game.  

While I am not on SSDI, I know many, many people in the midst of this process.  And when I say process, I mean p-r-o-c-e-s-s.  The paperwork is exhausting for anyone, but if you have brain fog, low attention spans, and a mountain of medical records, this stage alone is an endurance test.  Then comes the hearings and appeals.  All of which can take years.   While a criminal is constitutionally provided a right to a speedy trial, a previously hard-working individual who is suddenly stricken with a disability must oftentimes wait years to receive any financial support.  In the meantime, they struggle to stay in their homes, pay for much needed medical care, and scramble to afford daily expenses.   I must ask why criminals have more rights here than a person with a chronic illness that did no more than simply get sick.

A more minor, yet daily example, is handicapped parking passes.  Since I have gotten one, it has allowed me a few more excursions out of my house because of the time and precious energy it saves when I run errands.  It makes me depend on my caregivers a bit less and gets me out into the world a bit more.  It reduces my isolation.  In short, it’s been a godsend!

So why do people care so much when they see me get out of my car that is parked in one of these handicapped parking spots?  Do they think that doctors freely give them out?  (They don’t!).   I have one because I need one.  What I don’t need is the scorns and judgment – each time I get one I feel myself being physically assessed by people as they determine if I am worthy of such a parking pass.  On my particularly defiant days, I want to go up to them and say I have myalgic encephalomyelitis.  Does that meet your criteria??  I know that word alone was daunting to me when I first heard it; that alone may put an end to their scorn!

This list, just a small sampling of many inequalities, is more than just that.  It provides an opportunity to raise awareness – to the public, employers, the government, and all the other players that as a chronically ill patient that we interact with.  Yes, we have special needs, but rather than judge them, learn about them.  Spread your wings and focus on gaining an understanding of what it means to live with a chronic illness.  Be a part of transitioning a hardship to a support system.

I suspect many of you have people in your lives with illnesses they simply have been afraid to share or chose to keep private.  Unfortunately, diseases and illnesses hit close to everyone’s home though.  Think of your friends that you do know with an illness.  It may not be visible to others.  Let this be a reminder that you don’t know everyone’s story.   Giving the benefit of the doubt, showing compassion, caring and support to all can go a long way to making this world a better place – chronic illness or not.  

Those of us with chronic illnesses have enough on our plates, striving to handle it all with courage and resiliency.   There isn’t a single thing I named above that cannot be, should not, be changed.   Employers, truly embrace the diversity that you speak so highly of and help your employees with disabilities rise to the top rather than holding them down.  The SSDI system is sorely in need of revamping.  A process that takes years to proceed through is too long for someone that has monthly bills to pay.  And.. something as simple as lending a helping hand or even just a smile to someone you see parking in a handicapped spot may just be your opportunity that day to make someone else’s day.   Be that person!


Friday, December 14, 2018

Seeking the Right Gift for a Loved One with a Disability? Let Me Help!




With the holidays, comes the often-challenging task of finding just the right gift for your loved ones. Sometimes that task can seem to be a bit harder if your loved one has a disability, like me (I have myalgic encephalomyelitis).  We are often homebound to a much greater degree than most or even completely homebound or bedbound so it may seem like gift options are more limited.  

Good news!  That's not the case! To get you started, I've created a list of items that are fantastic ideas for your loved ones that may have some special needs due to their condition.  Actually, many of these items make great gifts for anyone on your gifting list!  The list includes small and big gifts, gifts that cost no money (seriously!) and some that are a bit more expensive.  Here we go!

1. Netflix or Prime:   Since we are often are home quite a bit, having a lot of movie options can be priceless!  And entertainment is great distraction.  Amazon, in particular, can be a gift filled with gifts.  A subscription will give your loved one movies and two-day free shipping for needed items they aren't able to leave the home to get.

2. Weighted blanket:  These are great for calming anxiety, reducing stress, and helping with insomnia.

3. Heated blanket:  Many of our conditions create temperature sensitivities.  Give the gift of warmth to your loved one!

4. Gift certificate to their local pharmacy:  This may not sound too personal but if your loved one has a lot of prescriptions this could really help them out!

5. Calming scents:  Whether through infusers, spa misters or other such products, these can really make for a nice gift.  Just be sure your loved one doesn't have scent sensitivities.  Lavender oils and scents in particular are great sleeping aids!  

6. Candles:  Again, as long as your loved one doesn't have scent sensitivities, scented candles can bring warmth to their home.  There's also crackling scented candles that bring an extra coziness to the room as well. 

7. Heating pad:  This can be great for people that get migraines or find heat on their eyes helps them fall asleep.  Again, lavender scented ones are a great choice!

8. Gift certificate so they can purchase a variety of tablet or phone applications:  Whether to monitor their sleep, providing calming sounds, meditation sessions, or games and other entertainment it's a great gift.   So many options - all that can be utilized from the comfort of their couch or bed!

9. Pill organizers:   Let's face it, if you have a chronic illness you most likely have a good handful of pills you take daily.  If you are like me, your memory is not the greatest so something to help you track your medicines is key!

10. Home decorations:  If your loved one is homebound quite a bit, help them keep things interesting by changing their view a bit.

11. Puzzles:  These are great distractions from pain and will help keep your loved one's mind active and entertained!

12. Books:  Have a friend that needs a new outlet for their creative energy?  An adult coloring book could be the answer!  Also, audio books are a great option as well for those that find reading print books or online books challenging.  (See below for a great audio book deal!)

13. Gentle yoga DVDs:  If they can tolerate and would enjoy some gentle yoga, a DVD they can do from home can make a great gift!

14. "White Noise":   If your loved one lives near a high traffic area that affects their sleep, perhaps a white noise machine or one that plays soothing sounds would be appreciated.

15. Meditation:   Meditation can be a great relaxer, whether for use at home, to relax during a procedure or as a day-to-day practice, this can be a great tool for your loved one to get through challenging times, relax, and enjoy their day a bit more.   There are some great apps that can be purchased or DVDs as well.

16. Services:  There are so many great services out there that bring the outside into our homes.  However, sometimes setting them up and learning how to use them can be too much.  Offer to set up grocery shopping and delivery for your loved one, teaching them how to use it going forward.  Any kind of service that makes their day-to-day easier will likely be much appreciated.

17. Cleaning Services:  Cleaning is a never-ending task, one that sometimes is just too much for us to do or keep up with on a regular basis.  Whether a one-time deep cleaning service or a providing the gift of a regular house-cleaning service, you may find your loved one smiling ear-to-ear when they see a gift like this!

18. Snap-Cap Water bottles:  Hydration is key to many of us to stay alert and feel more awake.  If your loved one is like me though and lacks a bit of coordination, a water bottle with a snapped lid can be a godsend!  No more spills!  I bought three at the Dollar Store and I love them!

19. Bathtub/Shower chair:   If you have a chronic illness, often a shower can drain you of your energy for the day.  Save your loved one some energy by buying them a shower chair!

20. Roombas:  Roombas or similar items are fabulous for those of us that find vacuuming the house exhausting.  And... they can be a bit entertaining!

21. Winter/Summer outdoor care:  If your loved one lives on their own, the gift of a winter snow shoveler or summer lawn mower for the season relieves them of an expense and the worry of how these tasks will get done.

22. Back pain wedge:  A back pain wedge can be great for someone with back pain.   Any device that helps relieve this pain will be much appreciated.

23. Books:  Is your loved one an avid reader but can't get to the library or book store?  Give the gift of a book a month.  Or a subscription to audio books is an option too!

24. Resources:  If your loved one isn't in any support groups and isn't able to make it out to any, help them find some online groups.  Facebook has a wealth of them.  This may not seem like a gift - it's there for everyone already but sometimes the work involved in finding resources, and the right resources, is too much. Help them find some uplifting, empowering resources.  Be careful in your choices though, there are some groups that focus more on negativity than information or support.

25. Clothing:  Many of us are very sensitive to waist bands or restrictive clothing. Cute clothing items that don't have these issues are always fun to get.  Even if your loved one doesn't leave home much, it's always nice to wear something new, even if just for yourself.

26. Restaurant or Event gift cards/tickets:  If your loved one can get out but doesn't often treat themselves or feel they have the money to do so, a gift card to a favorite restaurant might be a real treat!

27. Massages:   Oh... the gift of a luxurious massage.  For many of us, this is actually therapeutic and medically helpful.  And, of course, for many it's incredibly relaxing!  This may also be a "splurge" that your loved one might not indulge in without such a gift!

28. Gift of the Month Clubs:  Enroll them in a ______ of the month club!  Whether book, wine, flowers, whatever, it's always fun to get a gift every month.  I know it would put a smile on my face to get flowers monthly, reminding me of how thoughtful my loved one is.

29. Manicure/pedicure:  What woman doesn't like to look down and see pretty nails?  Even if it's just for them, fun colors can perk up a challenging day.

30. Home medical devices:  Whether the actual equipment or a gift card to the store they shop at, the thoughtfulness of this gift will be appreciated and show your support.

31. Your time!  Often it's the isolation that can hit us the hardest.   The biggest thing that hit me when I got sick was the disappearance of many I thought were my friends.   This gift of your time may sound simple, but speaking from personal experience it can get pretty lonely when you are in a flare-up and stuck on your couch.  Sometimes just a friendly face, perhaps with an already made lunch in hand, can be a saving grace!  

AND….  Your time!  Yes, I know I said this already but it's worth repeating because it is THAT important.  Taking time out of your day or week periodically can mean the world to us.  It helps us stay connected to you, life outside our world/home, acts as a distraction, and undoubtedly will come with some laughs!

This list is far from endless.   Not all these options will work for everyone - we all have different needs and sensitivities but hopefully it gives you a start!  You know your loved one best!

Have additional ideas?   Add your comments below and let's really get this list growing!  Share it with your loved ones if they are struggling with what to get you!

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Thursday, December 13, 2018

What is it About ME That I Don’t Like? Let Me Tell You… But I Have Hope…




You don’t know ME.   I don’t even want you to see ME.  In fact, I try at every chance I can to hide ME from you because I’m embarrassed by ME.  I know I shouldn’t be.  It’s not within my control; I can’t help it.  I think it’s because I know it doesn’t make for the best me.  It’s created a water-down exhausted version of me.  
What is this mysterious ME I am babbling on about?  Myalgic Encephalomyelitis (M.E.) is a multisystem disease that affects the neurological, endocrine, immune, and energy metabolism systems.   It affects 17-24 million people globally.  Its wrath does not discriminate - it strikes the young and old, women and men, and people of all races, religions, and ethnicity.  
I would love to tell you exactly what life is like with ME, however, life with ME can span quite a distance.  While even the milder cases of ME are debilitating, people with the more severe cases find themselves mostly homebound or even completely bedbound. 
For me it’s been a rotating array of systems, with a few persistent buggers that stick with me day in and day out.  For instance, daily I live with sheer exhaustion.   Ironically, as exhausted as I am, even if I manage to get a decent night’s sleep, I wake up just as exhausted   Memory loss is also a dominate feature of ME for me in addition to a lack of coordination (Accidents really do happen closest to home – i.e. in my home daily!).  In addition, swollen lymph nodes, sore throats, and vision loss have all come with ME for me.  While these things sound terribly debilitating, I’ve accepted much of it as my new “norm.”  It’s when I get sick with a cold that when things really start to go downhill quickly, with symptoms multiplying and additional illnesses adding up.
One of the changes ME brought to my life that affects me daily was the loss of my ability to workout.  I know this may sound crazy to some, but I use to love (crave!) working out.  Utilizing my mental and physical strength and endurance to summit Mount Kilimanjaro in 2008 was a thrill of a lifetime and I had my sights set on Macchu Picchu in the near future, maybe even hiking part of the Appalachian Trail.   These dreams are no longer are a reality.  They all came to a crashing (literally) halt once I got ME. 
Why?  With ME comes PEM.   PEM stands for post-exertional malaise.  It is a spike in symptoms and a massive energy crash after what, to other people, would be minor exertion.  In short, my workouts are gone, my dreams of future climbs and hikes are dashed.  They’ve been replaced with gentle yoga on my good days.  This is a far stretch from my Beachbody Insanity and T25 hard-core workouts of the past. 
I have to admit, giving up working out was one of the hardest losses for me.  To me, not working out is like not brushing my teeth before bed.  It doesn’t feel right to not do it.  It’s like something is missing from my day.  I drive by gyms and I yearn to go into them.  But I know I can’t.  I know if I even tried to work out even just a bit that I could find myself in bed for days.   So, I don’t go… and the loss remains. 
Given how much I worked out you would think this means I am oozing with newfound free time.  However, that is far from the case.  In my “free” time, most often you will find me laying on my couch watching television if I’m lucky, or just listening to it if I can’t struggle to keep my eyes open for longer than a few seconds.  The only exercise I get now is eating.  Yes – on a hard day, the act of chewing becomes an exercise that takes energy I don’t always have.  Sometimes I skip much-needed meals simply because I can’t muster the energy to literally chew and swallow my food.     
This really is just the tip of the ice berg. It would take pages to tell you about the other symptoms of ME, like sound, light and temperature sensitivities, muscle pain and aches, chills, night sweats, digestive issues… In addition, there are other issues that come with it as well.  It affects the relationships in your life, there is a lack of awareness and support for it in the medical community, and all the list goes on and on.  I think you get the picture though – the quality of life for someone with ME is quite diminished.   
However, I would be remiss if I also didn’t say that I am also very proud of myself, despite what ME has done to me.   Yes, it’s hurt me, even scarred me, but is hasn’t conquered me.  Despite it all, I am still me beneath its reign of terror.  I am still kind, loving, intelligent and always looking to see the positives in every situation.  Even in ME.   It may be hard to believe after reading all this but I have found some positives.
For example, my memory loss is indeed a real kicker!   It can be embarrassing and sometimes quite scary in certain situations.   However, it also means that I don’t remember the little annoying pieces of every day life.  Out of sight, out of mind now!
Being more homebound has really upped my game when it comes to movie knowledge!   If it’s on Netflix or Prime,  I’ve probably seen it.  More seriously though, it has made my home more comfortable as it’s now my safety zone (minus the frequent lack of coordination issues).  It’s the place where I can put down my coat of armor and just, well, droop in every way.  It takes energy to “go public” these days; at home I can exist in a way that reflects exactly how I am feeling.
Today, tomorrow, and the next day… that is ME and me.  Until a cure is found.   I thank goodness for organizations like the Open Medicine Foundation (busy researching for a cure and updating us along the way!), Solve ME/CFS Initiative (vigorously supporting scientific research and advocacy!), and #MEAction (an incredible global community of outreach, advocacy, education, and support organization). They are amazing organizations that thankfully are there for us every step of the way.  I’m also grateful that many states are now also forming such organizations, including my own state through which I have co-founded the Minnesota ME/CFS Alliance.  One of the greatest such strides was made by Jen Brea with her award-winning documentary Unrest that put ME on the MAP.  So, I do see light at the end of the tunnel.  The tide is slowly turning.  A cure in my lifetime I truly believe is possible.


From me to you….

Sunday, December 9, 2018

Living with a Chronic Illness: Is it Too Much to Ask a Partner?



I wish I could still live up to expectations.  I wish I was still reliable and the person that can be counted on to give 110% to every task.  I wish I didn’t feel guilty when I don’t because in my heart I know it’s not my fault.  But I do.   

I wish I didn’t have to ask you to understand and accept that this what a life with me is like.   It hurts me to ask; it kills me when you turn away from me until I return back to my baseline level of functioning. 

I am not two people; I come with both the good and the bad, just as you do.  My bad is just more extreme at times. I hope you never face something like this.  But you can bank on it that I will be there for the fun times and there even more for the bad times if you do.  I will lean in, not out in those moments.  That is just me. I don’t say that to make you feel guilty or make me look good; I just merely want you to know I’ve thought this through as if I were in your shoes.  That said, is it too much to ask that of you?   I don’t know. I feel like I have a lot to offer, that it compensates for the rest, but maybe that’s not your reality when you are with me.  

I often wonder if it is embarrassing to you that I park in handicapped parking?  Are you worried what your friends and family will think?  That they will think you are dating down?  That you are missing out on your life by being with me?  

On my hard days I feel I take your words and actions more literally.  I don’t know what’s real - I know I tend to give people the benefit of the doubt more often at times than I should.  I also know that those actions and words, simple and innocent as they may be, hurt all the more on those days.    Am I asking too much to ask you to be sensitive to that?  

Myalgic Encephalomyelitis (#MECFS) is a whopper of a disease.  I am doing my very best to live a typical life with it.  The reality is that that is not really possible.  But I still try with everything I have.  Try as I might I can’t create the impossible.  Is it fair to ask if that’s enough?  

I always try to judge my expectations of others by what I would do in that situation.  Perhaps that isn’t fair.   I’m the person that always leans in, the person that is always there to listen.   Not everyone has that personality trait.  So, while I know none of this is anything you could ask of me and I wouldn’t dive all in, I don’t know that I can ask you.  Only you can tell me.   

Is my chronic illness too much for you to truly live with?  For you to accept me, all of me, fully.   Chronic illness and all?

I love you.   Do you love me that much? 

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 ...