Lisa M Alioto

@lisaalioto | contributor
I am a lawyer, career coach, and Myalgic Encephalomyelitis warrior with a strong belief in the power of positivity! I primarily focus on writing articles about ME, along with invisible and chronic illnesses in general, with the goal of increasing awareness and providing hope, help and support. I am also the Vice President of the MInnesota ME/CFS Alliance.
Lisa M Alioto

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 who 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. Most importantly: 10. 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. 2021 is the year to be good to you in every way. Be fearless in the pursuit of what sets your soul on fire!

Community Voices

Life with a Chronic Illness

Finding out you have a ChronicIllness at any point in your life has to be one of the most heart-wrenching moments in a person’s life.  It starts with the unknown (what do I have?), then transitions to the known (what does this mean for me?), and finally to reality.  And that’s often when the grieving kicks in.

Grieving for your old life, grieving for the things you can no longer do, grieving for the effect on your relationships…. So much grieving..   I’m not going to sugar coat it, like most moments of grief in life, the grieving never really ends.  It does subside over time, but it can still send you a gut-punch every now and again.

But there is one thing that it has given me that I never had before.  The ability to truly be the beam of light in the shadows of someone’s pain.   In a way, it gives you instant street cred. And I can choose what I want to do with that credibility.  For me, I choose to use it freely and lavishly.

I simply don’t think pain should be a part of anyone’s life. I know that’s a pipe dream but I do know I have the ability, dare I say mission, to use my own pain to be there for those that are similarly situated and having a particularly rough day.

In part, I get my inspiration from Ellen DeGeneres.  Each day I watch her light up everyone’s day with her well-timed humor, her unique ability to show how much fun can be had at no one’s expense, and her dedication to showing us various acts of kindness. And finally, her reminder at the end of every show to simply be kind.

So that is what I try to do each day. I support others on Facebook, whether they are my Minnesota neighbors or Aussie mates.   Daily, I dedicate a page on Facebook to provide realistic optimism to others going through some of the same challenges all of us with chronic illnesses are going through.

It’s still all about being kind.. but a focused brand of kindness.  Focused on those are going through some extra challenges in their day-to-day.   Who really could use a little extra sparkle of sunshine, a shred of hope, or a beam of light in any darkness they are feeling.

The big things in life are great but really it’s the smile from a friend that matters the  most, the hug from a loved one, or the holding open of a door by stranger that often changes our day around.  These little acts of kindness.  That cost nothing.  But mean everything.

If I have to have a ChronicIllness, I’m going to use the strength it’s given me to give right back to my fellow ChronicIllness friends.  That’s the beauty of this community.  We know pain, we know compassion, we know how to be there.  Sometimes just to

listen. Sometimes to offer advice.  Hope.  Love.    Sometimes just to be sitting in the shadow of your pain.  To  remind you that you are not alone. #ChronicIllness

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Lisa M Alioto

Myalgic Encephalomyelitis and Post-Exertional Malaise: How to Cope

For the past six years I have lived with myalgic encephalomyelitis (ME). It’s a multi-system disease that affects the neurological, endocrine, immune and energy metabolism systems. Its hallmark symptom is post-exertional malaise (PEM). PEM is a reduction in functioning and a severe worsening of symptoms after even minimal exertion. The tricky part is “minimal exertion” may change daily. What I can do just fine one day, will cause me to relapse and spend the day in bed the next. And this is where my fear comesin — the not knowing what my triggers are. I’ll admit I like to be in control. But in this case, I think it’s warranted, because every relapse leaves a scar. While I will recover from my relapse, I will never quite recover to the degree of “health” that I was before the relapse. So, a person needs to take these things quite seriously. This isn’t the kind of scar that one would say there is a “story of beauty” behind it. If I knew what my triggers were I think this disease would be a lot easier to handle. I could simply choose to avoid them and I could be relapse-free. But I don’t know what they are; they are ever-changing. So, I have to make a decision before partaking in any activity. Do I chance doing something and risk a dreaded relapse? Or do I hold back, essentially put my life on pause, to decrease my odds of a relapse (note: Sometimes I have a relapse for seemingly no reason at all.) I’ve grappled with this decision in a multitude of ways. In the beginning I had little knowledge ofPEM; my relapses seemed random. So, I just lived my life as much as I could the “old” way and suffered the consequences. This didn’t last long; it wasn’t sustainable. It caused relapse after relapse. By this point, I wanted to wrap myself up in a cocoon and do nothing that could trigger a relapse. While this won’t eliminate all my relapses, it certainly could eliminate a lot of them. But this was not living! So, I adjusted and lived my life at a reduced pace and took what came with it, less relapses — but still, there were relapses. Along the way I learned about PEM and started learning about what some of my triggers were. Things got a little better as I was able to selectively pick and choose my activities, successfully avoiding a really good number of relapses. Then, I swung a bit the other way. I started to convince myself, after this “better” period of living, that I really wasn’t all that sick. That I could do much, much more. And so I did. And I paid a heavy price. I relapsed, and I relapsed, and today I still pay the price for these relapses. The scars I created live with me still. I wanted to jump right back into that safe cocoon. But then, what kind of life would that be? There could be a lot of experiences I’d be missing out on where I could do just fine, be relapse-free, and for a little bit, just be fully me.  Oh…what a dream that would be. On the other hand, if I don’t make this choice, if I don’t choose to have some semblance of a life, then ME has won – it’s taken my heart and soul. On the flip side, hauntingly, there’s that very real fear of a “forever scar.” What was left to try? The middle ground. I try to do what I can to avoid relapses (there are no guarantees here), but yet I also very selectively choose where I am going to spend my precious energy. It’s a bit of a gamble, to be honest, but I feel like this is a place that I’m going to try to live in for a while. I know that it will cause me disappointment often, leaving me still wanting to do things that I can’t or won’t do. And I know it may cause my loved ones to be disappointed by my failed appearances. I can only hope they understand that I’m just as disappointed. At some point though, I’m going to have to learn to move past this disappointment because that’s not a place I want to live. I want to live in the land of acceptance. I thought I was there, but I realized that I was simply faking myself out. It was a reality check – as real as every day has been – apparently it still wasn’t quite as real for me as I needed it to be. However, it’s real now – I finally feel like I’m on the path of acceptance and I just have to trust that my loved ones will come along with me on this wild ride and accept it as well. Because I choose to live a life of the best of the best experiences, and acceptingly letting go of the rest. I choose to live, but selectively live, despite my chronic illness.

Lisa M Alioto

Myalgic Encephalomyelitis and Post-Exertional Malaise: How to Cope

For the past six years I have lived with myalgic encephalomyelitis (ME). It’s a multi-system disease that affects the neurological, endocrine, immune and energy metabolism systems. Its hallmark symptom is post-exertional malaise (PEM). PEM is a reduction in functioning and a severe worsening of symptoms after even minimal exertion. The tricky part is “minimal exertion” may change daily. What I can do just fine one day, will cause me to relapse and spend the day in bed the next. And this is where my fear comesin — the not knowing what my triggers are. I’ll admit I like to be in control. But in this case, I think it’s warranted, because every relapse leaves a scar. While I will recover from my relapse, I will never quite recover to the degree of “health” that I was before the relapse. So, a person needs to take these things quite seriously. This isn’t the kind of scar that one would say there is a “story of beauty” behind it. If I knew what my triggers were I think this disease would be a lot easier to handle. I could simply choose to avoid them and I could be relapse-free. But I don’t know what they are; they are ever-changing. So, I have to make a decision before partaking in any activity. Do I chance doing something and risk a dreaded relapse? Or do I hold back, essentially put my life on pause, to decrease my odds of a relapse (note: Sometimes I have a relapse for seemingly no reason at all.) I’ve grappled with this decision in a multitude of ways. In the beginning I had little knowledge ofPEM; my relapses seemed random. So, I just lived my life as much as I could the “old” way and suffered the consequences. This didn’t last long; it wasn’t sustainable. It caused relapse after relapse. By this point, I wanted to wrap myself up in a cocoon and do nothing that could trigger a relapse. While this won’t eliminate all my relapses, it certainly could eliminate a lot of them. But this was not living! So, I adjusted and lived my life at a reduced pace and took what came with it, less relapses — but still, there were relapses. Along the way I learned about PEM and started learning about what some of my triggers were. Things got a little better as I was able to selectively pick and choose my activities, successfully avoiding a really good number of relapses. Then, I swung a bit the other way. I started to convince myself, after this “better” period of living, that I really wasn’t all that sick. That I could do much, much more. And so I did. And I paid a heavy price. I relapsed, and I relapsed, and today I still pay the price for these relapses. The scars I created live with me still. I wanted to jump right back into that safe cocoon. But then, what kind of life would that be? There could be a lot of experiences I’d be missing out on where I could do just fine, be relapse-free, and for a little bit, just be fully me.  Oh…what a dream that would be. On the other hand, if I don’t make this choice, if I don’t choose to have some semblance of a life, then ME has won – it’s taken my heart and soul. On the flip side, hauntingly, there’s that very real fear of a “forever scar.” What was left to try? The middle ground. I try to do what I can to avoid relapses (there are no guarantees here), but yet I also very selectively choose where I am going to spend my precious energy. It’s a bit of a gamble, to be honest, but I feel like this is a place that I’m going to try to live in for a while. I know that it will cause me disappointment often, leaving me still wanting to do things that I can’t or won’t do. And I know it may cause my loved ones to be disappointed by my failed appearances. I can only hope they understand that I’m just as disappointed. At some point though, I’m going to have to learn to move past this disappointment because that’s not a place I want to live. I want to live in the land of acceptance. I thought I was there, but I realized that I was simply faking myself out. It was a reality check – as real as every day has been – apparently it still wasn’t quite as real for me as I needed it to be. However, it’s real now – I finally feel like I’m on the path of acceptance and I just have to trust that my loved ones will come along with me on this wild ride and accept it as well. Because I choose to live a life of the best of the best experiences, and acceptingly letting go of the rest. I choose to live, but selectively live, despite my chronic illness.

Lisa M Alioto

Myalgic Encephalomyelitis and Post-Exertional Malaise: How to Cope

For the past six years I have lived with myalgic encephalomyelitis (ME). It’s a multi-system disease that affects the neurological, endocrine, immune and energy metabolism systems. Its hallmark symptom is post-exertional malaise (PEM). PEM is a reduction in functioning and a severe worsening of symptoms after even minimal exertion. The tricky part is “minimal exertion” may change daily. What I can do just fine one day, will cause me to relapse and spend the day in bed the next. And this is where my fear comesin — the not knowing what my triggers are. I’ll admit I like to be in control. But in this case, I think it’s warranted, because every relapse leaves a scar. While I will recover from my relapse, I will never quite recover to the degree of “health” that I was before the relapse. So, a person needs to take these things quite seriously. This isn’t the kind of scar that one would say there is a “story of beauty” behind it. If I knew what my triggers were I think this disease would be a lot easier to handle. I could simply choose to avoid them and I could be relapse-free. But I don’t know what they are; they are ever-changing. So, I have to make a decision before partaking in any activity. Do I chance doing something and risk a dreaded relapse? Or do I hold back, essentially put my life on pause, to decrease my odds of a relapse (note: Sometimes I have a relapse for seemingly no reason at all.) I’ve grappled with this decision in a multitude of ways. In the beginning I had little knowledge ofPEM; my relapses seemed random. So, I just lived my life as much as I could the “old” way and suffered the consequences. This didn’t last long; it wasn’t sustainable. It caused relapse after relapse. By this point, I wanted to wrap myself up in a cocoon and do nothing that could trigger a relapse. While this won’t eliminate all my relapses, it certainly could eliminate a lot of them. But this was not living! So, I adjusted and lived my life at a reduced pace and took what came with it, less relapses — but still, there were relapses. Along the way I learned about PEM and started learning about what some of my triggers were. Things got a little better as I was able to selectively pick and choose my activities, successfully avoiding a really good number of relapses. Then, I swung a bit the other way. I started to convince myself, after this “better” period of living, that I really wasn’t all that sick. That I could do much, much more. And so I did. And I paid a heavy price. I relapsed, and I relapsed, and today I still pay the price for these relapses. The scars I created live with me still. I wanted to jump right back into that safe cocoon. But then, what kind of life would that be? There could be a lot of experiences I’d be missing out on where I could do just fine, be relapse-free, and for a little bit, just be fully me.  Oh…what a dream that would be. On the other hand, if I don’t make this choice, if I don’t choose to have some semblance of a life, then ME has won – it’s taken my heart and soul. On the flip side, hauntingly, there’s that very real fear of a “forever scar.” What was left to try? The middle ground. I try to do what I can to avoid relapses (there are no guarantees here), but yet I also very selectively choose where I am going to spend my precious energy. It’s a bit of a gamble, to be honest, but I feel like this is a place that I’m going to try to live in for a while. I know that it will cause me disappointment often, leaving me still wanting to do things that I can’t or won’t do. And I know it may cause my loved ones to be disappointed by my failed appearances. I can only hope they understand that I’m just as disappointed. At some point though, I’m going to have to learn to move past this disappointment because that’s not a place I want to live. I want to live in the land of acceptance. I thought I was there, but I realized that I was simply faking myself out. It was a reality check – as real as every day has been – apparently it still wasn’t quite as real for me as I needed it to be. However, it’s real now – I finally feel like I’m on the path of acceptance and I just have to trust that my loved ones will come along with me on this wild ride and accept it as well. Because I choose to live a life of the best of the best experiences, and acceptingly letting go of the rest. I choose to live, but selectively live, despite my chronic illness.

Community Voices

I Relapsed in my Life, Not my Chronic Illness

My Comeback!

About 10 years ago I had quite a big revelation.  I had a pretty good life – good job, great friends and family, and essentially no complaints or problem areas.  Sounds great, right?  I also realized though that my life was just being lived, I wasn’t an active participant in it.  I wasn’t truly living.

After much contemplation, I realized that part of the problem was that my life was being dictated by my fears.  In addition, I wasn’t really actively pursuing my dreams.  If they happened, great, but in reality they likely were not ever going to happen because I wasn’t doing anything to make them happen.   So, I set some goals.  Real, hard goals.

I decided my part-time job stocking liquor store shelves really wasn’t “working out.”  (Who was I fooling?)  So instead, I went out and bought a pair of great workout shoes, fun workout clothes, and I joined a gym.  When the gym got old, I pursued more hardcore workouts from home, like the Beachbody Insanity and T25 workouts.   Result:  I felt great!  I was physically in the best shape of my life and I loved how toned and muscular little me was!

So, I decided to take it one step further.  Remember, the dream part?  Well here’s where that comes in. I wanted to accomplish something big so that when I had a challenge later in life (little did I know there would be so many!) that I would have something to fall back on (“if I can do that, I can handle this!’).  So, I spent six months boosting up my workouts in preparation to climb Mount Kilimanjaro.   It’s the highest free-standing mountain in the world and was my first mountain.   Once again, I bought the gear – the best hiking boots, poles, winter camping equipment, etc.  I was determined that I wasn’t going to let something little like the wrong gear become a challenge.   And I did it!  I summited Mount Kilimanjaro in 2008.   By far the most mental and physical challenge of my life.  As I had promised myself, I gave it all the demons that had been haunting me all my life to that mountain and I came out of the clouds (literally) lighter and with a clean slate.  Ready to achieve more dreams.

Next leap of faith:  I LOVED the coaching I was doing at work.  But I wanted more.  I wanted to see if my coaching skills as an attorney and manager of a legal team would translate outside my direct reports.   Opening a business, designing a logo, buying business cards, marketing it…  Well, it all seemed overwhelming.  However, little by little, I achieved each step.  Eventually I had a wide variety of clients coming to me from a variety of marketing initiatives I had designed.

Right around this time though, things started sliding for me physically.  First, I was finding my quality of sleep was drastically declining to the point it was affecting my motivation and energy levels during the day.  And then more symptoms came.  After a year of trials and many errors by my physicians, I was eventually diagnosed with myalgic encephalomyelitis (ME).  And then more medical issues arose.

And that’s when I relapsed in my life.   I started letting my life simply be lived again; I was once again just going through the paces of each day, again and again.   I was afraid to do anything in fear it might cause a relapse in my condition, or worse, what I call a “blackout” – where I get so exhausted that I simply lose consciousness for hours on end, waking up feeling like a truck had hit me.   Let me tell you, once you feel that, it’s engrained in your mind. And you start to want to avoid doing anything to prevent that feeling from arising.

So, I stopped living.  In part, it was easy because so may friends left once I got diagnosed (at the time, it was a real hit; now I see it as a win.  I know who my real friends are now; they are the ones that stayed).   Even so, I wasn’t going out much anymore. I craved my couch at all times and I shied away from all invites out of fear that I wouldn’t be up for it that day.  In short, I let my #ChronicIllness cause a relapse in my life.

At some point, whether from boredom, encouragement from friends, or both, I decided my illness was not my whole life and I wasn’t going to let it control my life.  Yes, I was still going to proceed with calculated caution to avoid a relapse in my condition, but I was not going to put my life on an indefinite hold.

So, I started living again!  While I can’t work out because of my condition, I found meditation and yoga to be incredible new sources of relaxation.  I started learning Tai Chai.  I also threw myself back into my coaching, resulting in achieving a full client base built from returning clients and referrals.  I also began writing and seeking out publishers for my articles.  Quickly, I became a globally published author – how exciting!  Most recently, I’ve even started my own blog.  I’ve also co-founded the Minnesota ME/CFS Alliance, a non-profit organization dedicated to helping Minnesotans with ME/CFS.

Moral of the story:  Sick or not, truly living your life, being an active participant in it, and driving your successes is so much more rewarding than anything that will just come to you by happenstance.  Also, letting your fears dictate your life is very self-limiting.  Being appropriately cautious and knowing your medically-related limitations is one thing, but letting them hold you back from everything is another.  There is still so, so much we can do.

Dare I say, my chronic illness has actually brought more fulfillment to my life, including focusing my success on helping others rather than just solely creating personal successes.   To be honest, while the pain is real and in my face daily, I think ME has made me a better person on the inside.   I’m still me, but I’m more me.  I give more, I love more, I appreciate more, I am more.

Community Voices

Where does your chronic pain impact your life the most?

For me, it's hard to say. There's a work impact, a relationship impact, an quality of life impact.... All to differing degrees and levels. #ChronicPain #MECFS

95 people are talking about this
Community Voices

Where does your chronic pain impact your life the most?

For me, it's hard to say. There's a work impact, a relationship impact, an quality of life impact.... All to differing degrees and levels. #ChronicPain #MECFS

95 people are talking about this
Community Voices

How much do you tell your employer?

I would prefer to be very transparent, but comments such as, "you're so 'lucky' you get to work at home" or when I have completed something well ahead of deadline it's attributed to "because you get to work at home" and not my skills have created a chilling affect to my sharing. I did eventually say something about the second comment, which helped the situation (perhaps it was an unconscious stream of thought?).

How do you all handle your health issues when it come to work? Openly share? Share only when necessary? #ChronicPain #Work #MECFS

90 people are talking about this
Community Voices

Where does your chronic pain impact your life the most?

For me, it's hard to say. There's a work impact, a relationship impact, an quality of life impact.... All to differing degrees and levels. #ChronicPain #MECFS

95 people are talking about this