Tag Archives: Conditions and Diseases

This is My Body on Exercise… Or, Risks of Exertion as an ME/CFS Patient

When there are days you have to sit down to rest after taking a shower, exercise can prove next to impossible. It can really be a pain in the… well, it’s painful. We’ll just leave it at that for now.

ffacd0264c073d8bc7c4ce5a70f46cd3
Exercise is important to a healthy lifestyle and a healthy body.  It can lift spirits, provide immunity support, strengthen and tone, and keep everything in good working order… But what happens if exertion is the very thing that makes your body sicker?  The thing that is capable of completely incapacitating you?  Welcome to living in a body run by ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome).  This is my nightmare.

Before I got sick, I belonged to a local gym and enjoyed going 4-5 times a week.  There was a yoga class I loved, a spin class I was finally getting good at, weights that were toning muscles I had forgotten were there, and a cardio room that I used to meet my sister-in-law in so we could use the elliptical machines together.  It wasn’t always easy to go and sometimes I skipped, but I tried to make make it a priority on my schedule.

Fast forward to the present.  My body has undergone quite a few changes in the passing years.  Harboring several different health issues and a humdinger of a coupla chronic illnesses, the gym has become a thing of the past.  Almost like a fairy tale I made up to amuse myself.  It’s been almost seven years since my ME/CFS diagnosis, and a couple of those have felt like the longest years of my life.

What most people don’t understand is how I can usually look fine on the outside while saying I’m so sick on the inside.  Typically, I look pretty healthy.  A little tired, perhaps.  Certainly carrying more weight than I should and than I used to… In general, however, I look like your neighbor or your sister or someone you would pass at your gym.  Meanwhile, the inside of my body is a wreck.  And one of the main things unseen is how it can take every bit of energy I have to make you believe I feel as well as I look.  *sigh*  It’s something of a curse, at times, because people with ME/CFS have to spend a great deal of time trying to convince people that they really are illEven though some are extremely ill.

A bad day with my puppy protector. I could not handle any outside noise that day so I had to wear ear plugs, my head was pounding so I was using an ice pack, but my body temperature was lower than normal and wouldn't regulate, so I was covered with two blankets. *sigh*
A bad day with my puppy protector. I couldn’t handle much noise that day so I was wearing earplugs, my head was pounding, hence the ice pack, but my body temperature was lower than normal and wouldn’t regulate, so I also had two blankets covering me. *sigh*

 

Please believe that I am not lazy!  I wish my body was cooperative.  I wish I could exercise like people tell me I should.  The truth is, everything goes haywire if I push too hard.  If you have to sit and rest after washing a sink of dishes, you’re probably not at your healthiest… And while I am MUCH healthier than severe ME/CFS patients, it’s nowhere near the person I was.  (For an absolutely heartbreaking look at what severe ME/CFS can look like, please read this recent article from The Washington Post about Whitney Dafoe.)  Some patients can’t leave their homes – others are confined to their beds.  It’s a blessing not to be stuck in bed, and a continuous source of gratitude to know I am not housebound.  I walk as often as possible, manage to work 20 hours a week, and still have enough energy at times to go out with friends and family to a movie or restaurant.  Heck, when all the stars are perfectly aligned, I might even manage a short hike!

hiking boots

 

What I would ask you to know, however, is that it comes at a price.  When a reasonably fit, healthy person hits the trails or goes for a run they might have sore muscles after an intense workout, but they can get back out and do it again within a day or two.  For someone living with ME/CFS, exertion of any kind (physical, mental, emotional) can lead to days, weeks or even months of recovery time.  In some cases, overexertion is the reason a mild or moderately ill patient ends up permanently bedridden.  It’s a terrifying tightrope to walk.  Never knowing what a few extra minutes of walking might do.  Never knowing if too much housework in a day will put you in bed for weeks.  Living under that black cloud of uncertainty is its own form of mental exhaustion.  My body doesn’t react to activity like it should.  Sometimes walking from the bedroom to the kitchen causes such oxygen deprivation that I have to lean against the counter until my breath comes normally again.  There are days I may manage to get to a hiking trail, only to discover a quarter-mile in that my heartbeat has become increasingly erratic, that I’m staggering because my equilibrium is way off, or that my body temperature won’t regulate and I’m sweating profusely despite the cold or shivering despite the heat.  I’ll confess – there are times I’ve had to sit down in the aisle of a store or abandon a cart full of groceries simply because my legs became so weak that I couldn’t stand anymore.  It has come down to making the decision to finish a task or have enough strength to drive home.  It’s frightening to be okay one moment and find yourself helpless the next… Every system of my body revolts, sometimes at a moment’s notice, and there is nothing I can do but ride it out.  So many random symptoms might attack – chest pains, missed heartbeats, brain fog – just to name a few…  There are so many severe potential risks to being active that, if I’m not having a good day to begin with, it really isn’t worth taking a chance.

Other times, however, I do risk it.  To enjoy the outdoors, to feel like I have a life, to maintain some independence… I tell you all these things so you know the effort and energy it takes, and so you can be a bit gentle with me, or anyone else you know with ME/CFS.  I would also ask, however, that you remember sometimes we dare to dream… we dare to take the chance.  There are some things in life that are worth it.  By asking you to understand, I’m saying you’re probably one of them..  🙂

 

One of my favorite things to do when there *is* leftover energy is to get outside and hit the trails.
One of my favorite things to do when there *is* leftover energy is to get outside and hit the trails.

 

 

As always, thank you for reading!
~h

 

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Choose Kindness & Compassion This Season

Don't Confuse Bad Days for Weakness

Pain has a language all its own.  Pain and suffering mark time differently. Pain is voracious and consuming.  Pain comes in many shapes and forms.

Do you ever struggle with pain?  Not just the physical kind – although that can definitely stop you in your tracks!  I mean “pain” in general. Physical, mental, emotional… Each type is equally draining in a way.  Equally clarifying to an extent.  And each takes a toll on the person wearing it around day after day.

I’ve been thinking about suffering quite a bit today.  Marveling at the way it is able to barge in and command the attention of the most seasoned warrior.  Considering the capability it has to lay waste to all things bright and shining in a person’s life.  In any of its forms and afflictions, pain can potentially devour the stoutest heart…

The past few days have been an arduous test of inner strength and coping for me.  My pain scale is out of whack compared to the norm, I think, so I won’t try to assign it a number.  Let’s just say it has been ‘up there’.  It’s nothing new and certainly something I’m usually adept at dealing with, but now and then it manages to make me want to stop in my tracks and curl up on the floor.  That is typically the case when I’m in pain AND my empathy meter is in the red as I watch someone I care about suffering in their own private misery.

Having what is considered an “invisible illness“, I’m used to looking one way on the outside and feeling the complete opposite within.  It’s actually a challenge I accept daily to put on a brave face and downplay my pain or symptom flares.  Wearing that mask may not always be the best choice as it makes it more difficult for people to understand when the cracks start showing… They thought everything was fine – I seemed like I felt okay!  It also increases the ‘invisibility’ sometimes.

 

don't look sick

 

People are fearlessly and tirelessly inconsiderate when lacking in proper information and understanding.  There are a lot things that chronically ill people don’t want to hear – believe me, I’ve heard them all – but when you mask pain all the time, I guess it goes without saying that sometimes others won’t know anything at all about the private war being waged inside.

I’ve been in a lot of pain lately… although most people probably haven’t noticed anything amiss.  I prefer to keep it that way, for the most part, but I can’t help but want to reach out healing hands to all the other people I know in similar situations even when I know they’re trying to hide behind a carefully constructed façade of “FINE”.  I have loved ones struggling daily with physical ailments, psychological anguish, mental illness… They each go through bouts of misery and torment and I would offer them all a restorative potion if I could.  This post isn’t about that, however. It’s about something much smaller in the grand scheme of things.

This post is about the responsibility we each have to offer support and healing to those around us.

There is so much negativity and hate in the world.  Everyone you see is dealing with some sort of struggle that has probably taken root in the center of their lives – consuming, ravaging them from the inside out.  Just because you can’t see someone’s anguish does not mean that it is not there.  Just because you have struggles and trials of your own does not absolve you from being considerate of others marching along in their own grief and pain.

I’m not here to judge.  But please remember that not all disabilities are visible to the naked eye.  Not all pain is readily ascertained on a scale of 1 to 10…. And, unfortunately, not all hurts are healed with a kiss and a Band-Aid.  Although that doesn’t mean we shouldn’t try.

My challenge to you, during this most festive and generous season of the year, is to reach out to someone who might need a friend.  Someone that might need a shoulder to cry on, a companion to sit with, a confidante to vent to, or a caring hand to carry their groceries to the car.  Take time to assess your own needs and care for yourself, absolutely!  But bless yourself further by taking a moment to be the light in someone else’s day, as well.  What may seem a small gift to you could be the greatest present of all in their eyes, and just because you are not aware of the impact of your actions doesn’t mean you shouldn’t choose them with care and compassion each day.

And if *you* are the one that has been beaten down to the point of lying curled up on the floor, please remember that people love you.  People care.  There are those that would give whatever they have to bring you joy and relief.  But most of all, remember that YOU are stronger than you give yourself credit for.  I don’t have to know you to say that I believe in you… and I hope you won’t give up the fight.

i can do it

 

~h

Know What I Meme?

Do you enjoy seeing a funny meme pop up on your social media thread?  Reading a meaningful one, perhaps, that inspires or challenges you?  On the off-chance that you’re not familiar with what a “meme” is (Don, I’m looking at you!), let me give you a quick introduction.  A meme (rhymes with team) is “an idea, behavior, or style that spreads from person to person within a culture”.  The most common modern example is in the form of internet memes – usually funny, cute images with a witty saying or quote.  They’re engaging and entertaining, and occasionally they offer a more in-depth observation about life and the human condition.

A close friend of mine posted a meme on social media yesterday and it has been on my mind ever since.  It expresses the fear that people don’t actually like you and just tolerate you hoping you’ll leave them alone.  (Notice I said a close friend posted this.  If they find their way here and read this, I have to urge them — please know you have no reason to fear.  You are genuinely cared about – not merely tolerated – and an asset and joy to many!)

"I havea a massive fear that no one actually likes me, rather everyone is just politely tolerating me hoping I will leave them alone."

What was instantly ironic for me, upon seeing this meme, is that I had recently expressed a very similar fear in more traditional communication.  It’s something many people might think but don’t necessarily say.   Either way, the words with this image portray a deeply guarded secret I’ve carried in my heart for a long time.

Most of my acquaintances would probably agree I’m fairly positive and try to keep an upbeat attitude.  Those that know me more substantially, however, are aware that sometimes that face is an act.  I am embarrassingly sensitive, and that sensitivity, in fact, can breed and amplify negative things…  There are days I struggle with depression and crippling insecurities that necessitate wearing a public persona so no one knows the things I keep inside.   Days when my faith wavers and bends like grass in the wind.  Try as I might, I can’t always keep the fears at bay… One of the greatest of which, is that I am not only unloved but that I am, in fact, unlovable.

Positivity has not always been easy for me.  When younger, I was actually quite abusive to myself.  Self-deprecation was a foreign language I studied and mastered (and still speak to this day), and I would continually compare myself to unrealistic beauty standards (which I still manage to do).  I was also physically cruel to myself in this pattern of self-destructive.  My eating habits were not normal and I would briefly deny myself food as a form of self-control and discipline… and perhaps the worst – I went through a period of time when I self-harmed.  I was a “cutter”.

There’s still enough shame in admitting that fact that I almost want to delete most of the last paragraph.  Part of my mind whispers, however, that perhaps the admission will help someone else one day so I should leave it out there for people to see.

amazing how much long sleeves and a fake smile can hide

“Cutting” typically involves making scratches or cuts on your body with some sort of sharp object until you bleed…  I’m sure several people close to me know I went through a couple of difficult times and still bear a few scars as witness.  To the great majority this will be a surprise, though, as I took great pains to hide the fact and my smile stayed fairly constant on my “public” face.  Those who have never had this sort of tendency may not ever understand.  To people who have self-harmed, self-medicated or engaged in any other self-destructive behavior, I probably don’t need to explain any further.  For me, it was a way to deal with all of the things I had no control over – such as feeling unworthy and unlovable.  The pain I created for myself, however briefly, overshadowed the pain inflicted by life, and the endorphins released offered a false sense of peace for a short time after.  In the end, it was more damaging than helpful and I wish I could go back in time and tell myself that now…  (*Please see notes at the end of this post!*)

Seeing people post images or quotes on social media that echo the turmoil and heartache I felt during those chaotic years bring back a lot of memories.  The majority are not good, but there are lessons learned from the mess those years left.  One of the most important, for me, is the idea that I will always be flawed, I will always be “broken” in a multitude of ways… Yet, those facts do not make me unlovable.  They merely make me human and make up the sum of who I am.  I’ve spent a large part of my life believing people don’t actually like me, and that they could not – would not – love me if they could see all the damage and darkness in my soul.  The truth is much kinder, thank goodness, than my vicious inner voice… The truth is that we all have struggles and dark times. We all have concerns and inescapable fears buried deep within the shadows of our hearts.  Despite the flawed, imperfect parts of us, we are all deserving and capable of being loved.  The flavor and depth of fear is different for each of us, but I doubt I’m alone when I think people merely tolerate my presence until they can escape.  That does not mean that it’s true… However, if I continue to fall back on a lifetime of self-destructive patterns, it makes it seem plausible.

amy bloom

So what to do?  I wish I knew the answer and could share it freely with you.  The best I can offer, I think, is a glimpse into what helps *me* with this struggle.  Try to find positive things to be grateful for every day.  Joy breeds joy and whatever you fill yourself with is going to multiply, so do try to treat yourself with kindness!  More importantly, however is being present in life… One of the most empowering things I do is take risks and learn from possible rejection.  It makes it sound easier than it is, to be sure, but nothing wonderful is gained without first taking a bit of a risk.  John A. Shedd wrote, “A ship in harbor is safe, but that is not what ships are built for.”  There is something beautiful and true in that simple sentiment.  As humans, love, I believe, is the very essence of who we are – our very nature.  It would be easy to avoid rejection and pain by staying safe at port, but it is not truly how we’re built… And while we may not always be fully loved in return, those that do love and value us usually make that sentiment known in their words and actions.  The trick, reader, is to teach your heart to trust that it is true.

let-someone-love-you-as-flawed-as-you-are

Love one another, dear friends, and be kind…

 

~h

 

 

 

*** PLEASE NOTE:  Regardless of my past, I DO NOT endorse self-injury or harm and highly recommend that anyone considering it or doing  anything of the sort, please find someone you trust and reach out to them!  Please don’t use this pretend therapy of creating new wounds in an effort to heal old – it WILL. NOT. WORK.  If you can’t talk to someone you know, check out any number of available websites such as this one, this one, or this one.

 

Fibro Fog Hits an All-Time Low…

I’d like to say this will be an interesting and articulate blog post, but the truth of the matter is that I’m really struggling this morning and may not be able to correctly string words together into sentences.  The cognitive disaster known to many as ‘Fibro Fog’ has been my nemesis this morning and it’s not showing any signs of retreat.  Last week was difficult because of physical discomfort – nerve pain was off the charts a few times, a couple of days when I walked it felt like there were shards of glass in the bottoms of my shoes (when I even put shoes on), and a couple of days ago was exhaustion and fatigue laden…. Apparently today is “battle for the brain” and I’m the contestant.

Let me just say what’s bothering me and move on — I was trying to do some household/bill related items about 30 minutes ago and I couldn’t remember my social security number.  That is the lowest the fog has made me feel.  (Of course, just making that statement is relying on me to remember a time that it has been worse… and since I’ve just proven that my memory is off-the-charts bad today, I’m not exactly trustworthy.  *sigh*)  After being unable to recall more than the first three numbers and that there might be a ‘4’ or a ‘5’ somewhere in the remaining digits, I was stumped.  Absolutely and completely stumped.  I immediately burst into tears and now want to go back to bed and lay there under the blanket until my mind has returned from its sojourn in la-la land.  (It seems I’m not struggling with word recall today – that was Saturday during my fight through fatigue.)

I’m ashamed.  Embarrassed, humiliated.  All of those icky words that make you want to duck your head and avoid eye contact.  Luckily my husband was the only one to witness the demise of my memory and seeming departure of my intellect, however, he quickly became uncomfortable with the force of my sobs and went back to doing some work around the house.  I can’t really blame him, but sometimes it’s easy to want to lash out because of his obliviousness to the terror I feel and the overwhelming sense of dread that surrounds me like a cloud.  Questions swarm to the forefront of where my mind used to be – Am I going crazy?  What if this never gets better?  How long will the fog last this time?  What if it doesn’t go away?  It’s not his fault that he doesn’t understand – I’m actually glad he has no idea what this feels like!  But of all the things that fibro and ME/CFS are stealing from me, this is one of the worst!

There’s no real point to this post except to offer empathy and understanding to the people out there that DO know what I’m talking about.  That have a real fear that they wouldn’t be able to tell someone their phone number if caught at the wrong time.  The people who take precautions so that if they’re asked for their home address they’ll have some sort of back-up in case they don’t know where they live…  It’s horrible and scary and humiliating… and I understand.

much love & support,
~heath

Go watch the video on this great post & read some other views:

http://fibromodem.wordpress.com/2012/05/28/fibro-fog-feels-like-early-dementia/#comment-1048

Learning Fibro As I Go

I never know quite how to start a post about Fibromyalgia and Chronic Fatigue Syndrome… There are so many things that go through my mind that I can’t always organize them into anything that I think is interesting or informative.  Of course, there are also times that my brain fog is so bad that it’s not possible to post anything at all.  Those days are always rough… The last 24 hours or so have been rough for a different reason.  A burning, tingling, roving pain reason.

Since my diagnoses I’ve spent more than a bit of time researching clinical studies, doctor’s websites and the blog posts of other people like me.  With both CFS and Fibro there are many symptoms that I’ve never experienced. One of the weird quirks of each illness is the symptom set is different for each person.  There’s a certain set of criteria that each patient must fall within, but the rest of the symptoms vary from person to person.  I’m so thankful that other people share their thoughts and insights – it’s reassuring to know I’m not losing my mind – but oddly enough, it creates strain at home.  Has anyone else experienced that?  Earlier this evening I was talking to my husband about a new kind of pain that’s been bothering me in the last 24 hours.  He asked me if I had ever considered whether or not reading information from other people ever ‘encouraged’ me toward adding new symptoms to my list… A very legitimate question.  It does happen and I can’t say I haven’t done it at some point.  With all of the information available on the internet – good and bad – it’s easy to become convinced that health problems are much worse than they actually are.  Researching a set of symptoms can return results ranging from the common cold to rare, untreatable diseases.  I try not to do that… If something is wrong with my health, I try to seek care and advice from a healthcare professional.  However, sometimes with CFS and Fibro it isn’t that easy.  There isn’t a doctor in my area that specializes in either of my conditions and the field is still undecided about what causes either illness and what courses of treatment work best.  The combination can bring about less than satisfactory results when I visit my doctor’s office.  Although I trust and respect him, there are days I’m just not up to the stress of not having concrete answers and solutions.

My husband does his best to understand all that and tries to provide support any way he knows how.  Problems only arise when I need one kind of support and he tries to provide another.  Asking if I’m adding symptoms due to research was his gentle reminder of the pitfalls of relying on so much outside information…  I’m grateful he’s looking out for me, but it’s not easy conveying how helpful it is to put a name or description to a symptom that I thought might only exist in my head.  Being able to breathe a sigh of relief because I’m not, in fact, going crazy and there are other people who understand the things that are happening to me.  Even the things I haven’t spoken aloud to anyone.  I’m doing my best to try to communicate with him that part of having ‘invisible’ conditions means that I need positive, uplifting support no matter what.  On the flip side – I hope that I’m appreciative enough of the effort that he’s making.  My health concerns him too, and I know he’s just worried and trying to help.  Living with this is a strain on both of us and I hope that we can continue to refine our communication styles and grow stronger together…  Even though he won’t ever fully understand what I’m going through, I can’t imagine dealing with this without him!  We may not always see eye to eye and I know he can’t read my mind and always anticipate what I need, but I’m blessed to have someone who loves me and tries to do what he can to bring me peace, hold my hand and walk by my side.  Even in the midst of all this pain and confusion, I’m so very blessed…  🙂

love you, buddy!